Well folks, I can't believe it has been over a month since I last wrote a post! I'd like to take this opportunity to welcome you all to winter, well if you're in the northern hemisphere anyway, and happy second day of advent! Hope that opening those little doors every morning has revealed some treats! I'm very lucky this year and have four advent calendars on the go!!!! As well as a wee bit of chocolate, I get a Liz Earle mini from their advent calendar, a mini pot of nail polish from my Ciaté one (Thank you so much Lesley and Laura for this) and on my iPhone I get a photo from A Year to Celebrate 2012 app, to remind me what a great year this has been.
Anyway, where did I leave off with this blog ... (Goes back to read last post) ....
Oh yes, I remember now ... I'd seen the registrar and they thought my scan was all clear. Well, after a week of waiting back at Mum and Dad's, I came back to London to find an answer phone message from the registrar confirming that the scan report was in and that it was indeed all clear - phew! The message had been left the Monday after I'd been to the hospital (a week before I found it), so why couldn't the registrar have called me on my mobile? They had the number! Oh well, what was done was done. Now I could get on with enjoying my time off before my planned return to work in the last week in November. Oh yes, and I was recovering from my treatment and building my strength back up ;-)
During my week at Mum and Dad's I went down to Dorset to celebrate the christening of a good friend's daughter. This was a lovely day and I really enjoyed catching up with everyone! Thank you so much Poppy for inviting me to your special day!
Half term week bought my good friend Sarah to London and with it a lovely catch up session and a trip to the cinema to see the lovely Mr Bond! ;-) I really enjoyed Skyfall but was thankful that the seats were comfy! I'd recommend seeing it if you are one of the few that hasn't already!
I think that bought me to the end of October and therefore into the month of my return to work - eek! I was feeling loads better already and my cetuximab rash was beginning to clear up, so I was looking less scarey too. A trip to the hairdessers for a colour and cut helped with this too. I was even managing to stay awake all day (no more afternoon naps). I was getting out on my walks and enjoying some lovely sessions with my yogi! It was time to start planning again. I wanted to do some sort of retreat to try and help set me on a healthy footing. Initially I wanted to try and fit something in before going back to work, but in the end I decided that I'd prefer to do something when I was sure I'd have the energy to enjoy it and make the most of the experience. Therefore, I have booked myself onto an 8 day retreat in Costa Rica in February, which I am SOOOOOOOO excited about!!!! It is aimed at people affected by cancer and as well as yoga, meditation and healthy cooking classes, there is a trek up a volcano, rainforest hikes and visits to the local villages! It all sounds so much fun and just up my street! Hopefully my sister will be able to come too, but it will depend on her work - she's just changed jobs. If she can't make it, off I go on my first holiday on my own! How have I got to be a single 34 year old without doing that before? Anyway, my aim now is to try and be as fit and healthy as I can be to make the most of my trip.
November has bought with it the opportunity to meet up with friends, both old and new. I had a lovely pamper session with Lucy, a day of culture at the Science Museum and V& A with Jo and Oliver and a lovely walk in the park with Nikki and Callan. I have also managed to meet up with some of my lovely new friends that I have met through twitter that have also been affected by bowel cancer. There are far too many of you to mention individually but it has been great to meet you all and I hope that we can meet again soon - you are all so lovely and an inspiration and so special to me - thank you! I wouldn't have got through this year without you all! A special mention must go to Paul though, who invited me to join him and his friends to go to Twickenham to watch the England v South Africa rugby match. Despite the rain and the result, I had a really fun day! Thank you sooooo much Paul! :-) Hopefully over the coming months, I will be able to meet more of my twitter family!
Friday 23rd November bought with it the return trip to the hospital to see my oncologist. I'd been to the hospital a few days before to have blood taken so that the test results would be there ready for my clinic appointment. It was time to see what the all important CEA had done in the weeks since chemo had finished. I must admit, I was very nervous about this appointment, although I knew in my head that I had done everything I could to beat the cancer and I was feeling great. Mum and Dad came up to London and Dad came with me to the hospital. After the usual wait, my oncology consultant called us through. She asked how I was and then told me that everything was looking good. The CEA was now 8, and whilst not back within the normal range, it had certainly dropped from the last time, 5 weeks earlier, and was the lowest it has ever been recorded at for me. Yay!!! As a result of this, she doesn't want to see me again until March next year! This means that my next hospital appointments are with my surgeon at the beginning of February and then with my oncologist in mid March! I can't believe that I am now working in months rather than weeks! Hooray!!!
OK, the next milestone to get through was my return to work! It seemed to come around so quick and I was really looking forward to getting back and seeing everyone again. Thankfully the 8am starts and long shifts are waiting a bit longer as my managers have agreed to let me take it slowly with a phased return. As a result, I am currently working half days and not every day. So last Sunday evening I set my alarm for going back Monday morning. This week has gone well and although I have been tired, I have still managed to have a bit of a life around work - I really didn't want to go back to work but be too tired to do anything else, even just the little things like do my grocery shopping or clean the flat, which is why I'm doing the phased return thing, even though it means a few less ££ at the end of the month. Anyway, week two beacons this week, so hopefully that will go as well as last week. I've tried to be a bit prepared and have made some stuff for lunches that are in the freezer, and planned my other meals - hopefully I'll be able to resist the pasty shop at the station again, although they smell sooo good! ;-)
Now, I know many of you will be aware that November is the month of the dodgy tash in aid of Movember, raising money for prostate cancer. Well, did you know that December is the month of the dodgy beards? Decembeard is to help raise money and awareness of bowel cancer and so is therefore an event that is close to my heart. Both Bowel Cancer UK and Beating Bowel Cancer are hoping to get people to raise money for them by growing a beard. Now, as this is not something I can do very easily, I have decided to wear a cut out beard to raise money for both of these wonderful charities Now the plan at the moment is to wear the beards on 27th December and I am asking for sponsors for this. I know it's not the best time of the year for spare change, with Christmas just around the corner, but if you have any spare pennies I would be ever so grateful if you could bung them my way, via www.virginmoneygiving.com/RachelVince Thanks ever so much! Now, anyway, 27th December is my first live shift back at work, so it will be 11 hours sitting in the office. I will get photographic evidence that I will be wearing my beard though and I will of course wear it too and from work on the train and when I am out and about on my lunch break. I just have to figure out how I am going to eat my lunch and drink my tea - through a straw maybe?!?
I think that's about all my news for now ....
take care everyone
xxxxx
Sunday 2 December 2012
Friday 19 October 2012
Is this it?
Sorry it's been a while since I last blogged but it's been a busy couple of weeks. I've managed to go to the hospital 6 times in the last two weeks! That sounds a lot doesnt it, even for me!
Well, I guess, like many stories, it's best to begin at the beginning ...
I told you all about the fun I had on Monday 8th on what was meant to be my last chemo day, in my last post, so I guess I can actually skip over visit 1.
Visit 2 was Wednesday 10th for the chemo attempt 2. This was meant to be a straight forward 2-3 hours for the oxyplatin infusion and then the 5fu pump attachment (aka the infamous condom bottle). The day did also involve a shift change as sis handed over to mum as baby sitter. Well, needless to say, there was a bit of a wait to start treatment and so we'd been going about half an hour when it came time for sis to hand over to mum. I had managed to have both lines of my PICC successfully flushed and the chemo to start. I should say now I guess that my double PICC has been a bit temperamental and has had a tendency to block. Anyway, it only took a few minutes for sis to leave before the alarms on the IV to start going off to tell us that on both lines had obstructions! Uh oh! I guess the curse of me and mum was to strike again! I've had both PICCs used as at the same time as the oxyplatin infusion, I've been having a frolic acid infusion. For some reason, after working fine for half an hour, both lines had had enough. My lovely chemo nurse flushed both lines again, with great difficulty and put some urokinase (a clot buster drug) down the lines to try and clear them. After much head scratching by four of the nurses on the unit, including the two sisters, it was decided that they would try putting the infusions through at half speed. Thankfully this worked and the lovely drugs finally went into my system! I never seem to do anything the easy way and I guess my body decided that it wanted to make what is hopefully my last chemo session a memorable one for me and the staff! :-)
Thursday was a quiet and uneventful day, thankfully, and then it was time for the final condom bottle to be removed. Friday brought visit number 3 for this to be done. Because of the PICC problems on Wednesday I had been nervous that the pump wouldn't work, to such an extent that I'd even been weighing the bottle to check it was getting lighter! (it takes about a day or so for the condom to visibly shrink) thankfully the bottle was getting lighter! I guess at an infusion rate of 2.5ml an hour, it was slow enough to cope with even a partially blocked line. The condom bottle was dispensed with no problem, and my nurse gave both PICCs a good flush. I now am the proud owner of a redundant bottle pouch on a belt - I guess it'll be good for the hip flask! ;-)
Mum and Dad stayed with me over the weekend as I wasn't really up to much, thanks to the cumulative side effects of the chemo - tiredness was the main issue, along with some nausea, so I think I spent a lot of the weekend asleep! Not much entertainment value there for the parents! Sorry folks!
Right, week 2 started with visit number 4 on Monday morning - CT scan time! My nausea is normally eased by having a little something to eat, but as my scan was at 9.30am and I wasn't allowed anything to eat for 6 hours before, we had to come up with a new plan! Thankfully, those acupressure bands that you can buy for travel sickness seemed to help. Dad and I headed to the hospital and thankfully there wasn't too long to wait before I was taken into the scan room. Now, there have been issues in the past with me having scans (firemen, lost veins, PICC line problems) but thankfully this time went relatively smoothly. I had the lovely contrast put through my PICC and had the scan done, all in about 10 minutes. Then came the blip - they had taken off the dressing over my PICC to put the contrast through and only had a cannula dressing (basically a piece of sticky dressing with no gauze or anything) to cover it - they put that on to stop the PICC falling out (the PICC was held in by two stitches, so wasn't likely to go anywhere). Anyway, as the scanning department couldn't redress my PICC and I couldn't do it either as they hadn't cleaned it ( I had a couple of dressings with me) Dad and I headed up to the day unit and the nurses there kindly sorted me out with a cleaned and flushed PICC and it nicely blanketed up in dressings, all nice and cozy!
Visit 5 was for a blood test, so on Wednesday I headed back to the day unit for a hour and a half wait before a quick 5 minute job! You've got to love the NHS sometimes, don't you?! Anyway, that was all done and dusted, with an appointment made for a PICC flush in 10 days time.
Now today was visit 6 to the hospital and was to be by far the most significant. Today I was due to get the results of the scan and from that my consultant was to decide if I am cancer free!! Eek! Probably needless to say, its been a nervous few days and I've not been able to concentrate on much. Mum, Dad and sis came to the hospital with me - a bit like my entourage! We had a bit of a wait but nothing as long as normal and then one of the registrars called me through. Here goes! The registrar started off by saying that the scan report hadn't been done yet!!! What!!?? How can I have come to the hospital to get news like that!!?? Thankfully, he went on to explain that my oncology consultant had looked at the scan images though and as far as she could tell, there was nothing untoward on them. Phew!!! We'll have to wait for the formal report but hopefully that will say the same thing. The cancer markers in my blood (The CEA) are a little elevated, at 14 (normal levels are below 5, but I have had mine up in the 70s). This marker can be elevated as a result of chemo though, so it is not really reliable so close to chemo finishing. I am to go back to see the consultant in 5 weeks, by which time hopefully the marker will have dropped and it will be confirmed that I don't need any more treatment. The best bit today though was the fact that I had my PICC taken out (its left a lovely bruise!). For me this is a great indication that the doctors think that no more treatment will be needed as if they thought it was a possibility that I'd need more chemo then they would have said to leave it in for now! The registrar took the line out there and then! He did make a bit of a hash of dressing it though - typical doctor! ;-) Anyway, I am now PICC free and the days of wrapping my arm in cling-film to have a shower are in the past again! Yay!!
To celebrate what we consider a good news day, the family are playing sardines staying in my ickle flat tonight, so we got a take away and opened a bottle of wine. Now, I have not had any alcohol since before I started this second chemo encounter back in February, so having a glass of a very nice red went straight to my head!! Hic!
Anyway, on the day we are all standing up to cancer, I have and I think I have finally kicked its ass!! (I can say that, I've had bowel cancer!)
I would like to take this opportunity to thank everyone for all their support and love that you have given me as I have encountered chemo again - I wouldn't have got through it without you all!! Oh goodness, I must be a bit tipsy - I LOVE YOU!!! Hic hic ;-)
xxxxx
Well, I guess, like many stories, it's best to begin at the beginning ...
I told you all about the fun I had on Monday 8th on what was meant to be my last chemo day, in my last post, so I guess I can actually skip over visit 1.
Visit 2 was Wednesday 10th for the chemo attempt 2. This was meant to be a straight forward 2-3 hours for the oxyplatin infusion and then the 5fu pump attachment (aka the infamous condom bottle). The day did also involve a shift change as sis handed over to mum as baby sitter. Well, needless to say, there was a bit of a wait to start treatment and so we'd been going about half an hour when it came time for sis to hand over to mum. I had managed to have both lines of my PICC successfully flushed and the chemo to start. I should say now I guess that my double PICC has been a bit temperamental and has had a tendency to block. Anyway, it only took a few minutes for sis to leave before the alarms on the IV to start going off to tell us that on both lines had obstructions! Uh oh! I guess the curse of me and mum was to strike again! I've had both PICCs used as at the same time as the oxyplatin infusion, I've been having a frolic acid infusion. For some reason, after working fine for half an hour, both lines had had enough. My lovely chemo nurse flushed both lines again, with great difficulty and put some urokinase (a clot buster drug) down the lines to try and clear them. After much head scratching by four of the nurses on the unit, including the two sisters, it was decided that they would try putting the infusions through at half speed. Thankfully this worked and the lovely drugs finally went into my system! I never seem to do anything the easy way and I guess my body decided that it wanted to make what is hopefully my last chemo session a memorable one for me and the staff! :-)
Thursday was a quiet and uneventful day, thankfully, and then it was time for the final condom bottle to be removed. Friday brought visit number 3 for this to be done. Because of the PICC problems on Wednesday I had been nervous that the pump wouldn't work, to such an extent that I'd even been weighing the bottle to check it was getting lighter! (it takes about a day or so for the condom to visibly shrink) thankfully the bottle was getting lighter! I guess at an infusion rate of 2.5ml an hour, it was slow enough to cope with even a partially blocked line. The condom bottle was dispensed with no problem, and my nurse gave both PICCs a good flush. I now am the proud owner of a redundant bottle pouch on a belt - I guess it'll be good for the hip flask! ;-)
Mum and Dad stayed with me over the weekend as I wasn't really up to much, thanks to the cumulative side effects of the chemo - tiredness was the main issue, along with some nausea, so I think I spent a lot of the weekend asleep! Not much entertainment value there for the parents! Sorry folks!
Right, week 2 started with visit number 4 on Monday morning - CT scan time! My nausea is normally eased by having a little something to eat, but as my scan was at 9.30am and I wasn't allowed anything to eat for 6 hours before, we had to come up with a new plan! Thankfully, those acupressure bands that you can buy for travel sickness seemed to help. Dad and I headed to the hospital and thankfully there wasn't too long to wait before I was taken into the scan room. Now, there have been issues in the past with me having scans (firemen, lost veins, PICC line problems) but thankfully this time went relatively smoothly. I had the lovely contrast put through my PICC and had the scan done, all in about 10 minutes. Then came the blip - they had taken off the dressing over my PICC to put the contrast through and only had a cannula dressing (basically a piece of sticky dressing with no gauze or anything) to cover it - they put that on to stop the PICC falling out (the PICC was held in by two stitches, so wasn't likely to go anywhere). Anyway, as the scanning department couldn't redress my PICC and I couldn't do it either as they hadn't cleaned it ( I had a couple of dressings with me) Dad and I headed up to the day unit and the nurses there kindly sorted me out with a cleaned and flushed PICC and it nicely blanketed up in dressings, all nice and cozy!
Visit 5 was for a blood test, so on Wednesday I headed back to the day unit for a hour and a half wait before a quick 5 minute job! You've got to love the NHS sometimes, don't you?! Anyway, that was all done and dusted, with an appointment made for a PICC flush in 10 days time.
Now today was visit 6 to the hospital and was to be by far the most significant. Today I was due to get the results of the scan and from that my consultant was to decide if I am cancer free!! Eek! Probably needless to say, its been a nervous few days and I've not been able to concentrate on much. Mum, Dad and sis came to the hospital with me - a bit like my entourage! We had a bit of a wait but nothing as long as normal and then one of the registrars called me through. Here goes! The registrar started off by saying that the scan report hadn't been done yet!!! What!!?? How can I have come to the hospital to get news like that!!?? Thankfully, he went on to explain that my oncology consultant had looked at the scan images though and as far as she could tell, there was nothing untoward on them. Phew!!! We'll have to wait for the formal report but hopefully that will say the same thing. The cancer markers in my blood (The CEA) are a little elevated, at 14 (normal levels are below 5, but I have had mine up in the 70s). This marker can be elevated as a result of chemo though, so it is not really reliable so close to chemo finishing. I am to go back to see the consultant in 5 weeks, by which time hopefully the marker will have dropped and it will be confirmed that I don't need any more treatment. The best bit today though was the fact that I had my PICC taken out (its left a lovely bruise!). For me this is a great indication that the doctors think that no more treatment will be needed as if they thought it was a possibility that I'd need more chemo then they would have said to leave it in for now! The registrar took the line out there and then! He did make a bit of a hash of dressing it though - typical doctor! ;-) Anyway, I am now PICC free and the days of wrapping my arm in cling-film to have a shower are in the past again! Yay!!
To celebrate what we consider a good news day, the family are playing sardines staying in my ickle flat tonight, so we got a take away and opened a bottle of wine. Now, I have not had any alcohol since before I started this second chemo encounter back in February, so having a glass of a very nice red went straight to my head!! Hic!
Anyway, on the day we are all standing up to cancer, I have and I think I have finally kicked its ass!! (I can say that, I've had bowel cancer!)
I would like to take this opportunity to thank everyone for all their support and love that you have given me as I have encountered chemo again - I wouldn't have got through it without you all!! Oh goodness, I must be a bit tipsy - I LOVE YOU!!! Hic hic ;-)
xxxxx
Monday 8 October 2012
One last chemo day ... Or not!
Ok, so today was meant to be my last day of chemo, after near two years of treatment, well apart from the 7 months off when they thought I was cancer free, I have been really looking forward to this being it and moving into the monitoring phase. I must admit though that I have been a bit nervous too, with the luck that I have, could today really be it?! Well, as it turns out, I haven't finished chemo!
Having rocked up to he hospital for my 10 o'clock appointment, we were told that the chemo wasn't ready yet. Now this we weren't surprised by - the pharmacy never seems to have things ready on time. Anyway, after a bit of a wait, I was called through to the chemo day unit. Then came the first issue of the day. I'm not sure if I've mentioned it before, but this time I have a double PICC (2 lines going into me) and it seems that one of the lines likes to be blocked each time I turn up at the hospital. They take it in turns though just to be fair! Anyway, this time the nurse couldn't flush the clot out and unblock the line so I was given some urokinase to break down any clots in the line. Thankfully this did the trick and I have two working lines again, for now anyway!
I had my mouse drug connected and away we were for the first drug! Alas, as this was being checked, the nurses realised that this was the only drug that had been prescribed! Not again! Having had the same problem with the first cycle of this round of chemo, I knew that this wasn't likely to be quickly sorted. However, I hoped that it could all be sorted in the two hours that it would take for the mouse drug to be infused. The nurses contacted the duty colorectal oncology registrar. From the notes, which thankfully were on the unit this time, the nurses could see that my oncology consultant wanted me to have the full chemo again for one last time. However, the registrar turned out to be a bit of a tw*t and wouldn't just come up to see the notes and prescribe the medication. Instead he insisted that he wanted to talk to my consultant (who doesn't work Mondays as far as I know) and he'd then call back. We still hadn't heard from the reg by the time the mouse drug had finished or by the time that the flush was done (another 30 minutes), despite the nurses paging him 4 more times. The nurses even tried to call my consultant directly, but only got her voicemail. By this time it was 3 o'clock and even if the reg would prescribe it, there wasn't time for the pharmacy to make it up and for it to be given to me before the unit closed for the night. Grrrrrr! We were then advised to go home and I now have an appointment for Wednesday afternoon to hopefully have the chemo drugs. Such a frustrating day!
Oh well, at least I'm not cold sensitive at the moment, so I was able to enjoy some fresh (but cold) pomegranate this evening! You've always got to look on the bright side! ;-)
Anyway ....
Yesterday I had a brilliant morning at the Royal Parks Half Marathon! I met up with the Beating Bowel Cancer crew at their cheer point just before mile 6 and doned my t-shirt (alas no bum shorts). We cheered all the runners past but especially those running for the charity - about 30 of them! I also saw Aisling and gave her a big hug! The last of the runners came past just before midday so the cheer point was packed up and I was able to go and see Aisling finish the run. She did amazingly well and finished in 2 hours 22 mins! I am so proud of her! Well done Ais!
Well, I think that's it from me for tonight.
Take care folks
Xxxx
Having rocked up to he hospital for my 10 o'clock appointment, we were told that the chemo wasn't ready yet. Now this we weren't surprised by - the pharmacy never seems to have things ready on time. Anyway, after a bit of a wait, I was called through to the chemo day unit. Then came the first issue of the day. I'm not sure if I've mentioned it before, but this time I have a double PICC (2 lines going into me) and it seems that one of the lines likes to be blocked each time I turn up at the hospital. They take it in turns though just to be fair! Anyway, this time the nurse couldn't flush the clot out and unblock the line so I was given some urokinase to break down any clots in the line. Thankfully this did the trick and I have two working lines again, for now anyway!
I had my mouse drug connected and away we were for the first drug! Alas, as this was being checked, the nurses realised that this was the only drug that had been prescribed! Not again! Having had the same problem with the first cycle of this round of chemo, I knew that this wasn't likely to be quickly sorted. However, I hoped that it could all be sorted in the two hours that it would take for the mouse drug to be infused. The nurses contacted the duty colorectal oncology registrar. From the notes, which thankfully were on the unit this time, the nurses could see that my oncology consultant wanted me to have the full chemo again for one last time. However, the registrar turned out to be a bit of a tw*t and wouldn't just come up to see the notes and prescribe the medication. Instead he insisted that he wanted to talk to my consultant (who doesn't work Mondays as far as I know) and he'd then call back. We still hadn't heard from the reg by the time the mouse drug had finished or by the time that the flush was done (another 30 minutes), despite the nurses paging him 4 more times. The nurses even tried to call my consultant directly, but only got her voicemail. By this time it was 3 o'clock and even if the reg would prescribe it, there wasn't time for the pharmacy to make it up and for it to be given to me before the unit closed for the night. Grrrrrr! We were then advised to go home and I now have an appointment for Wednesday afternoon to hopefully have the chemo drugs. Such a frustrating day!
Oh well, at least I'm not cold sensitive at the moment, so I was able to enjoy some fresh (but cold) pomegranate this evening! You've always got to look on the bright side! ;-)
Anyway ....
Yesterday I had a brilliant morning at the Royal Parks Half Marathon! I met up with the Beating Bowel Cancer crew at their cheer point just before mile 6 and doned my t-shirt (alas no bum shorts). We cheered all the runners past but especially those running for the charity - about 30 of them! I also saw Aisling and gave her a big hug! The last of the runners came past just before midday so the cheer point was packed up and I was able to go and see Aisling finish the run. She did amazingly well and finished in 2 hours 22 mins! I am so proud of her! Well done Ais!
Well, I think that's it from me for tonight.
Take care folks
Xxxx
Thursday 4 October 2012
Quick recommendation
Hola amigos!
I just wanted to share with you a great website for healthy recipes:
Wholefoods Market Recipes
I have the app on my phone and tablet but the website has the same recipes as far as I can see. I've tried a number of the recipes over the last few months and have not been disappointed yet. The only slight hitch is that as it is an American website / app, all the measurements are in cups. I've got round this by using my trusty Tala cooks measure though, so no problems really.
I just wanted to share this with you all.
As you were
:-) xxx
I just wanted to share with you a great website for healthy recipes:
Wholefoods Market Recipes
I have the app on my phone and tablet but the website has the same recipes as far as I can see. I've tried a number of the recipes over the last few months and have not been disappointed yet. The only slight hitch is that as it is an American website / app, all the measurements are in cups. I've got round this by using my trusty Tala cooks measure though, so no problems really.
I just wanted to share this with you all.
As you were
:-) xxx
Tuesday 2 October 2012
White gloves
I'm typing this whilst wearing gloves so please forgive my typos! Why am I wearing gloves i hear you ask? Well, don't worry it is not that cold in my flat! The heating was turned on in my building yesterday and with the one radiator in my flat, I am now nice and toastie with the lounge currently 25c!! I have had to open the windows and turn the radiator off! Anyway, I am wearing gloves because my skin is so dry now thanks to the mouse drug that my hands are beginning to crack - ow! I'm therefore smothering them in super strong hand cream and wearing cotton gloves to help it get absorbed by my hands (as well as making sure I don't leave a greasy trail over everything I touch!). I look like some sort of mime artist!! It also puts me in mind of the ladies in the fifties that wore white gloves all the time - maybe I have watched 'The Help' too recently! Anyway, hopefully this technique will help my skin, even if it does make using touch screen devices rather laborious!
So what else has been happening in the world of Rach? Bet you've all been on the edge of your seats! ;-) Well, after last weeks trip to the Midlands and back, I had the penultimate condom bottle unattached on Wednesday afternoon, no problems. We didn't even get as far as the waiting room, as the chemo day unit was so quiet that the nurses could see to me straight away! I almost put my foot in it and said "it's dead in here" - not sure that would have gone down well, given the location though!
Sarah left me to my own devices on Thursday and I have been flying solo ever since. The first few days, I felt a bit icky, as usual with that stage of the chemo cycles, with not having much energy and feeling nauseous. I was also feeling the cold more than I have for a while. Thankfully, Monday brought a new week and it was as if a switch was flicked! I woke up feeling ok and with the heating now on, the cold sensitivity is now a lot better!
Yesterday afternoon I had my first yoga session since my operation! I can't believe it's been so long, but with everything that's been going on, it just hasn't been possible before now. It was really great to get moving again and give my body a good old stretch! It certainly needs it, with having been curled up on the sofa pretty much constantly for the last 3 months! Anyway, thanks so much Clare for the session and I am looking forward to the next one tomorrow afternoon.
On Friday, Dad and I are back off to clinic. Hopefully we'll see my normal oncologist and she can confirm once and for all what the treatment plan is. I received a copy of the letter that the other consultant sent my GP and in the section about treatment so far, it made no mention whatsoever about my liver surgery, which makes me even more sure that the consultant hadn't read through my notes enough to realise that this had taken place.
I'm hoping that the weekend will bring some fine weather as I'm having a day out on Sunday. My great friend Aisling is running the Royal Parks Half Marathon in aid of Sense and I'm off to cheer her on. I'm also hoping to meet up with some other Beating Bowel Cancer supporters to cheer on the runners raising money for that great charity! I am looking forward to it and have so much respect for people who go to so much effort raising money for so many worthwhile causes! Hopefully next year I'll be able to do my bit, although I'm not aiming for a half marathon just yet, don't worry Mum! It's going to be a bit of a sad day though as Aisling is moving to Exeter that evening ready to start her new job at the Met Office the next day. I'm going to miss you Ais, and wish you all the very best. Don't worry though, you can't get rid of me that easily! ;-)
Anyway, I'd better go and get some lunch.
Bye for now
Xxxx
So what else has been happening in the world of Rach? Bet you've all been on the edge of your seats! ;-) Well, after last weeks trip to the Midlands and back, I had the penultimate condom bottle unattached on Wednesday afternoon, no problems. We didn't even get as far as the waiting room, as the chemo day unit was so quiet that the nurses could see to me straight away! I almost put my foot in it and said "it's dead in here" - not sure that would have gone down well, given the location though!
Sarah left me to my own devices on Thursday and I have been flying solo ever since. The first few days, I felt a bit icky, as usual with that stage of the chemo cycles, with not having much energy and feeling nauseous. I was also feeling the cold more than I have for a while. Thankfully, Monday brought a new week and it was as if a switch was flicked! I woke up feeling ok and with the heating now on, the cold sensitivity is now a lot better!
Yesterday afternoon I had my first yoga session since my operation! I can't believe it's been so long, but with everything that's been going on, it just hasn't been possible before now. It was really great to get moving again and give my body a good old stretch! It certainly needs it, with having been curled up on the sofa pretty much constantly for the last 3 months! Anyway, thanks so much Clare for the session and I am looking forward to the next one tomorrow afternoon.
On Friday, Dad and I are back off to clinic. Hopefully we'll see my normal oncologist and she can confirm once and for all what the treatment plan is. I received a copy of the letter that the other consultant sent my GP and in the section about treatment so far, it made no mention whatsoever about my liver surgery, which makes me even more sure that the consultant hadn't read through my notes enough to realise that this had taken place.
I'm hoping that the weekend will bring some fine weather as I'm having a day out on Sunday. My great friend Aisling is running the Royal Parks Half Marathon in aid of Sense and I'm off to cheer her on. I'm also hoping to meet up with some other Beating Bowel Cancer supporters to cheer on the runners raising money for that great charity! I am looking forward to it and have so much respect for people who go to so much effort raising money for so many worthwhile causes! Hopefully next year I'll be able to do my bit, although I'm not aiming for a half marathon just yet, don't worry Mum! It's going to be a bit of a sad day though as Aisling is moving to Exeter that evening ready to start her new job at the Met Office the next day. I'm going to miss you Ais, and wish you all the very best. Don't worry though, you can't get rid of me that easily! ;-)
Anyway, I'd better go and get some lunch.
Bye for now
Xxxx
Tuesday 25 September 2012
Treatment update
Well, I am so relieved to report that it looks like the consultant I saw last Friday was confused and I am not going to need the extra 6 months of cetuximab aka mouse drug! Yay! I saw Fiona, my CNS, yesterday whilst I was having my chemo and she was pretty sure that this was the case but she was awaiting confirmation from my normal consultant. She heard back this morning and kindly phoned with the good news! I am so relieved! Of course if it was deemed a good idea, I'd have had the treatment but I'm glad this will not be the case. I can now get on with making plans again without having to factor in weekly hospital visits!
Yesterday's chemo session was a bit of a long one! Now if all goes smoothly, it take about 5 and half to 6 hours (2 lots of 2 hours for the cetuximab and then oxyplatin, plus flushes on each line at the start, in between and at the end and then 5 minute bonus of 5 fu and then hooking up to pump aka condom bottle). Anyway, there was a 2 and a half hour delay getting the drugs up from pharmacy! I wasn't the only one who was affected by this and there was a rumour that the registrar was late prescribing the drugs. Grr! At least it gave the rain time to clear and the sun come out (and then set!).
Last night I got to experience a new side effect to me - jelly legs! Thankfully, my twitter friend Hayley reassured me that it would only last a few hours, which it did! Thanks so much Hayley! It's so great to be able to get advice and reassurance from others who are going through or have been through similar things to me, either via twitter or on the forums! Not sure what I would have done in the days before such things existed! Thank you all for your support!
I am now back to enjoying the cold sensitivity that comes with the oxyplatin. I've decamped to my sister's house in Leicester for the night and have made the most of being able to turn the heating on (I won't tell you what I've set the thermostat at!). In the building I live in, the heating doesn't get switched on until 1st October. Last year we were all complaining it made it too warm as it was 30c outside, but we can't wait this year! Brrrr!
As I said, I've come up to Leicester for the night - it's the first time my 5fu pump, aka the condom bottle, has been on holiday! As I'm only attached to it for 46 hours, it's never been worth leaving London before as I only get one day off between the hospital visits. However, Sarah had to come on a course back here this afternoon and I decided to give her a break from going up and down to London on the train by giving her the pleasure of driving up and down the m1 instead, with me tagging along as navigator, sweet dispenser and dj! I tell you what, the 12 miles of 50mph limit near Luton are boring - we saw 5 people working this morning! And as for lorries trying to over take each other on hills when they are all limited to 60mph, just don't get me started!
Anyway, that's enough from me for now! I'm off to fill in applications to do some volunteering for two wonderful charities, Beating Bowel Cancer and Bowel Cancer UK.
Bye
Xxxx
Yesterday's chemo session was a bit of a long one! Now if all goes smoothly, it take about 5 and half to 6 hours (2 lots of 2 hours for the cetuximab and then oxyplatin, plus flushes on each line at the start, in between and at the end and then 5 minute bonus of 5 fu and then hooking up to pump aka condom bottle). Anyway, there was a 2 and a half hour delay getting the drugs up from pharmacy! I wasn't the only one who was affected by this and there was a rumour that the registrar was late prescribing the drugs. Grr! At least it gave the rain time to clear and the sun come out (and then set!).
Last night I got to experience a new side effect to me - jelly legs! Thankfully, my twitter friend Hayley reassured me that it would only last a few hours, which it did! Thanks so much Hayley! It's so great to be able to get advice and reassurance from others who are going through or have been through similar things to me, either via twitter or on the forums! Not sure what I would have done in the days before such things existed! Thank you all for your support!
I am now back to enjoying the cold sensitivity that comes with the oxyplatin. I've decamped to my sister's house in Leicester for the night and have made the most of being able to turn the heating on (I won't tell you what I've set the thermostat at!). In the building I live in, the heating doesn't get switched on until 1st October. Last year we were all complaining it made it too warm as it was 30c outside, but we can't wait this year! Brrrr!
As I said, I've come up to Leicester for the night - it's the first time my 5fu pump, aka the condom bottle, has been on holiday! As I'm only attached to it for 46 hours, it's never been worth leaving London before as I only get one day off between the hospital visits. However, Sarah had to come on a course back here this afternoon and I decided to give her a break from going up and down to London on the train by giving her the pleasure of driving up and down the m1 instead, with me tagging along as navigator, sweet dispenser and dj! I tell you what, the 12 miles of 50mph limit near Luton are boring - we saw 5 people working this morning! And as for lorries trying to over take each other on hills when they are all limited to 60mph, just don't get me started!
Anyway, that's enough from me for now! I'm off to fill in applications to do some volunteering for two wonderful charities, Beating Bowel Cancer and Bowel Cancer UK.
Bye
Xxxx
Friday 21 September 2012
Paralympics, christenings and, well, cancer
Hello!
Sorry it's been so long (again), folks! I can't believe it's already getting towards the end of September! Anyway, I guess you are wondering what has been happening in the world of Rach!? Well, there are a few things that have occurred.
First off, there was the Paralympics. How great we're they?!?! I loved watching the Olympics on tv, but the Paralympics were a whole other ball game for me, mainly because I got to go!!! Yes, I was very luck to spend four days dragging Dad around and sending him deaf by cheering so much! We managed to see some of the swimming, including an Ellie Simmonds gold medal, some of the athletics, including a David Weir gold medal, some of the wheelchair rugby, including a GB match, and the medal matches of the mens wheelchair basketball! (I'm so so lucky). I loved the whole experience, and even climbing all the stairs to get to the cheap seats was worth it! The Olympic Park was great and absolutely huge! Seeing all the iconic venues was brilliant, and soaking up the atmosphere was amazing! Where else in London would complete strangers sit and chat about things they have seen or going to see? And as for the games makers, police and members of the armed forces - they were brilliant and so friendly! We did begin to wonder how many happy pills they had to take though! ;-) I think that I have found a now sport to enjoy watching - the wheelchair rugby was brilliant! A lot of like wheelchair bumper cars combined with a bit of basketball and rugby! I'm definitely going to try and find some more matches to watch! We had a brilliant time and I was glad that we were able to go and that it was timed with my good week on chemo! Thanks to all the Paralympians for putting on a great show and for inspiring all of us to look for what we can do rather than what we can't! And thanks Dad for being my partner in crime and coming with me! I'll post some pics once I have gone through the 2000+ that I took!!!!
After the excitement of the Paralympics, it was back to the fun of the chemo ward, but more on that later.
Last weekend I went up to Lincolnshire for my cousin's little boy's christening. I hadn't seen any of that side of my extended family for over 2 years (since before diagnosis) so it was really great to see them all and catch up on everything that's been happening. I met Erin, the daughter of my cousin Philip and his wife Emma, for the first time, which was fun and by the end of the afternoon we were flying like birds together and she was showing me her Angry Birds prowes on Philip's iPhone! A very cute and clever little girl! To Erin, all I can say is "cheese" (she takes a great photo)!!! I also got to meet little Amelia, the daughter of my cousin James and his wife Cara. She was happily gumming the cucumber sticks and looking super cute! I just hope her teething isn't too painful for her. Of course, the star of the day was little Samuel, the son of my cousin Ann and her husband Nigel. He was such a well behaved little boy and looked lovely in his christening gown. I think it must have helped that it was his grandpa, my uncle, that was performing the service and doing the whole holy water bit. The afternoon tea after the service was very well catered and gave me a chance to catch up with other family members, including my cousin Matthew and his fiancé Bex, who are planning their wedding next year - can't wait for that guys! All in all it was a fantastic day and I was so glad to be able to come and see you all! I hope we can all catch up again soon!
The rest of the weekend Mum and I spent hanging out with Granny. Unfortunately I have had a cold for the last fortnight (picked up at the Paralympics I think, as Dad was suffering with it more than me) and it was the bad time of my chemo cycle for side effects, so I spent a lot of time resting / sleeping. It was really lovely to be with Mum and Granny though and hopefully next time I'll be more value for money!
As I mentioned, I have been suffering from a cold this last fortnight. Now this is not pleasant at the best of times, but the risk factor ups a couple of notches when you are on chemo. One of the things that chemo does is knock your immune system and so a cold could develop into something more sinister! Eek! Anyway, thankfully my white blood cell count was fairly normal and so for me, this is just behaving like a normal cold. It's annoying, but thankfully nothing worse and I'm keeping Kleenex and Olbas in business!
OK, now onto the cancer bit of this update (feel free to sign off and go and get a cup of tea now). Well, having had the cock ups with the first cycle of this round of chemo, I was hoping that we would be into smooth sailing mode, but someone somewhere had other ideas. The first clue was when a letter arrived from the hospital to say that my clinic appointment was being delayed three weeks! Now, I have to see one of the doctors in the clinic before each chemo appointment so that they can check I am coping OK with the treatment and they then prescribe the chemo drugs. This meant that a three week delay in the clinic appointment would lead to a three week delay in treatment! Not good! I got straight on the phone to find out what was going on and thankfully my MacMillan CNS (Clinical Nurse Specialist) sorted it so that I could see someone in clinic on the originally planned day. We never did find out who decided that there should be a three week delay - someone in admin probably! Anyway, the doctor was seen and chemo was duly administered on schedule - this time with all the drugs that I was supposed to get (no one knows why there was the prescription cock up with the first cycle). Anyway, since then I have been enjoying the side effects of chemo that seem to have got a little bit more pronounced quicker than they have in the past - I guess having a cold hasn't helped. I won't give you too many details, but I'll just say that the immodium has been put to the test and I've not been able to venture too far from a bathroom on more days than I would have liked! :-( Sorry if that is too much info! Anyway, (I say that a lot, don't I?!) we are now half way through the planned chemo and I am due to have my forth and (hopefully) final condom bottle disconnected on October 10th, which will be 23 months to the day since they first found the tumour! What an adventure it has been!! Fingers crossed that'll be me done with chemo for good! However, today in clinic, there was a curve ball thrown! Grrr! I saw a different consultant to my normal one today and he seemed to suggest that I may have to continue having the mouse drug fortnightly for another six months!!!! What!?? Sarah and I tried to find out more about this, and the doctor suggested that a maintenance regime would continue with that one drug! Technically it is a biological anti-body treatment rather than chemotherapy, but it would still tie me down to going to the hospital every week! Obviously, if this is considered the best option for me to make sure that I beat the cancer, then I will take the treatment, it just all came a bit out of the blue and it has never been mentioned before. It knocked us for 6 to say the least. I have been psyching myself up for treatment to all be done with in less than three weeks, but to hear that it could carry on until March is another matter entirely! Oh well! I have left a message with my CNS (she gets lots of calls from me) this afternoon to ask her to find out from my normal consultant what the game plan is. Hopefully she'll get back to me early next week with some answers. Until then, all plans are on hold again! Grrr!
Well, I think that about covers everything that's going on at the moment! I'm going to enjoy my weekend and then it is back to the chemo grindstone on Monday with at least 6 hours in the comfy chair and drips attached! Fun fun fun!
Have a good one everyone and thanks for reading (hope I haven't bored you!)
xxxx
Sorry it's been so long (again), folks! I can't believe it's already getting towards the end of September! Anyway, I guess you are wondering what has been happening in the world of Rach!? Well, there are a few things that have occurred.
First off, there was the Paralympics. How great we're they?!?! I loved watching the Olympics on tv, but the Paralympics were a whole other ball game for me, mainly because I got to go!!! Yes, I was very luck to spend four days dragging Dad around and sending him deaf by cheering so much! We managed to see some of the swimming, including an Ellie Simmonds gold medal, some of the athletics, including a David Weir gold medal, some of the wheelchair rugby, including a GB match, and the medal matches of the mens wheelchair basketball! (I'm so so lucky). I loved the whole experience, and even climbing all the stairs to get to the cheap seats was worth it! The Olympic Park was great and absolutely huge! Seeing all the iconic venues was brilliant, and soaking up the atmosphere was amazing! Where else in London would complete strangers sit and chat about things they have seen or going to see? And as for the games makers, police and members of the armed forces - they were brilliant and so friendly! We did begin to wonder how many happy pills they had to take though! ;-) I think that I have found a now sport to enjoy watching - the wheelchair rugby was brilliant! A lot of like wheelchair bumper cars combined with a bit of basketball and rugby! I'm definitely going to try and find some more matches to watch! We had a brilliant time and I was glad that we were able to go and that it was timed with my good week on chemo! Thanks to all the Paralympians for putting on a great show and for inspiring all of us to look for what we can do rather than what we can't! And thanks Dad for being my partner in crime and coming with me! I'll post some pics once I have gone through the 2000+ that I took!!!!
After the excitement of the Paralympics, it was back to the fun of the chemo ward, but more on that later.
Last weekend I went up to Lincolnshire for my cousin's little boy's christening. I hadn't seen any of that side of my extended family for over 2 years (since before diagnosis) so it was really great to see them all and catch up on everything that's been happening. I met Erin, the daughter of my cousin Philip and his wife Emma, for the first time, which was fun and by the end of the afternoon we were flying like birds together and she was showing me her Angry Birds prowes on Philip's iPhone! A very cute and clever little girl! To Erin, all I can say is "cheese" (she takes a great photo)!!! I also got to meet little Amelia, the daughter of my cousin James and his wife Cara. She was happily gumming the cucumber sticks and looking super cute! I just hope her teething isn't too painful for her. Of course, the star of the day was little Samuel, the son of my cousin Ann and her husband Nigel. He was such a well behaved little boy and looked lovely in his christening gown. I think it must have helped that it was his grandpa, my uncle, that was performing the service and doing the whole holy water bit. The afternoon tea after the service was very well catered and gave me a chance to catch up with other family members, including my cousin Matthew and his fiancé Bex, who are planning their wedding next year - can't wait for that guys! All in all it was a fantastic day and I was so glad to be able to come and see you all! I hope we can all catch up again soon!
The rest of the weekend Mum and I spent hanging out with Granny. Unfortunately I have had a cold for the last fortnight (picked up at the Paralympics I think, as Dad was suffering with it more than me) and it was the bad time of my chemo cycle for side effects, so I spent a lot of time resting / sleeping. It was really lovely to be with Mum and Granny though and hopefully next time I'll be more value for money!
As I mentioned, I have been suffering from a cold this last fortnight. Now this is not pleasant at the best of times, but the risk factor ups a couple of notches when you are on chemo. One of the things that chemo does is knock your immune system and so a cold could develop into something more sinister! Eek! Anyway, thankfully my white blood cell count was fairly normal and so for me, this is just behaving like a normal cold. It's annoying, but thankfully nothing worse and I'm keeping Kleenex and Olbas in business!
OK, now onto the cancer bit of this update (feel free to sign off and go and get a cup of tea now). Well, having had the cock ups with the first cycle of this round of chemo, I was hoping that we would be into smooth sailing mode, but someone somewhere had other ideas. The first clue was when a letter arrived from the hospital to say that my clinic appointment was being delayed three weeks! Now, I have to see one of the doctors in the clinic before each chemo appointment so that they can check I am coping OK with the treatment and they then prescribe the chemo drugs. This meant that a three week delay in the clinic appointment would lead to a three week delay in treatment! Not good! I got straight on the phone to find out what was going on and thankfully my MacMillan CNS (Clinical Nurse Specialist) sorted it so that I could see someone in clinic on the originally planned day. We never did find out who decided that there should be a three week delay - someone in admin probably! Anyway, the doctor was seen and chemo was duly administered on schedule - this time with all the drugs that I was supposed to get (no one knows why there was the prescription cock up with the first cycle). Anyway, since then I have been enjoying the side effects of chemo that seem to have got a little bit more pronounced quicker than they have in the past - I guess having a cold hasn't helped. I won't give you too many details, but I'll just say that the immodium has been put to the test and I've not been able to venture too far from a bathroom on more days than I would have liked! :-( Sorry if that is too much info! Anyway, (I say that a lot, don't I?!) we are now half way through the planned chemo and I am due to have my forth and (hopefully) final condom bottle disconnected on October 10th, which will be 23 months to the day since they first found the tumour! What an adventure it has been!! Fingers crossed that'll be me done with chemo for good! However, today in clinic, there was a curve ball thrown! Grrr! I saw a different consultant to my normal one today and he seemed to suggest that I may have to continue having the mouse drug fortnightly for another six months!!!! What!?? Sarah and I tried to find out more about this, and the doctor suggested that a maintenance regime would continue with that one drug! Technically it is a biological anti-body treatment rather than chemotherapy, but it would still tie me down to going to the hospital every week! Obviously, if this is considered the best option for me to make sure that I beat the cancer, then I will take the treatment, it just all came a bit out of the blue and it has never been mentioned before. It knocked us for 6 to say the least. I have been psyching myself up for treatment to all be done with in less than three weeks, but to hear that it could carry on until March is another matter entirely! Oh well! I have left a message with my CNS (she gets lots of calls from me) this afternoon to ask her to find out from my normal consultant what the game plan is. Hopefully she'll get back to me early next week with some answers. Until then, all plans are on hold again! Grrr!
Well, I think that about covers everything that's going on at the moment! I'm going to enjoy my weekend and then it is back to the chemo grindstone on Monday with at least 6 hours in the comfy chair and drips attached! Fun fun fun!
Have a good one everyone and thanks for reading (hope I haven't bored you!)
xxxx
Friday 31 August 2012
Cake and chemo - the rematch!
You'll all be pleased to hear that yesterday was a much less disastrous day than Tuesday seemed to be! The only thing that tried to put a dampener on things was my persistent headache that ibuprofen and paracetamol couldn't shift! It turns out that when you are given cetuximab on its own it can cause a headache! Although I did have a dose of cetuximab on its own back in May, it's likely that there would still have been some of my other chemo drugs in my system, so no headache then. Anyway, with getting the oxyplatin and the 5FU yesterday afternoon the headache has just about gone! Yay!
Thankfully, all went straight forwardly at the hospital yesterday afternoon and I am now all hooked up to condom bottle number 7 of 10! I have it connected until tomorrow afternoon and have quickly gotten used to it hanging around again!! Thankfully, so far the side affects from the chemo have been minimal - at the moment I can drink room temperature drinks and don't have to clean my teeth in warm water. I'm taking my anti nausea meds as I hate feeling sick - thankfully not felt that way yet! I did get a quite numb right ear when I went out for a walk with mum this evening though - funny how it's always been my right ear that is affected first!! Hummm
Anyway, as I mentioned, mum is here now. It's been shift change day with sis having to go back home so she can go to work tomorrow. Dad bought mum up this afternoon and then took my car back to their house so that he can get it MOT'd tomorrow! Mum and I are then heading back for the weekend after I'm done at the hospital tomorrow afternoon. Thanks so much to you all, sis, mum and dad, for all the too-ing and fro-ing you are doing for me!!
Speaking of sis, the poor thing had to spend her birthday coming to chemo with me rather than meet up with her friends. Thanks again Sarah! To make it up to her I let her choose the take away for dinner!! Pizza was consumed!! Then it was cake time!! I had made her a New York style baked cheesecake from the original cheesecake recipe in the Junior's cookbook. Junior's is a chain of cheesecake restaurants in New York City that Sarah and I fell in love with when we were there for my 30th! This recipe calls for nearly 1kg of full fat Philadelphia cheese, among other naughty things!!! Well, thankfully even after my disasters whilst making it, it tasted good in the end!! We haven't quite finished it!! ;-)
Today, whilst supervising shift change I've been enjoying watching the Paralympics - truly inspirational!! I really loved the opening ceremony last night, especially seeing all the colourful outfits worn by the competitors - mexico certainly won that one!! I'm looking forward to vegging out and watching the games, and then I can plan my next mini adventure gold postbox tour!! Go Paralympic GB!!
Anyway, just to finish off with, here's a photo of the cake!
Night all
Thankfully, all went straight forwardly at the hospital yesterday afternoon and I am now all hooked up to condom bottle number 7 of 10! I have it connected until tomorrow afternoon and have quickly gotten used to it hanging around again!! Thankfully, so far the side affects from the chemo have been minimal - at the moment I can drink room temperature drinks and don't have to clean my teeth in warm water. I'm taking my anti nausea meds as I hate feeling sick - thankfully not felt that way yet! I did get a quite numb right ear when I went out for a walk with mum this evening though - funny how it's always been my right ear that is affected first!! Hummm
Anyway, as I mentioned, mum is here now. It's been shift change day with sis having to go back home so she can go to work tomorrow. Dad bought mum up this afternoon and then took my car back to their house so that he can get it MOT'd tomorrow! Mum and I are then heading back for the weekend after I'm done at the hospital tomorrow afternoon. Thanks so much to you all, sis, mum and dad, for all the too-ing and fro-ing you are doing for me!!
Speaking of sis, the poor thing had to spend her birthday coming to chemo with me rather than meet up with her friends. Thanks again Sarah! To make it up to her I let her choose the take away for dinner!! Pizza was consumed!! Then it was cake time!! I had made her a New York style baked cheesecake from the original cheesecake recipe in the Junior's cookbook. Junior's is a chain of cheesecake restaurants in New York City that Sarah and I fell in love with when we were there for my 30th! This recipe calls for nearly 1kg of full fat Philadelphia cheese, among other naughty things!!! Well, thankfully even after my disasters whilst making it, it tasted good in the end!! We haven't quite finished it!! ;-)
Today, whilst supervising shift change I've been enjoying watching the Paralympics - truly inspirational!! I really loved the opening ceremony last night, especially seeing all the colourful outfits worn by the competitors - mexico certainly won that one!! I'm looking forward to vegging out and watching the games, and then I can plan my next mini adventure gold postbox tour!! Go Paralympic GB!!
Anyway, just to finish off with, here's a photo of the cake!
Night all
Tuesday 28 August 2012
Cake and chemo - not quite according to plan!
I had two things to do today - make a baked New York style cheesecake ready for my sister's birthday tomorrow and go to the hospital to have my first cycle of chemo. Well, like all my best laid plans, neither of these things went quite to script!! Grrr
Cheesecake first ... The recipe told me to make the sponge base, cook it and then let it cool before adding the cheesy topping. Well I cooked it for the time it said and left it to cool. However, when I started to spoon the cheesy topping on it just sank through the sponge - oops! Anyway, I put the base back in the oven to cook a bit longer and then obviously had to let it cool again. On the second attempt, the cheesy topping sank a little bit into the sponge again but I had to carry on as it needed to bake again for over an hour and I only had that time before I had to leave for the hospital!!! I suspect we may have a marble effect with the sponge and cheese all mixed up when we come to cut it and eat it!! I just hope it tastes ok!!!
Well, onto the chemo saga!! My sis and I arrived on the chemo ward to be told I needed to go for a chest X-ray as the PICC wasn't in the right place!!! I explained that I had been through all this already and had another PICC put in correctly (see earlier post). Anyway, the nurses explained that they couldn't give me any chemo unless I had another X-ray today and the doctor signed off on it! So off to X-ray I went again! The receptionist was surprised to see me again, after all this was to be my 4th X-ray in a week!! Well, after a bit of a wait and then the X-ray, I went back up to the chemo unit. Obviously the X-ray showed all was fine because after about 45 minutes I was hooked up to my cetuximab (the mouse drug). Now, this is when the first hints of something not being quite right showed themselves. Normally, the three drugs I am on (cetuximab, oxyplatin and 5FU, aka the condom bottle) all get sent up from pharmacy at the same time and then stored in the fridge on the ward until I'm ready to have them - they go on one at a time which is why a chemo session takes a minimum of 5 and a half hours. Anyway, sometimes if the pharmacy hasn't quite finished making up the drugs, they just send up the first one, with the others following. This is what appeared to have happened today. However, when the nurse called the pharmacy to check, she was told that only the cetuximab had been prescribed!! Hummm. It turns out that my consultant had the day off today so they couldn't check with her. The next step was to get my notes from the file room and check them. Alas, all my consultant had written in there was that chemo was to start today and she didn't specify which drugs!! Ok, so next I spoke to the oncology registrar on duty and told her that my consultant had suggested to me when I saw her on clinic a couple of weeks ago that I was to have all the same drugs as earlier this year. Thankfully the registrar thought this was most likely so off she went to prescribe the oxyplatin and 5FU. However, it was approaching 6pm by this time and the day unit was winding down for the day and it was going to take at least 2 hours for pharmacy to make up the drugs!! As a result we came home - the cetuximab infusion had finished by this point. I have to go back tomorrow to have the other drugs. It wouldn't really be a problem but I'd stupidly booked my car in for an MOT on Friday morning back near my parents house 100 miles away!! This has to be rethought as I will now have to go back to the hospital on Friday to get my condom bottle disconnected!! How stupid of me to make plans whilst I'm on chemo!! Doh!!
Anyway, here's hoping tomorrow will be a better day, especially as it's Sarah's birthday!!
Night all
Xxx
Cheesecake first ... The recipe told me to make the sponge base, cook it and then let it cool before adding the cheesy topping. Well I cooked it for the time it said and left it to cool. However, when I started to spoon the cheesy topping on it just sank through the sponge - oops! Anyway, I put the base back in the oven to cook a bit longer and then obviously had to let it cool again. On the second attempt, the cheesy topping sank a little bit into the sponge again but I had to carry on as it needed to bake again for over an hour and I only had that time before I had to leave for the hospital!!! I suspect we may have a marble effect with the sponge and cheese all mixed up when we come to cut it and eat it!! I just hope it tastes ok!!!
Well, onto the chemo saga!! My sis and I arrived on the chemo ward to be told I needed to go for a chest X-ray as the PICC wasn't in the right place!!! I explained that I had been through all this already and had another PICC put in correctly (see earlier post). Anyway, the nurses explained that they couldn't give me any chemo unless I had another X-ray today and the doctor signed off on it! So off to X-ray I went again! The receptionist was surprised to see me again, after all this was to be my 4th X-ray in a week!! Well, after a bit of a wait and then the X-ray, I went back up to the chemo unit. Obviously the X-ray showed all was fine because after about 45 minutes I was hooked up to my cetuximab (the mouse drug). Now, this is when the first hints of something not being quite right showed themselves. Normally, the three drugs I am on (cetuximab, oxyplatin and 5FU, aka the condom bottle) all get sent up from pharmacy at the same time and then stored in the fridge on the ward until I'm ready to have them - they go on one at a time which is why a chemo session takes a minimum of 5 and a half hours. Anyway, sometimes if the pharmacy hasn't quite finished making up the drugs, they just send up the first one, with the others following. This is what appeared to have happened today. However, when the nurse called the pharmacy to check, she was told that only the cetuximab had been prescribed!! Hummm. It turns out that my consultant had the day off today so they couldn't check with her. The next step was to get my notes from the file room and check them. Alas, all my consultant had written in there was that chemo was to start today and she didn't specify which drugs!! Ok, so next I spoke to the oncology registrar on duty and told her that my consultant had suggested to me when I saw her on clinic a couple of weeks ago that I was to have all the same drugs as earlier this year. Thankfully the registrar thought this was most likely so off she went to prescribe the oxyplatin and 5FU. However, it was approaching 6pm by this time and the day unit was winding down for the day and it was going to take at least 2 hours for pharmacy to make up the drugs!! As a result we came home - the cetuximab infusion had finished by this point. I have to go back tomorrow to have the other drugs. It wouldn't really be a problem but I'd stupidly booked my car in for an MOT on Friday morning back near my parents house 100 miles away!! This has to be rethought as I will now have to go back to the hospital on Friday to get my condom bottle disconnected!! How stupid of me to make plans whilst I'm on chemo!! Doh!!
Anyway, here's hoping tomorrow will be a better day, especially as it's Sarah's birthday!!
Night all
Xxx
Monday 27 August 2012
My mini adventure
Today I have been on a mini adventure - alas it wasn't in a Mini (car) but via the delights of London buses and trains (does anyone else remember those adverts for Mini's - the Mini Adventures??). Anyway, I decided that I wanted to do something fun on my last day before chemo starts again tomorrow. I found a website that shows where all the gold postboxes are in the country (www.goldpostboxes.com) and it turns out that there are (currently) 6 in south-west London. Hopefully the Paralympians will do well in the coming couple of weeks and add more. Well, with the locations pinpointed I then planned my day using the trusty TfL Journey Planner. I decided to start with Pete Reed's postbox outside Chiswick Town Hall. I jumped on the train to Chiswick and then the E3 bus. I was planning to walk from the station to the town hall but as I got off the train, the heavens opened. Now of course I should have known this was going to happen, but I'd somehow missed this part of the forecast and left my umbrella at home, so off on the bus I went!! Here's Pete's postbox:
Then came the climb up the hill to Wimbledon village and then back down the other side of the hill to the All England Club. It was during this trek that I discovered that the blisters I got yesterday (from trainers I have had for years!) were not as well protected as I had hoped by the blister plasters - ouch!!! Anyway, I was very grateful when I found Andy Murray's gold postbox outside the All England Club. Here it is:
Now, with my blisters, my plan was to get the bus back to Wimbledon station and then the train down to Cheam for the last postbox of the day. However, the bustracker app on my phone told me that the next bus was in 25 minutes! I'm not really one for waiting around so decided that the feet could hold up to walking back up the hill to Wimbledon village where I hoped that there would be more bus options. Typically, as I got about 20m back up the road the bus that I was told was 25 minutes away went past!! Oh well! Once back in Wimbledon village I caught the number 93 bus. When I saw that the destination of the bus was North Cheam I decided to stay on the bus through to there rather than get off at Wimbledon station and get the train. Once I got to the end of the bus route, I walked down to Cheam and found my final postbox - that commemorating Joanna Rowsell's win in the team pursuit. Here it is:
After taking this snap, it was time to walk to Cheam station and catch the train home!! So, after 5 and a half hours, 3 buses and 5 trains I had visited the 6 gold postboxes on my mini adventure! I had also seem many parts of London that I've not been to before. Oh, did I mention that having bought that umbrella by Chiswick Town Hall, it had stopped raining by the time I got to Isleworth and remained dry for the rest of the day!! Typical! Never mind. I am now the proud owner of another black folding umbrella which will no doubt end up being left on a bus or train or in a pub somewhere in the future!!
I am now resting my poor feet before enjoying my final ice cream for a couple of months - cold sensitivity comes back tomorrow afternoon with my oxyplatin infusion. And then I have to also prepare for a certain sister's birthday on Wednesdy!! (I don't think she reads my blog - gets enough of me without it - but I'll leave out any birthday info until afterwards just in case).
Oh, check out these fun prints http://www.stuartsoriginals.com/cities.html I saw the London - Sporting City and London - World City prints in a gallery window in Wimbledon and thought they were great! (can I find somewhere to hang one, let alone justify buying one!!?? Hummmm)
Anyway, bye for now folks! No doubt the next post will be back about the joys of chemo!!
Take care
xxxxx
So, having found the postbox I bought an umbrella and went to catch the bus (the 237) to my next destination - Isleworth. Just up the road from Isleworth station I found the first of Mo Farah's gold postboxes, to commemorate his 10,000m gold medal. Here it is:
My next visit was to Mo's other postbox, commemorating his 5,000m win. This one was located in Teddington, so I caught the train down from Isleworth, via Twickenham. Here's Mo's second gold postbox:
OK, so I was now half way through my list of postboxes. The next destination was Wimbledon, where two postboxes could be found, so it was back on the train. Just up the road from the station was Sophie Hosking's gold postbox:
Now, with my blisters, my plan was to get the bus back to Wimbledon station and then the train down to Cheam for the last postbox of the day. However, the bustracker app on my phone told me that the next bus was in 25 minutes! I'm not really one for waiting around so decided that the feet could hold up to walking back up the hill to Wimbledon village where I hoped that there would be more bus options. Typically, as I got about 20m back up the road the bus that I was told was 25 minutes away went past!! Oh well! Once back in Wimbledon village I caught the number 93 bus. When I saw that the destination of the bus was North Cheam I decided to stay on the bus through to there rather than get off at Wimbledon station and get the train. Once I got to the end of the bus route, I walked down to Cheam and found my final postbox - that commemorating Joanna Rowsell's win in the team pursuit. Here it is:
After taking this snap, it was time to walk to Cheam station and catch the train home!! So, after 5 and a half hours, 3 buses and 5 trains I had visited the 6 gold postboxes on my mini adventure! I had also seem many parts of London that I've not been to before. Oh, did I mention that having bought that umbrella by Chiswick Town Hall, it had stopped raining by the time I got to Isleworth and remained dry for the rest of the day!! Typical! Never mind. I am now the proud owner of another black folding umbrella which will no doubt end up being left on a bus or train or in a pub somewhere in the future!!
I am now resting my poor feet before enjoying my final ice cream for a couple of months - cold sensitivity comes back tomorrow afternoon with my oxyplatin infusion. And then I have to also prepare for a certain sister's birthday on Wednesdy!! (I don't think she reads my blog - gets enough of me without it - but I'll leave out any birthday info until afterwards just in case).
Oh, check out these fun prints http://www.stuartsoriginals.com/cities.html I saw the London - Sporting City and London - World City prints in a gallery window in Wimbledon and thought they were great! (can I find somewhere to hang one, let alone justify buying one!!?? Hummmm)
Anyway, bye for now folks! No doubt the next post will be back about the joys of chemo!!
Take care
xxxxx
Saturday 25 August 2012
Oh cripes!
I've just had a glass candle explode! (obviously the candle was made of wax but it was one of those that is in a glass, if you know what I mean). Typically, it exploded in the lounge between me and the cupboard where the vacuum is kept and I had bare feet!! (rolls eyes). Anyway, I picked my way across and I think I've hoovered all the little bits up. At least it was one of my cheap ikea candles and not one of my nice ones - maybe there's a tip in there - watch out for cheap Swedish candles!!
Anyway, apart from that excitement, I've had a really lovely day, and no sis that's not because you went home! ;-) hahaha! No, it's because I met up with my great friend Janey, her husband and little boy. Thanks so much guys for meeting me and for my tea and cookie! It was really lovely to see you, and to have a cuddle with Oscar (that's her son not her husband!)
I've just watched Faster, one of my Love Film films. Didn't really enjoy it as its not my usual cup of tea. I'm not really sure how it ended up on my list. Didn't even have a fit actor in it! ;-)
It's sad to hear that Neil Armstrong has died. Although I wasn't born when he took his famous small step, I have always been fascinated by space travel - as a kid I remember wanting to be an astronaut! Space Camp will always have a special place in my 80s film loving heart! I can still sit through Apollo 13 and The Dish over and over again without getting bored! This evening I've read this quote from Neil Armstrong a few times and I think it sums things up for me on my current adventure:
"I believe that every human has a finite number of heartbeats. I don't intend to waste any of mine"
RIP Neil Armstrong
Xxxx
Anyway, apart from that excitement, I've had a really lovely day, and no sis that's not because you went home! ;-) hahaha! No, it's because I met up with my great friend Janey, her husband and little boy. Thanks so much guys for meeting me and for my tea and cookie! It was really lovely to see you, and to have a cuddle with Oscar (that's her son not her husband!)
I've just watched Faster, one of my Love Film films. Didn't really enjoy it as its not my usual cup of tea. I'm not really sure how it ended up on my list. Didn't even have a fit actor in it! ;-)
It's sad to hear that Neil Armstrong has died. Although I wasn't born when he took his famous small step, I have always been fascinated by space travel - as a kid I remember wanting to be an astronaut! Space Camp will always have a special place in my 80s film loving heart! I can still sit through Apollo 13 and The Dish over and over again without getting bored! This evening I've read this quote from Neil Armstrong a few times and I think it sums things up for me on my current adventure:
"I believe that every human has a finite number of heartbeats. I don't intend to waste any of mine"
RIP Neil Armstrong
Xxxx
Friday 24 August 2012
Pre-chemo jobs done
Well, I think they are all done anyway! I've been to have a dental checkup - all fine. I've made sure I'm stocked up on all the lotions and potions I need that the hospital does not provide, eg super strength moisturiser and gentle shampoo (thanks Lucy!) and this morning I went to get my hair cut and coloured. With the drug combo I'm on for chemo my hair thins but I'm lucky that I've always had a lot of hair and so ive never had any bold patches. My eye lashes fell out a few weeks after chemo finished last time tho - saved a few £ on mascara for a while there!! With my hair, unfortunately the grey hairs always remained stubborn and only the grey ones fell out! Typical!! Anyway, with only having (hopefully) 8 weeks of treatment I am hoping that having had my hair coloured this morning I'm hoping that not too much grey will show through before I can get it coloured again in October after treatment! We'll see!!!
Yesterday I met my friend Lucy for a bite to eat - we went to the newly opens Whole Foods Market just off Piccadilly. It was great to have a mooch around and the food was yummy! I would have loved to have stocked up with lots of lovely organic products if the ££ and arm strength (to carry it all) would allow!! I was surprised to see that some of the fresh fruit was grown in the USA! Surely the transportation costs and logistics would make it more feasible to source produce from the UK?! Anyway, still a great shop to mooch around.
Have a fun weekend everyone! Don't forget the waterproofs!!
Xxx
Yesterday I met my friend Lucy for a bite to eat - we went to the newly opens Whole Foods Market just off Piccadilly. It was great to have a mooch around and the food was yummy! I would have loved to have stocked up with lots of lovely organic products if the ££ and arm strength (to carry it all) would allow!! I was surprised to see that some of the fresh fruit was grown in the USA! Surely the transportation costs and logistics would make it more feasible to source produce from the UK?! Anyway, still a great shop to mooch around.
Have a fun weekend everyone! Don't forget the waterproofs!!
Xxx
Wednesday 22 August 2012
Be gone curse!
Well another afternoon was spent at the hospital today! It turned out from X-ray number 1 that the end of my PICC line hadn't flipped down into the correct position overnight. This meant another trip to venous access - why is it at the other end of the hospital to the X-ray department!!??!! Anyway, we got there to be told that there would be an hour wait. Mum and I then decided to go and get a drink from the cafe and sit outside rather than remain in the waiting room. (Yes, we'd decided to risk just mum coming with me again - curse be damned!!) On returning to venous access, I was taken through. The original plan was to insert a guide wire through the line they'd put in yesterday and then remove the line and thread another line through over the guide wire and hopefully into the correct position. Well, best laid plans and all that - the nurse practitioner pulled the PICC line out too far to be able to put a guide wire through - she was only meant to retract it a few cm but got carried away and pulled out 36cm of the 40cm they'd put in and as my veins were so deep it had popped out of the vein (they could tell this when they inserted the guide wire and it made me cry out in pain - it's not meant to hurt!). Anyway, the next plan was to start again from the beginning. Oh well!! Luckily the nurses took pity on me and let me have some cold spray on my arm to numb my arm before they injected the stingy local anaesthetic, normally reserved for the children!! :-) it worked a treat, although i'm not sure it would be very pleasant if I was cold sensitive from oxyplatin! Well, the second line went in ok and this time they used ultra-sound on both sides of my neck to check that the line hadn't gone astray again! Apparently, they hadn't seen in years what happened yesterday! I must be special!! Hahaha
Well, although the nurses in venous access were confident that the line was in the right place, off to X-ray we went again to check! We certainly clocked up the steps today. Another gown was put on and X-ray number 2 of the day was done! This time the radiographer thought the line was in the right place but he wasn't confident enough to let me go home without me being seen by venous access again!! High Ho high Ho it was off back across the hospital again!! Grrr! By the time we'd got back the nurse had looked at the X-ray image and thought all was fine so I could go home!! At last!! Although it was a bit of a faff having to go back again today, Maria, the nurse practitioner who supervised yesterday and today, was great - keeping me distracted with chatting about all sorts of random things, from why the weather is so changeable here compared with her home in the Philippines to how to curl your eyelashes with a pen!! It was great! :-)
Anyway, hopefully that'll be it for hospital visits until Tuesday - chemo day!! Now I'm going to enjoy my free days with my friend, the PICC, back in my arm. Pity the weather looks like sticking with the rules of a British bank holiday - don't forget your brollies if you're heading out and about!! ;-)
Take care y'all!
Xxxx
Well, although the nurses in venous access were confident that the line was in the right place, off to X-ray we went again to check! We certainly clocked up the steps today. Another gown was put on and X-ray number 2 of the day was done! This time the radiographer thought the line was in the right place but he wasn't confident enough to let me go home without me being seen by venous access again!! High Ho high Ho it was off back across the hospital again!! Grrr! By the time we'd got back the nurse had looked at the X-ray image and thought all was fine so I could go home!! At last!! Although it was a bit of a faff having to go back again today, Maria, the nurse practitioner who supervised yesterday and today, was great - keeping me distracted with chatting about all sorts of random things, from why the weather is so changeable here compared with her home in the Philippines to how to curl your eyelashes with a pen!! It was great! :-)
Anyway, hopefully that'll be it for hospital visits until Tuesday - chemo day!! Now I'm going to enjoy my free days with my friend, the PICC, back in my arm. Pity the weather looks like sticking with the rules of a British bank holiday - don't forget your brollies if you're heading out and about!! ;-)
Take care y'all!
Xxxx
Tuesday 21 August 2012
The curse strikes again
I really should know by now not to go to hospital with just mum - something always goes wrong! Well, today we went to get my PICC line put in ready for chemo next Tuesday. Anyway, all seemed to go fine as far as I could tell and I didn't feint!! I had the chest X-ray to check that the line was in the right place but unfortunately it wasn't. Instead of going up my right arm, across the top of my chest and towards my heart it goes up the vein on the left hand side of my neck! Oops! Apparently in 80% of cases in active people the line will flip into the correct position thanks to gravity and movement. Hopefully this will happen with me. I am heading back to the hospital tomorrow to have another chest X-ray to check it has. If not, I'll have to either have the current line fiddled with to get it in the right place or have another line in put in. Fun fun fun!! Oh well, it's better to have a PICC line in rather than have to have needles every time I have chemo and blood tests!
In other news, I had a lovely day on Saturday. It started with meeting my friend from uni, Anne-Marie, for lunch and an afternoon relaxing in St. James' Park. Thank you so much for coming up to London to see me! I'm so lucky that my friends are willing to come to see me, with Anne-Marie this week and Sarah coming from Plymouth a few weeks ago.
On Saturday evening I met with friends in Richmond to celebrate Sam's 30th birthday with a surprise party! We were thankful to be able to escape from the heat of the pub onto the Green which had turned into a big, communal beer garden for the surrounding pubs!! We did manage to have cake in the pub though, although the cake had melted to about half it's height!! Hahaha! Two of the balloons that we'd blown up popped in the heat as well!! The other advantage to sitting on the Green was that we could have a chip supper from the chippy down the street!! :-)
Last night I met some of my friends from work after their training day for a good catch up over a few (soft) drinks in the new beer garden that one of the local pubs had opened. It was great to see them and hopefully I'll see them again soon.
One final mention must be to baby Callan George - welcome to the world! Congratulations to Nikki, Ian and Ewan on the new edition to your family!! I'm looking forward to coming for a cuddle soon!
Signing off for now!
Xxxx
In other news, I had a lovely day on Saturday. It started with meeting my friend from uni, Anne-Marie, for lunch and an afternoon relaxing in St. James' Park. Thank you so much for coming up to London to see me! I'm so lucky that my friends are willing to come to see me, with Anne-Marie this week and Sarah coming from Plymouth a few weeks ago.
On Saturday evening I met with friends in Richmond to celebrate Sam's 30th birthday with a surprise party! We were thankful to be able to escape from the heat of the pub onto the Green which had turned into a big, communal beer garden for the surrounding pubs!! We did manage to have cake in the pub though, although the cake had melted to about half it's height!! Hahaha! Two of the balloons that we'd blown up popped in the heat as well!! The other advantage to sitting on the Green was that we could have a chip supper from the chippy down the street!! :-)
Last night I met some of my friends from work after their training day for a good catch up over a few (soft) drinks in the new beer garden that one of the local pubs had opened. It was great to see them and hopefully I'll see them again soon.
One final mention must be to baby Callan George - welcome to the world! Congratulations to Nikki, Ian and Ewan on the new edition to your family!! I'm looking forward to coming for a cuddle soon!
Signing off for now!
Xxxx
Friday 17 August 2012
Almost chemo time again
Well folks,
I saw my lovely oncologist this morning to discuss what happens next. After I told her about my operation and what the Guildford surgeon had said on monday, she left it up to me as to whether I wanted chemo. I told her that I don't want to turn around in 10 years time and regret not giving this everything I've got so I want to have more chemo. I'm not sure what she would have said if I'd said I didn't want any more chemo, but I think my sis would have killed me if I didn't have more chemo just to make sure!! Anyway, my oncologist thinks that only 4 cycles of chemo, along with the 4 remaining doses of cetuximab, is needed, so all this could be done with by mid October!!! Crazy!! I guess I'd then have to go back to work!! Hahaha
well, anyway, chemo & cetuximab cycle one is due to commence on Tuesday 28th August. I was surprised that I could get an appointment for the bank holiday week, which is always crazy busy!! I'm not sure that the chemo day unit realise that I'll be there a minimum of 5 hours (most likely at least an hour longer with all the saline flushes I have to have between chemicals)!! I must remember my good book otherwise I'll have to help Sarah revise for her exams!! ;-)
With chemo restarting I have to have another picc line put in next Tuesday! Time to get practicing wrapping my arm in cling film again!! Hahaha! At least I know what to expect this time (not that I'm promising not to feel feint when they insert the line again!) and I know full well what the benefits of having the picc in are.
Well, with about 10 days to go until the chemo, I've got various pre chemo jobs booked, like having a check up at the dentist and getting my hair cut and coloured - I wonder with potentially only having 4 cycles of treatment if the grey hairs will have time to make a reappearance before I can get it coloured again after chemo?!?! I'm also hoping to meet up with various friends, starting with Anne-Marie for lunch tomorrow! Can't wait to see everyone!!
Well, I think I'd better try and get some sleep so that I don't get too dozy in the sunshine tomorrow!!
Have a great weekend everyone!
Xxxx
P.S. here's a pic I took today - not quite the Saltire:
I saw my lovely oncologist this morning to discuss what happens next. After I told her about my operation and what the Guildford surgeon had said on monday, she left it up to me as to whether I wanted chemo. I told her that I don't want to turn around in 10 years time and regret not giving this everything I've got so I want to have more chemo. I'm not sure what she would have said if I'd said I didn't want any more chemo, but I think my sis would have killed me if I didn't have more chemo just to make sure!! Anyway, my oncologist thinks that only 4 cycles of chemo, along with the 4 remaining doses of cetuximab, is needed, so all this could be done with by mid October!!! Crazy!! I guess I'd then have to go back to work!! Hahaha
well, anyway, chemo & cetuximab cycle one is due to commence on Tuesday 28th August. I was surprised that I could get an appointment for the bank holiday week, which is always crazy busy!! I'm not sure that the chemo day unit realise that I'll be there a minimum of 5 hours (most likely at least an hour longer with all the saline flushes I have to have between chemicals)!! I must remember my good book otherwise I'll have to help Sarah revise for her exams!! ;-)
With chemo restarting I have to have another picc line put in next Tuesday! Time to get practicing wrapping my arm in cling film again!! Hahaha! At least I know what to expect this time (not that I'm promising not to feel feint when they insert the line again!) and I know full well what the benefits of having the picc in are.
Well, with about 10 days to go until the chemo, I've got various pre chemo jobs booked, like having a check up at the dentist and getting my hair cut and coloured - I wonder with potentially only having 4 cycles of treatment if the grey hairs will have time to make a reappearance before I can get it coloured again after chemo?!?! I'm also hoping to meet up with various friends, starting with Anne-Marie for lunch tomorrow! Can't wait to see everyone!!
Well, I think I'd better try and get some sleep so that I don't get too dozy in the sunshine tomorrow!!
Have a great weekend everyone!
Xxxx
P.S. here's a pic I took today - not quite the Saltire:
Monday 13 August 2012
Liver check-up
This morning I had my appointment with the liver surgeon as a follow-up to my surgery four and a half weeks ago. We got to the hospital in Guildford about 45 mins early thanks to little traffic on the drive down from London. Of course this meant that the doctors in the clinic were running an hour late!! There was one particularly disgruntled woman who kept complaining about having been there since 9am (it was 10.30 by then). Turns out her appointment time was 10.20!!! I think you just have to go with the flow a bit when it comes to waiting for hospital appointments. The doctors aren't intentionally leaving people waiting. They are generally just timetabled to do too much in too little time I think. Anyway, whilst we were waiting (Dad came with me again - thanks Dad!) my assigned clinical nurse specialist, Laura, came by and asked how it was all going. She told me that as far as she knew all was fine and that she'd not see me again!!! Well, the doctor (one of the registrars on my surgeon's team) called us through. He told us that the whole tumour had been removed. It had been tested and was shown to have been cancerous - most likely a secondary tumour to the bowel cancer. Apparently, there are times that it comes out that the tumour is not cancerous but it's better to take out the growth than leave it!! They don't biopsy such things, not just because of the risk of bleeding but also because the act of biopsying the tumour can lead to a 5-20% risk of the cancer spreading!! Yikes! Glad they didn't biopsy! The doctor took a look at my scar and felt my tummy while I coughed and said it all looked good. He is referring me back to my oncologist for possibly more chemo. They don't want to see me again at Guildford unless there are any further problems with my liver, so hopefully that's it for trips down the A3, well unless there's shopping and not hospitals involved!!! :-)
It's such a relief not to have to worry about that anymore. Now for cracking on with my last round of chemo!!
On another note, anyone else at a loss as to what to do now the Olympics has finished??!! Bring on the Paralympics!!
Xxxx
It's such a relief not to have to worry about that anymore. Now for cracking on with my last round of chemo!!
On another note, anyone else at a loss as to what to do now the Olympics has finished??!! Bring on the Paralympics!!
Xxxx
Thursday 9 August 2012
Wow ... It has been a while!
I can't believe that it has been sooooo long since I last posted on here!! Sorry folks! I bet you are all dying to know what I have been up to and how it is all going (not)!
Well ...
It is now 4 weeks since I had my liver resection operation and I am so pleased and surprised with how things have been going. The first couple of days I was out of hospital were tough and my poor sis had to put up with my winging. Warning, blunt fact ... I wasn't sure whether I was constipated or whether I just had bad diarrhoea, so I was on all sorts of things trying to get more comfortable - prune juice is not very nice!! I was also having hot sweats and shivering. Luckily, my core temperature remained stable and so doctor sister decided to take up a watch and wait practice. Thankfully I was feeling much better on day three of being at home and was able to eat proper meals and I didn't have to have any more Fortisip (a high nutritional milkshake type drink that is good for you, but as a result tastes absolutely awful and just leaves a sticky coating around my mouth and down my throat!!) There are still three bottles of banana flavour Fortisip in the fridge if anyone wants any!!!!
My aim before the operation was to try and keep walking at least a little each day and to get down to Tooting Bec to watch the Olympic torch relay go past on Monday 23rd July. This is about half a mile from where I live. I was really pleased to find that I was able to walk a lot more easily than after my bowel operation, which I think is certainly helped by the fact that it is not my lower abdominal muscles that were cut through - this time the incision runs from my breast bone around the bottom of my right ribcage to my waist, so the two scars won't actually meet up! Because of where the staples started, I wasn't able to wear a bra whilst the staples in. I was also walking scrunched over to stop pulling on my wound. It meant that I was getting a bad back. I was going for a walk every day though, with Sarah taking me around the block. I got more and more confident that I was going to be able to walk to Tooting Bec and back. We had the folding stool at the ready for me to sit on whilst waiting for the relay to go past. Before the trek up the road though I had to have my staples out at the GPs. The nurse seemed to think that the wound was healing well (sister doctor had said that already, but reassuring none-the-less). Having staples out feels probably much as you'd imagine! Thankfully there were only a couple of more stubborn ones! After leaving the GPs, we walked down to Tooting Bec and picked out spot in the shade next to the chip shop to wait the hour until the relay was due. I was thankful for the stool, and for the iced lolly that Sarah bought me - thanks sis! It was pretty busy and getting more so! A friendly policeman from the Borders and Lothians force told us that they were only going to stop traffic on the other side of the road, so we were best off crossing to get a better view. Thankfully we followed his advice and moved to the shade of the bus stop. We had a good view when the torch relay came through and even saw the flame being 'kissed' to the next torch bearer a few metres away! Here's Sarah's photo of it (I somehow missed the key moment with my camera!):
Well ...
It is now 4 weeks since I had my liver resection operation and I am so pleased and surprised with how things have been going. The first couple of days I was out of hospital were tough and my poor sis had to put up with my winging. Warning, blunt fact ... I wasn't sure whether I was constipated or whether I just had bad diarrhoea, so I was on all sorts of things trying to get more comfortable - prune juice is not very nice!! I was also having hot sweats and shivering. Luckily, my core temperature remained stable and so doctor sister decided to take up a watch and wait practice. Thankfully I was feeling much better on day three of being at home and was able to eat proper meals and I didn't have to have any more Fortisip (a high nutritional milkshake type drink that is good for you, but as a result tastes absolutely awful and just leaves a sticky coating around my mouth and down my throat!!) There are still three bottles of banana flavour Fortisip in the fridge if anyone wants any!!!!
My aim before the operation was to try and keep walking at least a little each day and to get down to Tooting Bec to watch the Olympic torch relay go past on Monday 23rd July. This is about half a mile from where I live. I was really pleased to find that I was able to walk a lot more easily than after my bowel operation, which I think is certainly helped by the fact that it is not my lower abdominal muscles that were cut through - this time the incision runs from my breast bone around the bottom of my right ribcage to my waist, so the two scars won't actually meet up! Because of where the staples started, I wasn't able to wear a bra whilst the staples in. I was also walking scrunched over to stop pulling on my wound. It meant that I was getting a bad back. I was going for a walk every day though, with Sarah taking me around the block. I got more and more confident that I was going to be able to walk to Tooting Bec and back. We had the folding stool at the ready for me to sit on whilst waiting for the relay to go past. Before the trek up the road though I had to have my staples out at the GPs. The nurse seemed to think that the wound was healing well (sister doctor had said that already, but reassuring none-the-less). Having staples out feels probably much as you'd imagine! Thankfully there were only a couple of more stubborn ones! After leaving the GPs, we walked down to Tooting Bec and picked out spot in the shade next to the chip shop to wait the hour until the relay was due. I was thankful for the stool, and for the iced lolly that Sarah bought me - thanks sis! It was pretty busy and getting more so! A friendly policeman from the Borders and Lothians force told us that they were only going to stop traffic on the other side of the road, so we were best off crossing to get a better view. Thankfully we followed his advice and moved to the shade of the bus stop. We had a good view when the torch relay came through and even saw the flame being 'kissed' to the next torch bearer a few metres away! Here's Sarah's photo of it (I somehow missed the key moment with my camera!):
I was so pleased to have seen the torch, but more so, that I had been able to meet my challenge of walking there and back!!
Next challenge was to be able to walk the mile (approx) each way to be able to visit my pregnant friend Nikki by the end of the week. I was therefore taken out for a walk each day by Sarah to make sure I was going to be able to do this! My slow shuffle was getting better all the time and thankfully the hot weather lead to pleasant evenings to be able to do this! It was really nice to be able to catch up with Nikki before her baby turned up!
Now, as an armchair sports fan, the London Olympics being whilst I am off work has been a godsend! And as it turned out it was probably a good thing that I hadn't won tickets for anything! I had managed to get Sarah almost as addicted as me to cycling watching the Tour de France in that first week of me being out of hospital so we decided to go to Putney on the Saturday morning to see the men's road race speed by on the way down to Surrey. First though we tuned in for the opening ceremony - wow!! I thought it was brilliant and was so enthralled by it. I think my favourite bit was the NHS / Great Ormand Street Hospital bit with all the kids bouncing on their beds - looked loads of fun! From the top floor of the building I live in you can get great views across London, so Sarah and I decided to go up there to watch the fireworks at the end of the ceremony. We couldn't make it out totally, but still we managed to see some of the lights. Stupidly, we only took our iPhones with us and not our cameras, but here's some fuzzy fireworks pics:
Anyway, back to our road race viewing plans. We decided that to make sure we could get a good spot we needed to be in Putney an hour before the cyclists were due through, so it was an early alarm, well relatively considering we had been up watching the opening ceremony until the early hours!! ;-) Along came the trusty stool again and my Olympic scarf had arrived so I could wear that around my shoulders! I took my camera with me this time and set it on sport mode for continuous shooting! This meant that I got quite a few photos as the cyclists speed through in one big bunch!. Luckily from our spot on the Upper Richmond Road we had a great view as they came around the corner from Putney High Street. Here are some of the pics:
OK, so they zoomed passed at around 1000mph but looking back at the photos, I think I have identified three of the Team GB squad (please let me know if I have got this wrong).
1. Sir Bradley Wiggins
2. Ian Stannard
3. Chris Froome
It's just a shame I didn't get Cav and David Millar - they shouldn't have been peddling so fast!! Now the theory for the rest of the day was to go home and shout at the TV whilst Cav sprinted across the line for the gold medal. Alas the rest of the world didn't cooperate and the medal went to someone else! Oh well, it was the start of what has turned into nearly two weeks (so far) of getting increasingly square eyes!! I have loved shouting at the TV and watching so many different sports. I'm not sure what I think of boxing and taekwondo, where the aim is to hit / kick the opponent in the head to get points but I do respect the athletes for their commitment to their sport. And as for dressage .... horses dancing to music is just bizarre, but we won a gold so I can't complain too much! The cycling though has remained my favourite and I was jumping up and down at the TV when Wiggo won the road time trial and all the golds in the velodrome were fantastic!! Here's a photo of my sis celebrating Wiggo's victory (complete with Sainbury's carrier bag sideburns!):
I think that the BBC have done a brilliant job of showing everything and generally the presenters / commentators have been fab, with Clare Balding and Mark Foster in the Aquatic Centre and Jake Humphrey and Mark Cavendish in the velodrome my faves, but Gary Lineker is getting on my nerves a bit!! I just can't believe there are only three more days to go and I wish I could have got to more events, but I am really looking forward to going to the Paralympics in September - I have wheelchair basketball, swimming and athletics tickets!! Go Team GB!!
Now just to prove that I have not been just slouched on the sofa, I have been carrying on with my walking most days and over the weekend I walked 5.5km each day around the park. The showers did get me, but it was great to be out amongst the trees and wildlife again:
I also met up with an old friend for lunch last Monday. She is in London working as a games maker and so it was a great opportunity to get together after too long! I loved hearing about what she was up to at the Olympics and we had a lovely walk around Victoria and Green Park. I even saw the back of the Beach Volleyball Arena:
Thanks for meeting with me Vicky, and I hope that you enjoy the rest of your summer!
Now, back to the cancer stuff ... I am still progressing well after surgery. I came off painkillers (ibuprofen and paracetamol) totally about a week ago, having been on maximum daily dosage for about 10 days after coming home and then easing off. I was also given a box of Tramadol when I left hospital, but this has left me fuzzy headed in the past and so I only took one each of the first couple of nights I was home. I have also had to inject myself each night with an anti-clotting drug to prevent me getting a deep vein thrombosis or pulmonary embolism! Now the thought of having to inject myself really didn't appeal, especially as a recovering needle phobic! I had to show the nurses I could do it before I left hospital, which I did, but I must admit that for the first 10 days at home I chickened out and Sarah did it for me. I did buck up my courage after that though and have been giving myself the injections the last week. I was very glad last night that this was my sight when tipping out the box though:
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| The last one!!! |
I am now done with adding a new bruise to my thighs each night and having to put up with the f**king painfully stinging of the drug (Fragmin) going in, which tended to last a minute or so afterwards - brought a tear to my eyes often!! I'm not sure if there are any ways to stop this but I found that going quick with the injection certainly got it over and done with quicker. I can now start smothering on the arnica cream to hopefully help the bruises! I have just got to remember to take my sharps bin back to the hospital on Monday for them to get rid of!! Thank you so much to Yogi Clare for all the work you did with me on my needle phobia - I certainly couldn't have got through the last 4 weeks without it!!
I am now back at my parents for a few days of mum fussing!! It also means that Dad and I can shout at the tv together!! :-) On Monday I had my routine 6 month check with my original (bowel) surgeon. He hadn't realised that I had had my liver surgery and so was pleased with how well I looked. He had a look at the wound and said it all looked good. All in all he was happy and I next see him in 6 months! Next Monday I head back to Guildford to have a check-up with my liver surgeon (or one of his minions) and hopefully that'll then be me discharged from his service and solely back in the hands of the oncology team at St George's for my 12 weeks of post-op chemo. I see my oncologist on Friday next week to hopefully start making plans for this. I am not sure yet when it will all kick off again, but hopefully around the end of this month or the start of September so I can have it all done and dusted nicely before Christmas.
Right, I guess I had better sign off there and let you all get on with your lives!! Thanks for reading! I'm off for my shot of aloe vera juice and my wheatgrass juice!
Enjoy the rest of the Olympics - go Team GB!!!
xxxxxx
P.S. Just wanted to show you the yummy tart that Sarah made me as a surprise for the start of the Olympics:
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