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
Friday 19 October 2012
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
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