Well, today I have managed to walk 5km for the first time in ages, which makes me think that I will be able to do the Race for Life without any problems, thank goodness!!! I completed it in 1 hour 8 minutes, so maybe I won't be last in the race after all! ;-)
Now time to make some Thai green curry for dinner - yum yum!!
xxxx
Tuesday 29 May 2012
Monday 28 May 2012
Not fair!
Oh, it is not fair! Just to torture me the peeps in one of the houses neighbouring my building is obviously having a BBQ and I can smell it! Humffff!
xxx
xxx
Should have eaten more bananas
Well, after my weekend last weekend in the bathroom, the blood tests done last Monday unsurprisingly showed that I was a bit dehydrated. My sodium levels weren't too bad - I guess that the bag of pretzels worked then! I did have low potassium though. I knew that I should have eaten more bananas!! Anyway, this meant that in addition to the cetuximab infusion on Tuesday, I also had to have some fluids and potassium. Because potassium can cause heart problems, the potassium laced saline had to be dripped into me over the course of 4 hours. This meant another all day event at the hospital, with a 2 hour cetuximab infusion following the fluids! I was the last patient on the unit by the end of the day and poor Selina (my nurse that day) was itching to go home too by the end of it! Oh well, at least we had taken books and lunch with us and I managed to sleep for an hour or two! Once all the infusions were done it was time to say goodbye to my good friend - my PICC line. I was pleasantly surprised at how easily it came out and more importantly how it didn't bleed!! Now I just have five little dots on my arm where the line went in and the two stitches were. I'm sure they'll scar a little bit, but it's been much better than being attacked by needles every week!
Anyway, that was Tuesday. Wednesday I met up with a friend, Lucy. It was lovely not to be cold sensitive and so I was able to enjoy a cold smoothie in the warm weather! In the evening, Sarah and I headed up to Chelsea (darling) for the launch event for the Liz Earle Colour range. I have been using most of the skincare range from Liz Earle for a number of years and would recommend it to anyone. Even now with my super dry and sensitive skin, it has not really caused any problems for me. As my family can testify, my bathroom cupboard is chocked full of the products!!! ;-) Anyway, unfortunately, my facial rash was playing up in the heat so I wasn't really in a place to try any of the new make-up, but it all looked good and I did treat myself to another lip gloss (have one or two lip glosses to say the least). After a wander up the Kings Road and a pizza for dinner, we did a tour of inner south-west London on the bus home!
Thursday was a bit of a lazy day after a morning yoga session with Clare - I was able to do more now that my PICC is gone, which was great, although with the warm weather it did give me a little taste of what Bikram yoga is like! I'm not sure that I could cope with the heat that involves!
Sarah went home on Thursday and it was time for me to fly solo for a week. With the heat (my flat has been getting up to 27C), I must admit I have not done a lot. I have managed to get a walk in each day and I think I have figured out now how to use the Nike + GPS app on my phone so that I can more accurately measure how far I have walked! It is less than two weeks now until I have to do my Race for Life (shameless plug for my sponsor page coming up: My sponsorship page for Race for Life) so I really have to get practising. I am hopeful that I will manage to get up to the 5km distance this week, with some less hot weather expected as the week moves on.
I had a lovely long lunch with my friend Lindsay on Saturday. We managed to get an outside table in the sunshine at one of the local pubs, albeit next to the road. Why are there no decent beer gardens in London?! Anyway, it was lovely to catch up with Lindz and hear all about her plans - hope the leg and foot heal quickly hun!!
So I am now not only in Race for Life preparation mode, but am also trying to get ready for my holiday to Spain with 7 mates from work. I have been trying on summer clothes and it looks like I have to go shopping for shorts - watch out world, the legs may be coming out!! I have ordered a couple of tankinis from the net - my lovely scar is a good excuse to not get into bikini shape!! ;-) As if that is ever going to happen! I just hope they arrive in time. I must admit I was very pleased to find that last years cropped trousers still fit - couldn't have coped the last few days otherwise! I just hope the weather is going to be nice and that us 8 weather forecasters do not bring a curse of bad weather! :-) I have managed to complete one piece of holiday preparation today though - the all important ice cream test! I have not dared try ice cream since starting chemo again as the cold could have closed my throat. But I decided that as I can handle things in the fridge and freezer again without incident, it was probably safe to try ice cream again. You'll be pleased to hear that I survived and the ice cream was very nice and much appreciated on another hot day! Yay!!!
The rest of the week will hopefully be spent getting in more walks, 2 or maybe even 3 yoga sessions (they have started a 'Yoga for Cancer Care' class at my local studio which I am keen to try) and then I am heading back to my folks place for the Jubilee weekend and Dad's birthday! I may even manage to find some shorts!
Oh, while I think about it, I need some advice from my Apple addicted friends (the technology not the fruit). I have been trying to hold out for the iPhone 5 before changing my phone, but my current iPhone 3 is really beginning to suffer from old age (it is so slow to do anything and a lot of the apps are now saying that they will not work properly). The latest rumour I have read online is that the new phone will be out in Oct (I was hoping for June / July). So anyway, do you think it is worth trying to wait out for the iPhone 5 or is it not likely to be much different from the 4S, which I could upgrade to now? Thanks! (I must admit to almost upgrading the other night as well as almost getting myself the new iPad - I can't really justify that though as I have a laptop, iPhone and a Kindle so can't really see the need for an iPad)
Anyway, enough of my ramblings - I'm sure you've all gone to light the BBQ and open the Pimms by now (I miss both these things but don't have a garden so can't have a BBQ and as yet have not really started drinking again yet) and if not have dropped off to sleep!! ;-)
Enjoy the sunshine!
xxxxxxxx
Anyway, that was Tuesday. Wednesday I met up with a friend, Lucy. It was lovely not to be cold sensitive and so I was able to enjoy a cold smoothie in the warm weather! In the evening, Sarah and I headed up to Chelsea (darling) for the launch event for the Liz Earle Colour range. I have been using most of the skincare range from Liz Earle for a number of years and would recommend it to anyone. Even now with my super dry and sensitive skin, it has not really caused any problems for me. As my family can testify, my bathroom cupboard is chocked full of the products!!! ;-) Anyway, unfortunately, my facial rash was playing up in the heat so I wasn't really in a place to try any of the new make-up, but it all looked good and I did treat myself to another lip gloss (have one or two lip glosses to say the least). After a wander up the Kings Road and a pizza for dinner, we did a tour of inner south-west London on the bus home!
Thursday was a bit of a lazy day after a morning yoga session with Clare - I was able to do more now that my PICC is gone, which was great, although with the warm weather it did give me a little taste of what Bikram yoga is like! I'm not sure that I could cope with the heat that involves!
Sarah went home on Thursday and it was time for me to fly solo for a week. With the heat (my flat has been getting up to 27C), I must admit I have not done a lot. I have managed to get a walk in each day and I think I have figured out now how to use the Nike + GPS app on my phone so that I can more accurately measure how far I have walked! It is less than two weeks now until I have to do my Race for Life (shameless plug for my sponsor page coming up: My sponsorship page for Race for Life) so I really have to get practising. I am hopeful that I will manage to get up to the 5km distance this week, with some less hot weather expected as the week moves on.
I had a lovely long lunch with my friend Lindsay on Saturday. We managed to get an outside table in the sunshine at one of the local pubs, albeit next to the road. Why are there no decent beer gardens in London?! Anyway, it was lovely to catch up with Lindz and hear all about her plans - hope the leg and foot heal quickly hun!!
So I am now not only in Race for Life preparation mode, but am also trying to get ready for my holiday to Spain with 7 mates from work. I have been trying on summer clothes and it looks like I have to go shopping for shorts - watch out world, the legs may be coming out!! I have ordered a couple of tankinis from the net - my lovely scar is a good excuse to not get into bikini shape!! ;-) As if that is ever going to happen! I just hope they arrive in time. I must admit I was very pleased to find that last years cropped trousers still fit - couldn't have coped the last few days otherwise! I just hope the weather is going to be nice and that us 8 weather forecasters do not bring a curse of bad weather! :-) I have managed to complete one piece of holiday preparation today though - the all important ice cream test! I have not dared try ice cream since starting chemo again as the cold could have closed my throat. But I decided that as I can handle things in the fridge and freezer again without incident, it was probably safe to try ice cream again. You'll be pleased to hear that I survived and the ice cream was very nice and much appreciated on another hot day! Yay!!!
The rest of the week will hopefully be spent getting in more walks, 2 or maybe even 3 yoga sessions (they have started a 'Yoga for Cancer Care' class at my local studio which I am keen to try) and then I am heading back to my folks place for the Jubilee weekend and Dad's birthday! I may even manage to find some shorts!
Oh, while I think about it, I need some advice from my Apple addicted friends (the technology not the fruit). I have been trying to hold out for the iPhone 5 before changing my phone, but my current iPhone 3 is really beginning to suffer from old age (it is so slow to do anything and a lot of the apps are now saying that they will not work properly). The latest rumour I have read online is that the new phone will be out in Oct (I was hoping for June / July). So anyway, do you think it is worth trying to wait out for the iPhone 5 or is it not likely to be much different from the 4S, which I could upgrade to now? Thanks! (I must admit to almost upgrading the other night as well as almost getting myself the new iPad - I can't really justify that though as I have a laptop, iPhone and a Kindle so can't really see the need for an iPad)
Anyway, enough of my ramblings - I'm sure you've all gone to light the BBQ and open the Pimms by now (I miss both these things but don't have a garden so can't have a BBQ and as yet have not really started drinking again yet) and if not have dropped off to sleep!! ;-)
Enjoy the sunshine!
xxxxxxxx
Monday 21 May 2012
Owww!
Why do paper cuts hurt so much?? I'd say its worse than abdominal surgery, but that might be a slight exaggeration! Hurts though! :-(
xxx
P.S. My good friends Paul and Helen witnessed the eclipse from Texas yesterday. Paul has posted some great photos on his blog - http://ukstormchaser.blogspot.co.uk/ I'm sure he won't mind if you take a look!
xxx
P.S. My good friends Paul and Helen witnessed the eclipse from Texas yesterday. Paul has posted some great photos on his blog - http://ukstormchaser.blogspot.co.uk/ I'm sure he won't mind if you take a look!
Sunday 20 May 2012
Dead tumour!
As many of you know from Facebook (thanks for all the comments and likes), I had some good news about my scan when I saw my oncologist in clinic on Friday. Dr Lofts told me and Dad (my oncology clinic buddy) that the tumour looks like it has died!! Now, I was just hoping to hear that it hadn't grown and that there was nothing else showing up - there is nothing else showing up - but to hear that we'd killed the tumour was great news!! She showed us on the scan images that the tumour is showing as a black blob in the top of my liver. She said that this means that there is no blood flow in the tumour as it was not showing up any contrast dye that had been injected into me. This is in contrast to other scans that have shown it as a bright spot where a lot of the dye has been in the tumour. This is all great news! Whether it is a result of the chemo drugs or my mouse treatment or the other things I have been doing - trying to cut down on sugary foods, eating more fruit and veg, adding turmeric to random meals - I am not sure, but I expect it was a combination of factors. Anyway, whatever it was, it's something that has worked in my favour and I am not going to worry about it! I now have one final mouse treatment on Tuesday just to make doubly sure that nothing has the chance to do anything. It is then rest and recovery time before the operation in July and then twelve more weeks of chemo and eight more weeks of mouse treatment in the late summer / early autumn to just mop up any rogue bowel cancer cells that might be bobbing about!
It turns out that I am going to have to have my PICC line out before the operation as they will be putting a central line into the same vein, so I may well be getting my PICC out on Tuesday after my mouse treatment. This will mean that I won't have to go to the hospital every week to get it cleaned and flushed and I will be able to leave off the cling-film every time I have a shower!! I'd then get another PICC put in before starting chemo again later in the year. This will obviously make life much easier over the next few weeks, but I am a bit nervous about getting it out and another one put in - it wasn't the most pleasant experience having it put in, but then I guess I'll know what to expect next time I have it put in. I'm also a bit nervous about having to be attacked by needles again when it comes to having to have my MRI in Guildford in three weeks and again for my anaesthetic for the operation. I hope though that my veins will be in a more cooperative mood than they were for the aborted CT last week. Oh well, bridges to be crossed when we get to them I guess!!!
All in all a good news day!
I've since been having a lazy weekend as my body decided to let me know that I am still not totally well, even with the tumour now being dead! To put it politely, I have not dared move too far from the bathroom. Oh well, hopefully all will settle down soon and I can enjoy going to the hospital for treatment and not come out sensitive to the cold and totally drained of energy (and hopefully having not spent too many hours there - the treatment should take a little over two hours and then who knows how long it'll take for them to take out the PICC).
Right then folks, I hope y'all have a great week
xxxxx
It turns out that I am going to have to have my PICC line out before the operation as they will be putting a central line into the same vein, so I may well be getting my PICC out on Tuesday after my mouse treatment. This will mean that I won't have to go to the hospital every week to get it cleaned and flushed and I will be able to leave off the cling-film every time I have a shower!! I'd then get another PICC put in before starting chemo again later in the year. This will obviously make life much easier over the next few weeks, but I am a bit nervous about getting it out and another one put in - it wasn't the most pleasant experience having it put in, but then I guess I'll know what to expect next time I have it put in. I'm also a bit nervous about having to be attacked by needles again when it comes to having to have my MRI in Guildford in three weeks and again for my anaesthetic for the operation. I hope though that my veins will be in a more cooperative mood than they were for the aborted CT last week. Oh well, bridges to be crossed when we get to them I guess!!!
All in all a good news day!
I've since been having a lazy weekend as my body decided to let me know that I am still not totally well, even with the tumour now being dead! To put it politely, I have not dared move too far from the bathroom. Oh well, hopefully all will settle down soon and I can enjoy going to the hospital for treatment and not come out sensitive to the cold and totally drained of energy (and hopefully having not spent too many hours there - the treatment should take a little over two hours and then who knows how long it'll take for them to take out the PICC).
Right then folks, I hope y'all have a great week
xxxxx
Wednesday 16 May 2012
Travel insurance update
I know you've all been hanging on the edge of your seats with my insurance dilemma so I thought that I'd let you know that I've got it all sorted.
I spent this afternoon on the phone today and contacted all sorts of companies that apparently specialise in covering people with cancer. Anyway, after answering lots of medical questions I got various responses from 'sorry we can't cover you as you are still awaiting treatment' to 'yes we can insure you, for £1620' but finally I got the answer I was looking for 'yes we can cover you for the total premium of £28.98'!!! I couldn't believe it but yes a company called Insurancewith is giving me travel insurance to cover my cancer for less than £30! The only thing that isn't covered is if I need to cancel my trip because of needing treatment. I can live with that!! Yay yay yay! I'm off to Spain and no one needs to worry about pushing me down the stairs to break my leg to get me flown home if something cancery crops up!! ;-)
And Emma, Phil and Erin I will behave in the manor you suggest!! ;-)
Happy travels everyone
Xxxx
I spent this afternoon on the phone today and contacted all sorts of companies that apparently specialise in covering people with cancer. Anyway, after answering lots of medical questions I got various responses from 'sorry we can't cover you as you are still awaiting treatment' to 'yes we can insure you, for £1620' but finally I got the answer I was looking for 'yes we can cover you for the total premium of £28.98'!!! I couldn't believe it but yes a company called Insurancewith is giving me travel insurance to cover my cancer for less than £30! The only thing that isn't covered is if I need to cancel my trip because of needing treatment. I can live with that!! Yay yay yay! I'm off to Spain and no one needs to worry about pushing me down the stairs to break my leg to get me flown home if something cancery crops up!! ;-)
And Emma, Phil and Erin I will behave in the manor you suggest!! ;-)
Happy travels everyone
Xxxx
Tuesday 15 May 2012
CT scan success
Well, today has been a more successful day than yesterday. I got kindly woken by a call from a radiographer at the hospital (I'm not a morning person at the best of times, so I guess an 8.50am call isn't too bad really!) to try and sort out having a CT scan after last night's faffing. It turns out that I could have easily be canulated through my hand no problem, despite what the consultant said last night. However, when I mentioned that I had a PICC line, Brenda (the radiographer) seemed to think this was wonderful. She told me that depending on the type of PICC line I have, I could either be attached to the pump for the contrast dye to go in, or she could manually push the dye through the line. All in all I thought that this was great news - no needles! It was a good thing she called when she did though as I can't have food for 4 hours before the scan so no breakfast for me! (It was a good thing that we had fish and chips last night as a post (failed) scan treat!)
Anyway, I was already off to the hospital this morning for a non-cancer related appointment (at Christmas I was treated with a steroid injection for 'trigger finger' and this was just a check up to see if all was fine - it is). Therefore, we went off to the scanning department after my hand check up and met with the lovely Brenda. She remembers me from last year when we had the fun of the fire-alarm (I won't bore you with that story again - you must all know about it by now)!! She had a look at my PICC line and it is the new type that can be hooked up to the pump -yay!! So from there on it was smooth sailing - I was all connected up and the scan was done! I was even shown the poster on the wall on how to hook up a PICC to the pump for the contrast dye - not sure why they couldn't look at that last night!! According to Brenda, in future, make sure any CT appointments are daytime ones, not evening ones so that she can look after me!! :-)
This afternoon, Mum and I had a go at juicing for the first time - a nice green veg juice as recommended by Aisling - thanks Aisling! It was really yummy and I've made enough for the rest of the week! I'm now scouring my recipe books for the next idea, although Ingy I will be trying your suggestion - thanks mate!
The rest of today has consisted of more zzzzz!! I am slowly getting more energy each day, but it's being a slow old bounce-back this time around!
Mum's heading back home tomorrow and then it's Dad's turn to babysit Thursday / Friday so that we can go for my check-up with my oncologist and have my PICC flushed again - this PICC is getting an awful lot of TLC to help me get through the rest of my treatment!! Hopefully my oncologist will have some results from today's scan when we see her on Friday, so fingers crossed it doesn't show anything it shouldn't!
Well, that's all from me folks! All I have left to say is that I hope my great friends Helen and Paul get some bad weather to chase through the states soon!! Happy holidays guys!
xxxxxxx
Monday 14 May 2012
OK, so that was not entirely the plan
Today I've spent the day gearing myself up to have my CT scan just to see if anything new has cropped up in the last few months and (hopefully) see that my tumour has shrunk. Now, as you may well know, I have a real fear of needles and my veins seem to know this and therefore hide well whenever there are rumours that they are likely to come under attack (I have tiny, deep veins which also doesn't help). Anyway, I'd been warned that because of the need to have a contrast dye put through my system, with the amount and rate of this being carefully calculated based on it coming through a vein in my arm, I would most likely need to have a canular rather than them using my ever trusty PICC line. Hummmm
Of course it came to 7pm and time to have a game of hunt the vein!! I warned the poor radiographer that I was a bad patient when it comes to needles and veins so he promptly called for a consultant. Thankfully it was only a couple of minutes wait for him to arrive and we had a go at getting my stupid body to cooperate. In vein it turned out to be!! ;-) apparently to get a reliable image the contrast needs to go in at a specific rate and they couldn't find a vein big enough to support a canular to allow this required rate of infusion! Thankfully I only got stabbed once with a needle before the consultant called quits!! It all means that I have to go back another day to have a canular put in under ultra sound guidance and then attempt another scan!! It all seems a bit of a faff considering I've got a perfectly good line going into my right arm!! Oh well, at least temporarily it seems I will have two lines going in!!
So that was my day - how was everyone else's?
Xxxx
Of course it came to 7pm and time to have a game of hunt the vein!! I warned the poor radiographer that I was a bad patient when it comes to needles and veins so he promptly called for a consultant. Thankfully it was only a couple of minutes wait for him to arrive and we had a go at getting my stupid body to cooperate. In vein it turned out to be!! ;-) apparently to get a reliable image the contrast needs to go in at a specific rate and they couldn't find a vein big enough to support a canular to allow this required rate of infusion! Thankfully I only got stabbed once with a needle before the consultant called quits!! It all means that I have to go back another day to have a canular put in under ultra sound guidance and then attempt another scan!! It all seems a bit of a faff considering I've got a perfectly good line going into my right arm!! Oh well, at least temporarily it seems I will have two lines going in!!
So that was my day - how was everyone else's?
Xxxx
Friday 11 May 2012
Some other ramblings!
Right, now I've emptied my diary into my blog, what else has been going on?!
Last Friday was blood test and clinic day. All in all this went rather smoothly, or so I thought, but that may be down to the fact that the whole computer system at the hospital was down!!
As it turned out, it was not a smooth as I had hoped, as I got a call on Tuesday morning to say that my blood test results had been lost, probably thanks to the computers being down on Friday!! This meant that I had to rush down to the hospital to get more blood taken before my scheduled chemo that afternoon. However, with the time it would take to test the blood, have my chemo prescribed by a doctor, based on the blood test results, and then the drug made up, there would not have been enough time for my 4 and a half hours of treatment on Tuesday afternoon after all!! Grrrr
With it being a bank holiday week (the chemo day unit doesn't open on bank holidays), the rest of the week was fully booked on the unit as they tried to fit 5 days worth of treatment into 4 days. However, they did manage to fit me in for my chemo and mouse treatment on Wednesday - it only took 8 hours this time!! I was hooked up with condom bottle 6 and on my way home by 6pm! I just can't believe that this is the last chemo before the operation. I am really looking forward to not being sensitive to the cold and getting some energy back again - I've not been bouncing back fully over the last couple of chemo cycles, so it's been a bit frustrating!
At the moment I am still not sure whether I am going to have another mouse treatment in a fortnight - this will be decided at clinic next week - so I may have to put up with my lovely dry skin / spotty face for a while longer. I just hope that it's all cleared up by the time I go to Spain in mid June as I'm meant to keep out of the sun with this side effect - not been a problem here in London recently!! Speaking of my rash, I have been given some new cream to help treat it - so far it seems to be helping keeping it moisturised, but I am not sure whether it is any more effective that my own moisturisers, but at least it is free!! The only slightly concerning thing about the cream is that the second ingredient on the list is urea!!! Eekk! I just hope that it is synthetic! ;-) It does mean that the cream has been renamed wee cream in my flat!
OK, well I think that's all the cancer related news I have, so what else is going on?
I have been trying not to get too square eyes watching TV all the time, so I have been trying to keep up with my reading. I have just finished reading The Help on my kindle. I think this is a very good book - 5 star - and reminded me of reading To Kill a Mockingbird, which I really should read again as it's been years since I last read that (note to self - pick up my copy from mum and dad's next time I am back home). I also watched the movie adaptation of The Help, and whilst it was different to the book in places, I thought it was very well done and also deserves 5 stars. I am now trying to work my way through Life over Cancer - a book on an integrated approach to cancer treatment, which is a very interesting book on nutrition, complementary therapies and stress management along with conventional medical treatments. I think if nothing else, I am going to come out of this cancer adventure more informed, if not healthier, than before I started this journey.
My new juicer and blender have arrived and have taken over my kitchen, much to Sarah's annoyance I think. I also got some recipe books with them so I am hoping to have some fun messing around in the kitchen this weekend! My lovely friend Aisling brought me over some juices that she'd made me last week, so I am using them as inspiration. I just hope my attempts turn out as nice as hers!
I had a lovely reflexology session during my chemo session on Wednesday, and it really made me want to go for a proper massage, so I will be hoping to book one for before my operation. There is apparently a very good therapist that works just up the road, so I hope to take advantage of that convenience. I hope also to get back to my yoga classes, although I am loving my one on one sessions - thank you Clare!
Anyway, I think you've probably all read enough of my random ramblings for now, so I'm going to sign off for now.
Take care folks and have a great weekend!
xxxxx
Right, here is the plan
OK then, I have finished my 12 weeks of pre-op chemotherapy (well I will have done by the end of the day when my 6th condom bottle comes off). So what's next I hear you say? Here is the current plan as it stands. As with everything in life, the plan is subject to change, especially with the whims of the NHS involved!!
Monday 14th May 7pm: I am having a CT scan from my neck to hips to check that nothing else is going on apart from the known growth on the top of my liver. I'm not sure that they can use my PICC line to put in the contrast substance needed so this may be pin cushion time!!
Friday 18th May: I have my regular fortnightly clinic appointment with my lovely oncologist - we will decide then whether to have one more Cetuximab infusion (the mouse / biological treatment) before my operation, or whether to leave it until after the op and have 5 rounds of Cetuximab then. I'll also pop up to the chemo day unit to have my PICC line cleaned and flushed (this has to be done every 7 days to prevent infection and any blockages).
Monday 21st May: I have my regular blood test - luckily the blood can be taken out through my PICC line so they don't have to play hunt the vein with needles!!
Tuesday 22nd May: If it's decided at my clinic appointment to go ahead with another Cetuximab infusion pre-op, this will be when it's due to happen.
Friday 25th May: PICC line clean and flush - this will be a recurring weekly appointment the whole time I have my PICC line in - most likely at least to the end of the year.
Sunday 10th June: Finally something not treatment related - this is the day when I am going to try and break the record for the slowest 5km in the Race for Life at Crystal Palace!! I am really looking forward to taking part in this and hopefully we'll have some nice weather so that I can enjoy an ice cream afterwards! ;-) (Thanks to all who have sponsored me so far - anyone else with a few spare pennies, here's the link again: http://www.raceforlifesponsorme.org/rachelvince163 )
Monday 11th June 1pm: Another trip to Guildford is on the cards - this time for an MRI on my liver. This is so my surgeon has as clear a picture as possible of what he'll be facing when it comes to the slicing me open!
Saturday 16th to Saturday 23rd June: Spain here I come!! Time to get me some tan lines for the surgical team to admire! I am really looking forward to chilling by the pool and lounging on the beach! Garth is to be my butler for the week! ;-)
Tuesday 3rd July: This is the big day hopefully - operation time in Guildford!! (There'll be a pre-op assessment session in Guildford sometime in the week before the big day). The hope is that I'll only be in the hospital for a week after the operation, with the first couple of days in ICU just so that can keep an extra close eye on me.
Mid August - early September: Depending on how well I recover from my operation, I am due to start 12 more weeks of chemo any time from around mid August to early September. As well as the 6 fortnightly doses of Oxyplatin and 5FU, I will also get the remaining 4 or 5 doses of Cetuximab.
End of 2012: I hope to be back to work and starting to get back to normal life again!
I think that covers just about everything as it stands at the moment! I will update with any further events as they come along. I will of course indulge in my hobby of being an arm chair sports fan - thank goodness for the Olympics, Paralympics, Grand Prix and Wimbledon. I may even manage to sit through some of the European football championships!! ;-) I am also hoping to be well enough to go to see some of the Paralympics events that I have tickets for! I have decided not to try and get any Olympics tickets as I am not sure how well I will have recovered from my op by then.
xxxxx
Monday 14th May 7pm: I am having a CT scan from my neck to hips to check that nothing else is going on apart from the known growth on the top of my liver. I'm not sure that they can use my PICC line to put in the contrast substance needed so this may be pin cushion time!!
Friday 18th May: I have my regular fortnightly clinic appointment with my lovely oncologist - we will decide then whether to have one more Cetuximab infusion (the mouse / biological treatment) before my operation, or whether to leave it until after the op and have 5 rounds of Cetuximab then. I'll also pop up to the chemo day unit to have my PICC line cleaned and flushed (this has to be done every 7 days to prevent infection and any blockages).
Monday 21st May: I have my regular blood test - luckily the blood can be taken out through my PICC line so they don't have to play hunt the vein with needles!!
Tuesday 22nd May: If it's decided at my clinic appointment to go ahead with another Cetuximab infusion pre-op, this will be when it's due to happen.
Friday 25th May: PICC line clean and flush - this will be a recurring weekly appointment the whole time I have my PICC line in - most likely at least to the end of the year.
Sunday 10th June: Finally something not treatment related - this is the day when I am going to try and break the record for the slowest 5km in the Race for Life at Crystal Palace!! I am really looking forward to taking part in this and hopefully we'll have some nice weather so that I can enjoy an ice cream afterwards! ;-) (Thanks to all who have sponsored me so far - anyone else with a few spare pennies, here's the link again: http://www.raceforlifesponsorme.org/rachelvince163 )
Monday 11th June 1pm: Another trip to Guildford is on the cards - this time for an MRI on my liver. This is so my surgeon has as clear a picture as possible of what he'll be facing when it comes to the slicing me open!
Saturday 16th to Saturday 23rd June: Spain here I come!! Time to get me some tan lines for the surgical team to admire! I am really looking forward to chilling by the pool and lounging on the beach! Garth is to be my butler for the week! ;-)
Tuesday 3rd July: This is the big day hopefully - operation time in Guildford!! (There'll be a pre-op assessment session in Guildford sometime in the week before the big day). The hope is that I'll only be in the hospital for a week after the operation, with the first couple of days in ICU just so that can keep an extra close eye on me.
Mid August - early September: Depending on how well I recover from my operation, I am due to start 12 more weeks of chemo any time from around mid August to early September. As well as the 6 fortnightly doses of Oxyplatin and 5FU, I will also get the remaining 4 or 5 doses of Cetuximab.
End of 2012: I hope to be back to work and starting to get back to normal life again!
I think that covers just about everything as it stands at the moment! I will update with any further events as they come along. I will of course indulge in my hobby of being an arm chair sports fan - thank goodness for the Olympics, Paralympics, Grand Prix and Wimbledon. I may even manage to sit through some of the European football championships!! ;-) I am also hoping to be well enough to go to see some of the Paralympics events that I have tickets for! I have decided not to try and get any Olympics tickets as I am not sure how well I will have recovered from my op by then.
xxxxx
Thursday 3 May 2012
Travel insurance dilema
Ok, so I've been having a look at some travel insurance quotes this evening in preparation for my week in Spain in June. Now, I've gone through the MacMillan Cancer Support website to get links to companies that cover people with pre existing conditions such as cancer. I seem to have a choice of whether to be covered for my cancer or not. If I choose to have my cancer covered, it'll cost me upwards of £1,600 for a week in Spain, but if I choose to not be covered for my declared pre existing condition it'll cost me about £20!!!! I think more research is needed, but do I risk travelling without cover for my cancer??
Credit card workout!
Oh no, what have I done??!!
I've just ordered myself a juicer!! I am not sure where it is going to live in my little apartment, but I have been hearing and reading a lot of good things about fresh juices so I have taken the plunge and invested in a juicer. I suspect that I will spend a lot of time cleaning up my kitchen - I always make a mess cooking as it is!!
So folks, any recipes for juices and / or smoothies you can pass on?
Thanks
xxxx
I've just ordered myself a juicer!! I am not sure where it is going to live in my little apartment, but I have been hearing and reading a lot of good things about fresh juices so I have taken the plunge and invested in a juicer. I suspect that I will spend a lot of time cleaning up my kitchen - I always make a mess cooking as it is!!
So folks, any recipes for juices and / or smoothies you can pass on?
Thanks
xxxx
Wednesday 2 May 2012
Marathons, records and zzzzz
Well folks, I am sorry that I haven't updated this blog for a while - have you missed me?? Anyway, this could end a rather long-winded update so please feel free to pause here and get a cup of tea (and a few biscuits) before settling down to read through my ramblings! Oh, and if anyone's asking, I'll have a green tea and a couple of organic shortbreads ;-)
Anyway, what's been happening with me and my chemo adventures I hear you ask. Well, I guess I need to start off with telling you about my London Marathon experience. Don't worry folks, I didn't decide to run it on a whim! As many of you (hopefully) will have read, one of my good friends, Aisling, was running the marathon in aid of Sense. Some of us decided that she deserved a cheer squad to help her get through the miles. Her family took charge to moving around the course and being at each of the Sense cheering points (I suspect that they clocked up a fair few miles doing this), so a group of us friends decided to set up camp on The Highway for the day and hopefully cheer her past as she ran first one way up The Highway from Tower Bridge towards Canary Wharf and then back down the other side of the road back towards the Tower of London and the finish line. Having met on what turned out to be a sunny day at Tower Hill tube station, we picked the 13 mile marker as a good place to set up camp. Well, we were actually the other side of the road so I guess we were somewhere between miles 22 and 23. We saw all the leaders of the elite races go past, along with loads of support / camera vehicles. It was beginning to look like if you had a scooter, then you could just sneak up the road along with all the others. Anyway, once the super speedy ones had gone through, it was time to cheer on the 'fun' runners who were pounding the streets. Many were raising money for various charities and a lot were in costumes of various levels of daftness! I think I witnessed three different runners in mankinis! There were of course the old marathon favourites - the rhinos and the wombles - as well as many superheroes, some bloke carrying the Blackpool Tower, someone hula-hooping her way around the course and a morris dancer, amongst others (I'd love to see some of them in training in their costumes). As well as keeping an eye out for Aisling, we also did a spot of celeb spotting. I managed to pick out Nell McAndrew, James Cracknell and Iwan Thomas, but others spotted folks from TOWIE and the diver Leon Taylor. Well, Aisling passed the 13 mile mark a little ahead of her predicted time and despite us all cheering at the top of our lungs, all the noise and the fact that she was running down the other side of the four-lane road, she didn't hear us. At least we knew we had another chance. And that chance came a couple of hours later, with Ais having clocked up another nearly ten miles and on the home stretch. This time, she did spot us with our posters and Irish flags. She was really pleased to see us (or so she says) and looked incredibly fresh. I was so pleased to be able to support her on her incredible feet (see what I did there?). Once Ais had passed us, we cheered on some more of the runners and then as the black clouds began to build, I decided it was time to head home. I was pleased to find on Facebook when I got off the tube here in SW London that Aisling had finished the marathon and had crossed the line complete with both an Irish flag and a Union Jack in an amazing 5 hours 44 minutes! She beat her aimed finish time of 6 hrs and the rain too! I am so proud of her and in awe of her achievement! It was such an amazing day, supporting all those runners and I can't believe I've never been to see the marathon before, having watched it on TV for as long as I can remember. I'm definitely going to go again! Don't worry though Mum, I'm not planning on entering! I'll stick to 5km for now.
Well, it turns out that marathon day was the last of the fine weather, with last week bringing lots of cold, wet and windy weather. This was not ideal as it was chemo week, so meant a return to the cold sensitivity. Now chemo day itself turned out to be noteworthy. Sarah was on a course in Yorkshire last week so she was having to hand over babysitting duties on Tuesday lunchtime to Mum. With a 10am appointment time on the Tuesday, we were hoping that I would be fairly near the end of my treatment at the hospital before the baton was due to be passed. Well, best laid plans and all that meant that the chemo gods were not smiling on us and we were still waiting to start at 2pm when Sarah had to head off!! It eventually turned out to be a 5hr 15 min wait for the start of treatment!! This time it was a case of staff shortages that caused the delay. They were two nurses down as well as 4 health care assistants. It is the health care assistants that collect the chemo drugs from pharmacy, take the blood samples down to the lab for testing, etc, so it was the remaining nurses that have to take on these jobs as well as their normal duties. The thing with chemo nurses is that they are specially trained, so they couldn't just bring in nurses from many other areas of the hospital. They did manage to get a couple to come over from the inpatient chemo ward though, so that helped a little. It was still a slow old day though. Once we got started, Mum and I sat through the 4 and a half hours of treatment without me causing any trouble - I have a bit of a reputation on the ward from last year when I was often in a lot of pain and sometimes felt faint as a result of treatment - I haven't caused this sort of trouble this time around though!! One poor lady did have some sort of reaction to her treatment though and had to be transferred to a bed and taken to the ward. I heard later though that she was ok, having been given some piriton to counter any allergic reaction she was having (I have piriton, along with anti nausea tablets, before my treatment starts to prevent any such problems, especially now I am on a biological treatment, which are more likely to cause a reaction than the synthetic cyto-toxic chemicals). Anyway, after 10 hours at the hospital, it was finally time to go home at 8 o'clock, along with condom bottle number 5! That turned out to be a record length of time spent at the hospital on chemo day!! Hopefully it will be a record that stands and doesn't get broken!! ;-)
As the condom bottle had to be taken off again on Thursday afternoon, Mum and I hang out in London for the next couple of days. The weather meant that I didn't get outside but we did go up to the top floor of the building where I live (8 floors up, in the lift - we did walk back down the stairs though) and do some London landmark spotting. We watched The Shard emerge from a rain shower, followed by the buildings in the City and then Canary Wharf. We also eventually worked out where the London Eye is, and picked out the Houses of Parliament. One New Years Eve I really must go up there to watch the fireworks!
Thursday meant another visit to the hospital, this time to have the condom bottle removed. This turned into another record breaking visit, but thankfully as the shortest time taken. We were there and back in less than an hour!! We did cheat a little though by taking a cab both ways rather than the bus, but with me still sensitive to the cold, we thought it was better than risking the wind chill affecting me by giving me muscle spasms and making my skin so sensitive that my clothes moving against my skin making it hurt (such a strange sensation). My cold sensitivity makes it feel about 20 degrees colder than reality, so I guess I know what it's like to be in the Antarctic!! It makes me feeling like my skin is burning from ice. The most annoying thing when I am outside is when it makes my eyelid muscles go into spasm, effectively making it so that I can't see anything! Thankfully wearing my glasses usually prevents this and I know that as soon as I move out of the cold it will stop! With that, sometimes getting a squeaky voice (sounding like I've been on the helium, but caused by my voice box going into spasm) and being unable to touch, eat or drink anything cold (sometimes even things at room temperature), I am getting a bit bored of this cold sensitivity! I am still a bit sensitive to the cold now and so am having to avoid things out of the freezer and ice in my drinks. Thankfully, I only have one more chemo cycle to go of this round and then this sensitivity should go away!
Anyway, enough of this winging about side effects! What else have I been up to? Well, on Friday, after a lovely yoga / relaxation session with Yogi Clare, Mum and I hit the road back to the family home for the weekend. It was nice to go back and hide from the rain somewhere else, but I'm afraid that I wasn't very good value for money in the entertainment stakes as I spent most of the weekend asleep!! The afternoon siestas spread to the morning as well, but that's the joy of the cumulative effect of chemo (winging about side effects again - sorry). This was the first time that Mum and Dad had been with me so soon after chemo so I think it was a bit of an eye opener for them to see how little my eyes are open!! ;-) I guess I should thank the weather for giving me an excuse to hide on the sofa! I was beginning to think we were going to need to build a boat though!
Having said goodbye to Dad and Sarah (she was also home for the weekend), Mum and I came back to London on Monday. Yesterday was then a day to rest up as last night it was time to head into town and meet up with my colleagues to celebrate the 15th birthday of our company. I was so glad that I was feeling well enough to go as it had been a while since I had seen some people. Although I wasn't partaking of the wine and beer, it was a really fun night. I really miss everyone at work so it was great to catch up with them all and hear the gossip and stories from the office! Thanks guys for making it a fun night!! I'll hopefully see you all soon. And thanks Sally for making sure I came home smelling of booze even though I stuck to mocktails! ;-) The red wine has successfully come out of all my clothes no probs!! At least I didn't wake up with a sore head like I expect more than a few others will have!! (feeling smug!!) Don't worry though folks, hopefully by the Christmas party I'll be back to my usual drinking self!! After all, I will have to give my newly regrown liver a bit of a road test!! ;-)
Mum headed home this morning to check on the baby blue tits that have hatched in her bird box that's linked up to a webcam - it's like Springwatch!! At last count, 6 or the 7 eggs have hatched! I am now flying solo until Friday when Dad is due to come up to go to my oncology check up with me - I think he just wants to ride on a red bus!! ;-) Then it's time to enjoy the bank holiday weekend before starting chemo again next Tuesday. I can't believe that I have already made it to cycle 6 of the pre-op chemo and that'll be it for energy sapping and cold sensitivity inducing oxyplatin and 5FU until August / September!! I am so looking forward to that and hopefully my stamina will increase ready for the Race for Life on 10th of June and my holiday to Spain a week later! (I've got to end up with some comedy tan lines for my surgeon to admire when I am on the operating table in July!!!)
Well, I think that's about it for now folks, apart from to add that I have watched The Help and My Week With Marilyn this afternoon (both from my Love Film list) and I would give them both 5 stars. I am currently reading The Help on my Kindle, so am looking forward to finishing that to see how it compares with the film.
Anyway, it is time for me to smother myself in moisturiser (it helps with my lovely rash from the Mouse drugs) and catch some more zzzz's!
I'll try to post again soon
Take care y'all and if you are in the southern half of the UK, watch out for the floods!
Night!
xxxxx
Anyway, what's been happening with me and my chemo adventures I hear you ask. Well, I guess I need to start off with telling you about my London Marathon experience. Don't worry folks, I didn't decide to run it on a whim! As many of you (hopefully) will have read, one of my good friends, Aisling, was running the marathon in aid of Sense. Some of us decided that she deserved a cheer squad to help her get through the miles. Her family took charge to moving around the course and being at each of the Sense cheering points (I suspect that they clocked up a fair few miles doing this), so a group of us friends decided to set up camp on The Highway for the day and hopefully cheer her past as she ran first one way up The Highway from Tower Bridge towards Canary Wharf and then back down the other side of the road back towards the Tower of London and the finish line. Having met on what turned out to be a sunny day at Tower Hill tube station, we picked the 13 mile marker as a good place to set up camp. Well, we were actually the other side of the road so I guess we were somewhere between miles 22 and 23. We saw all the leaders of the elite races go past, along with loads of support / camera vehicles. It was beginning to look like if you had a scooter, then you could just sneak up the road along with all the others. Anyway, once the super speedy ones had gone through, it was time to cheer on the 'fun' runners who were pounding the streets. Many were raising money for various charities and a lot were in costumes of various levels of daftness! I think I witnessed three different runners in mankinis! There were of course the old marathon favourites - the rhinos and the wombles - as well as many superheroes, some bloke carrying the Blackpool Tower, someone hula-hooping her way around the course and a morris dancer, amongst others (I'd love to see some of them in training in their costumes). As well as keeping an eye out for Aisling, we also did a spot of celeb spotting. I managed to pick out Nell McAndrew, James Cracknell and Iwan Thomas, but others spotted folks from TOWIE and the diver Leon Taylor. Well, Aisling passed the 13 mile mark a little ahead of her predicted time and despite us all cheering at the top of our lungs, all the noise and the fact that she was running down the other side of the four-lane road, she didn't hear us. At least we knew we had another chance. And that chance came a couple of hours later, with Ais having clocked up another nearly ten miles and on the home stretch. This time, she did spot us with our posters and Irish flags. She was really pleased to see us (or so she says) and looked incredibly fresh. I was so pleased to be able to support her on her incredible feet (see what I did there?). Once Ais had passed us, we cheered on some more of the runners and then as the black clouds began to build, I decided it was time to head home. I was pleased to find on Facebook when I got off the tube here in SW London that Aisling had finished the marathon and had crossed the line complete with both an Irish flag and a Union Jack in an amazing 5 hours 44 minutes! She beat her aimed finish time of 6 hrs and the rain too! I am so proud of her and in awe of her achievement! It was such an amazing day, supporting all those runners and I can't believe I've never been to see the marathon before, having watched it on TV for as long as I can remember. I'm definitely going to go again! Don't worry though Mum, I'm not planning on entering! I'll stick to 5km for now.
Well, it turns out that marathon day was the last of the fine weather, with last week bringing lots of cold, wet and windy weather. This was not ideal as it was chemo week, so meant a return to the cold sensitivity. Now chemo day itself turned out to be noteworthy. Sarah was on a course in Yorkshire last week so she was having to hand over babysitting duties on Tuesday lunchtime to Mum. With a 10am appointment time on the Tuesday, we were hoping that I would be fairly near the end of my treatment at the hospital before the baton was due to be passed. Well, best laid plans and all that meant that the chemo gods were not smiling on us and we were still waiting to start at 2pm when Sarah had to head off!! It eventually turned out to be a 5hr 15 min wait for the start of treatment!! This time it was a case of staff shortages that caused the delay. They were two nurses down as well as 4 health care assistants. It is the health care assistants that collect the chemo drugs from pharmacy, take the blood samples down to the lab for testing, etc, so it was the remaining nurses that have to take on these jobs as well as their normal duties. The thing with chemo nurses is that they are specially trained, so they couldn't just bring in nurses from many other areas of the hospital. They did manage to get a couple to come over from the inpatient chemo ward though, so that helped a little. It was still a slow old day though. Once we got started, Mum and I sat through the 4 and a half hours of treatment without me causing any trouble - I have a bit of a reputation on the ward from last year when I was often in a lot of pain and sometimes felt faint as a result of treatment - I haven't caused this sort of trouble this time around though!! One poor lady did have some sort of reaction to her treatment though and had to be transferred to a bed and taken to the ward. I heard later though that she was ok, having been given some piriton to counter any allergic reaction she was having (I have piriton, along with anti nausea tablets, before my treatment starts to prevent any such problems, especially now I am on a biological treatment, which are more likely to cause a reaction than the synthetic cyto-toxic chemicals). Anyway, after 10 hours at the hospital, it was finally time to go home at 8 o'clock, along with condom bottle number 5! That turned out to be a record length of time spent at the hospital on chemo day!! Hopefully it will be a record that stands and doesn't get broken!! ;-)
As the condom bottle had to be taken off again on Thursday afternoon, Mum and I hang out in London for the next couple of days. The weather meant that I didn't get outside but we did go up to the top floor of the building where I live (8 floors up, in the lift - we did walk back down the stairs though) and do some London landmark spotting. We watched The Shard emerge from a rain shower, followed by the buildings in the City and then Canary Wharf. We also eventually worked out where the London Eye is, and picked out the Houses of Parliament. One New Years Eve I really must go up there to watch the fireworks!
Thursday meant another visit to the hospital, this time to have the condom bottle removed. This turned into another record breaking visit, but thankfully as the shortest time taken. We were there and back in less than an hour!! We did cheat a little though by taking a cab both ways rather than the bus, but with me still sensitive to the cold, we thought it was better than risking the wind chill affecting me by giving me muscle spasms and making my skin so sensitive that my clothes moving against my skin making it hurt (such a strange sensation). My cold sensitivity makes it feel about 20 degrees colder than reality, so I guess I know what it's like to be in the Antarctic!! It makes me feeling like my skin is burning from ice. The most annoying thing when I am outside is when it makes my eyelid muscles go into spasm, effectively making it so that I can't see anything! Thankfully wearing my glasses usually prevents this and I know that as soon as I move out of the cold it will stop! With that, sometimes getting a squeaky voice (sounding like I've been on the helium, but caused by my voice box going into spasm) and being unable to touch, eat or drink anything cold (sometimes even things at room temperature), I am getting a bit bored of this cold sensitivity! I am still a bit sensitive to the cold now and so am having to avoid things out of the freezer and ice in my drinks. Thankfully, I only have one more chemo cycle to go of this round and then this sensitivity should go away!
Anyway, enough of this winging about side effects! What else have I been up to? Well, on Friday, after a lovely yoga / relaxation session with Yogi Clare, Mum and I hit the road back to the family home for the weekend. It was nice to go back and hide from the rain somewhere else, but I'm afraid that I wasn't very good value for money in the entertainment stakes as I spent most of the weekend asleep!! The afternoon siestas spread to the morning as well, but that's the joy of the cumulative effect of chemo (winging about side effects again - sorry). This was the first time that Mum and Dad had been with me so soon after chemo so I think it was a bit of an eye opener for them to see how little my eyes are open!! ;-) I guess I should thank the weather for giving me an excuse to hide on the sofa! I was beginning to think we were going to need to build a boat though!
Having said goodbye to Dad and Sarah (she was also home for the weekend), Mum and I came back to London on Monday. Yesterday was then a day to rest up as last night it was time to head into town and meet up with my colleagues to celebrate the 15th birthday of our company. I was so glad that I was feeling well enough to go as it had been a while since I had seen some people. Although I wasn't partaking of the wine and beer, it was a really fun night. I really miss everyone at work so it was great to catch up with them all and hear the gossip and stories from the office! Thanks guys for making it a fun night!! I'll hopefully see you all soon. And thanks Sally for making sure I came home smelling of booze even though I stuck to mocktails! ;-) The red wine has successfully come out of all my clothes no probs!! At least I didn't wake up with a sore head like I expect more than a few others will have!! (feeling smug!!) Don't worry though folks, hopefully by the Christmas party I'll be back to my usual drinking self!! After all, I will have to give my newly regrown liver a bit of a road test!! ;-)
Mum headed home this morning to check on the baby blue tits that have hatched in her bird box that's linked up to a webcam - it's like Springwatch!! At last count, 6 or the 7 eggs have hatched! I am now flying solo until Friday when Dad is due to come up to go to my oncology check up with me - I think he just wants to ride on a red bus!! ;-) Then it's time to enjoy the bank holiday weekend before starting chemo again next Tuesday. I can't believe that I have already made it to cycle 6 of the pre-op chemo and that'll be it for energy sapping and cold sensitivity inducing oxyplatin and 5FU until August / September!! I am so looking forward to that and hopefully my stamina will increase ready for the Race for Life on 10th of June and my holiday to Spain a week later! (I've got to end up with some comedy tan lines for my surgeon to admire when I am on the operating table in July!!!)
Well, I think that's about it for now folks, apart from to add that I have watched The Help and My Week With Marilyn this afternoon (both from my Love Film list) and I would give them both 5 stars. I am currently reading The Help on my Kindle, so am looking forward to finishing that to see how it compares with the film.
Anyway, it is time for me to smother myself in moisturiser (it helps with my lovely rash from the Mouse drugs) and catch some more zzzz's!
I'll try to post again soon
Take care y'all and if you are in the southern half of the UK, watch out for the floods!
Night!
xxxxx
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