Sorry I appreciate these 'no go' updates are getting rather repetitive now:-).....once again the white blood cell count is too low today. It has now dropped to 1.04 (was at 2.6 last Wednesday) and so with this downward trend they still can't administer the planned chemo. On a more positive note they have given me something this time. It is a drug called Neupogen which is given to force the generation of white blood cells. I can't deny being more than a little frustrating that my body doesn't seem to be bouncing back as I would like it to. Sharon (my chemo nurse today) was brilliant at really taking the time to sit and listen to my concerns. She explained that whilst on the one hand this is not common, it is also not uncommon, and does happen from time to time with some patients...'I shouldn't worry about it' was the message I was getting loud and clear. She went on to remind me that even though in the first round of chemo I had no issues with my white blood cell, I was in a much better physical state (other than obviously having cancer at the time:-). Since then, my body has had to endure 2 major surgeries and is still trying to regenerate a liver, as well as cope with the second chemo. Bottom line is that it will just take me a bit longer to 'find my feet' with this chemo regime. As I lie here writing this post the side effects from the Neupogen that Sharon mentioned, like back pain, are kicking in a bit....a good sign I hope as this should mean white cell are being 'brewed up' I assume. They want to leave it 48hrs before trying again and so I will be in again on Wednesday for my 4th attempt. On the plus side I managed to 'bank' 30k this week:-).....
"C'mon Chemo, you are supposed to be my new best friend?" Unfortunately today was another 'no go' on the chemo as once again my white blood count is too low to continue. I have now resided myself to the fact that the 'control' I thought I had is now no more. Whilst I can't deny that I am disappointed, thats fine and I will just accept it. My focus now will be on what I CAN control and not what I can't. I have been told that I just need to keep up my current diet and it should 'come good' in the end. Also I have been assured that there is no problem with some running provided I don't push it.....which I am definitely not. The plan now is to leave it until Monday when I will go back for '3rd time lucky'!....I think I will cross a few toes as well as the fingers this time:)
I think the phrase goes something like "it never rains but it pours"....feels a little like that today. So I was all set for 'chemo hit number 2', however unfortunately it didn't happen. They took my bloods as planned first thing this morning and it transpired that my white blood count is too low currently for them to administer more. Serena (chemo nurse) spoke with Alice (oncologist) and they both agreed that the best course of action was to delay for 24hrs in the hope that the levels will rise overnight and they can give me the planned chemo tomorrow afternoon instead. I have to admit it is another 'mental blow' as I was all focused on 'cracking on' as planned. I am also really surprised given how good I am generally feeling physically at the moment. Serena has said that it is nothing I am doing / not doing which is causing the low count, but probably just that my body is still having to do a lot, what with the liver regeneration and first round of chemo. So the plan going forward will be that after each chemo round I will self administer (in my stomach) a drug called Neulasta / G-CSF...I better not mess it up either as each dose costs £1k apparently:)!....thanks BUPA!. This is designed to specifically boost white blood cells. There are some side effects, one of which being pain in the lower back which is where the white cells are mainly produced. The good news however is that these effects only tend to last a day or so. Despite this set back, hopefully it is just a '24 hr thing' as they say:). At the end of the day I know this is being done all for the best.....once again my amazing medical team are right on the case. Fingers crossed for a better 'chemo day' tomorrow.....
......2 miles complete with 24 to go!.....The fears I had about this final stage of chemo, being that right from the outset I would struggle with sickness etc, have fortunately not materialised. I understand that this regime of chemo is one which has a 'cumulative build up' effect and so whilst I am ok at the moment this may not last. That said, while I feel like I do right now I will continue to 'live in the moment'. I am really pleased to say that I have started to get back into a bit of a running routine and have coined my own definition of '5-a-day',....rather than fruit, my version is 'km's'!. Whilst I think it is probably unrealistic to think that I can run too much in the actual week of the chemo treatment when there are more side effect, I see no reason why I can't in the week after, when I am more up for it. I have managed 4, 5km runs this week and with one more planned tomorrow that will be 25km this week which will definitely make me feel that I am still doing enough to keep some level of fitness up. My oncologist is also happy with this and understands that while I can, I should. The other positive news this week is that finally the wound from the first surgery that has been such a problem for so long, I think is getting slowly better. My practitioner nurse had been trying a number of different options, including honey and iodine dressings...none of which have had much of an impact. However what has really helped since Wednesday of this week, is something called Flaminal hydro gel which is specifically designed for wounds which are in and around areas that have been previously exposed to radio therapy...brilliant stuff which in only 4 days is definitely making a difference. Whilst I wouldn't say it is 'problem solved' it's the best it's been. If you are reading this as someone who is in a similar situation then make sure you ask your medical team for this gel!.
Firstly I want to say a huge thank-you to everyone who has posted such wonderful comments on my Facebook / own website pages. It is so encouraging to know I have such a brilliant support network of friends and family around me. I am a very lucky man! I have also had some really great direct emails from others who I didn't previously know who read my runners world article and wanted to share their own stories with me.....I am so pleased to be able to make these 'outside contacts' as ultimately this was one of the main reasons for starting this website. I also may have some developments with a possible charity event next year, so watch this space:). So that's 1 week down now in this second and final stage of chemo, with 25 weeks to go. As you would probably expect I am converting these weeks into miles to make a marathon:)....other than a few minor side effects (taste changes with some food and drinks, and hot flushes from the steroid they are giving me to stop the sickness) I am genuinely all fine and feeling good. I managed to get out for a couple of 5k runs this weekend which as always is the perfect way to help me 'forget it all' for a while. No chemo drugs or pills now for 10 days....woohoo!
I was thrilled that runners world wanted to hear about my story and battle through cancer so far. I have written a small piece for them and it is now live on their site which you can click on to read. Already I have had some contact from others in a similar situation which has been great to read and respond to. http://www.runnersworld.co.uk/community/real-runners-tom-pearce-running-with-cancer/12131.html</p>
So 'the gun' has gone and I am 'off the blocks'!. As I write this post I am sat having my first dose of chemo, in the comfort of my hospital chair switching between reading runners world and my new 'chemo diary'...they make quite a pair!. Frustratingly the wound from the original surgery is not healed and so whilst it is certainly likely that the chemo will delay this still further, my oncologist has said we need to 'crack on'. If I'm honest I am glad she feels like this as I really want to 'get going' as well. Of course what this is unfortunately likely to mean is that the chances of me running anytime soon is significantly reduced. I am simply going to have to accept the fact that it needs to be right before I get going again. I will of course still cling onto the hope that it will be possible durning this long haul of chemo and will have the 'trainers at the ready' should I get the 'ok'. Serena and I have just had a chat and agreed that 'my chemo' day will be the Wednesday of each fortnight (bloods and ops's in the morning and chemo in the afternoon). They have Wifi and all the mod cons here, so I will be able to keep in touch with work and the outside world which is great. So I am here now for the next couple of hours before they send me home, chemo pump in hand. They have given me some steroids which hopefully helps with the sickness....so far, so good!. I will then be back in again on Thursday when they take it out and then leave me alone for the next couple of weeks. That will then be 1 done, 12 to go!.
I am all 'hooked up' and ready to go!.So this afternoon I had my port-a-cath fitted ready for chemo to start next Tuesday. The procedure was done back in the Dunedin hospital (where I had the bowel surgery) and as I had hoped I bumped into some of the old faces again which was great!. They were all as friendly as I remember, and were keen to catch up with me to find out how I was doing. I explained that I had undergone another surgery down in Basingstoke since. Mark, one of the doctors wanted to know how my running was going....I told him that I had managed a couple of light ones, but that as I wasn't fully recovered from the 1st surgery I was taking it easy for now and will get cracking again once chemo starts. I am really glad that my chemo treatments will all be done at Dunedin as well...once again a 'top team' to look after me. Serena, one of the chemo nurses introduced herself to me today...straight away I really liked her. She has a real 'can do' attitude and has told me she thinks with the right focus I will be fine...let's hope she is right. I also heard back from runners world yesterday and they liked the piece I sent onto them which is great to know. My contact there, Annie, said she just needs to run past the editor and will then let me know when it goes live. With the port-a-cath apparently taking around 7-10 days to heal up I am figuring that in that time my wound will have fully sorted itself out as well....that will be my 'green light' to get the trainers back on again!..can't wait!. It will also coincide with the start of 'week 2' of chemo which is apparently when I will feel at my best.
I think yesterday must have been a record for the number of medical appointments in 1 day since treatment started...3 in total!. The first 2 were to meet with my practitioner nurse (wound dressing) and stoma nurse (usual follow up). Finally later in the afternoon I had my first chance to see Alice since the liver surgery. No more 'bombshells' this time which was a relief!. To be honest I wasn't expecting anything, given the fact that I haven't been scanned since I came out. She had heard from Merv and was equally pleased with the progress I had made. She then went on to explain that the 6 months chemo regime will start on the 25th August - just over 2 weeks from now. Strange really, but even though I knew this was exactly what she was going to cover off on this appointment, somehow it felt even more real..there is no getting away from the fact that this has to happen. I know this is going to be a rough old ride and I just hope that my body can tolerate it well enough for me to still work and run. Alice totally understands this and also wants me to be able to, however of course we both understand that until we have started we just don't know. So for the first time in a long time I have a few 'days off' from treatments / appointments. I will be back to hospital in the week commencing 18th August for the port-a-cath to go in, in readiness for the chemo to start the week after. I have managed a couple more small runs since my last post which have been great to be able to do (for those who may be interested they are posted on the 'my run's page of the website). Hopefully over time I can increase these and get myself back into shape
So the day I have been so looking forward to has finally arrived (2 weeks earlier than planned)..... I have a run 'in the bag'!!! Admittedly a small one (6.5km with 3 breaks), but at least it's a start!. I had my second follow up with Merv today which went really well. He explained the bloods were still looking great and that my liver was already up to 70% capacity. Being just over 2 weeks since surgery he said that I was 'ahead of the curve' which was really encouraging to hear. I asked him about running and he was very honest and practical about it which I really appreciated. He clearly understood that starting to run again is a key milestone in my mental recovery to both surgeries. He explained that if I feel ready then I can go for it, although as always I need to listen to my body and take it steady. So, that's exactly what I have done tonight.....and I feel mentally on top of the world!. With the iPod on and the wind in my face, I didn't think about cancer once!...couldn't have asked for more. Ok, so I must admit to feeling like I had lead weights attached to my legs and that at the end I had just run a full marathon, but then Merv did say that feeling tired will be totally normal. Over time this will slowly come back and I will properly be 'back in the game' again!. Going back to work yesterday and today, combined with the run tonight has really now made me feel like there is 'light at the end of this tunnel' after all!!!