New Year Update

Happy New Year!!

Though I would drop out a quick NY update with some "good" and "not really sure whether bad news or not". The good the main despite being nearly 9 months into this chemo regime, I really do feel physically and mentally very well / strong. Its also great to be able to say that despite the side effects being a little more intense on each chemo hit, the number of days I feel rough during each chemo cycle is not getting any longer - what I mean is that it still only generally lasts around 3-4 days out of the 14 days. After that, other than how I look (I'm no oil painting now unfortunately!...although bless the boys who keep saying "don't worry Dad, we cant notice anything" 🤣), I actually feel really good and life is pretty much normal. Even in the days when I have the pump on when I don't feel 100%, I can continue exercising so I really cant complain (in fact on the day immediately after being in hospital I can feel super charged with the steroids - ha ha!)

So onto the "not real sure if bad news or not" I think I have mentioned on previous posts, since the chemo started back in April on each cycle the CEA blood markers have shown a steady drop which demonstrates that the chemo is working. Unfortunately on the last cycle (last week), it has risen (from 17 to 37). As this is a fairly significant increase I am booked in for a CT next Tuesday to see what's going on if anything. Worst case scenario is that the chemo has stopped working and the cancer is growing / spreading. However, it could equally be that as I had an extra week off (3 week gap rather than 2 weeks during xmas), that this has pushed the number up a bit temporarily. The next bloods will be taken on Monday next week in readiness for the 19th cycle chemo on the 19th Jan....this will be a key result as it should show if they are either continuing to rise or have fallen back down. This, coupled with the CT scan on the Tuesday will mean that I have a really good idea on what is going on.

I cant lie and say that this news wasn't a big blow when I found out last week, as I have been getting really used to seeing the CEA go down on every cycle. However, now that I have had some time to process and get my head around, I am actually feeling ok with it....there are genuinely a number of reasons why this result has come through and so I will continue to be 'glass half full' on why. I figure there really is no point in worrying about and lets just see next week 👍

In the meantime, running and riding continue to be a complete crutch for me and without it I know I would be in a very different place both physically and mentally. It continues to be frustrating that I cant get my lung working as I would ideally like when running, however I guess if I am honest with myself, I have allow for the fact that the chemo over the past 8-9 months will have taken its toll and so to expect any 'performance improvement' is a bit naïve. At least with the bike it means I can keep going without having to stop (as is generally the case with running). The bottom line is that I can still do something everyday and that really is all that matters - if I can keep up the 150-200km of peloton and 20 odd km of running on the treadmill each week that'll do me nicely

In other news, only 12 weeks to go until the Maldives!! - we are all super excited....bring it on. I really cannot wait to spend this time with Catherine and the boys as part of our 'memory building mission'! 😁

7 months in

So with 7 months in and 14 chemo cycles down the hatch I thought I would ping out another brief update.

The bottom line is that I still feel good 😀. Particularly in the second week of each treatment cycle things almost go back to normal and the side effects lessen a lot. I remain sure that the running and cycling play a huge part in keeping my mind and body focused throughout it all, so as long as I still can do it I will 100% keep jumping on the treadmill and peloton each day.

At the last oncologist session the results of the latest CT scan show that the cancer is stable which was a big relief to hear. The CEA blood markers are also levelling off. At the moment it is clear that the chemo is ’doing its thing’ exactly as intended and so for the timbering time being we will just carry on. Whilst it would on the one hand be nice to be able to have a break from it, on the other I’m just thrilled that it’s working and that it is buying me the time that I so want with family and friends. I also am now starting to investigate more the clinical trials route in the hope that there maybe something out there that I can benefit from when the chemo stops working…nothing yet, but I remain positive that something will come up.

The team at Royal Berks continue to be such a support and have really helped deal with all the side effects that have been thrown at me. One of the biggest being the skin reaction, where I now have some ‘wonder cream’ which was recently prescribed making a massive difference. I had thought that my hair would completely go but so far what’s left is hanging in there:-) As for feeling nausea this does come and go in the week of treatment but is all still very much something I can live with for the moment. I’ve even managed to convince one of the wonderful chemo nurses to restart running after she gave it to a few years ago…we’ve both decided that I can be her coach which essentially means I am allowed to hassle her on each visit to make sure she is keeping it up!:-). Bless her she is doing really well and I’m really glad so far she is sticking with it.

So with Xmas just round the corner and a kick ass holiday to look forward to in April life is really good!😀 Thank you everyone who has been in touch recently, your support really does mean a great deal.

4 months in and still working! 😀

So that's 9 cycles of chemo (and 4 months in) now and it's still working!:-) The CEA marker is now down to 15 which is really encouraging 🙂 I also had a CT scan a few weeks back and this also confirmed that the cancer cells are smaller than they were when we started.

Catherine and I caught up with Alice for the first time recently and she was really pleased with how things are going. Whilst I still have the side effects I have mentioned before (skin rash / spots being the main one, along with a bit of nausea and hair thinning), it is all totally manageable and not getting in the way of life! Alice has explained that for the moment while it appears to be working and I am able to continue we should do exactly that. At some point in the future the cancer will mutate and start to fight back so I am told....the is apparently inevitable with the cancer I have. At this point then the chemo will stop as obviously there will be little point in continuing. Whilst this will ultimately mean the end of the conventional treatment, I remain hopeful that I can get myself on a trial of some kind (something which I am continuing to research as much as I can online).

The obvious question I have asked is 'how long will it be before the mutation of the cancer cells happens'? - the honest answer is that it's really difficult to know - could be months, could be years - fingers crossed it will be the latter. As I sit here now typing this blog, I can honestly say it feels a million miles away to that 'end date' - life's good and I remain incredibly positive that something will come round the corner that I can take advantage of. It is just a case of staying as physically and mentally as fit as I can is the way I see it.

We have just booked a fantastic family holiday in the Maldives next Easter which we are now really looking forward (like most, getting abroad feels like a very distant memory and so to have this to focus on will be great!). We have told Alice about and she is totally fine with giving me a break for one cycle so this can happen.

In the meantime, I can crack on with the running (and now more recently on my new Peloton bike which is my new best friend! - I love it as it means I can continue to exercise in one go managing the fact that I have one lung to pull me along). Dont get me wrong running will always take priority for me, however more recently it has become a bit frustrating in that I have to stop every couple of kms to catch my breathe, whereas with cycling it is much easier to manage.

Being able to still exercise every day while being on chemo continues to be a huge help in all aspects of both my physical and mental wellbeing. 100-120 odd km on the bike + a few km running each week sets me up just right everytime!

Looks to be working!😀

So as I sit here in hospital today starting cycle number 5, I’ve just had my latest results from the blood test I had on Tuesday….and the good news is that the chemo is definitely working!!…woohoo.

When I started the treatment (when it was clear that the cancer was back) my CEA blood score was 100 (a normal score for someone healthy is between 3 and 5). Anyway after the first cycle it had dropped to 80, then further to 60 ish after the 2nd cycle. It now stands at 32 which clearly indicates that the poison it’s doing its thing which is a great feeling😀

Having gone through the side effects over the past 2 months it’s so good to know that it’s all been worth it. As well as the chemo and I am also fairly convinced that keeping up the running (and now cycling as well with my new toy, Peloton 👍) is helping as well I’m sure. If anything, mentally it makes a massive difference!…just makes me feel like I am ‘doing something’ if you know what I mean.

So I will see Alice again in around 1 month and you never know if the score keeps coming down it could be that she gives me a break from the chemo🤞…let’s see.

Now onto football matters….come on 🏴󠁧󠁢󠁥󠁮󠁧󠁿!!!!

2 Chemo Cycles In

So a month since my last post and thought I drop another quick one out. The first cycle didn’t go quite as planned with a bit of a false start on day one (28th April). They had decided to do the treatment over 2 days to check that my body could cope the Cituximab ok. The idea being that I had that on day one, and then the rest of the Folfori chemo drugs on day two (then go home with the pump for two days while it all went in). Anyway it didn’t quite work out like that in the end. I was only 6 mins into the cituximab (25ml out of the planned 1000ml) and suddenly got hit with a very hot flush and couldn’t breathe…have to admit it was a little scary as it came on so quick and hard and totally out of the blue. 

Anyway I had nothing to worry about as the team on hand were amazing!…they stopped the treatment immediately and put me on oxygen to stabilise everything.

Looking back on it now I have had a little chuckle to myself……there was a chap sat opposite me in the treatment room when I first arrived. Anyway the poor guy, you could tell this was his first cycle and he was obviously understandable very nervous about what was to come. Anyway, bless him when he saw my reaction you should have seen his face!…a nurse came and closed the curtain between me and him and I could hear her saying reassuringly to him that “don’t worry that is a very unusual reaction and not likely to happen to you”.

What made me laugh is that at the exactly time, the nurse on my side of the curtain said “don’t worry Tom this is a fairly common reaction for someone having this drug for the first time, you’ll be ok” 🤣. Bless her, I know both of them were doing their very best to reassure us both and honestly I think they managed it in their own way.

Anyway the up shot was that they decided that I needed to get home and rest up for the day as it has been a bit of a shock to the system. It was really quite odd as I have to admit feeling instantly really tired…after coming home I got a power nap for an hr or two which completely sorted me out. I managed an 8k on the treadmill in the afternoon and went to bed feeling good once again ready again for ‘try number 2’

So the next day exactly the same routine only this time they administered it incredibly slowly and also helped by giving me some pre meds (steroids)…thankfully this did the job and it all went without a hitch👍. I then went in the next day (Friday) and had the rest of the chemo drugs. I was then sent home with the pump which they then came and took take off on the Sunday.

I have to say that the side effects have been very different from the chemo I had all those years ago…the main one being the reaction it has had on my skin…fairly nasty rash on face, neck and skin. I’m told this is entirely down to the cituximab and totally normal. When I saw Alice two weeks later (the day before what was meant to be cycle number 2) she decided that I needed another week to recover a bit more so that’s what we did.

So here I am now having just had cycle 2 (yesterday)…this time they managed to get all the drugs in one go (only 50% of the dose of the cituximab this time…should go back up to 100% next time provided the side effects aren’t too bad).

Hair is gradually starting to disappear….still clinging onto what I have for the moment though👍. Ollie is waiting in the wings with the razor and will be ready when called in🤣

The great news is that I haven’t felt any really bad sickness (a little bit of a hangover type feeling on a couple of days but that’s it…and no before you ask I wasn’t drinking!) This is such a relief as it has meant my appetite has been good and I have managed to keep running every day since the chemo started (other than the skin being a bit stingy from the sweat no problems at all).

I think it’s fair to say that this chemo regime will be a fairly challenging one (compared to the folfox), however now I have started I do feel much more comfortable on how to manage going forward. A few more cycles and I hope to have cracked it!😀

Chemo start date

Having had the chemo portacath op last week, I am now all ready to roll!

I met up with the chemo team on Friday who talked me through the regime I will be on. It is called Folfori + cetuximab and will be very similar to the Folfox I had 7 years ago in that each cycle will be administered every fortnight. With Folfori the side effects are apparently more gastrointestinal, fatigue and alopecia, whereas with folfox it has more neurotoxicity (I remember this with the pins and needles in my hand and feet by the end).

Ordinarily it will be that they give me the chemo infusion over the course of one day, and then I go away with a portable pump for another two days while it continues to go in. They then take the pump off and leave me alone for 12 days before repeating it all again.

However for this first cycle, just so that they can monitor me more closely and see the extent of the side effects they will do it more slowly over two days (28th and 29th April). As before they talked through the list of potential side effects.... good news is that it won’t necessarily be that I experience all of them. The impression I get is that the more common / likely are hair-loss (Ollie already had that covered and will be ‘waiting in the wings’ to shave it off as soon as it starts to go🤣....I’m told this tends to happen after the second cycle), mouth ulcers, stomach cramps, diarrhoea, skin rash, nausea.

I’m just keen to get started now so that I can have a sense of how my body will cope. Hopefully by trying to keep the running up this will help to mitigate some of the effects. Fatigue is one they mentioned and as I recall last time that wasn’t too bad (something I put down to keeping active throughout).

We have a family weekend in the diary for the May bank holiday which Catherine, the boys and I are really looking forward to. Something to focus on to get through chemo cycle number 1👍

Now let’s get it going, I am feeling totally ready for it now 😃

CT scan results

As expected, the news that Catherine and I knew deep down was coming was confirmed today following our latest appointment with Alice

The CT scan which I had last week shows that the cancer has indeed now spread from the mediastinum to the cavity where the left lung used to be. So the agreed plan is to now start chemo without any further delay. It will be a similar regime in terms of frequency (the drugs themselves will be slightly different) to what I had back in 2014/15, with the main difference being that this will not have a ‘planned-in end date’. The main purpose of this course of chemo is to administer for as long as it takes to get the cancer mass down to a size which is undetectable on a scan. This will not have got rid of the cancer but will at least give me a few weeks of break until they go for another sustained chemo round again.

Alice feels that provided my body can take it that it may last anything up to 18 months (with cycles every two weeks). It will be as before in that the longer it goes on for the tougher it will be side effects wise. I fully intend if I can to keep running throughout treatment as this helped so much before both physically and mentally.

Once the maximum amount of chemo has been given (which will probably depend on how much I can take), then she will look at other possible ‘not yet proven’ clinical trial treatments either at Oxford or the Royal Marsden to try and extend my life as much as never know I may just get lucky 🤞.

In the meantime, we are going to look to get some time away as a family for the Easter hols somewhere ‘Boris approved’😉 which will be great....hopefully we will get some good weather and we can really relax and have some fun!

Little bonus...:-).....I have been fast tracked the 2nd Covid jab (this Wednesday) in time for when chemo starts around mid April.

I’d be lying if I said it hasn’t been a tough day. Being reminded yet again that this is now more than likely the last throw of the dice for me, coupled with having to tell the boys this latest news hasn’t been easy.

However I do still hold out that remote possibility that the longer I can fight this, the more likely something maybe available down the line on trials. It is made so much easier having the world’s greatest support team by my side!, Catherine, the boys, all my family, friends, work colleagues, the medical team....literally everyone is 100% on my side I can really feel is this which ultimately makes this a battle I will definitely keep on fighting....BRING IT ON!😀

Latest blood results

Been a little while since my last post so thought I would just drop down a few words with the latest.....the last few months, despite the challenges we have all been facing with the lockdown have largely been 'incident free' cancer wise at least for me. It has been the first time in a little while where I really got to a point where I wasn't thinking too much about it. Of course, in the back of my mind, I knew that there was a blood test coming up, but rather naively I think I had it in my head that this would all be ok, and the cancer wouldn't have progressed any further particularly as I still feel good physically. I have totally recovered from the surgeries last year and running 50-60k a week.

Anyway, this morning I got the results from that blood test which was take a week or so ago and unfortunately have been reminded in a flash that the cancer is still very much there and now sadly growing. It was a phone appointment (given Covid rules) with Alice and short with a good clear idea of next steps. With the CEA marker now up to around 95, its now off to get a CT scan and work out where it is growing / progressing. The good news is that this has been booked soon (this Friday 19th). I will then have a follow up appointment on the 29th to get the results. At that point it will either be (a) to start Chemo or (b) not to start chemo. I think ideally Alice would like to avoid starting it given the fact that once it starts it will likely be a long course (she mentioned something around 12-18 months). I always knew this would happen at some point but can't deny I was hoping that I may be able to ride this out for a little longer.

I think it's fair to say that whatever the outcome of the scan, chemo will have started by the end of the year. Having now been brought back to earth with a bang, this news I must admit has floored me a bit as it reminds me that those family events in the future are likely to not be something that I will be there for...the boys getting married etc. In a few days once I have let this news properly set in, I know I will be ok and remain determined to continue living for the end of the day this is something that I know is key to getting through it. I have just had a run and already feel a lot better!:-)....but seriously I do think that provided I continue to feel as I do, which honestly is still strong, then even with chemo potentially starting I can keep going and importantly continuing to enjoy all the precious moments with family and friends that I am so lucky to have at the moment.

So for now, it's a simple plan in my continue to enjoy the time I have left without looking too far in the future...all about living for come on Boris let us out for some fun! 😉🙂

All done 😀

Really pleased to be able to report that yesterday’s operation went well and I’m back “out the other side” again. In the end it was a slightly longer one, as it was decided that as well as taking out the cancer node from the armpit, Andy also wanted to take a wider margin from the previous back operation (done in July) having looked at the notes on file. All in and after 6 hours the job was done and dusted😀.

Can’t tell you how pleased I am it’s over with as I have to admit it was starting to play on my mind a bit and I was feeling it when I ran.

Yet again (this being operation number 8) I am reminded what a truly incredible and wonderful institution our NHS organisation is..... every single one of them being a total professional with such a caring nature. I simply wouldn’t be here today without them and will remain eternally grateful!

So the plan now is to rest up over the weekend and then they will make a decision on letting me home depending on the timing of the drains and catheter removal.

Really looking forward to seeing Catherine later this morning for our ‘one hour only Covid restricted’ visit....thank a lot Mum for looking after the boys!! Love to you all x

Got a date!:-)

So after a bit of to and fro between Alice and the team at Oxford, John Radcliffe I now have a date for the armpit surgery….16th October. 

I met with the surgeon, Andy, a couple of weeks back soon after my last post. I really liked him and his approach. He was incredibly positive and whilst, like me he knows that doing this surgery will not necessarily change the overall prognosis, taking this part of the cancer that remains within my body out can only be a good thing….”it's all about keeping you going as long as we can, right Tom” is what he said – top man😊 

He did a quick examination when we met and said he could feel a golf ball size node close to the surface which is what the scan is showing as being cancerous. The good news is that unlike some other cancerous growths which can occur in the armpit, mine is very close to the surface which should mean that compared to more invasive surgeries which require a deeper operation, this shouldn’t be the case for me. I had hoped that it would be a day case, however he did explain that it will mean a short stay in hospital of around 3-5 days after the 3-4 hr operation. 

I asked the obvious question which was when he felt I could start running again. He said after a couple of weeks allowing the area to heal, I should be good to go again. Unlike the back surgery where I was able to run the day after, the fact this one is under the arm isn’t very conducive for running I guess!.....unless I try to run without swinging my arms which I can’t quite see working🤣. Anyway, as always, its clearly going to be a case of ‘listen to your body’ and you’ll know when you're ready to ease back in. Between now and then, I’ll just keep on running every day, so I have some miles ‘in the bank’ for the recovery. 

I really can’t wait and am so grateful that something is being done!