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 possible....you 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 that....it 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 today....at 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 mind.....to continue to enjoy the time I have left without looking too far in the future...all about living for today....now 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! 

Results day 👍

Following last weeks CT scan, it was back to see Alice again this morning for the results.

Over the past few weeks since the cancer lump was removed from my back I have started to feel things happening under the left armpit. While I was quietly optimistic, honestly in my heart of hearts I have to say that I had expected things to have progressed / spread. Anyway Catherine and I found out today that it hasn’t!😀

Amazingly the blood markers haven’t really changed at all and the CT scan itself shows no further spreads. Just the small cancer growths under the arm and mediastinum as was picked up before in the last scan.

Whilst the cancerous node under my armpit is something that I can now feel, it is actually no bigger. The even better news is that Alice is now of the view that as it appears to have some calcification attached to it, surgery is a real possibility. She is going to refer me to a new surgeon, Andy Pay (based out of both Oxford and Reading) who apparently specialises in this kind of treatment.

She is also going to refer me to another specialist at the Royal Marsden to explore the possibility of trials for later down the line.

All in all, I really couldn’t have asked for more from today. Knowing that we are actually going to do something makes such a difference...whilst I know the longer term prognosis is unlikely to change as the cancer is still there in the mediastinum and armpit, the fact that some of it maybe possible to remove is a result!

Running, as always, continues to be a massive factor in helping to keep me feeling both physically and mentally strong....nothing has really changed in that department since all this started nearly 7 years ago. I’m trying to stick to 10km a day which is just about possible (albeit with a few breather stops along the way for the lung to catch up 🤣).

I remaining eternally thankful to my entire support team for getting me to where I am now. A combination of Alice pulling the strings on the medical side, along with Catherine, my family and friends being there for me every single step makes it so much easier to get through....thank you all so much xx

Now bring on that surgical knife, I’m more than ready!!

Lump was cancer afterall

So, I had the lump removed a couple of weeks back now (1st July). Rather than going through my GP, it was agreed given my situation I should have a general anaesthetic so that the surgeon could get a clear margin just in case it turned out to be cancer……good job too as it turned out to indeed be cancer!:-) I was really pleased that the man for the job ended up being the same surgeon who did my very first bowel surgery.

It was great to see him and catch up after all this time….nearly 7 years ago now since we last spoke!...time fly’s. He was fully up to speed on my situation and was only too happy to take the lump out.

Alice let me know yesterday that the biopsy was cancer positive which I must say I was very surprised to hear, particularly given the fact that apparently the CT scan didn’t appear to suggest that it was anything to worry about.

Some strange feelings at the moment as I take in this news. Part of me thinks, well nothing really changes as its off now and I am back to where I was before in that the cancer now just sits slow growing in my mediastinum / left arm pit. I have to admit another part does wonder whether things are picking up a bit of pace now that the lump (which was arguably fairly fast growing) turned out to be cancer as well. I am probably wrong and it is the former

Truth is though I still feel exactly the same – really well! 😊 I am continuing to run daily and as odd as it was to experience, the day after the surgery when I did a 10k it was the first time in months where I didn’t need to stop for a breather – weird eh!…..I am putting it down to the pure oxygen which I assume was still in my system from the op as I cant imagine that general anaesthetic would help in that way🤣

So next steps are essentially exactly the same as before….I will have another CT / bloods in around Sept / Oct where we will see what (if anything) has changed.

We are off for a small family break down to Cornwall in a couple of weeks time....can’t wait!