Tom

With just over 3 months now to the lung surgery, I have been crossing my fingers that the latest CT scan (which I had last week) was clear. Catherine and I have just walked out from seeing Alice and am thrilled to say we’re all good!!...totally clear of any cancer traces with a blood marker which is completely within normal levels...at 3.

To get this news just before we head off on our much anticipated family holiday to Florida is just fantastic!....something to celebrate with the boys tonight for sure.

Whilst I will have a couple of appointment with the lung surgeon and heart consultant shortly, I expect nothing than a quick catch up chat.

Essentially that me now left alone for another 6 months when I am scanned once again.

On the running front, things are not quite as I would have liked in that it is taking some time for the remaining lung to take up the slack. That’s fine as long as I know in time it will ‘come’ and I can run without having to stop every 5 mins to catch my breath. I am in touch with a few others online who have lost a lung due to cancer...I’m hoping they can give me a bit of encouragement that it does get easier.

My sights remaining focused on London next year...plenty of time and now with the news that I am all clear it’s given me a reinvigorated sense of purpose!...bring it on!!

Have a great summer holiday everyone 👍☀️!!

Thrilled to report that after nearly 3 weeks, I managed to get myself home with the family yesterday!. After numerous scans / tests the CRP markers and temperature checks dropped to a level where they felt comfortable to let me leave. Whilst I am still on a number of drugs to keep things in check, the main thing is that I can do it all from the comfort of home:-).

The team at Royal Brompton were simply incredible and so unbelievably supportive - I cannot thank them enough!. The after-surgery care was second to none. Once again, I feel so privileged to live in this country, with the NHS there to save my life....literally. So often you hear bad press surrounding the NHS....frankly I just don't get it - every single person who I have been exposed to in the NHS is clearly there for all the right reasons and gives nothing but the best care they can because they want to. Amazing institution, amazing people!!

I am generally feeling really good. Getting used to breathing with only one lung is taking a bit of getting used to, however each day it feels better and better. I had a fantastic nights sleep last night in my own bed (12 hours! - cant remember the last time that happened). This afternoon I couldn't resist trying a small run....well I say run it was more of a plod, stop, plod, stop, plod, stop etc. Despite struggling with the breathing it really was so great to be outside taking in the fresh air and stretching the lung....the weather was perfect and it was yet another reminder of why its so great to be alive.

Being able to work from home during the day has been great and really helped to bring a bit of normality back. Focus now is getting as fit as I can and then properly returning back to the office and running again properly!.

Thankyou all so much for your continued support and kind words.....never unnoticed by Catherine and me.

Cant quite believe I am writing this post whilst still being hospital.....so how is the case I guess you are wondering. Well, in terms of the main outcome from the operation everything is absolutely ideal - bottom line is that the cancer is gone!....result!.

The problem I have, and what is keeping me in hospital is two fold:

1. The blood markers which they continually monitor (CRP, White Blood Cell Count, Temp etc) are not quite where they need to be unfortunately. The team cant quite put their finger on it, however believe that it is an infection possibility in the space where the lung was taken out. Over the last 10 days they have been trying various antibiotics to kill it off (these AB's can only be given by IV hence the tie to hospital). The one I am on now I think is finally doing something which is great although they will need to see some consistency in the bloods before they are convinced it has worked. Their biggest worry would be that if there was an infection and it spread to the right lung then naturally there would be a problem.
2. On Sunday I had a bit of a heart moment where my chest felt very tight. The cardio team have done a load of tests (echo, ECG etc) and the good news is that they do not see a problem with the heart itself. The issue is believed to be as a result of the heart sack being inflamed following the surgery where there was a fair amount of manipulation done apparently. They have diagnosed something called pericarditis and given me a high dose of Aspirin and one other drug to get under control.

Bottom line is that provided all the markers continue to come down and the heart tests don't show any more issues I should be leaving early next week.

I've been able to keep myself active on the exercise bike (15k today) and there is no question that the breathing is getting easier every day which has been really encouraging.

Catherine (reluctantly:-) brought in my running gear yesterday (thanks babe!). My plan being that at some point this weekend I will go for a little jog around Hyde Park....cant wait!

So here I am one week on from surgery and thought I would drop another quick update out.

I really had hoped that by now I would be home, however unfortunately that hasn’t been possible. A lot of what I have gone through this last week is very similar to the previous surgeries. This has meant I’ve been able to keep ahead of the game a bit in terms of planning / expecting it. For example, the fact that I know painkillers have given me fairly nasty constipation in the past has allowed me to plan ahead and take plenty of laxatives. The new element this time round is the pain which has been far more intense than the others. It all stems from a shortness of breathe which can kick in randomly without a lot of notice.

When it does happen (usually evenings and early mornings for some reason) it can be a bit scary as my breathing is very shallow and trying to take deep breaths to get some control back isn’t easy as the wound from where they went in sits right around the diaphragm.

At end of the day I am reminded by the team here that it will take a little time for my body to compensate for the loss of a lung....I’m really not worried that it won’t happen however I guess in my head I had just hoped that it would have been a bit quicker than it has been so far.
Other than the pain control, the other reason for having to stay in (probably until Friday) is the fact that I have developed a post op infection which they are treating with IV antibiotics. It really isn’t anything major, it is just that they are seeing some of the warning markers (like temperature) being reached so want to get on top of.

So focusing on the positives, the team were really pleased in general on how the operation went. The daily CT scans I am having done are showing exactly what they should be - ie that the void left by the left lung is filling nicely with body fluid.

All the usual vitals are great, blood pressure, ECG etc so no worries there.

I am keeping as active as I can...a few laps around the ward during the day to keep the lung clear. They have also put an exercise bike at the end of my bed and I have been giving that a go as well.....sadly no running machines here🤣.
I cannot wait to be well enough to start running again.

They’ve told me to expect 4-6 weeks...let’s see about that!:-).

Was great to see the boys at the weekend!

So that’s it....back out the other side again!. I’m yet to see Simon (the surgeon), as I gather he moved onto another case after me. I understand from his colleagues he had in the room at the time everything went well. Catherine also said the same when I woke up having been told the same.

Apparently when Simon got ‘in there’ it transpired that the cancer had grown a bit. With this in mind it meant that he had to take the entire lung out. Whilst it’s really disappointing to hear, I am reminded of where I was only a few weeks back when I was told surgery was out of the question and I only had 2-3 years to live. I am now really confident that this will give me many more to enjoy life to the full !😀

The big test for me will be when I start running again...sooner rather than later hopefully. I’m told that only having one lung will not have to stop me. I am completely focussed now on making sure it doesn’t!

Thank you all for your incredibly kind messages of support to Catherine and I. We have such wonderful family and friends and I genuinely feel that I have that ‘army of people’ supporting every step of the way!

Following a lung function test, coupled with a PET / CT scan a couple of weeks back, its ‘a go’ for surgery on the 1st May!

I still can’t quite believe it’s all happening, and I continue to thank my lucky stars that not only did I come across Simon, but also that he is prepared to operate…. result!.

I am physically and mentally feeling really good and remain completely ready to go under the knife.

Unfortunately, due to the lack of lung function while I am running at the moment, I have decided with great regret to defer my London Marathon place until next year.

As well as the lung function / PET scan, I also had an endobronchial ultra-sound. Essentially it allows them to see the tumour itself to ultimately confirm what they are seeing on the scans.

Anyway as part of this, the chap that did it mentioned that the tumour appears to be almost completely obstructing part of the lung airways on the left side….he said that it is therefore probably no great surprise that I struggle a bit when running

I am hoping that if all goes well and Simon can take the tumour out without having to take a lung out, fingers crossed I will get my complete lung function back – that would be about the best outcome in my head. I can then set my sights on tackling the London Marathon next year with a half decent time hopefully😊!

Thank you so much everyone for your supportive words over the last few weeks – both Catherine and I really appreciate it.

Now, bring on the 1st May!!

Can’t quite believe it, but for once I have some good news!. So, after meeting with the surgeon at Royal Brompton today he told me he can do it!!!.

Yes of course there are risks involved...it maybe that once he gets in there it becomes apparent that he can’t take it out. Also an outside chance that he may have to take a lung out. However these risks are relatively low and so in his view it’s definitely worth doing. That’s good enough for me!

He has also run a marathon which makes him ‘number 1 guy’ in my book 😀👍.

I will have a series of tests over the next 2 weeks and then see him again for the results. Assuming they are all fine, then surgery will be all booked in.

Happy days!

While I have been spending the past few weeks getting my head around the terminal diagnosis, the biggest challenge has been the feeling of not doing anything. Having spoken with a few contacts, I have come across a surgeon in London who apparently specialises in treating inoperable cases. Anyway, after speaking with Alice, she has arranged for me to be referred to him. We will meet this Friday at his clinic.

I am desperately trying to not pin too much hope on him being able to help. After all I am have already been told that given where the tumour is, it is too dangerous to operate. That’s said, you never know eh 😀.

A bout of ‘man flu’ knocked me around a bit recently, however other than that I am still feeling really strong. Running continues to be fairly tough as my breathing is now definitely been restricted by the tumour pushing on my airway....feels a bit like breathing through a straw. Can’t deny it’s very frustrating and also is a constant reminder that ‘it’s there’. I just about managed to get round the wokingham half marathon recently, although nothing to write home about time wise. Weather was lovely and it was fantastic to see Catherine and the boys handing out water to all us runners at the half way point (which goes right past home).

I am still in two minds about the London marathon. Undoubtedly it would mean a ‘run,walk,run’ event for me. I’ve always wanted to give every race I have entered my all and running the whole way is part of that. Sadly I think I have to accept that the days of being able to do that are over now. But heah that’s ok, I can deal with that as long as for the most part I am running.

I’ll give it another few weeks and then make a decision on whether I do or not...if not London, then certainly a major half marathon later in the year.

Catherine and I are continuing to book up lots of fun things to do in the diary with (and without sometimes!) the boys...lots and lots to look forward all part of ‘project memories’ 👍

Now being a few weeks on from the news I had always feared....that the cancer is back, and that this time it isn’t curable, I am definitely starting to come to terms with it now.

Yes of course I won’t lie as there have been moments when it hits home and I am reminded of what is to come....the fact that I won’t be around to see the boys grow up and develop into the wonderful men I’m sure they will become is a difficult thought to accept.....knowing I won’t grow old with my beautiful Catherine is also something I struggle with often in periods of reflection.

However, overwhelming I do still have an overriding feeling of living for today and making the very best of whats left for me.

I’ve seen Alice since I last posted pre-Xmas. We had a really honest conversation about how things may likely pan out. That’s something I have really appreciated as it’s really helped me internally get my head around how to plan the time I have left (work, time with the family etc). Whilst she has now told me that in her view “up to 3 years is probably more realistic” it hasn’t really changed anything about how I feel right now.

Yes, sure 3 is not 5, but then I could spend the rest of my time (however long that ends up actually being) agonising it and not just getting on with my life. I’ve therefore decided to internally draw a line under the whole ‘number of years’ bit and focus on the here and now.

Other than when I run, physically I feel exactly the same as I did last year. While that continues to be the case, then no problem👍

I’m due to see Alice in a week where I am expecting that we will discuss when a course of radiotherapy will start.

I’ve had to take a day or two off running recently due to a recurring injury...nothing major or that won’t be sorted soon I’m sure. I still have my sights set on the wokingham half marathon in Feb and then 🤞the big one in April (London marathon)!.

It feels difficult to reach out again to you all as I know many of you have already given so generously to my charity. I am also conscious that given how things may progress and that treatment may have started by April, I may not be able to run London.

All that said, if you would still like to donate I would be hugely appreciative!!. I always had in my mind a target of £20k and I am almost there!....just over £19k and counting. It would be great if you could help me get there!. Thank you very much! X

https://www.justgiving.com/fundraising/runthroughcancer

Not quite sure how to articulate this update as it’s never been a message I have ever been told since this ‘whole cancer thing’ started.

So today was the results of the latest CT scan. Unfortunately not something that Alice could really sugar coat. In a nutshell the cancer is back in the lung (left side and around the size of a walnut....a small one I think). This time though it’s not a curable situation. She feels that anything up to 5 years would be a good estimate for what I have. As always Alice explained things perfectly and essentially has explained that for the time being she will keep monitoring my bloods and when the time is right she will start treatment..it won’t be surgery but either radio or chemo (or a combination of both).

This is news that Catherine and I were obviously hoping wouldn’t ever come, however at the same time at least we now know where we stand now and from now on its ‘project building memories’.

Physically I feel fine and am still running as much as I can...albeit a lot slower as the scar tissue from the last lot of radiotherapy is holding me back a bit on the breathing front.

Since my last update, Bowel Cancer UK have been in touch and offered me a place at next years London marathon. I would love to think I could do it one last time and so will focus all my efforts into training and see how I feel come the new year...then at the end of January I’ll make a call on whether I think I can do it.

So for now whilst it’s not been ‘a great day’ in the Pearce household, I really do feel strong and know that with Catherine and the boys beside me, I’m not going anywhere anytime soon:-).

Catherine and I have always tried to manage things where the cancer fits around us and not the other way around. We feel no reason to change this way of thinking despite this set back.

So for the moment while it has no impact on
our life’s let’s crack on babe!. Love you 😘 xx