Latest Results

Hope everyone is well in these continuing mad times! – almost starting to become a bit ‘normal’ now I guess eh:-)

So today was the day I have been apprehensively waiting for as I got the results from the latest set of blood tests. Unfortunately, it has indeed confirmed that the cancer is back as the CA marker has risen to 80 (similar level to when it was last in my lung prior to the pneumonectomy). To be honest I shouldn’t really be that surprised as Alice was clear to tell me when we last spoke in February that it was very likely to be the case.

In the past few months, I have also developed a lump on my upper back (same side as where the lung was taken out) which initially I thought was a just a cyst / lipoma. I obviously mentioned this today to Alice and she was able to have a good look at (fortunately the appointment was face to face, having initially been booked as a phone call given Covid). To my surprise she thinks that this maybe something cancer related given the fact that it doesn’t feel to her like either a cyst or lipoma.

So next steps are now clear with a CT scan being booked in at some point over the next 2 weeks. This will give a clear view of where in my body the cancer is. There is a small part of me which wonders (and hopes) whether it is only in this lump on my back……if so then maybe there is a chance that this can be operated on...long shot but you never know. If, of course it is back in the area which Alice originally mentioned – in the mediastinum, then of course this is a different situation.

I have lots of thoughts running through my head at the moment with many questions….I can only really find out the answers to these after the scan. The option of joining a clinical trial is one which I still really hope maybe possible, however right now this isn't on the cards.

In terms of how I feel right now……really good and strong! I am continuing to work full time and run everyday (around 60k a week) which helps so much to keep my mind clear and focused on ‘the fight’😊. Catherine and the boys are, as always, doing what they do best and keeping everything as normal as possible....frankly I'd be lost without them! I consider myself very lucky to have them on my team x

What a Crazy Time!

I still can’t quite believe how much the world has changed in the past few weeks! It has really put my own predicament into perspective. Whilst I know I face a tough road ahead with a terminal cancer diagnosis, right now this feels very trivial when I think of the thousands of families up and down the country who have lost loved ones from this terrible virus.

Like nearly everyone I am working from home in this ‘new normal’. I’ve been advised to stay isolated from Catherine and the boy’s as best as I can. The hospital have said that whilst I am not ‘in treatment’ at the moment (chemo / radio), the fact that I have terminal cancer and one lung puts me at a higher risk than most. Anyway can’t complain and fortunately we converted our garage a few years back so I am shacked up in there at the moment!😂. Sounds much worse than it is...it’s is really very comfortable with a lounge, bathroom and bedroom so all good. I am seeing Catherine and the boy’s every day in the garden which is great. Also managing to run every day (around 60k a week) which as always has been a godsend and really helped me stay focused and mentally strong

It’s difficult to know at the moment what will happen next month when I am meant to have my next blood test and appointment with Alice to see how much the cancer has developed...hopefully not a lot 🤣. I really do still continue to remain very optimistic about the future and cling on to the hope that maybe a clinical trial maybe something I can benefit from once the lockdown has past.

I hope everyone reading this is safe and healthy.

Cancer returns again

Catherine and I have just received the news we had both feared may happen. Following the CT scan I had a couple of weeks ago, Alice took us through the results this morning. Unfortunately the cancer is back again. This time in a place called the mediastinum, which is a place just behind where the left lung was. There is also something which has been picked up in the scan under my left armpit which they think maybe related as well (although too early to say at the moment).

In terms of treatment its not great news as surgery and ultimately possible cure is not an option. Whlie I am still feeling ok, Alice wants to hold off doing anything for the moment. At a point in time that we both agree, the idea being that I will have some chemo to try and keep the cancer growth at bay for as long as possible. Its really difficult to give me a timeline on what I have left, so for the moment I will just keep on living life and enjoying what time I have with Catherine and the boys.

Once I have given myself a couple of days to get my head around this news, I intend to get focus back on training for the London Marathon later in April.....not promising any quick times. Far from it as it is more likely to be a 'run, walk, run, walk' marathon this time. Still, it will be great to hopefully feel well enough to give it a shot....bring it on 🙂

All Clear!

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 👍☀️!!

Home at last!

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.

Still here:-)

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!

One week on

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!

Out the other side again 👍

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!

Got a surgery date

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!!

Woohoo!

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!