10. License to Chill

An incredibly busy six weeks. The recovery from session four of chemotherapy is ongoing. Water retention and the advent of swollen ankles is not something that I had experienced with the previous sessions and almost immediately on returning home I am walking as though some one has slashed both my Achillies tendons. It is very, very painful.

The ease with which the barely-existent side effects of previous sessions had been dealt with, and my now clearly misguided nonchalance, has been replaced by a grimmer reality: cankles.

There is also the cumulative effect of the chemo to deal with, and I am falling asleep at the drop of a hat. Often in uncomfortable places and positions.

Unfortunately, there is no change in my ankles after a week. They are still incredibly sore. I have messaged the team in London, but they are hesitant to prescribe a diuretic, which may reduce the swelling, as apparently my kidneys already have enough on their plate.

Another couple of days and I am advised to visit the local acute-oncology department for a once over. All observations are normal and the swelling is not uncommon with one of the drugs I am receiving during the chemo. But again, there is not a lot that can be done.

Ultimately an echocardiogram is added to the appointments that are booked for my return to London for session five of the chemo.

Death by Toast?

Early May sees a visit to Liverpool with Liv for the North West swimming champs, just the two of us. I am shuffling around like a rusty robot and really not able to keep pace, which is the theme of the weekend. Well, that and the fear of choking!

My inability to eat, and in particular, chew, is leading me to believe that choking may well kill me before the cancer does. This is most beautifully evidenced by the sight of the remnants of a piece of Premier Inn toast which, after lodging itself in my throat, is ultimately dispensed across the breakfast table in front of Liv. She doesn’t say anything, her face on the other hand most certainly does. Pure, unfiltered disgust.

The following weekend I was supposed to be taking Meg to another swim meet, this time in Derby. I was looking forward to some quality time with the youngest, but after such a torrid couple of days in Liverpool, the sensible decision was taken.

The days are pretty grim really and it’s getting difficult to remain positive. Cancer, once again, demonstrating a remarkable talent for being a prick.

Accelerated Retirement Planning

I arrived in London a day early ahead of session five. Not for anything practical in terms of treatment, but for a little pick me up. If I’m not going to get a traditional retirement, then anything I had planned or dreamed of for later in life, will need to be brought forward, and the first of those is an impractical sports car. I would add that this has only been made possible with having decent life insurance and critical illness cover, and again it’s just something you think you will never use. If I can get serious for a moment I would urge everyone to ensure that they are sufficiently covered.

I had been considering a few options for the car, including a 60’s Mustang and an 80’s Mercedes SL, but ultimately, I decide that something newer should hopefully come with the least amount of problems! Still, it’s 15 years old and no doubt beset with issues. A little bit like myself.

I take a trip out to Surrey on the train for a test drive, she’s a beaut and the deal is quickly agreed. The car will be delivered to Liverpool sometime next week.

Medical Marvel, Unfortunately

In the meantime, it is back to more pressing matters. The echocardiogram is done and I meet with the clinical and medical oncologists. The Achilles pain has them both baffled, it is not something they have ever seen before. I am, by all accounts, a medical marvel, although I’d really rather not be in all honesty.

I am sent for another full body PET-CT scan and when the results are reviewed the good news is that there is no cancer in the ankles. As great as that is, I am not sure it really matters at this point. I’d just be grateful if the pain and swelling would dissipate.

Session five of the chemo the following day is once again delivered as normal. It really is just a case of rinse and repeat; foot massage, drugs through an IV for between 6 and 7 hours and plenty of trips to the toilet.

On returning home the cumulative effect of the treatment once again hits hard in terms of fatigue. I am knackered and the majority of the weekend, close to 36 hours, is spent sleeping.

Midweek and I’m away again to collect the car, just a day trip on the boat, which was a straightforward affair. The kids had previously approved the purchase from the options available, but I definitely catch an eye roll from Liv when she clocks it!

Gravity Remains Undefeated

The following day and I manage to take a tumble on the driveway. I missed the smallest of steps and in trying to save my fall with the other leg have managed to make matters worse. To add to the ankle pain, it now feels as though I have ripped both calf muscles. Absolutely excruciating. What an absolute melt. I’ve no doubt set myself back around 4 to 6 weeks and the possibility of any sort of enjoyment on the golf course looks a million miles away.

Still, there are more important matters to attend to. A call from the oncologist provides a mixed update on the further review of the most recent PET scan. 

Those pesky spots in the lungs look a bit better, and the ones in the lymph nodes have been suppressed which is positive.

The kicker comes from those spots of cancer in the bones, the ones giving me back pain, which is my biggest ongoing issue. These spots are still active and are not being affected by the chemo, further good news shows that there are also a few new areas which have developed. Brilliant.

From the outset, we had known that chemotherapy generally does not work in treating my particular type of cancer, so to have seen any sort of benefit over the last 15 weeks has been surprising and welcoming.

The truth though is that I have now had as much benefit from the chemo as I’m going to get, so it will stop. No more chemo, and session six of six scheduled for early June has been cancelled. I’d be lying if I said I was going miss it. Chemo can join surgery and proton therapy in the ever-growing queue to kiss my arse.

The adjusted plan is to receive a single dose of radiotherapy to try and address the spots in my back. This will be delivered in TT week, after which we will discuss the next steps. First things first though, time for a holiday.

Portugal

It really was awesome to get away and a week in the sun in Portugal was much needed. In all honesty I did absolutely nothing. Mel and the girls filled their mornings, and I would just join them by the pool for the afternoon.

The complex was large enough that any walking quickly proved a struggle. Fear not, Mel has this covered, and the hire of a mobility scooter is quickly arranged. Honestly, what have I become?

On the two occasions I did decide to join in the ‘fun’ it didn’t last that long.

Padel was agreed to on the proviso that I wouldn’t have to move. Just hit the ball back to me, a simple rally. First up Liv. Now, there is either a distinct lack of hand-eye coordination, or a very real possibility that she was simply taking the piss. Padel done in less than 90 seconds.

The introduction to golf lesson also proved futile. ‘Anyone play?’ Hand raised and I’m handed a 7 iron. One shot which was hit fairly well. Immediate pain in my calf. It’s ok, I’ll watch.

The progress that the girls made in just an hour was impressive. But it would also confirm that Liv was most certainly been taking the piss during padel.

Still, the main objective was achieved. A nice relaxing holiday and plenty of memories made.

Running repairs

With the chemo having stopped I am almost immediately beginning to see small shoots of recovery with my hair. Aside from the head, I had lost the bottom eyelashes and about 75% of my eyebrows. It will no doubt take a bit of time, and we’ll have to wait and see exactly what comes back, but I’ll settle for anything at this point.

The earlier Proton therapy had destroyed my already substandard hearing. But that is now fixed too with the help of some snazzy new hearing aids. This has really made life easier, particularly for those who don’t have to continually repeat themselves!

I’m like the $6m Man. Kind of. Albeit with a smaller budget.

‘We can rebuild him. We have the technology.’

I am not sure that we do.

A Matter of Time

Ahead of my final visit to London, for now, I received a call last Tuesday from my clinical oncologist. The radiotherapy scheduled for Friday is going ahead as planned, but they wanted to explain that the ‘spots’ of cancer causing the issues with my back had spread to an area covering over 30cm, from my lower back to the bottom of my pelvis (T12-S4). Seems quite a lot if you ask me.

Wednesday sees a CT planning scan. This involves placing markers to ensure that I am subsequently placed in the correct position when the radiotherapy is delivered later in the week. These markers are permanent, essentially the same as a tattoo, two on my hips and one just below the below button. I am still struggling to ascertain why my underwear needed to be drawn to my knees for these to be applied.

The following day Mel and I have a meeting with my medical oncologist. The pain in my back has the potential to get worse for a couple of weeks before I will hopefully see the benefit of the radiotherapy.

In discussions it is suggested that I take a treatment break for now, and recover from everything I’ve been through. A six-week recovery break after surgery in November was followed by 20 sessions of Proton therapy, from which I was allowed another two and half week’s downtime before hot-footing it into chemo. No wonder I’m knackered.

All the treatment I have undertaken has always been about quality of life, and that is now going to be prioritised. We will check in again with the oncologist in 6 weeks to see how things are going.

The reality is that I am likely see some decline in my quality of life over the next 2-3 months, with more pain developing and generally I should expect to feel more unwell. A period of somewhere in the region of 4-6 months in terms of life expectancy is not an unreasonable timeframe. Christmas is likely a stretch.

There is one other drug we could try, but just because we can, it doesn’t necessarily follow that we should. There would have to be a clear benefit and not just more suffering. Given that the oncologist didn’t seem to be overly advocating its use would suggest there won’t be enough benefit, but he’ll talk to us more about that in 6 weeks.

There are currently no clinical trials for my particular type of cancer in the UK and whilst some are emerging in the US, red tape is stopping them getting here so they are not an option!

I have the radiotherapy on Friday morning, which is pretty much over just as soon as it began. We then catch the late afternoon flight home to explain everything to the girls. I don’t feel the need to detail just how horrendous that was.

I had intended to finish this latest entry here; however, it is generally not in keeping with previous posts to do so on such a note. With that, and the more focused timeframe in mind, if anyone is interested in a beautiful example of an Aston Martin V8 Vantage, just give me a shout. My long-term ownership plans appear to have changed somewhat and there is no doubt a good deal to be had.