Getting used to new protocols

 Getting Used to the new protocols

 

I am now nearly a month into the changes that my various medical advisors initiated towards the start of October. Fortunately I feel quite well, with no nasty side effects visible. so far. But of course it is very early to draw many conclusions.

 

There have been so many changes that I am inclined to list the whole package in case it passes useful information to anyone.

 

I take my morning collection as soon as I get up. Every day has a 1g pill of Keppra morning and night. Keppra is supposed to reduce Seizures and I assume is cheap and easily available. I have very few seizures, so that it is an indicator of value too.

 

Steroids are a nightmare to take because they play with your energy. When I started on them I was wide awake every morning long before six. Luckily I have been able to negotiate the dose down and at times even eliminate it, but I do accept there are benefits too. I have been on 2mg three times per week, but with the  new package have gone up to 6 doses per week or 12mg in total, still a manageable maintenance dose for me. Every Dexamethozone pill comes with one called Pantoprazil, which I Think does something of marginal benefit like line the stomach.

 

Another morning pill is an antibiotic called Bactrim three mornings per week. I am not completely sure what this one does or prevents but I guess My job is not to reason why.

 

My morning pack is completed by 5mg or 10mg of a blood pressure control pill called Lisinopril, which I have been taking for years even though blood pressure has rarely been a problem for me.

 

Then there is my regular immunotherapy treatment, administered every three weeks or so through an IV. I have had nearly twenty doses by now, But the consensus seeks to be that it is still effective. It does not seem to generate side-effects.

 

On to the evenings, which used to be easier but no longer are.

 

The evening regulars are 1g Keppra (what else?) and 10mg of a statin for *Cholesterol control. I guess having got this farwithout diabetes is quite a triumph.

 

Then I have my chemo to complete the package. It is 100mg daily of Tammodar, a lighter dosage of the chemo I took in 2023-24, and so far with no side effects. Half an hour before bed on an empty stomach I take an anti-nausea pill called ondansetron and then the 100g pill as the last thing at night.

 

Fortunately nothing in these packs is causing side effects so far. I guess we will have more of an idea of its effectiveness after another  treatment round and an MRI later in November. 

But the treatment changes are only factor working here. The bigger question is the effect that my cancer is having on my overall health. Entering year four or a disease that kills most within two years, Am I likely to experience decline now or soon?

 

I have to accept that the answer to this question is yes. Worse, there is mounting evidence of decline already. The treatments can reduce the rate of decline, but our days of anything approaching full health are probably rather few from now. Luckily, so far I can still function quite well, but /I see decline everywhere I look. Now I have been referred to a sort of physiotherapist, which may be another way to slow things down.

 

But accepting this decline has involved many tears. I find it hard to separate physical issues with mental ones and permanent declines with temporary ones. It all places strain on both myself and my wife.

 

It is not hard to spot the symptoms of decline. These last two blogs have revealed that I can no longer write effectively. I partially blame the spell check, but that is only a small part of the problem. I can no longer write! Something that has nourished me in many ways for many years is now out of my range! Recognition of this lost capability caused may many tears last week. It is losing valued capabilities which may be the most frustrating thing of

 

 all.

 

Another disappearing capability is a the ability to get around. So far I still have had no falls, and I can still get into and out of the car, but the near misses have started to mount up. Oh, my poor wife!

 

But what can we do? This is year four, after all. Not many make it that far. We have much to be grateful for. Over the last week we have loved the company of two of my most precious relatives, maybe the most valuable members of mine and my wife’s support group. Goodbyes continue to be the hardest things. Perhaps our luck will hold out longer.Goodbye is hard, but it is better than on more goodbyes.            

Tougher times return

 Autumn has proved to be the toughest season in each of my cancer years so far, and 2025 is certainly continuing the pattern so far. Perhaps, as in earlier years, the phase will pass and peace will return for a while. Or perhaps autumn will signal a new phase in my illness.

 

The minor symptoms leading to diagnosis became clear in October 2022. Treatment was working well until I contracted an infection that required a draining operation in October 2023. Again, treatment worked well for a time but late summer 2024 led to one more operation (number five altogether, if you include biopsies).

After that has come another long period of consistent treatment and relatively sound health.

 

But autumn night well be striking back one more time.

 

Our difficult patch has something to do with our stream of visitors, now finally slowing down after a busy summer. Every visitor has been charming and a delight to entertain, but each party brings its own challenges< which can lead to added pressure on my wife and me. In the majority of cases, one or more of the visitor group will have a deep history with one of us, but know the other party in my marriage a lot less well. The upshot is everybody trying very hard but the risk of flashpoints between my wife and me. Generally we have coped very well as a couple with our new surroundings, but the pressure did catch up with each of us during September. We have each displayed our weak points and the results have been predictable. In case, I have a nasty of making critical remarks in public. My wife has her own vulnerable ways. It has taken quite an effort from each of us to discard these unhelpful habits.

 

All this extra pressure has come at a time when my cancer is not behaving so well. The same treatment and meds have been effective for almost a year, but my luck could not last forever. For each of the last three MRI’s, my local team gave more positive summaries than the analysis of the American team that we are fortunate to retain access to. But this last scan, the opinions and recommendations converged in a more pessimistic place.

 

As a result I have just started a new regime. The immunotherapy infusions will continue each three weeks for as they remain effective, but in addition I will start nightly pills of a smaller dose of the chemotherapy we used (with some side effects) back in 2023.

 

These changes are always scary, especially when brought about by new or stronger symptoms. The mind cannot help rushing to unsubstantiated conclusions. Is this a new phase, one with no prospect of recovery? Will these accelerate from here? Should I anticipate the worst from here?

 

It is quite hard to avoid rushing to the more pessimistic conclusions, but our history clearly indicates that these conclusions are usually wrong. Of course we know where this journey will ultimately end, and we have ideas for the most likely time windows. But there are positive outcomes possible too, and so far we have managed to recover from setbacks to enjoy periods of reasonable heath and even longer periods where we have used the setbacks to add further strength to our partnership. Perhaps this can happen another one or two times.

Whatever the outcomes, we will endeavour to choose paths of gratitude and positivity. Our little wobble seems to be ending, even if that has involved many tears. Most encouraging, as I see it, is how my wife is integrating into what could be a highly fruitful life in Portugal. She has a Portuguese class two evenings per week, choir with me one other evening and dancing on another evening. This all fills me with joy and pride and hope that my master plan may pay off.

 

Perhaps we can enjoy a further substantial period of time together with enough health to avoid serious limits on what we can do and enjoy. Then we know when my wife will have to sacrifice some things for a time while my needs for care have increased. But my goal has always been to help her as much as I can to prepare her for what will surely happen and to offer Portugal as a viable option to live, for a short or for a very long period.

 

It is probably not hard to spot that it has taken me twice as long as usual to produce poor quality material riddled with errors. I can only apologise and promise to try for better next time. We will try to bring positive attitudes and perhaps new new health regime will help in lots of