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.