Just when you thought it was safe to go back in the water…
Life is a rollercoaster (either that or I just turned into Ronan Keating), as I pick my way through the slings and arrows of outrageous fortune along the rocky, up-hill, road of life, trying to spot the potholes, but more often than not ending tit-deep in a bottomless puddle, Dawn French style.
Yesterday was just one of those days. Didn’t sleep well – I think I clocked up about 30 minutes (taken in 5-minute chunks), so the day started with major league grumpiness and a general hatred for anything that slept better than me. Not aided of course by two cats of differing temperaments – one lying fast asleep on the sofa, legs open and brandishing his pussy bits (now THAT is a contradiction in terms) and actually snoring. The sort of snoring that says to a knackered person, “ha, bloody ha! You didn’t sleep last night and now I’m going to make you suffer”. The second cat I think had been secretly snorting lines of Iams and was hyper, demanding attention in the way cats do best – giving you the saddest look possible then sticking their bum in your face! He just wouldn’t leave me alone. We’re talking here about demented prancing on keyboard, sitting on hand that uses mouse, jostling arm whilst typing and head-banging the monitor. “Pick him up and put him on the floor” becomes a game – to see how many times he could make me do it. After about 20 repetitions and with no energy left to play Mr Nice Guy I resorted to the only guaranteed method of ensuring cats give me a good 10 yard exclusion zone – reach for the wormer SpotOn! Usually a drop of that on their necks and I’m excommunicated for at least a few hours. I think this bought about 20 minutes respite. Oh well! Some days exist only to take the piss out of you and you know you should have stayed in bed! But Struggled on and at least the day started bright and Sunny – good washing day. Several loads in overflowing basket and a chance to bash on with them. Pegged out second lot of clothes. Forecast said hot; sky said “Ohhh fresh washing, let’s have some fun”. So, ups and downs of the day became ins and outs – same shit, different gearing!
On the plus side, there was a sparkle of good in the morning as David escaped unscathed from the Dentists following a checkup plus a clean and polish, so he came home with a Colgate ring of confidence glowing like a fallen halo.
The afternoon though heralded my second hospital excursion of the week and because David was already off work it was an ideal chance to turn it into a family outing, so that at least he could ask the doctor any questions he has from a carers point of view. I know that following the chemo and because of all the damage that has been done to my body, I still have a few things that need sorting. Many of these things are on hold until my blood returns to normal. In simple terms, the lymphoma was also widely spread in my bone marrow. It is the marrow which produces blood cells. The chemo killed off not only the cancer but also a lot of the bone marrow’s ability to produce more blood. Of greatest importance are the white cells, which form part of the immune system. So with each chemo session my immune system was destroyed and then had to re-grow in a process similar to burning moorland – raze everything to the ground, and allow the healthy shoots to grow back. (Of course in the ‘dips’ of the treatment you go through periods where you are extremely susceptible to infection and feel very ill, but then things start to grow again and you get a bit of immunity back.) All this means that I am now being monitored to check the proportions of white cells in my blood as the system kicks back in and grows in strength. These are steadily rising, but it will be a while before I’m fit enough to tackle some of the residue problems.
As you’ll know, I’ve been having problems with nausea and the ultrasounds and gastroscopy a few weeks ago gave us some clues – no signs of any ulcers etc but evidence of slow digestion probably caused by some of the pills I’m taking. What is happening is that food is staying in my stomach longer than expected, so when I come to eat a meal I’m already partially full and reach a point where there is no room, so a vomit reaction is triggered. Change the pills, speed the digestion, stop the nausea, save the cheerleader, save the world – or something like that.
So I was actually really excited yesterday about finally moving this forward and starting to be able to enjoy food again, instead of having to have a bucket or barf-bag close at hand all the time which isn’t a good look if you have guests round or want to eat out anywhere. Maybe I should live on an aeroplane where barf bags are always provided anyway! Just to be able to eat a meal without fear of an encore would be such a huge thing for me. And simple to resolve if it just needs a tweak to my medication – and that’s better than anything that may need surgery, no nasty lumps or ulcers or tumours or even men called Jonah, stuck in my tummy, left over from the days when I wasn’t the streamlined person you see today. I like to say I’m feeling summary – not Summery, in the context of shorts, shades and sunscreen, but summary, meaning “a small, succinct version”.
We got parked, eventually, and made it to the ward in good time. They took my weight, as they do, which was slightly increased from last time and is a good sign. So things looking up, positive vibes. It’s going to be a good day! Let’s put the past behind us, sort these pills out and start feeling human again! These milestone days are few and far between!
People keep telling me to be optimistic, and that really infuriates me. For me you see, optimism is just a blind faith that everything will be alright. That sort of thinking does not prepare you for the fact that some things DON’T go according to plan. My way of dealing with things is to try to understand what is happening to me and what the various outcomes may be. If I know a treatment will make me feel nauseous then I can prepare myself for it. An example: When I was in hospital one night my vision went very weird. I started to get a point directly in front where I couldn’t focus, like someone had inserted a contact lens with a smudge in the middle. Then I started to not be able to pull the images from my two eyes together, so I saw double of everything. Now this happened on a night when the ward was under a lot of pressure with an emergency admission of someone who was very poorly and quite rightly the nurses needed to give that patient the lion’s share of their attention, and when I called a nurse I was told they would get to me as soon as possible – I was non-critical in terms of my care at the time, so clearly and rightly a lower priority. BUT I was lying in bed scared beyond belief that I was going blind. Bright lights were agony, everything started to spin (like I’d downed three bottles of Scotch and sat up too fast) and I was terrified. I remember it well enough – I’d been watching “Muriel’s Wedding” and deciding that adding a couple of ABBA songs is just simply not enough to turn a turd into a tiara! I’ll not rush to watch it again – that was in fact my second time because I convinced myself that I must have missed something on my first viewing! It was the best part of three hours before I got to speak to someone properly and I defy even the most balanced mind to not start working up worst-case scenarios when left with so much time in such a situation. When I WAS seen I was told in a very off-hand way that. “oh yes, that’s a side effect of the steroids. It is only temporary and you’ll be fine in the morning. Just sleep it off.” If I had know that I’d have been prepared and nowhere nearly as scared. When I asked the consultant the next day why I hadn’t been told about this he said that it was a side effect that not everyone experienced and they tend to not tell people because they don’t want to scare them!
So back to my point – being realistic. What is better: “You’ll be fine, everything will be ok”, or “It isn’t an easy ride and you’ll have some difficulties along the way, but if you know about them you can be prepared for them and face them head-on”? I know my body by now. I know when things are not right. I knew I was very ill a year before I was diagnosed with cancer but all my idiot GP managed to come up with was that I was suffering from stress and sitting badly at work! Now I think that my approach IS optimistic. I acknowledge that there are still things not right, I tell the doctors about them, I go for tests to understand what is happening with the intention of resolving the cause of the problem. Is that not entirely optimistic? Is that not all about wanting to be better? Surely that is more positive than sticking my head in the sand and hoping things will just sort themselves out in time?
So I went to my appointment yesterday with this optimism, knowing that I’d had a plethora of tests and that the gastrologer had a clear understanding of what was causing my nausea. Except MY doctor, the nice one, the helpful one, the one who gets things done, wasn’t there. He’s off ill. So I was landed with a supply teacher – the medical equivalent of a Hobby Bobby. I knew more about my tests and their results than he did. I’m convinced that he was briefed to just keep things in a holding pattern, don’t make any radical changes, don’t do anything clever. You see, MY doctor would have said, “your tests came back clear, so here are the next things to try…” Whereas the stooge pretty much said, “your tests came back fine so I’m not going to do anything…” Do you see the difference? So I asked if there was anything I could do in terms of diet to speed up digestion. His answer was to increase my fibre intake, and at that point a shiver went down my spine because he clearly had not understood the problem at all! I need the food in my stomach to digest more quickly. Fibre is slow to digest, produces roughage, which helps the passage of waste out of the body when it has left the stomach. It is exactly OPPOSITE of what I need. He’s prescribed me some anti nausea pills though which I suppose is something, although I kinda feel this is paining over the crack and not fixing the problem.
Simple analogy: Think of my stomach as a swimming pool. Adults (or food) swim in the pool and it all functions perfectly. Introduce some children (pills) who have a tendency to wee in the water, and things become unbalanced. So you have three options to restore the balance:
- Remove the children (pills) entirely. We tried this for 5 days and at the end of that period I was feeling much less sick. The day I started the pills again I felt poorly! But this is not a long-term solution – I need the pills like the pool needs the revenue the kids generate.
- Add chlorine to the water to mask the effects of the children’s pee. (Or in this case, give me anti-sickness pills)
- Get some better children who have been taught to not piss in the pool.
I was hoping for option 3, but came away with option 2. Although, knowing the lack of understanding the guy had for my actual system and where the problem lies I suspect that rather than giving me chlorine he’s probably misdiagnosed completely and has given me a note to get the dressing rooms redecorated, thus attracting more pissing kids and turning me into a toxic cess pit! Just when you thought it was safe to go back in the water…!
Addendum to the above:
Forgot to say, Dr Quack wasn’t able to prescribe the new pills from the hospital pharmacy so we had to run a note from him down to my idiot GP’s practice yesterday so that Dr Diabolical could prescribe the pills. Dr Quack made big mutterings about these tablets and how they were expensive (have some guilt along with your pills), so I guess the truth is that he wanted the GP to foot the bill and not the hospital.
Turned up at the GPs today and was told they are only giving me 5 days of the pills in case I get side effects! Oh THIS bodes well! I ALWAYS get side effects! What they mean is they are expensive pills so they HOPE I get side effects and then they don’t have to foot the bill! But my position between rock and hard place is firmly established and I poodled off the the attached pharmacy to pick up pills. “Sorry, we don’t have these in”! Joy! Drive to other pharmacy in reasonable distance: Closed for lunch.
When I checked the prescription though something clicked. Dr Quack had called the pills by a technical name, not the trade name, Ondaznetron. Had them before, during the Chemo. Little yellow tablets, taste of banana. Didn’t help my sickness. I have some upstairs still – let me check the patient information sheet… Oh yes, those are the ones that fucked up my vision that time in hospital. Well, I should have known!
