Month: February 2018

Found the missing pennies, poo flowing like water, a lack of taste – 10-Feb-2018

This is not going to be a complete blog, I was so poorly that I wrote nothing for days and can only barely remember what happened, I will do my best.

Worse, it’s not going to have Teresa’s editing pass over it, she is mega busy decorating and I just cannot ask her to spend time on editing for me (much as I need it), so here we go, ….

Where is that Penny – Sat 10-Feb

A really bad night, back pain, stress, diarrhea, pain, uncomfortable.

Another diarrhea pill, popping them like sweeties, so no poo reports

We needed to go to Sainsburys, so I dragged myself out but I had to give up part way through and go sit for 15 mins while Teresa finished the shopping, I hate being so exhausted, hence considering the Electric Wheelchair

[Editor’s note: even now the penny hadn’t fully dropped!]

Back home, collapsed,

Tried chicken fillets with leak and cheese sauce. Load of tasteless cardboard. Forced myself to eat it but really!

4:30pm taken more anti- diarrhea pills and yet the bottom alarm went off and off I dashed. Yup, no time to hang around. Now the daily procedure is done I have taken another pill and hope all will be quiet for the night!

The penny drops at last, Sun 11-Feb

Still having a really rough time and decided to look into whether stopping taking Tramadol might be connected. Here’s what I posted to FB, apologies if you’ve already seen this

Did you know about Tramadol withdrawal symptoms. Even at my dosage (300mg a day) and time on it (2-3 months). It’s no fun. Opiod and antidepressant withdrawal in one package. I asked the GP if it was addictive – he said much less than ordinary opiods. If you google it that’s not the case and it certainly explains the hell I am going through at the moment:

Here’s a selection:

  • Insomnia – Oh Yes
  • Anxiety – Yup
  • Pain (muscle aches) – hard to tell most things already hurt!
  • Nausea – YES
  • Tremors – yes
  • Diarrhea – YES in literal buckets!
  • Cold or flu-like upper respiratory symptoms – somewhat
  • Sweating – Yes
  • Piloerection (hair on skin standing on end) – no
  • Restless leg syndrome – yes
  • Agitation – oh yes
  • Abdominal cramping – mildly
  • Yawning – YES
  • Depression – YES
  • Dizziness – yes
  • Mood swings – yes
  • Fatigue – YES, YES, YES

I’m going through virtually all of these and the bastard is, a lot of them are ALSO side effects of the Pazopanib, double whammy time. Hard to tell whether the Paz or Tramadol withdrawal is the cause (often both I suspect)

I came down from 300mg a day to 0mg over a period of two weeks. The withdrawal only really hit me once I reached zero.

I am sorry Teresa, the hell is going to last for a few weeks yet – BUT I am still going to that Lanyon exhibition no matter what!

p.s. what must it be like for longer and higher doses – HARD!!!

——————————-

[Editor’s note: NOW the penny has dropped in massive sack loads]

Right now the nausea is really bad, already had my ritual; retching at 11am. I can’t face eating anything. Yesterday Teresa made me a cheese omelette and that was OK. For lunch today, it will be much the same as I can’t imagine anything else. I hope this is a withdrawal problem and the nausea goes back to what it was a week ago, horrible but manageable. Right now I feel so awful I cannot describe!

Not getting any work done, not getting anything done, I’m just an empty shell 🙁

Mon 12th

Down in the depths of misery

Tue 13th

Down in the depths of misery but signs of light at the end of the tunnel

Wed 14th

Off to Treliske for the scan results, this did not go well, I did an interim Blog on this on Thursday 15th, so no need to repeat it, suffice to say, after all that withdrawal we would have liked some good news, we didn’t get any.

Whilst at Treliske, Teresa wanted to visit “The Cove“, I really couldn’t be bothered, but I have to accept, that if Teresa wants help or support from anywhere I need to support her, so, we went. A fantastic oasis, steps from the Oncology unit (Sunrise Centre), lovely people, lots of information.

RANT

I (we) are truly pissed off with the fact that at our first visit to the Oncology unit, being told I had terminal cancer, NOBODY suggested we pop along to the Cove. They have so much information, are so warm and friendly, they had time to talk.

There was really no excuse for not doing that and I will complain to our “team” that they didn’t do this. Add that to how they behaved at my scan results today and we are starting to wonder what is going on in this Oncology unit and whether they are “fit for purpose”.

I hate saying this, I have a lot of time for the NHS and I understand how totally overloaded they are, but all it took was ONE SENTENCE and we would have been massively better off in terms of understanding.

RANT OFF – but not, because I am still pissed off, they actually have the resources, freely available and did not bother to tell us that they even existed!

Have I turned the withdrawal corner? Thu 14th

Well, I feel almost human, had a double dose of readybrek, well almost. Managed 2 mugs of tea (well almost). Feeling as close to human as I get.

Poo department is screwed up, the diarrhea seems to be quiet (last time and pill was yesterday morning), but there are no signs of any production. Probably because I’ve barely eaten since last Friday. But, even so, I do so hope we are not now back on laxatives to kick start it back to normal.

Keeping fluid intake up and hope nature will take its natural course without going wild again!

So, I feel better and I know that lifts Teresa. She is busy decorating our bathroom. Teresa loves decorating and it’s just nice to see her motivated and getting on. Just now she came into my office absolutely bubbling over with how wonderful these new sugar soap cloths that she got from Homebase yesterday are. It was so lovely seeing her happy, smiling face, especially after yesterday. Things may look grim, but that’s not a good enough reason to not be happy! Is it?

Poo time

Tramadol withdrawal on top of Pazopanib (whether it’s doing me any good or not) was buckets of diarrhea. Not being able to eat for days resulted in a very empty body. I never totally stopped eating and I tried to drink a minimum, but, …

Yesterday (Wednesday) I took the last diarrhea tablet, since then I’ve eaten pretty OK, but I didn’t drink much yesterday. So, I wondered if I was going to need a laxative to kick start my system.

Well, half an hour ago my body declared it might have some ideas in that direction and would I please attend the loo.

A hell of a lot of wind and I thought that’s it, but no, it still had aspirations but was now feeling like full on constipation. Well I thought I can do some Senna tonight, but no, it wanted out, so I took my time. In the end felt like passing a rough-hewed rock, but once gone, the rest was normal. Ok I thought, going to be some bleeding, hopefully not much (there was and no it wasn’t much) and hopefully my body has now re-established normal bowel processes.

[Editors Note, really Bean, just how naive are you, this is bottom stuff, much more fun to explore yet, …]

It’s gurgling away at the moment as if to say, well, now that’s cleared out of the way, there’s so much more I can do and I’m hoping there isn’t a flip from bunged to free flowing. From past experience, best to try and let it find its own equilibrium over a couple of days and avoid any drugs to aid it.

Hey ho, the joys of poo, they are always with you ????

Lethal Farts

Too soon, all that gurgling led to the terror of Lethal Farts, when my bottom has got to go, especially if “loose” (as people put it, oh so politely), I pass wind (fart). Now I have always been a farter, but usually they are quiet and not very deadly unlike my cat Jane, phew!

NOW, oh no, I rattle the windows and the smell, cuts straight through any gas mask, the cats run and hide, it is awful.

I apologise, well I couldn’t hide being guilty if I wanted to and that’s not in my nature anyway, I take responsibility. I just issue Defcon ONE warnings to Teresa.

They are awful, if I am ever in your presence and get “hit”, my apologies, I will admit “up front” but don’t feel embarrassed to challenge me, if you manage to not pass out first. Loud and Deadly, oh well, REALLY feel sorry for Teresa she shares it every day!

We are sharing a sleeper to and from London in a few weeks for me to see Peter Lanyon’s Centenary exhibition, the sleeper is a very small enclosed space and we are in it for 8 hours or so, she may not survive the journey if my bottom decides to be upset!

Sleeper tickets – Fri 16-Feb

When we went to the Cove on Wednesday Teresa made an appointment to see the Nutritionist to see if there was anything we were missing on my nausea and taste problems.

We had our appointment and discussion. Basically, we had got the right ideas, but we hadn’t understood that “dry mouth” and “no taste” were so closely linked, they are separate, some tastes are gone, but others disappear because there is just no saliver. So, lots of sauces, wet food, “acid” based tastes to help stimulate things.

From the Cove we went to Homebase for Teresa to get more stuff then onto Sainsburys Penzance to do some shopping. I didn’t stir from the car for either, just too exhausted. We then called into Penzance station to book our sleeper tickets for the Lanyon exhibition, staff very helpful and found the cheapest way of doing it (but not at all cheep). Really looking forward to going though I expect I am going to suffer all the way up, there, back and for the following couple of days. Still, it really is, for me, a once in a lifetime’s opportunity and not one I am going to miss!

Bottom department much the same as yesterday. Slow but fine then woooosh! On the upside the farts are less lethal though just as long and noisy!

Postscript

This week started off in the hell of Tramadol withdrawal, it is amazing how many people say “yes it’s an awful drug and withdrawal is terrible” and yet TOTAL silence from the medical profession on prescribing it and even more silence when they know you are coming off it.

It continued to get better until the scan results. The results themselves were not great but how the “renal cancer” team handled that session was appalling and left us feeling that we were NOT getting the best treatment for this cancer.

The weekend finished with me feeling a lot better physically, but Teresa and I very down over how my treatment is being managed by the Oncology Unit and realising we were going to have to raise this (firmly) with the consultant, not something we want to do, but feel we have no choice and that pisses us off.

The days of “paternalistic” medicine (Doctor knows best) are supposed to be long gone in these days of “Person Centred Care”, apparently, it’s not and that is distressing. Fingers crossed the letter we are writing to the consultant has good results, but we aren’t holding our breath.

The Bean, Pendeen, Fri 22-Apr-2018

 

Scanxiety, Tramadol withdrawal, a Cold and Hailey Windy Night – 3-Feb-2018

Cold and Windy – Sat 3-Feb-2018

Today I spent an hour and a half outside in the freezing cold wind, sitting on my padded cushion on an upturned recycling crate, loading logs into bags while Teresa stacked them in the woodstore. This is a total reversal of our usual roles. The woodstore desperately needs its roof replacing. I had the sheet of ply and roofing felt ready and waiting, just before accident; now the roof has deteriorated even further and is only half on, and a mess, and not doing the greatest job of keeping wood dry. So, I’ve propped it, used bits of wood and tarpaulins, and hope it will do. Even after today’s efforts, half of the original stack is still waiting to be moved. Goodness knows when we’ll manage it, but we will…

A Cold Hailey Windy Night – Sun 4-Feb-2018

As part of my Audio setup work, I have connected “Volumio” on a Raspberry PI to my (network) “Server” which has a lot of my music on it. Whilst doing this, I came across some recordings we made when a bunch of my friends and I, whilst at University in Sheffield, played in a “Folk Band” (Hailey Knight). Sadly, the quality of the recording is poor as it was originally done on a cassette tape, and has been transcribed many times and converted into mp3’s along the way.

The quality of the playing – well, that’s even more variable!

But it does remind me of the length of my life and the different things I have done and the things I have let slide (repeatedly), that I wished I hadn’t

These maudlin thoughts are not altogether a surprise. One becomes aware of one’s mortality as the years progress and even though in my 60’s I had every reason to think I should have another twenty years, that has changed.

Added to which, every three months I have I have a CT scan and my mortality (and the indications as to how close I am to the end of my life) is examined in careful detail, and I have precious little control or choice about any of it!

It is a sobering experience, not only for me but those around me who care about me. The frustrating thing is that I know I am so far from being alone in this, and yet it is only now it is happening to me, that I accept the reality of mortality. I really question how nice I am as a human being, being so unaware of it taking place all around me in the communities I live in a share with others. How selfish Bean, you only care when it’s you!

Tomorrow I have my first scan since diagnosis and in ten days’ time, the report on what it means (good, bad or just the same).

Scanxiety is a well-known phenomenon in this cancer world, especially in the cancer worlds like mine, where you can’t be “cured”, all they can do is slow it down. This blasted cancer engine is trying to drive me off the end of the cliff of life and all the time I’m worrying about how good the brakes are, are they overheating and failing, is this downhill plummet just too much for them. Will someone find me a better brake before I hit the bottom.

Scanxiety – it’s really no fun and I will have it until I die, no matter how near or far away that is!

Scan time – Mon 5-Feb

Today I had the scan at West Cornwall Hospital using their lovely new scanner which:

  • Is faster than those at Treliske
  • Has a lower X-Ray dosage than…
  • Has better image quality than…
  • Is operated by a dedicated West Cornwall Hospital team of radiographers

Go West Cornwall! Or, in a rather less Americanised approach, three cheers for West Cornwall Hospital, what a service right on our doorstep – brilliant.

The scan will be reported by the doctors in RCH Treliske and we will find out our news next Wednesday

Scan was the usual thing, cannula in left arm and contrast die injected just before the scan – funny taste and warm “glow” from head to crotch.

This is the new normal, more chemicals and X-rays every 3 months for as many years as I can squeeze out.

Back home and on to work. I was fine until 6.00 pm when I started to feel very odd, sort of light headed but not like fainting, but a bit…. Not sure why, lots of theories:

  • Effect of the contrast that is injected for the scan: it’s recommended to drink lots of fluids afterwards to flush it out, so I had a quick drink, not sure if it helped
  • Low blood sugar – about to have tea
  • Just tired (having been awake since 4.00 am)

I’m not sure, but once I’d had drink, had tea, settled into my sleeping position on the sofa, I felt a lot better, so whatever sorted it, it worked ????

Not thinking – Tue 6-Feb

Teresa is off to hairdresser, so, I am just getting on with work, nothing much to say really, the big event is still 8 days away, so, patience and try not to think about it. Shut up Bean, stop writing about it, stop thinking Bean, stop, …….. ????

Checked with nurses at cancer clinic. Yes, they did want blood tests, no the admin side hadn’t asked for them. Here is a list of what we need. Some problems booking in with the phlebotomist at the GP’s, but sorted for Thursday

Wed 7-Feb

Just work

Interesting – Thu 8-Feb

Been to Phlebotomist’s (a locum) at the GP’s, drawing the blood seemed fine, but the paperwork (computer) seemed to cause some complications, think we’ll check on Monday that the clinic has received the test results they need. Better belt and braces!

Day started nauseous and still progressing well, 15 mins to chocolate time, staying very still!

This morning NO Tramadol, that is I am Tramadol free

[Editor’s note, how little do you understand how ominous that statement is Bean, just you wait, …].

Will stick to 1gm Paracetamol 4 times a day and see if I am ok without the Tramadol. This is a test, but it would be great if I could get Tramadol out of my life and then start weening myself off the paracetamol.

It’s not just about reducing the drugs, it’s that I CAN reduce them because the pain is reducing and the only way I can confirm it is to reduce the pain killers till the pain returns (or doesn’t). Still plenty of pain killers in the store if I need to take some Tramadol!

Communication problems and a bloody nose – Fri 9-Feb

Although the cancer thing makes both of us less “able” because it is pulling us both down in our own ways, we dare not forget that this is a “mixed marriage“, the blend of autism and neurotypicalism in a relationship.

Because I’ve had 60 years of being Autistic in an NT world and have tried very hard to fit into the NT world, I’ve had a lot of practice. Teresa of course doesn’t have anything like the same experience. So, I try very hard to meet her more than half way. Trouble is, at times I get so down I can’t even reach halfway and she is left floundering not knowing how to reach me because I am in an alien place. When that happens, as it has over the last few days, we have problems.

[Editor’s note, at this time I had no idea what the absence of Tramadol was doing to me, in hindsight, these entries make more sense to us.]

I got very upset this morning and blew my nose a lot and suddenly the tissue was scarlet, every blow another great splash. Not a nose bleed, it wasn’t “free running”.

Pretty sure it’s yet one more of those side effects, chatted on the Kidney Cancer Facebook page and indeed, not at all a surprise. Stopped blowing and when I did was very gentle and that problem at least, eased off.

Went to bed and felt awful, don’t know why, maybe the emotional state Teresa and I are in, withdrawal from the Tramadol (been free for two days) or just the Paz stepping up a gear on the side effects department.

[Editor’s note, the penny was just starting to drop at this point]

So, bleeding nose, diarrhoea starts, I feel really tense in my back – from past experience that’s a stress thing, but so bad that laying on it has me bouncing around to try and stop the feeling. It’s not pain, I wish I could describe it – more like an intense version of that feeling you get in your back on a dark night when you think someone is following you, it just won’t go away and makes sleep impossible, as does the increased pain.

In the end gave up and had one 50mg Tramadol. Dulled the pain but did nothing for the back. A VERY, VERY long night followed.

Postscript

As you will see from the various [Editors] sections I have added above (isn’t hindsight a wonderful thing?), we were starting to get an idea that finally stopping the Tramadol might be causing problems. From here on things went downhill very rapidly and hit a very low bottom. At the time of editing, over a week later, the worst is over, but I would not wish this experience on my worst enemy – and who did I inflict it on? Yup, Teresa, the person who least deserves it. She had to cope with my paranoia, my not eating, drinking, looking (and being) so ill she wanted to call 999. Selfishly, I thought it was tough for me, I cannot understand what it was like for her. Yet we made it, knowledge is power and once we understood WHY, we worked as a team and got through it. I could go on and on singing her praises, but I hope by now you know how much I love her and appreciate all she does and words (my words) are a very poor way of expressing it. I hope, in the flesh, I manage better.

The Bean, recovering slowly, Pendeen, 17-Feb-2018

There isn’t always a happy ending – 15-Feb-2018

This is an intermediate post, last weeks and indeed this weeks are still gestating, but since all I did yesterday was update Facebook, I thought I’d update here for those who can’t see my FB posts:

Yesterday we went to the Sunrise centre for the results of my 3 month scan. Not good, not yet bad, indeed rather confusing. We didn’t see the consultant and his oppo seemed rather confused.

So, best as I can establish, primary kidney tumour unchanged, some smaller mets shrunk, shoulder one (the largest by far) grown. So, looks like the Pazopanib is not working for me. Another scan in 6 weeks’ time (instead of 3 months) and reviewed on 4th April. If that is still negative then it’s onto drug 2 (in a list that only has 3 or 4 drugs and the rest are more unpleasant) to see if that works better.

The problem is this shoulder met and unfortunately I can now start to feel some discomfort from it which will only get worse.

So, no my world hasn’t yet ended, on the other hand it doesn’t look like there’s going to be a fairy story ending either ☹

I am, at the moment, pain killer free (from the broken bones), however the withdrawal symptoms from the Tramadol are horrendous and I have been very poorly for a week, yesterday I started to feel human and today is my first day in a week that I really feel like me.

I am scared, of course I am, I am upset, of course I am, ditto in bucket and spades for Teresa. But we are strong together, we are fighters not victims and we haven’t given up, not even close. BUT we also have to be realistic. It is not an easy tightrope to walk between realism and hope and even writing these blogs can trigger those tears and yet without sharing these hopes and fears nobody knows and I think it matters that cancer, especially the non treatable sort, must not be allowed to hide away in the shadows. 

Yes, my prognosis is crap, but there are many of us in the same boat (and worse), we know that you care, but in the end, this is our journey, in the final analysis it is my journey, just like it was Len’s, Jo’s and so many others. I don’t feel alone and I don’t want anyone to feel alone so I will continue to drone on with talk of fatigue and nausea, poo and depression and the good bits too because, for me and people in my boat, they are just as normal as popping down to the North (which I don’t bother with much because I can’t taste the beer, now that IS a loss 🙂 

Postscript

Yes, we got those results on Valentines day, that could have been a disaster, however Teresa and I have a policy of celebrating NonV day (Non Valentines Day). We pick a day, close to, but not the day and so not “commercialized to hell” and celebrate how we feel about each other without any of that commercial stuff clouding the issue.

Normally we’d have a hotel and meal booked well in advance, for some reason we haven’t managed that yet this year, but we will find a place to have a meal, I might even be able a bit to taste some of the food, but I doubt it! We WILL find a way, even if I just sit there eating chocolate!

Bean Thursday 15-Feb-2018

Non-Union, more bad nights and selfishness, blood pressure rising – 29-Jan-2018

 

This is NOT a picture of MY “non-union” collar bone, but it gives a sense of what it looks like (the bit circled in red) 

What an awful night – Sat 27-Jan-2018 

This morning I woke around 3.00 am, and that was that. I got up at around 4.00 am and faffed in my office, but I couldn’t sleep and I really couldn’t work. More faffing until 7:30am, then I crashed back on the sofa till Teresa came down around 9:30. She was rather worried to find me still asleep and, I gather, had to check I was still breathing! How scary that must have been for her and, I gather, not the first time she’s checked to see if I’m sleeping or dead – I’ve said many times, it is harder for those that care than those with cancer and this is a perfect example of that. If I’d been dead, I wouldn’t be worrying about it, but she would, it’s a horrible thought and I can guarantee she will cry when she edits this section! 

After all that, it took me a long time to get going. I thought about trying to work, but realised I needed a down day and so I had a totally not-work day and actually quite enjoyed having a day off. 

I suspect my body was just reacting to our long and busy Friday (no matter, we really enjoyed ourselves). 

I crashed again around 7:30pm and … 

A great night’s sleep – Sunday 28-Jan-2018 

I woke Sunday morning just before my pills alarm went off and although I still feel I could sleep for another 12 hours, I do feel awake enough to write the blog entries from Friday and Saturday and try and get some work done and so off to work I go, Hi-ho, Hi-ho, … 

 

Oh well, best laid plans… 

I made it as far as 2:30 pm, then crashed till tea time, stayed awake for nearly an hour after tea, then that was it for the rest of the night. 

It seems the only time I have any energy is in the mornings when I am fighting the exhaustion, but I am able to cope. In the afternoons, if I have to go anywhere I can sometimes push through it, but I pay a high price for a day or two. 

It just isn’t fair, all I was doing was driving to work on a normal Friday morning and my world turns upside down. Never mind the accident, the side effects of the cancer drugs are such that whilst they may be (we will know after February’s scan) slowing down the growth of the cancer, they are what is limiting my life. Oh well, better the devil you know I guess, and I can’t say I want to feel the full effects of the cancer anytime soon! 

Back to work – Monday 29-Jan 

After another long night of sleep, I am awake enough to get back to work, but it’s a bad day for nausea and I need to stay sat at my desk, very still, to avoid triggering nausea waves, and in general I’m just feeling lousy. I am right fed up I can tell you, and despite medicinal chocolate and getting work done, my days have become a pattern of trying to work, then collapsing, blah, … 

Selfish Day – Tuesday 30-Jan 

I did not shine today, whatever else is going on I remain autistic and along with that goes an inability to see how what I want might not be what someone else wants or needs (also known as Theory of Mind). Well this morning I displayed this in spades. 

When I was just fighting the broken bones, I was enjoying having a salmon salad for lunch, as the Pazopanib started to take hold, I went off it. Today I decided I needed to try it again as I am concerned I am just not eating very well and whilst I can excuse that by saying “well anything is better than nothing”, I felt that anything I could do to help my body the better. So far, so good, excellent motivation. We had some salmon in the freezer but not the salad bits, so I popped over the road to our village shop but unfortunately, they had everything but the spring onions. I decided the salad was impossible without them (really Bean????) and so we would need to go to Sainsburys. I returned home and told Teresa that I wanted to go to Sainsburys, this morning, now! 

I had done the right thing and gone to the shop on my own and not asked Teresa to go, but even though she said to me – we can call in after I take you to work tomorrow, that made no sense to me because I wanted it TODAY. 

Before all this, I had already insisted to Teresa that we really needed to get on and move the rest of the wood, so she had got dressed in scruffy clothes for wood-moving. Now she had to change again into something presentable for Sainsbury’s. 

Anyway, she got herself sorted and just before we left the house, it hit me what a selfish bastard I was being, not showing any interest at all in what she wanted or needed to do. That had me in tears, Teresa feeling guilty for me being upset and, on that note, off we went. 

It was a typical foggy day in West Penwith, all the way down to Newbridge – Teresa hates driving in the fog. 

But she did it, we got what I wanted. I forgot the cucumber but that wasn’t a problem (nor was the spring onion) so we got home, me very upset, Teresa upset, … 

I duly made the salad, it tasted like cardboard, and I’d not have it again. 

So, I had to do a lot of self-reflection today, realising that I was becoming increasingly selfish. I know it’s part of being autistic and I have to consciously make myself remember it’s what I do without thinking, but I’ve been feeling increasingly sorry for myself of late and that resulted in me not being aware enough. 

So, I have neglected my wife and my daughter and got too wrapped up in my own worries. 

Finger out time Bean, you need to remember to be more aware. 

So, I am trying harder but also feel very ashamed of myself at the same time. One of the hard parts about being autistic and in relationship with NTs (Neurotypicals) is having to constantly remember that they don’t understand. If Teresa had been rude (in her terms) and told me that I was being unreasonable, chances are I would have stopped, thought, realised and agreed. Instead she was nice and did it because I asked and she wants to do all she can to help me. So, we are both to blame 

  • Me for not spotting my autistic nature was running the show 
  • Her for being too NT in her response to me 

That’s nowt to do with accidents, drugs or cancer, it’s just one of the problems of living in a mixed marriage (as we call it), it just gets exaggerated when you throw in everything else that has been happening in our lives. 

Oh well, try harder Bean 

Blood Pressure rising – Wednesday 31-Jan 

We regularly monitor my blood pressure as not only do I have high blood pressure (easily controlled)) but the Pazopanib pushes it up. Over the last few days it has gone up. The Tramadol (an artificial opioid) pushes blood pressure down, so the fact that I’ve reduced it from 300mg a day to 100mg a day has pushed up the BP. This morning we visited my GP and agreed an increase in my basic BP drug (Candesartan) from 8mg in the morning to 8mg in the morning and the same again in the evening, keeping the others as they are. 

After that, it was off to work for a few hours – Teresa driving of course. We are both still very fragile after yesterday and it’s going to take some effort to bring things back to a better place. My daughter has also been getting a poor deal from me, so I need to take more care of her too. 

By the time I got back from work and spent some time with daughter, I felt that we three were on a better footing, I just need to keep my eye on the ball. 

Having multiple broken bones and cancer does NOT excuse me from being a human being, just as being autistic didn’t, even though it might be harder when they are added together (and it is) it’s no excuse, so Bean is trying harder, … 

Just an ordinary day – Thursday 1-Feb 

Managed a full day’s work, what more to say? Woo-hoo… 

A day out, the new norm – Friday 2-Feb 

Asked Teresa when we were next shopping, I expected her to say the weekend, she didn’t; I asked when, as there was some food stuff I wanted. She said she’d do it over the weekend and combine it with a trip to Truro she wanted to do. Five minutes later, in she comes to my office, apologising for breaking the autism rule (no sudden changes in plans) to say, if I was up for it, she wanted to go today so she wasn’t out all day Saturday as she was going to a concert the same evening (Richard Digance). After my behaviour on Tuesday I could hardly say no, indeed didn’t want to, and so off we went and a long day later got home just after 3.00 pm. I felt wrecked, but after a half hour flop I went to my office and worked through to 6.00 pm 

It seems that I need to get my head around the new normal 

Old                New 

Normal         Tired 

Tired             Exhausted – unable to think 

Exhausted    I never want to be at this one! 

Postscript 

Nothing stays the same. The broken bones heal, or in the case of the collarbone, settle down, the cancer meds ramp up their side effects. I do wish I could work out what my new normal is, but I never can, even if it feels the same, every 3 months those scans will reveal the truth. 

Oh well, I think I’ve got my head clearer about separating my anxieties from my responsibilities as a husband and father. Not always easy, and some days not possible – those are the days I need those around me to understand. I guess they will if I do better most of the time, fingers crossed 

The Bean, Pendeen, 10-Feb-2018 

 

Nausea, waxing, sleep, walking in the air, Pongo time – 20-Jan-2018

Have you noticed the common heme in the names of these blogs?

Nausea rules 🙁 

Sat 20-Jan 

This morning we had a (very welcome) visitor. Teresa made coffee (mint tea for me) and we had a good catch-up. It did, however, mean I didn’t get as much done as I would like and by the afternoon I was very tired, so really the afternoon was about three hours of salaried work and the rest of the afternoon and evening crashed out. 

Nausea rules – Sun 21-Jan 

Had breakfast around 6am and spent virtually all morning feeling nauseous. At 9:30 Teresa suggested I take my anti-nausea pill then rather than at 10am with cancer pills. It did help a bit but by 11.00 am I was desperate to eat some chocolate.

I had been working in my own office upstairs and felt quite faint at times. 

I am starting to wonder whether there is a blood sugar issue which the chocolate helps fix. I have noticed that eating more for breakfast makes nausea less, the problem being that I just can’t face that much food. I wonder whether I’m going to have to bite the bullet and try harder to eat more for breakfast and see if there’s a “hunger” problem. Given how I lose weight I have to wonder if one side effect of the meds is reducing how effectively I am getting nutrition out of my food – must ask the consultant? 

Like yesterday, I reached 4:30pm having managed a full day’s work but was then exhausted and all I could do was crash. 

I have to say that I am getting fed up with being exhausted all the time and yet if I don’t “work” then I feel like a waste of space and I would hate being asleep all day even more. So, I have to push myself and live with the feeling of being tired and keep on going till I recognise the “too tired” point, usually too late hence the crashing out. Can’t be a lot of fun for Teresa or my daughter. I occupy our sofa 24/7 and although I try to leave the sitting room free for them during daylight hours, they never get the evening to themselves. 

A normal (ish) day – Mon 22-Jan-2018 

Glad to say I had a reasonably good night. I’ve changed the angle of my back rest for sleeping so it’s at its shallowest angle (as opposed to one notch higher) and although getting up is a lot harder, I seem to sleep easier and longer (albeit still waking every couple of hours) and get back to sleep quicker. Oh well, it’s working this week, the way my body is it will stop working next week, but fingers crossed. Bit like cats and cat food…. 

I was up with breakfast around 6:30am and at my desk at 7:20am, so fingers crossed for a good day’s work. Right, pain killers alarm just going off, take the drugs and back to work. 

 

In the event, it wasn’t a bad day, but I had slept for a long time the night before. 

Successful waxing – Tue 23-Jan-2018 

Today I had a 9.00 am appointment for waxing legs and back. My first attempt after the accident was only three or four weeks after the accident and we didn’t achieve much. The front of my legs were fine but because I couldn’t turn over and was in so much pain, the backs were done by me trying to twist my legs enough to reach. It was ok, but not great. As compensation I had a full pedicure and for the last two months I’ve had some lovely dark red nail varnish on my toes. 

Today however, I was able to lie on my tummy for long enough to do the back of my legs and a lot of my back, but I was uncomfortable with anything done near the broken ribs/collarbone. So, I got off the table – a little ungainly as I had to engineer a controlled fall, turning around until my feet came off and I ended up on my knees beside the bed, then using my stick until I could stand up. I then sat on the bed and it was easy to reach my back, I could support the shoulder and it was a good job done. The hair was longer than we’d have liked back there, I should have trimmed it a few weeks ago, ready. However, I am not asking for Teresa’s help for keeping my body hair under control; much as it distresses me, she has far too many practical things I ask her for, something “frivolous” (which it isn’t to me, but I realise in the great scheme of things, …), so I am now a funny patchwork of a lot and a little hair. Oh well, step by step. 

Then I went to the doctors’ to discuss how I was reducing my pain meds. Unfortunately, they were running an hour late so I ended up sitting in the waiting room for an hour and a half. 

The doctor and I agreed that reducing the Tramadol was a good thing if the pain was Ok and agreed to the drop of 150mg twice a day to 100mg twice a day and gave me a prescription for 50mg pills so that I could take 100mg as two 50mg pills and then, when it felt right, start to reduce 100mg down to 50mg. Yeah! 

As I got up this morning there was a bit on BBC breakfast TV saying that there was a problem in the NHS of addiction including to prescription pain meds, which just re-enforces my determination to get off the Tramadol (a synthetic opioid) as soon as is reasonable. 

There are often articles in the news about “famous” (well known) people who have cancer and that always seems to be “worthy” newsworthy, Cancer is so common, but it doesn’t feel real to me when it’s someone I see on TV or read about compared to someone I know. I do know that the moment you start talking about cancer, you find that virtually everyone you know has been touched by it and often you didn’t know, or really understand how it affected them.

Sometimes it seems to feel that if someone has  cancer then they are either ‘cured’ or they die, yet it is the living with it that is the drop by drop torture. The fact is, it is never truly cured. Sometimes it goes away not to return in their lifetime, but often it seems to hide away and sneaks back. That is certainly the case with Renal Cancer which has a habit of being considered “cured” when it’s only on the kidney and the kidney is removed; however, often years later it is discovered that some of those pesky cancer cells had sneaked out and have started to grow elsewhere in the body. In my case it’s already all over the place and no chance of cure so at least I know where I stand and there’s no false hope 🙁 

I suspect (with absolutely no clinical evidence) that a lot more of us are walking around with cancer, not realising, and with luck never knowing as we got to our natural end of life before it got a good hold. Unfortunately, for some of us it does rear its head and we have to deal with it, but whilst it’s nothing at all like the flu, in a sense it is as normal a part of being alive. Flu happens because the body is susceptible to virus’s and the immune system can struggle to fight it off (that’s why we have vaccinations). Cancer happens because the immune system fails to fight a cell mutation. Sometimes you are lucky and sometimes not, but our bodies are not machines and they are constantly under attack, sometimes I wonder whether we appreciate just how well our bodies do cope with what they are subjected in the effort to and keep us alive? 

Hmmm, never saw that particular “rant”(is it a rant?) coming, but come it did. 

 

What am I fighting?

Anyway, waxing is now back on the agenda, self-washing and dressing are go, showering is almost go, shaving some parts of me is still in the queue, but I am getting back to normal and, of course, none of that is anything to do with cancer and all to do with the accident – hard to remember sometimes but today I am fighting, in order 

  1. The consequences of the accident – this dominates 
  2. The side effects of the cancer drugs – not insignificant but manageable 
  3. Renal cancer – this is, as far as I can tell, having virtually no impact on me at all at the moment other than needing to take drugs to delay the time at which it will affect my quality of life. 

I need to remember this, we (Teresa and I) constantly forget that a lot of my battle is with the consequences of the accident and the treatment for the cancer, not for the cancer itself, which will, I am quite sure, make its impact felt, just not, I hope, for some years yet 🙂 

Hmmm, just a quick thought, I may now be regretting this as my collar bone is reminding me it’s there, but earlier on I instinctively pulled down my skirt (it’s a maxi-pencil so down not up!) and knickers for the loo with BOTH hands. For the last three months that’s been a single-handed job. Ditto pulling them both back up. This looks like a bit more progress – well it would, were it not for the fact that an hour later there are more twinges from the collar bone than usual and so it may be protesting 

Time will tell. Ten minutes to chocolate time. About an hour before I took the cancer pills I had to ask Teresa to grab the sick bowl, but in the end, I managed to control the nausea. Right now, it’s feeling tough to manage. Fingers crossed I get through the next ten minutes and the choc has time to work? 

Oh well, back to work. 

Sleep, please let me sleep – Wednesday 24-Jan 

Just a work day, but I am so tired I can’t think straight. It got worse as the day went on and by 3:40pm that was it and I collapsed on the sofa. I didn’t actually sleep till around 8pm, after Teresa had left to go to Penzance Folk Club (yeah, she’s starting to go out, makes me so happy!!!) and although I did my usual odd wake, I slept for around 11 hours 

Walking in the air – Thursday 25-Jan 

A slow start to the day, still very tired but I eventually got moving and managed to finish breakfast by the 8.00 am cut-off and had pain killers. 

In yesterday’s notes I forgot that after I gave up work (around 3:40pm), I went into the sitting room and thought “I must be able to play my piano, given the movement I am getting on the right-hand side”, so I sat down and played “Walking in the Air”. Now, I started to learn the piano some 25 years ago and reached Grade 3 (or 4) before family life and depression got in the way. That piano has followed me, gathering dust but I recently (pre-accident) cleared access to it meaning to try learning again. Yesterday I felt that I’d like to have a go. Walking in the Air was one of the few tunes I could basically remember (motor memory) so I didn’t have to sight read at any great speed). I’d like to get some music back into whatever life I have left. I can’t play my normal saxes due to shoulder issues but it looks like I can try the piano and, when we clear access, maybe my big Contra Bass Sax because that is played on a stand, with me either standing alongside or sitting on a high stool. 

Fingers crossed I can get some music back into my life? 

12 hours sleep and then Pongo time – Fri 26-Jan-2018 

Stopped work at 4:40 pm yesterday as I was so tired and slept on the sofa, had tea and crashed again, I woke 12 hours later around 7am feeling awful but I did manage to pick up once I got moving. 

We (Teresa and I) have been working out how we can still do folk festivals when I can’t be certain I can drive or I will be too tired to drive. The caravan needs a hefty vehicle for towing it as well as a certain amount of heavy lift to sort out gas cylinders, hitching, etc. all of which is too large a load to put on Teresa with me watching in frustration, and is certainly too much for her to do on her own once I’m gone. So, we’ve been considering the “Campervan” option. 

Over the last 25 years I have had 

  • Landrover plus big caravan 
  • Big Motor Home 
  • Campervan 
  • Campervan plus little caravan 
  • Campervan plus big caravan 
  • Landrover plus big caravan 
  • Landrover plus medium caravan 

So, I’m pretty clued up to the strengths and weaknesses of the options and what we need for a festival. The practical compromise is that some sort of camper is enough, smaller, less flexible, but easier to manage and enough for a few days at a festival with loads of facilities. 

The classic VW Van is far too expensive, we wanted something more financially reasonable (i.e. something we could afford with the insurance money from Blossom). It needs:

  • to provide minimal sleeping and water facilities.
  • an automatic because of the shoulder
  • because every time I haven’t had four wheel drive I have got stuck on a muddy festival field, that’s what I wanted for my own piece of mind
  • air conditioning – both of us want this!

There is really only one simple way to do all of that on our budget and with me having most of my DIY skills limited and hence unable to do any conversion work myself:

“Pongo”

As Teresa calls them, in reality it’s a Mazda Bongo, a Japanese People Carrier not for sale in Europe but frequently imported and converted into a low-cost camper, it has it’s own niche market below the VW Van. Unfortunately, the Bongo market is dead as the manufacturer stopped making them some years ago. Fortunately, there are alternatives and our new steed is a Toyota Alphard, another Japanese people carrier not sold in Europe but big enough to adapt. Not a pretty vehicle (to some), but one that will do the job at a price we can manage. 

I can’t drive yet, but long-term this is Teresa’s van, short term it’s ours and will be something I can drive on my own (with minimal adaptation). So, on Friday the weather was nice, and I felt like a trip out, so off we went to a place east of Newquay. We found what we wanted, did the deal and once the UK registration paperwork is sorted (6-8 weeks) we will have our new vehicle, which I hope I will be able to drive by then. Job done.  

In order for me to be able to drive it, I need to sort two problems: 

  1. Be off the Tramadol. I was already down to 100mg twice a day. Today I moved to 50mg twice a day, topped up by paracetamol 4 times a day and hopefully by the time the Phoenix (Teresa’s current name for the beast) is ready I will be able to drive it. 
  1. Be physically able. The only restriction at the moment is the broken collar bone that refuses to knit. This means I can’t use my right arm for anything more than holding a sheet of paper! Fortunately, an automatic plus a knob on the steering wheel should be all I need to drive, using Popeye for all the hard work. I will need to have the medics approve this, and then inform DVLC and the insurance company. In the past this hasn’t been a very formal process, when I broke my leg everyone said it’s OK if I think it is! 

The Phoenix is not a city car, too big for that, but for me to go the doctor or such on my own, I can use disabled parking bays and I will manage. 

Our only challenge will be to get to Columb Major to collect it, so we can both drive it home. For me it will be nearly 5 months since I last drove, so I wouldn’t plan to drive it all the way. Anyway, there would be mutiny if Teresa didn’t get a go, so, we have no idea how we will make that work yet, but a plan for the future. 

It might seem odd organising a car before I can drive, and if it was just for me it would be, but it isn’t and it is motivation for me to have a date to aim for. 

Mobile Chair 

Having my own personal sword of Damocles, I am focused on making every day work. Now that the broken bones pain is easing off I am left with the long-term problem of being able to sit comfortably and deal with getting exhausted so easily. Sitting down requires me to have a chair back that is shaped and padded, exactly how I need it and a VERY padded seat to protect the coccyx. In addition, whilst I can walk, I suffer increasingly from sore feet (side effect of the Pazopanib) and painful hip and ankle (consequences of the broken leg five years ago).  

I don’t see myself as wheelchair fodder and yet …

When we go out I get very tired and then Teresa has to fetch the car and there isn’t a café, restaurant, pub, shop, public space, …, that has seats that don’t leave me in severe back pain within 10 minutes.

So, I am having to contemplate an electric wheelchair.  

Blah, I hate this idea, but I need to be able to sit in comfort and, in particular, rest and pace myself when we are out. 

For example, at the end of Feb, I am due to go to a concert with Teresa at the Acorn in Penzance and I wasn’t looking forward to the seats and how uncomfortable I will be – even though I will be taking my extra thick padded cushion, it’s the seat backs that will be the problem. Indeed, when we went to the Honeypot recently, Teresa had to go through half the chairs in the café to find me one that was acceptable for my back (not good for my bottom, but I survived for half an hour – that was a good day). 

So, you may see me whizzing around in a wheelchair, or you may see me walking: the point is, it’s not inconsistent. On a good day I can (and need to) do some walking, on a bad day I just can’t move, I am too tired to put one foot in front of the other or need my “mobile” comfy chair.

Funny how your perspective on life changes. Three months ago, I was travelling around quite happily in my hefty Landover. Now I’m talking about adapted cars and electric wheelchairs and yet I don’t “feel” I’m disabled, in my head I’m still the me that I remember before the accident, and yet I have to be realistic about what I can or can’t do.  

A manual wheelchair is a no because I’m not going to be dependent on others to wheel me about and I’ve used a manual wheelchair on my own – they are very hard work with two arms (never mind just one) on anything other than perfectly flat and level and we don’t have that down here! 

Oh well, if it helps, do it Bean and to heck with what it looks like or whether people think you are a fraud or not, you know what you need to do. 

 

The North Again 

Getting back from choosing the campervan I went straight to the North and had a pleasant few hours, mainly J2O’s and two half pints of Proper Job (still tastes nice even with screwed up taste buds), though I suspect that even though the second was two hours after the first, it was probably still too much for me ????. Teresa fetched me home at 7:30pm and, as I expected, I crashed except … 

… I can’t leave you hanging there for another week or so, so suffice to say, I woke around 3am on Saturday morning and that was that for sleep. The rest of the day was not great, spent mainly in zombie mode, but more on that next week.  

Postscript 

Sometimes I pay a very high price for having a good day and I know some of you out there know this problem very well. 

There’s a choice, you give up and do nothing or you accept there is a price and enjoy life. It’s not nearly as easy as it sounds and in particular it’s nowhere near as easy to do as it might seem to others. Other people only see me having a good time, laughing, joking about the cancer, it’s only Teresa that gets to see me wiped out or in tears. 

Same with the wheelchair, no two days are the same and sometimes it will be essential and others not needed.  

I know that I have been guilty in the past of sometimes wondering (judging) others for not being consistently disabled (however you define it). Now I’m in that boat myself I am rather more aware of how variable it can be and I have to confess to being somewhat ashamed for some of my feelings in the past (never spoken only thought, but even so, …) 

 The Bean, at home 27-Jan-2018