Month: March 2018

Lanyon, Pongo, Depression and Poo – 03-23 Mar 2018

Friday 23rd March 2018

This is a long blog and Teresa and I debated releasing it in parts, but the fact is, it is all of a whole and in particular it maps my trajectory into a state of depression, and my rise out of it again.

So, if you want to go straight to the relevant areas, click below:

Hmmm, this blog covers three weeks. I’ve been through emotional hell during that time, but now seem to be over the worst so, today, I am making a superhuman effort to get this blog completed and released.

As you read, I suspect to you it won’t seem so bad. It doesn’t to me as I do my multiple-pass edits, but the hell bits are rarely in here because I lack the language skills to show the emotion that underlies my writing. Factual writing is difficult for me, but doable; writing that reaches the emotions is a closed book, sometimes I may succeed but I will never know that I did or how I did, it feels to me like random chance. Still, here we go. I’ve drawn together three weeks’ worth of notes (and lack of notes) and am now taking a massive run-up, so hold on tight, …

Poo tales, well what do you expect? – Sat 3-Mar-2018

This morning, poo is OK for texture and no blood

This afternoon, poo is diarrhoea but no blood

So, is MY diagnosis right, i.e. I’ve just got a damaged blood vessel which is healing slowly? If so, does it need to be cauterised? How would that work with Paz? How do I feel about them operating “up my bum”? Pretty lousy, but I know there will be much worse done to me as the cancer progresses. I’d just rather not start quite yet ???? 

On the “slightly” positive side, it’s our postponed Fracture Clinic appointment on Monday when I hope to get permission to drive, which means we can then chase up the “Pongo” (camper). It will be nice to be independently mobile again!

I am currently working away in my office and listening to “The best seventies album in the world”, pure nostalgia! If you have to ask, then you weren’t there ????.

Fingers crossed – Sun 4-Mar-2018

First poo quite normal, keeping those fingers very firmly crossed.

Early afternoon, Poo is diarrhoea but no blood, is this a pattern?

This morning a cupboard collapsed in the kitchen and needed a make-do-and-mend style repair to keep it alive until the kitchen is redone. I dug a number of brackets and screws out of the shed and got the work done, although it quite knocked me out.

This afternoon my daughter needed bread for sandwiches for work. Everywhere is sold out because of the snow. I don’t know how far away commercial bread is made, but it must be out of Cornwall to not get here by now.

So, she got some strong bread flour and dried yeast and I cleaned up my bread maker and tried to remember the recipe I used when the children were young. Only last week daughter was saying how they used to come home from school just as the white bread was coming out of the bread maker and they would just eats slices of the stuff. Hopefully this one stands up to the test, however since I didn’t put the yeast in first (so it’s buried by the flour and away from the salt) it may be a dud and need redoing. Still, yet another bit of nostalgia. (Update, it was perfect – yeah!)

However, the emotional stress of sorting it out was the final straw and I retired to bed and had a sleep. The only reason I am here in my office now (9.00 pm) is that I needed a drink and can’t drink when laying down, so I’m having some chocolate while waiting for the mug of mint tea to cool down enough to drink, but not too much so it makes me feel sick.

Weekends are sensitive in the nausea department because I have to pace my drugs.  Ondansetron is an anti-nausea drug specifically for people with chemo. Since the effects of drugs like Paz are much the same as chemo, it is wonderfully effective, however it has two down sides. First, it is expensive (however my GP is happy to prescribe it) and second, the brain gets used to it and it stops working after a week or so and you need to take a week off for it to work again. So, I am trying it 5 days on and 2 off (taking the Domperidone for those two days) to see if I can keep it working when I need to most. Though, since I work 7 days a week, I’m not sure I need to demarcate it across the weekend really, but it’s easier to get my head around, so, …

Good news for the collar bone and tasting food – Mon 5-Mar-2018

Today was my delayed appointment with the fracture clinic at 10:20 this morning, so over to Treliske we went. Long wait (almost an hour), in hindsight, yes of course the first fracture clinic after all that snow was busy with broken bones!!! The problem was the waiting area was full of people and I really don’t handle people-full environments, especially people talking and making noise. I had to walk the corridors of the hospital and try to “chill”. I didn’t really succeed, however neither did I scream, hit anyone or break anything! The latter two don’t routinely happen, though they did when I was younger, though again not the hitting people, I’ve never done that, but I’ve felt immense internal pressure to do so. Breaking things, yes, all the time I am afraid. Nowadays I understand the problem and take myself out of the place of stress, no matter the consequences in people’s attitudes to me. Teresa understands and defends me when needed but she shouldn’t have to. Why can’t hospitals (and so many places) understand that for some of us, a standard waiting room is way beyond torture, it is abuse.

We saw the consultant, Mr Butler, strictly speaking Lt Colonel Butler, who happens to be the same consultant that operated on my smashed-up ankle 5 years ago. Interesting chap, often parades the corridors of Treliske in camouflage gear but on this occasion was in civvies so we didn’t recognise him!

Anyway, that aside, he was wonderful.

First there were definite signs of bone growth which corresponds to the lack of pain and increased movement I am getting, so maybe I have avoided a permanently broken collar bone after all. However, is this because Paz is not working? Is it good news or bad news? Why does the worry of cancer have to stick its oar in all the time? Of course, we already know the drug is probably not working, especially on the shoulder tumour, we’re just waiting for confirmation. So, the collar bone news IS good news, it’s just the other thoughts are always hiding in there ☹. Lt.Col. Butler was also happy for me to start driving, so now I need to chat to the insurance company to see if they are happy – not just the collar bone but ALSO the cancer! Also, will they insure the Japanese import I will be driving? I will have to talk to the DVLA as well, blah so much to sort out. So many opportunities for yet more people to control my life, as if the bloody cancer wasn’t enough.

We then went off to Dunelm in Truro to get some bits for Teresa for her newly decorated bathroom and then we went to the office in Penryn. As usual, I expected to be there for half an hour and it was more like two and a half which meant Teresa hanging around a bit. Oh well.

It’s not just daughter’s bread that’s triggering nostalgia. I continue to rack my memory of tastes over the years, looking for things that I think could still work. One memory is of the Chinese takeaway in Haddenham (Cambridgeshire, near Ely). My son and I used to get a meal from there every couple of weeks and we’d stretched it across 2 or 3 days. We liked it and both being autistics, we repeated the pattern (and had the same thing) for years! I used to have a chicken Chow Mein and chicken curry and my memory is that both were soft enough and of the right flavour (probably thanks to Monosodium Glutamate) that I felt they could work with my current ineffective taste buds. So, on the principal that a Chinese takeaway in St Just is probably not that different from one in East Anglia, I asked Teresa if we could do an experiment. She was wonderful and agreed without hesitation. So, after calling at the station in Penzance to get a car park ticket and confirm our trains for going up to the exhibition in London, we called in to St Just shortly after the takeaway opened at 5pm. 

Teresa also decided on a Prawn Curry.

Once we got home I took a forkful of Chow Mein and my mouth exploded with flavour. It was EXACTLY as I remembered it and was perfect. I’ve not really enjoyed food for so long, it was brilliant. The curry was good but on the “gloopy” side (as Teresa puts it), but was still as I remembered it and worked well too. I have enough left for a couple more meals and am over the moon. Clearly this cannot be my diet, but maybe once a month as a treat and, more to the point, maybe a way of having our Non-V (non-Valentines) meal somewhere I could enjoy the food. Not the sort of restaurant Teresa would like, but I feel she would get more pleasure from seeing me enjoy eating than sitting there enjoying her meal while I sat there doing nothing! Me, I’m happy for her to enjoy her meal and I don’t eat but enjoying our meals together and discussing it is the heart of us eating out from our very first Non-V meal, so we will need to adapt I guess. We’ll discuss it, probably on the train knowing us ????.

So, that was a really good day, oh yes, and while at Treliske we went along to the PALS office (Patience Advice and Liaison Service) and lodged a formal complaint about how the Oncology unit is NOT talking to us. We gave them a copy of the letter we had sent two weeks previously (with no reply) and the associated “division” for oncology are required to respond within 10 days, preferably 5, if urgent, which the PALS people felt we were. We know the role of PALS is to be patient focussed, but even so we got no sense we were being unreasonable and every sense that the Oncology unit could do better. So, fingers crossed we get somewhere. After all, if this drug is not working then every day they delay, the cancer is growing and spreading and I’m not going to accept that! So, despite the stress and distress this is giving us, we felt we were moving forwards.

Yes, we understand the NHS is overloaded, yes, we understand that the Consultant may have “triaged” me as lower priority because of my age and how advanced the cancer is. However, this is ME, I am not a statistic and we want better and if that means we have to shout louder than someone else then we will – yes, we know that is potentially selfish and someone else may get less, and I hate that, but all we want is fair treatment that is appropriate and which we can understand and can be justified to us. Right now, none of that is the case and that needs to change. I am not going to die without one hell of a fight, I will not go down silently.

Are those crossed fingers starting to work?

First poo, quite normal, keeping those fingers very firmly crossed.

Early evening, Poo is diarrhoea but no blood, maybe they are working?

The Lanyon trip starts – Tue 6-Mar-2018

First poo, quite normal, looking good.

Early afternoon, Poo is diarrhoea but no blood, I’m getting happier.

On the news this morning, BBC news presenter Bill Turnbull has prostate cancer that has spread.

The presenters talked about how chipper he is with them; yesterday people at the office were telling me how good I looked and how positive I sounded.

That is only ever one part of the story and I cannot imagine that anyone getting the “terminal” diagnosis (now known as life-limiting) does not get angry, depressed, upset and all those other emotions no matter how positive a face we present to the outside world. Enjoy our positivity by all means, but please always remember that we are not always like that in private or behind the mask we wear. That also applies to those who are supposedly cured, there is always the worry that it could come back.

Life cannot be lived in depression so yes, we work hard to be positive, especially for our friends and family, but we are not super men and women (and super non-gender specific persons) and tears are just as normal a part of our lives and we need to be able to have them in public as well as private and for it be “all right”

I love being told how wonderful I look but, in my head, I always add, “for someone who is dying”. Don’t stop saying I look good, but don’t be embarrassed if I just burst into tears, they are two sides of the same coin.

Ok, Bean’s rant over. Well, not quite. In the same article Bill T says, “I can’t plan beyond 12 years…my oncologist is hoping for 18.” Hmmm, I’d consider more than two to be a bonus based on what the consultant told me. I guess I’d be a lot more positive if, at 63, someone told me, well Bean you’ve got till you are 75, maybe 80 ☹

Perhaps this wasn’t the best article to reference after all?

Lanyon Exhibition

On a different note, it’s the sleeper tonight at 9:45pm as we head up to London for the Peter Lanyon exhibition. I’m in a pretty awful state, worrying about being able to sleep – I know I could and did for 6 months in 2016, but now I don’t sleep easily in a proper bed ☹. Then there’s the question of whether the exhibition will be as good as I understand it to be, or just 3 scraggy pictures (not that PL did scraggy pictures ???? ) Will I handle the exhaustion, will, will, will, will, … After all that it will be the sleeper back on Wednesday night, but it doesn’t leave till 11:30 pm so a LONG wait at Paddington (even if they let us on at 10:30pm, which they usually do)

Hmmm, I do want to do this and yet, right now, I want to run away and bury my head and hide at home. I can never remember being so scared about doing anything in my adult life – and I get scared easily (part of the fun of being autistic).

Oh well, by the time I return here, all will be over and I will either be on cloud nine or down the drain. Except I won’t because as soon as it’s over my brain forgets the emotional experience and all I have are “logical” memories.

I have been reading my old blogs – starting on the day of the accident. I have been completely lost in them, not sitting here in my office but wherever the blog was. I had just reached the point of unwrapping presents on Christmas Day when Teresa came into the office to say it was tea time, and I burst into tears. I just cuddled her (well me sitting and her standing) and told her why I was crying, all the time soaking her jumper in tears.

As she left, she was in tears and said to me, “this is what I will have after you’ve gone” (these blogs) and yes, she will, a lot of me is in these blogs, even how I write, so that I will not be totally lost. If only I can find the time and motivation to gather them all together (before and after cancer) so they are more coherent and not quite so scattered. There are a lot that are still handwritten, i.e. that I never got around to transcribing in the “letter from the North” days.

So, off to sort tea (the remains of the Chinese takeaway) and then finish packing, shaving and dressing for the sleeper and off to London, see you in a couple of days.

And off we went, though not without considerable adventure courtesy of Teresa. We got on the sleeper at Penzance, no problem. They have renovated the cabins since I last travelled and in general have done a nice job. However, the latch that holds the door open is the same as it was and needs a little care. One yelp later and blood pouring from her fingers and Teresa christened the train’s first aid kit. No lasting harm as it was only a small nick, but what a lot of blood! She is fine now, and it has already healed, but nevertheless a dramatic start.

We stayed in the sleeper’s lounge for a bit after her “surgery” and Teresa had a small bottle of red wine and looked happier than I have seen her for a long time (pre-cancer). We were having a more or less normal journey on the sleeper and that’s a romantic thing to do. I was determined to help the whole trip to be as “normal”, indeed romantic, as my body would let it. I’m afraid I wasn’t drinking as I need to give my liver every chance to survive the abuse it takes at the hands of the cancer drugs. I did have a sip, however, and I’m pleased to say that I could taste the wine, which was nice.

The sleeper cabins are fine for one, but VERY cosy for two. Teresa sleeps on the top bunk (I couldn’t get up there anyway) and the revamp has swapped a detachable ladder for an inbuilt ladder that pulls out from a slot at the end of the bed. The steps only reach up half way and it amused me watching Teresa climb and descend those steps, every time she looked like seconds from disaster, but she made it ????

It wasn’t the greatest night for me, but then I don’t have great nights anyway. I was able to sleep on my side for the first time since the accident, using a cushion to support my right arm and hence the broken collar bone. All in all, it was better than I feared. I know the sleeper well, having used it every two weeks while working for 6 months in Cambridgeshire, so I know that I am well able to sleep on the train, all other things considered.

The Lanyon exhibition – Wed 7-Mar-2018

The sleeper disembarks at 7am (it gets in to Paddington at 5:15am-ish) so we decamped to the 1st class lounge (sleeper berths are classed as 1st class). Plenty of tea, coffee, pastries, … Teresa sorted her makeup and tamed her hair while I had a mug of tea.

We then deposited our suitcase at left luggage – not cheap but seeing how they have to do airport type checks (including X-Ray) not unreasonable. Teresa still had to carry around my cushions in a hessian bag, and I suspect she will use some sort of pull along device or rucksack in future to rest her shoulders.

Anyway, from there to St Pancras for breakfast at Pain Quotidian. I like eggs and can taste them, so scrambled eggs and smoked salmon for me. Hmmm although I can taste the smoked salmon, it just tastes strong (and not altogether nice), not at all the taste I know, so that’s something else off the list. It’s not just today, it’s a problem I noticed with smoked salmon before, and today just confirmed it.

Once we’d breakfasted it was off to Green Park station, the closest to the gallery. God, the walk to get to Victoria line (Piccadilly was closed but just as long a walk), especially when needing the lift as I struggle with escalators, especially going downhill. My feet hurt (thanks, cancer drug), I get exhausted quickly, so a lot of walking is hard. That walk to the Victoria Line was a nightmare of pain and exhaustion – totally stupid.

Frustratingly, a motorised wheelchair would have made things an awful lot easier, but the tube is not great with wheelchairs even at the major stations and absolutely rubbish during the rush hour period when we were travelling. Never mind the problem of getting one onto and off the sleeper train.

So, I had to walk, it was a massive problem for me at the start of the day and the pain and exhaustion of it totally dominated my day before we even got to the gallery ☹ . We are rapidly getting to the point (if not already arrived) where walking is something I do for exercise but not something I can do very much of. When we go to the folk festival in the summer, I am going to have to use electric assistance or I will just be too exhausted and in too much pain to enjoy myself ☹, oh joy! 

Still we made it to the gallery just before it opened at 10.00 am, but they let us in anyway.

It was wonderful, not a lot of paintings, but more than enough to keep this Lanyon addict happy all day, especially as there were several I’d not seen before in the flesh. The gallery lent us a chair and we adorned it with my cushions, Teresa just moved it around the gallery and I spent long periods just “feeling” the paintings. Peter Lanyon paints with such emotion that I feel them as much (if not more) than see them. The gallery staff were brilliant and I cannot praise them highly enough.

Teresa’s best friend from Cambridge joined us. When we decided to go to the exhibition (well I decided and Teresa agreed ???? ) and worked out our possible days of travel, it suddenly dawned on me that Teresa and Rosie hadn’t met up for ages, that Rosie likes abstract and Lanyon (not obsessive like me, but, …,), and I wanted Teresa to have as good time as possible, so a quick email invite and Rosie and her husband Mike were able to come down from Cambridge on the train and meet us at lunchtime. All part of my trying to make the day as Teresa-friendly as I could. It seemed to work (as far as I can tell). By the time Rosie arrived it was lunchtime and the gallery told us where to find a clutch of places to eat. By now I needed the loo, that was the one thing the gallery didn’t have. As a result, I drank very little that day in order to avoid too many loo trips. Something I was to bitterly regret later.

We found an Italian restaurant and, on the principle, that I can still taste tomatoes, I selected cannelloni (Ricotta cheese and spinach) with loads of tomato sauce – lovely. Really nice to enjoy a meal out, so maybe another option for that non-V day, if I choose meals carefully?

In the afternoon, it was back to the gallery for more Lanyon. This time I sat by myself and Teresa, Rosie and Mike looked at the paintings together and I just sat and looked/felt. By about 3.00 pm I was exhausted and although I didn’t want to go, I knew I was past the point of enjoying the paintings, which in itself was a deeply sad thought. So, I told them that I would be ready to leave at 3:30 pm. A few minutes later, the receptionist who had been so fantastic and friendly towards me all day, came up to me and asked if I’d like to meet Toby Treves – the person who had curated the exhibition and who had also written Peter Lanyon’s Catalogue Raisonné which I had recently bought. Of course, I said ‘Yes please!’

However, this did mean that we wouldn’t be leaving at 3:30, so I warned Teresa!

And then it was time to leave. That was so hard, how could I leave these paintings behind? Probably my last chance to see any of Lanyon’s paintings in the flesh, apart from those on permanent exhibition at Tate St Ives (however there are only three of those I think, though that does include St Just, his most famous work)

But leave I had to, though not without an awful lot of tears and more pain than I want to remember. I went back in to the gallery at least twice before eventually forcing myself out. Even then I was in tears as I left and again as I looked in through the window from outside.

Leaving was so hard, but I knew I needed to.

We called into a nearby Patisserie Valerie (I knew the chain, so that made it autism friendly, i.e. familiar) for coffee and cake and loo before parting with Rosie and Mike and heading off to St Pancras. My feet and exhaustion were terrible by now and I moved along at a glacial pace.

I decided to put up with the steps at Baker street and not go back via Kings Cross (all lifts) and that long walk to change tube lines. Unfortunately, it was still a massive walk to get to the Jubilee Line and so I waddled along with Teresa up ahead but stopping every few steps to check I was still there.

Still, the surprises of the day were not yet over. As I waddled along I noticed someone following me with their phone held out in front of them, as if they were videoing themselves. When they caught up to me they held the camera in front of both of us and asked me to smile, which I did, no harm. She then wanted to talk to me and it turns out she was a transgender woman from India and rather surprised to find someone like me who is indeterminate in gender (i.e. non-binary), especially as I “present” as a mixture of male and female (the bald head and lack of wig being the big-ticket thing, it seems). I was in burgundy tights and a floral dress so “mixed signals” apparently. Anyway, a fascinating diversion and chance meeting in the underground tunnels. There was much hugging and she pinched Teresa’s cheek saying how wonderful she was and how lucky I am. Nevertheless, after she left Teresa confessed to a slight nervousness that it might have been an elaborate pocket-picking scam! It was not ????

Eventually we got to the tube and then to Baker Street. The stairs were tough but better than long periods of walking and we changed and got to Paddington.

On all these tube journeys, the trains were packed, but Teresa went ahead and asked politely about the ‘disabled seat’ at which point people immediately moved to give me a seat. It was heartening, especially as in a couple of cases people moved from the adjacent non-disabled seat so that Teresa could sit with me.

We arrived at Paddington, collected the suitcase and Teresa went off to the first-class lounge. I followed on behind VERY slowly. After that we waited, and waited… it was probably 6:30 when we got there and there was no boarding the sleeper till 10:30, so it was a VERY long wait.

The sleeper itself was fine, I slept Ok, indeed was asleep before we left at 11:45pm, waking briefly as the train pulled out of Paddington

Home – Thu 8-Mar-2018

We arrived at Penzance station just before 8.00 am as usual and headed home. The cats seemed reasonably happy to see us, but I really remember very little of this day, I was so exhausted.

However, there is always one topic for consideration… ????

The Poo Pattern

“Harder” – feels like spikes, probably because I got dehydrated or constipated, … half an hour later diarrhoea but clear, next time (third time) there was no poo, thought there might be but so a quick wipe in case, and bright red.

It seems that, despite the fact that drinking out in London is difficult because of the need for constant wee and the perennial diarrhoea problem, I just have to push the fluid through all the time, or pay a high price! Tough when availability of toilets is limited, especially ones that you need NOW.

Depression – Fri 9-Mar-2018

Slept on my side on the sofa, cuddling a cushion, brilliant. A rest for my coccyx and another step back to “normal” – well, nothing will ever be normal again, but you know what I mean

8.00 am and at work (at home) and raring to go, …

Going into depression

Today the oncologist finally replied to our letter. We got a soggy (it was raining) envelope in the post and I was soon in tears. It was a useless response, he replied to getting a letter, but did not respond to what we said except in the vaguest of generalities, not responding to anything we wrote, just platitudes and empty phrases. Now we are thinking of looking for an alternative oncologist – very scary when you know the cancer is silently growing inside you and the last thing you want is a consultant who is clearly not engaged, or any kind of delay in treatment. We made appointment with GP for Monday to talk to him about it.

Poo Report

First thing – normal to stiff, no problem and no blood. However, did get a massive scare with red blotches all the way up my right arm. Then I realised, the cover on the cushion I “cuddle” to support my collar bone when laying on my side has a new bright red (and silky) cover. The blotches washed off, phew, but for a few minutes, mega panic! The fear is that EVERYTHING is related to the cancer!

Afternoon – diarrhoea and no blood, looks like I got away with it yesterday!

And I still ran out of steam very early and that is Friday – two days after the London trip.

Postscript1

The Lanyon trip was a major exercise and the balance between the pain and exhaustion and my pleasure at going is a very fine one, edging towards being too much. This is where my mind has to dig deep to help my poor body do things it doesn’t want to do and, in some cases, can’t do!

On the other hand, that letter from the Oncologist was so dismissive of our concerns, so perfunctory in content, that I feel abandoned and not worth trying to save. This is a really unpleasant place to be and overworked or not, his letter and attitude are unacceptable. We will discuss options with our GP on Monday and see what he thinks.

Descending – Sat 10th Mar

I am sinking fast emotionally. I’d hoped the letter to the Oncology consultant, plus a kick from PALS, would elicit a change in attitude. It doesn’t appear to have done anything of the sort and the one place I need support more than anywhere else is failing me. How do I get the right/best treatment from someone who does not give me any confidence that he cares about doing anything more than treatment by the numbers? In the end it is the treatment that gives me every extra day, so how can he be so careless of those precious days, weeks, months and years? I want every one we can eke out and I need his help to maximise them!

Still sinking – Sun 11th Mar

Last night as I was going to bed, I noticed some funny black lines in my left eye. So, what’s this? Am I going to go blind as well? What is happening to me? This is mega scary and I don’t feel I can handle any more.

GP Trip #1 – Mon 12th Mar

Appointment with GP to discuss referral to an alternative oncologist. He was of the opinion that we were unlikely to get anything better, given the current pressures on the NHS. Not altogether sure we agree but maybe we just need to be very hard and pushy with the consultant we have and not let him fob us off? After all, his sidekick did say that it’s all about ‘who shouts the loudest.’

At our last oncology clinic appointment, I mentioned a mole on my head that seems to be larger and has become itchy. The doctor (not the consultant) said he couldn’t comment, go see your GP. Hmmm, not impressed, but Ok.

Mentioned it to the GP and we will be back on Wednesday for him to look at it. You can only deal with one problem at the time in a GP’s surgery, the consulting times are so short!

Tue 13th Mar

Hmmm, now seeing, what looks like letters in left eye during daylight. Teresa suggests floaters?

Today was scheduled for an outing so first off, we went to look at campervan awnings, as we hope to pick up Pongo at the weekend.

Next, we drove to Perranporth for lunch. Sausages and mash for me. Not much taste, alas.

After lunch, we then we went to visit someone from the Kidney Cancer support group to discuss our options and understand more of the processes going on in the NHS – an interesting and very helpful afternoon.

As a result, it seems we need to investigate Stereotactic Radiotherapy for the shoulder. Also, if Paz has failed immediately, then there is an argument for going on to one of the other first line drugs, rather than skip to nivolumab on the second line.  Niv is also a 3rd line drug so, if you have it as a second line, you lose access to all the other second line drugs (you are only allowed one on each line!) and can’t have Niv at third line. It seems to make sense to try one of the other 2nd line drugs first. The issue here is that the drugs don’t last forever, so you don’t want to reach 4th line (the end) too soon! After the fourth line it’s down to clinical trials, if any are appropriate and then die!

So, you will appreciate the speed you go from first to second to third to fourth is a major issue, especially because ALL the stages fail eventually and some of them never work in the first place.

Death is staring me in the face and I continue to descend into emotional hell. If only I could have a decent conversation with the oncologist I would feel we had a little more control, whereas, at the moment, the cancer is in control of me, nothing I can do about that, and so is the consultant (in control of me), but I am NOT and I can’t accept that.

GP Trip #2 – Wed 14th Mar

GP looked at the mole on my head: it is benign, a standard skin feature that happens as you get “old”, phew, glad I’m “old” ????.

I raised the issue of the black lines in my eye, he said to come back on Friday for an examination. Blah, something else going wrong?

Thu 15th Mar

No idea what happened today, but I got precious little work done.

GP Trip #3 – Fri 16th Mar

GP checked retina in both eyes and was happy, suggested the optician for floaters and get the photo of the retina that they do.

Also, this GP is now leaving the surgery (I had his last appointment on his last day) so that’s another change to get used to.

As for our new vehicle, the paperwork hasn’t come through, so we won’t be collecting it tomorrow after all – doesn’t anything go right?

Turning the depression corner – Sat 17th Mar

Looking at my time logs, I clearly got work done, but beyond that I have no memory. Outside of work, I am in such a deep depression that nothing matters.

At some point in the last week, I tried to make a chicken Chow Mein. It ended up more like a stir fry but for me it was ok, Teresa and daughter also liked it, trouble was I couldn’t taste a lot so hard to judge.

A few days later I reheated the last portion for lunch and added my new favourite – Lee and Perrins sauce which adds flavour for me and lifted it up to ‘nice’.

Coming out of depression again

I think today was the day that Teresa encouraged me to drive her car to Sainsbury’s, which I did successfully, even with my dodgy right arm. I felt safe and in control at all times.

Emboldened, I decided to try and make a milder version of a Thai Red curry I’ve made in the past – the normal version is too hot for my newly sensitive mouth – so we picked up my best guess at the ingredients.

At the checkout, I helped unload the trolley and pack the bags – for months now I’ve found myself a chair to sit on while Teresa packed. Not today. I even drove home afterwards!

Well, the curry was a bit too mild on the first serving, but tarting it up with a little extra Thai Red Curry paste and some Lee and Perrins (Worcestershire sauce) seemed to hit the spot and all three of us enjoyed 3 meals and daughter four meals. Success! I still can’t tell how it tastes for anyone but me, so I get Teresa to do a sanity test for her and Kat, then zip up my portions to get enough taste for me. My new best friend (the Lee and Perrins) is doing a great job in that department.

Today is, I think, the point at which I started to lift from my depression, in large part because I started to feel “normal”. Without Teresa pushing me to drive – even though I wanted to, I was just too scared – I would still be in that slump. Thank you pet.

Still rising – Sun 18th Mar

Same as Saturday, continuing to climb out of the pit.

Rising some more – Mon 19th Mar

Phew, at long last making progress on a work problem, by no means sorted but there is movement, I have found a chink in the problem that I can start trying to open up a bit wider. Thanks Arduino – used to build an Ethernet frame generator.

Rising out of depression has, I think, helped unblock my brain somewhat.

Driving again – Tue 20th Mar

Off to the insurance doctor re compensation claim, different doctor to the one who cancelled during our whiteout (for West Cornwall, but known as “three flakes of snow” in other parts of the country!) three weeks ago

I drove for the second time, much further this time, to Truro – but that’s a comparative distance to Penryn and so a test for driving to work.

Just before we pulled out of the car park to go there, Teresa got phone call to say Pongo is ready. We will collect her on Friday when the trains between Penzance and Truro are supposed to be running again (they are upgrading the signalling apparently). We will actually go through to Bodmin Parkway and the Pongo people will collect us from there.

A bit rude calling them “Pongo”, it’s my dyslexic version of Bongo which are the vehicles they used to import and convert, but nowadays it is the Toyota Alphards and this is what we are getting, but Pongo I can remember and so, …

Doctor seemed nice and understanding, so hopefully her report to the claims company (assigned by the insurance company) is favourable and we can get some money. We will use anything we get for further adaptation to the Pongo so that the accident is paying for her, which seems appropriate since the accident lost me Blossom (my Landrover 110).

By the time we got back to Sainsbury’s in Penzance, I felt that was enough driving and Teresa finished the journey back to Pendeen.

It confirmed that I can do the driving, but I need to be sensible about the times of the day I drive – late afternoon is less sensible and so I will go to work for the morning only, once a week. Work are fantastically flexible, so they are OK with that.

The poo returns – Wed 21st Mar

1:30am bad diarrhoea

8am ditto

2pm ditto again

7pm and again, took Loperamide (same drug as Imodium)

7:30pm and again, took Imodium Instant and it stopped!

Yet more eyes – Thu 22nd Mar

Still waiting for poo to restart, but not surprised it’s in no rush now!

I’ve now got those floaters, or whatever they are, in my right eye as well, heading rapidly towards panic now. Hope when we get an optician’s appointment they can say what’s going on. To be fair, if I don’t think about them I am rarely aware, if I do think then my brain sees them again.

Pongo – the new car

Pongo day – Fri 23rd Mar

We are collecting the Pongo today from The Mazda Bongo Company. Yet more stress as they haven’t confirmed they are collecting us at Bodmin Parkway station, nor have they confirmed they have received the money. Last night I dreamt they were a fly-by-night company and we had lost all our money.

Teresa is able to be a lot more “dreckly” in her approach and I know she is right and yet, … There was a time when I was the more chilled of the two of us, but the cancer has changed my perspective and I no longer like to wait for tomorrow because, for me, it may not arrive!

We set off for Penzance station for the 8:28 train, plenty of time, then mega panic rush – where did that time margin go? Then I realised I had left behind my phone and no time to go back for it. Can this day get any worse (for me)? Of course it wasn’t a disaster, it just left me feeling even more exposed ☹.

The train journey was fine, though we did have to deploy my cushions. Got to Bodmin Parkway fine. Nobody to meet us. I resisted making a panic phone call (well, Teresa wouldn’t let me have her phone, would she?!) and they turned up ten to fifteen minutes later. All was ok, of course it was, the Pongo is exactly what we expected and wanted. I was able to drive it more easily than Teresa’s car.

The new vehicle is more of a stately ship than a sleek racer, Teresa calls her The Duchess. However, since Teresa has this image of Margaret Rutherford when she says that, and has described me as looking like MR when I walk hunched over, I’m not keen on that name, but I do like her alternative, so Angelique she is.

Called in at Firehouse Campers to discuss some additional modifications. Lovely company, one-man business but we like him and look forward to getting a quote in the near future. Then Sainsbury’s and home. Teresa thought she might drive the last bit but since parking behind our house is tricky and only I have done it before (in Blossom) I didn’t want to change the seating angle for her and then back for me. So, I drove home, pulled onto the drive prior to reversing behind the house, at which point Teresa said “where’s my car?”

Whoops. We’d left it at the station in Penzance and so back we went to collect it. By the time we returned, the village was heavily blocked with cars – even more than the usual school run. I managed to park Angelique but it was a tricky reverse and it’s going to need some more practice. The only real problem was the noise

  • She insists on beeping inside the vehicle when in reverse
  • The corner sensors beep when close to obstructions – like the granite posts that limit the entrance
  • When I get really close to obstructions, she talks to me in Japanese giving (I assume) warnings to be really careful please.

It is extremely noisy and distracting, just when I need to concentrate!

Later that afternoon Teresa had her usual hot bath and as I sometimes do, I joined her in the bathroom. Well, it’s amazing how much fun a bath can be, even when you are both no longer svelte in stature, joints creak and one of you has an arm that can’t be used to support your weight when trying to move around.

A very nice end to the day!

Postscript

Well, I have completed the blog and am ready to pass it to Teresa for editing. As I said at the top, I doubt I have been able to explain the emotional journey. The photo I put up as a “holding post” of me outside the gallery where the Peter Lanyon exhibition was held, tells the story far better than I can.

I am holding on, but my levels of hope are harder to maintain. Hopefully we will get some (good, better, …, anything is better than nothing) news in a couple of weeks when we get the results of next week’s scan. But I’m not holding my breath and am expecting more bad news and that we will have to fight to get what we need and want for me.

On a final note, the cycle into and out of depression I have described is but one cycle of an unceasing waveform, albeit a rather powerful one this time.

The Bean, Pendeen, Sunday 25th Mar 2018

A brief update Tue 20-Mar-2018

I am some three weeks behind with these blogs. I have plenty of notes but have been struggling to put them together. It started with the picture above which is me leaving the Peter Lanyon exhibition that we went to in London earlier this month. What you may not be able to tell from this pic, is that I am in tears and Teresa is comforting me. In itself that is a long story which will hopefully come out in the real blog when I get it finished.

This is just to say, yes I am still alive, I have been going through a VERY down period and have been struggling to work or do anything. All connected with my current cancer drug not working, my consultant not feeling the need to include me in treatment plans and in general feeling that my battle with this cancer may be short rather than long.

On Saturday (after being given permission at the fracture clinic), I drove for the first time in 4 months (Teresa riding shotgun), and collected some food from Sainsbury’s. Subsequently I did some cooking and in general my mood has (somewhat) turned the corner. However, I was at the doctor’s three times last week,  the next scan is in a week and the next clinic is in two, so that cloud is never far away.

This is harder than I can explain in words and I find writing an immense challenge, but I will hopefully find some way of expressing the last few weeks and release a blog for it.

The Bean, Pendeen, Tue 20-Mar-2018

Bleeding bottoms, snow, pancakes – 24-Feb-2018

 

We made it to the Doctors clinic in Truro, despite the conditions, shame the Doctor didn’t!

Bleeding bottoms – Sat 24-Feb-2018

Well, the concert went surprisingly well. Steve Knightly was excellent and I was reasonably alert. Inevitably I had the odd weepy moment, but then music does that to me. Sitting was comfortable, however the stress/tension in my back got worse as the evening progressed (it usually does) so I was glad when we left and I could get away from people, nice as they are.

We sat with two friends from Pensans Morris who I hadn’t seen in a while and also had a chat with the two Lindas from Penzance Folk Club.

I did panic on the diarrhoea front, even though I suspect there wasn’t actually a problem I took an Imodium Instant before the concert, just to be safe. In retrospect I wish I hadn’t panicked.

When we got home, bottom wanted to go, it did, no problems as far as I can recall, I’m sure there was no “pushing” but there might have been, I was so wrecked by then, I don’t really remember.

This morning normal bottom activity, felt proper normal, yippee, loo roll comes back red, back to bleeding again – I never pushed hard so what is going on? Now I am mega worried. As usual, it’s almost certainly the simple answer, delicate blood vessel, poor healing  and healing slowly ‘cos of Pazopanib, but still, …, need to get this stopped.

Blood vessel probably triggered by the “constipated” moment last week, and I did something wrong last night, but even so.

So now, even though I am terrified of diarrhoea, I won’t want to take Imodium. This is MUCH more stress than I need right now, especially if this bloody drug is not even slowing down the tumors!

Nothing from consultant yet, mega disappointing and that stress is not helping either.

Spent all day with Teresa and my daughter at the garage while daughter chose a new car (hers died in its MOT). I wasn’t really relevant as the two of them (despite being “steps”) are getting on quite well at the moment and are more than capable of handling a garage salesman. I popped my head above the parapet for the odd “technical” comment but otherwise kept out of the way. SIX hours after we left home, the decision was made. I contributed about 10 mins to that. The rest of the day I spent sat around in the showroom, waiting. Strange as that sounds, it left me totally exhausted and barely capable of anything. We got home around 4:30pm and I just crawled into bed on the sofa. I didn’t sleep, but I rested and felt a lot better. Strange! Daughter went over to friend’s, Teresa was off to another concert at the Acorn, and I watched my recording of the Old Grey Whistle Test live show. Very nostalgic, especially the early stuff with Bob Harris, I didn’t get on so well with the later presenters.

Red, getting better

So, a second trip to the loo whilst everyone was out and better results, tad of red on the loo roll but nothing on the bowl. So, of course, I sent an update to Teresa, it’s what I do!

Still awake when Teresa got home at 10pm but went to sleep shortly afterwards

No blood this morning – Sun 25-Feb-2018

So, poo trip this morning, a lot of trepidation. Third trip, two yesterday and not only no diarrhoea (loose but ok) but also no blood.

The slow healing from the Pazopanib combined with a weak blood vessel means I must be EVEN more cautious on the “pushing” department and gently, gently all the time.

Too much poo talk

Of course, there’s too much poo talk, we usually don’t talk about it, do we? Yet on these drugs I walk a tightrope between one extreme and the other and because I got “damaged” due to not understanding the constipatory effects of a pain killer five years ago, I am more “delicate” than I would like to be.

So, to use a very folk music sort of line “take this warning by me”, i.e. take heed of your bottom (front or back), don’t be frightened by it, keep a good eye on it and look after it carefully. AND if in doubt have it checked.

Now I know there are some out there who wish I would shut up, but I won’t. In my case (I hope) it’s a management problem, but I watch it carefully, for some people out there it WILL be a cancer problem and life or death.

Mon 26-Feb-2018

I got tired yesterday afternoon and ended up sleeping for an hour or so, probably just the previous two days catching up on me.

Early hours of the morning, bottom calls, time for Imodium as thing have gone too far. Hopefully I can keep it running on “odd one here and there” rather than continuous use of them.

Oh well, daughter and wife off out today, Teresa is on a course, so I’m just head down at work in my office. Odd having a quiet house, especially since the cats just go upstairs and sleep in a pile on our bed all day until either Teresa gets home or they get hungry!

Tue 27-Feb-2018

I was going to leave this blank, but I should say “all clear on the poo front” and “just a normal day in the office”.

Wed 28-Feb-2018

What a day of highs and lows

First, we drove into Truro for an appointment with a Doctor from the insurance company. This is all to do with getting compensation for the accident that started this whole sorry mess. Don’t know why we need to jump through these hoops, the other driver admits fault, the claim is managed by our insurance company (not a cowboy) and the medical evidence is incontrovertible. Worse, there was a six week wait for this appointment.

Well, despite the snow and the mass exodus out of Truro because of the snow, we made it in plenty of time. The doctor, however, didn’t. Mightily pissed off, we returned to Pendeen. The journey back wasn’t too bad as the snow had stopped and a lot of cars had already left the city. It would have taken us 2 hours, about 1hr longer than normal, but not unreasonable.

UNTIL, we reached the St Just road up from Mount Misery (the A30). It was fine to begin with but there’s a steep hill out of Newbridge and a lot of drivers felt the need to drive VERY slowly and as a result, lost traction. It took an hour to do the last 10 mins of our journey. What a nightmare!

Then we were home, I was very dehydrated and my body felt like it wanted “to go” but couldn’t. A good slug of an Apple and Raspberry J20 and things felt like they were moving. Well, they were but nice and ruby red as well (not scarlet as in fresh, not dark as in old) – oh no. Almost looked like the J20 had bypassed the kidneys and gone straight through.

Fingers crossed that is what happened, but mega worrying. If bleeding starts to become “the norm” then I have yet another problem, and one that is VERY worrying.

Exhausted I crashed out and …

Thu 01-Mar-2018

Here I am Thursday morning. I was supposed to have a fracture clinic appointment today but after yesterday’s fiasco, especially the hill to/from Newbridge, discretion seems like a good idea and it’s been re-scheduled to Monday morning. So, just working from home.

No loo visits yet, almost too scared to try and see what colour I have, this is NO fun ????

On the upside, I cracked a work problem that has been causing me grief for 3 or 4 weeks now. Once I worked out the problem the solution took 5 mins. Oh well, onwards and upwards

It’s 8am and the rest of the family are fast asleep as they aren’t going anywhere, it’s only me up at 6am, feeding the cats and taking drugs. The heating is on and the taps in the kitchen showed some reluctance to run (next to an outside wall), so I started to worry they were frozen, but luckily not. Still, I need to keep an eye on them, and there is an outside tap right the other side of the wall which is not insulated, not generally needed down in this part of the world. So, worried about what’s going on there, ditto in our unheated annex and the water pipes in there. You just don’t expect to worry about freezing pipes down here in West Cornwall.

Poo report – well where would we be without one?

Phew, all ok, almost feels too firm but very carefully relaxed bottom muscles and all ok, no blood (or J2O!!!). Phew.

Later in the evening, a second visit and all ok as well, so maybe it really was an aberration, doesn’t stop the worry though. Every time I go to the loo for a poo I worry, it is incredibly stressful and not really helpful, but I daren’t relax (as it were)

Normality – it’s pancake day

Otherwise, all is well, incredibly cold and no way one stirs from the house, but we missed Shrove Tuesday and my daughter has been keen we do pancakes. I have made them every year since before they were born and daughter does like mine. On the day I was just too poorly, but she suggested today might be a good day since none of us were going anywhere. So, we did. Teresa made the batter – I haven’t the strength in my right arm (I always hand whisk) but she used my batter recipe (one egg, 4 oz Self Raising Flour and half a pint of Milk and a pinch of salt) – as many times as you want.

I managed to cook the first couple but then ran out of steam, I managed another couple later on but Teresa carried the burden. I only managed to eat three but I think the girls managed more like six, though they deny it!

It is distressing to think that might be the last pancake day (like last Christmas, last Birthday, last Strictly, …) this blasted cancer really changes your focus even for someone like me whose external symptoms are down to the drugs, not the disease. Once the disease makes itself felt I suspect the focus will grow!

Fri 02-Mar-2018

Just another day at work, poo all Ok, phew, and onwards, snow has cleared a lot, running water down the street during the night so not the freezing that was forecasted. Hopefully the weather will continue to improve across the whole country and “selfishly” that we can get up to the Peter Lanyon exhibition next week as planned.

Phew, really, do you never learn Bean?

So, this morning’s trip, quite firm but no pushing and no blood. Visit after lunch looser, no pressure at all and what do I find, yup Bloody Blood! What the hell is going on. We rang the Oncology nurse who recommended a GP visit (just in case). Teresa managed to get one for 17:10 today. The roads looked okay in the village so we decided to give it a go. Steep hills between here and the doctors’ in St Just but the buses were getting through. Fears coming back from the road out of Newbridge on Wednesday, but, …

Half hour after last trip and bottom was demanding. Basic Diaoreah this time and NO blood, so what the hell is going on here. Oh well seeing the doctor and even though the thought of an exam is no fun, needs must. I did have a boohoo (as Teresa would put it) just because I’m fed up with my body seeming to constantly fail me. It’s so hard fighting all of this and my fight has barely started, it WILL get significantly worse 🙁 

So, we left for St. Just at 4:30pm having dithered and dithered about leaving because the snow had started falling again – albeit lightly. Still, off we went, got as far as Carnyorth (about a mile down the road) and there was more slush on the road than either of us liked the look of and the car slithered a bit. I suspect it was my fear that was the biggest problem, Teresa would have pushed on, especially if we’d not had the stress of Wednesday at Newbridge.

As a result, here I am back home. I will talk to the doctor on Monday – same day as fracture clinic  – and see what he says.

If I feel like giving up now, just how hard is it going to be to keep going as this bloody cancer really starts to bite and it’s not just the side effects of the drugs (nasty as they are)?

Postscript

I’d love to have a positive end to this week’s blog, but right now I’m really not feeling that positive or gung ho.

I WILL pick myself up, but it’s not easy, it can’t be for anyone who is going through this sort of stuff, it is truly awful and no matter what external smile we put on our faces, it is often not so underneath. I guess it’s arrogant to speak for anyone else, but I can be quite definite, it’s not always happy underneath for me, no matter how “positive” I might seem on the outside.

 

More Poo stories and Cardboard Fish 17-Feb-2017

Me at the North on my 2nd visit at the end of January, just finishing my HALF pint of Proper Job. Back then I could still taste it. Not any longer I am afraid 🙁 .

Blasted Consultant – Sat 17-Feb-2018

Can’t say I’m on top of my game. I woke around 5am and got up around 6am and managed a bowl of Ready Brek plus a mug of tea, then into my office.

I have drafted a letter to the Consultant saying how unhappy we are with our “care”. It is now in Teresa’s hands and will be totally re-written as we both know my clarity of communication when I am unhappy is more than anyone without a lot of experience of adult autistics can handle without taking severe offence. So, Teresa will “pretty” it up and I’ll put a few autistic teeth back in, just more carefully placed, and we will ring the support nurses to find out how to send it to him.

Treating me like an inconvenience is just not on, but I’d like to give him the chance to change his approach before really rattling the cage.

Hanging Blinds – Sun 18-Feb-2018

Just pockling along with work, spent a bit of time helping Teresa with the blinds for the annexe. Mechanically, I cannot see why the end caps/mounting brackets are so much larger than the U-Channel that fits into them, so emailed the supplier to see if I have missed something. Also spotted that if you put the central clip in the middle it fouls the strings for the blind, so need to move it about 2cms off centre. Nothing about that in the instructions either.

In the past I would have spotted all this sooner, but I have to say my “practical” head is much slower than it used to be, mainly because, I think, work gets the best of me and everyone else gets the “fag end” and after the last 10 days that’s very, very small!

The poo story returns – Mon 19-Feb-2018

Up around 5am and at my work desk by around 5:30am

Poo still somewhat of a problem, diarrhea yes, but not severe, maybe three trips a day (four, tops) and I’d like to let my digestive system settle before taking action.

Anyway, new anti-nausea is supposed to have some “any!” effect, so patience I think.

Still getting stomach cramps, prob down to wind (above and below)

Patience, taking time, …

A good day’s work, 10 hours!

We also got our letter off to the Consultant today, we hope he takes it seriously and starts engaging with us. We fear he will not like having someone “question” his approach and leave us having to seek treatment elsewhere (out of County) with all the accompanying delays, especially worrying when you have a tumour you can feel (shoulder) that is actively growing. Oh well, fingers crossed.

Yup it’s back – Tue 20-Feb-2018

Well, not sure what to say about the bottom department. Insisted I go around 4am, so I did and almost “normal”, certainly in the right ball park. Four hours later a second call and we are back to “pebble dash”, oh well, it feels like it is SLOWLY calming down, so patience Bean

Oh well, 12 noon and I thought I was going to need a clean pair of knickers (no, but touch and go), pooh like water, so “Imodium” (non-branded on prescription) time.

Why does nobody tell you anything? – Wed 21-Feb-2018

Popped to the GP for some more Ondasteron.  The one good thing that came from last week’s “clinic” was this alternative nausea medication, specifically meant for post chemotherapy nausea. Given that the pills I take are not Chemo, but affect the body in similar ways, it seemed like a good idea. It is, they are wonderful. They have a problem in that their effectiveness decays and you need to stop taking them, they are usually used for a week after a chemo session rather than for weeks on end. However, I am not taking the full dose and will now stop at the weekends to see if I can keep their effectiveness going.

Interestingly, having told one of the cancer nurses that we were fed up not seeing the consultant, she said that if you ask at “check-in” they will put a mark on your file and the Consultant will see you, but you may need to wait longer! The GP told me the same thing today, so it’s clearly “known” inside the profession. How were we to know that?????

Otherwise “just another day at work”, though I hit the brick wall around 4:30pm and laid on the sofa till tea time and fell asleep by 8.00 pm.

Cardboard Fish

On her way back from the garage (car MOT) Teresa picked up some fish and chips for tea, for a treat. They tasted like cardboard, so no more fish and chips for me. This lack of taste problem is one that really is impossible to describe unless you experience it. It is truly awful to get no pleasure at all from eating, add the dry mouth, no fun.

Phew, just another day – Thu 22-Feb-2018

Still, at my desk at 7am and feeling fine (as fine as I ever do), looking forward to “just another day at work”

An autistic Poo Report

Yup it’s time! Two good ones and then the diarrhoea was back, took a “blocker”. I consider this good progress.

Mind you Teresa came up to me for a cuddle during the afternoon after I had just come downstairs from the second visit and, as I was pleased about this progress, I told her. She felt that with her head buried in my chest and enjoying my arms around her “I’ve had two good poos” was not the romantic comment she expected. I’m sorry pet, I thought it was good news and shared it, I don’t really understand this good time/bad time or romantic thing and at that moment the romantic was second in my mental queue, the good news was first in my queue.

If you ever wanted to understand just how sequential our Autistic brains can be, this is a good example. No matter the situation, I HAD to say the first thing before I could move on to the second. Without CONSIDERABLE mental effort to override this default behaviour, that’s what happens, you just have to let me work through my mental list from the beginning until I get to the thing you want to engage with me about. Interrupt me and I have to go back to the beginning. It WILL drive you (aka Teresa, my employer, anyone who tries to talk to me) absolutely nuts. It’s not obvious if I don’t have a queue of things all ready because what you want is first in my list, but you WILL need to wait until I finish processing the first thing you said before rushing on to the net thing and that may take me rather longer than you expect.

Yes, this blasted cancer sticks its oar into our lives in horrible ways, but it’s the underlying autism that was, is and always will be our biggest battle together. Me to pull it back and Teresa to accept more of it so we can find that compromise that is essential in ANY relationship. It is tough and it would be so easy to let the cancer obstruct that process, but if we let it our relationship would crash and that really would be a crap …

[all I can think of now is returning to the subject of poo, my brain is locked, …., stop it Bean, concentrate, you said constipate? No, I didn’t, well anyway, on the subject of poo, it’s really interesting, ….]

… result. I wrote like that because the diversion literally occurred between the words crap and result in my head and would have done so in the middle of a conversation!

The cancer won’t kill our relationship, the autism would if we let it (it did my previous two marriages), we don’t let it, but we both have to fight hard to ensure it doesn’t.

Show of hands – Fri 23-Feb-2018

Off to a concert – Steve Knightly (show of hands) at the acorn this evening. It starts at 8pm and I’m usually tucked up in bed long before this, totally exhausted. Worse, the seats at the acorn will be massively uncomfortable and we have to take my cushions to try and ameliorate them into something I can tolerate. Even worse, the loos are downstairs and when diarrhea strikes (and it often does strike in the evenings) I have seconds and can’t use their lift during a performance so it’s a struggle down a tight spiral staircase with one arm not working for supporting my weight

So,

  • I will go to bed after lunch to try and get some sleep and hopefully be “less” exhausted in the evening.
  • We will take my 4″ thick memory foam “bottom” cushion and cushions for my back and hope we can find a chair that is a good base to build on
  • I will take my Imodium instants” with me in case I feel ANY gurgling and indeed may take a standard pill before we go out anyway, just in case.
  • Take bottled water with me and “sucky sweets” to help with the dry mouth problem
  • Autism and crowds of people anyone?

And then we will try to enjoy ourselves. I am going to be such a “damper” for Teresa and yet it will be wonderful to go out together. It doesn’t happen often as I don’t handle crowds (more than one person) well, I find them exhausting. This will be the first time since the accident four months ago, so it’s an important “first step” for us.

Poo alert

Teresa tells me there was too much poo in last week’s blog. Probably say the same this one too. Yes, I agree and yet it is a significant part of my days at the moment and it is a perfectly “normal” bodily function. However, much like cancer, one that people shy away from talking about. These blogs are about staring stuff in the face, so poo alerts will continue, so long as they are relevant rather than routine.

This morning, loose rather than runny, that’s a triumph. It really feels like my body is turning the corner after coming off Tramadol, of all the side effects it’s the poo department that was the most distressing.

Postscript

Teresa didn’t edit last week’s post, indeed didn’t see it till I released it yesterday evening. Her comment? “The first part I thought you don’t need me, the second, yes you do,” so there you go, if you felt the second half was more difficult to read than the first, you were right.

Given the current blizzard conditions as I do my final edit on this, there is every chance she won’t get to this one either, but we will see.

Well she did, so fingers crossed as this goes out, it makes a tad more sense than the last.