This last week has been tough, and I’m pushing to get this out as soon as I can.
There are four weeks wrapped into one, I am desperately trying to catch up, but there are so many obstacles.
Having decided that SHU is almost certainly dead (we still hope for a better response from the course tutor, but not expecting one), time to do some stuff for Teresa who is having a tough time of her own.
So, today we are re-arranging the sitting room so that our two arm chairs are together instead of on opposite sides of the bed and move my bed (was the sofa) from the window to a side wall. Plan is to get a small sofa so we can sit together.
For the last two years we have waived at each other across the room and that has a psychological impact on us.
Teresa did a lot of the grunt work, but I did all the spatial awareness and some of the heavy lifting.
I am exhausted but worth it
Did you know?
Today is the 2nd anniversary of the accident that screwed up my shoulders, coccyx, …, and the day, when I was lying in bed in casualty, when I was “unofficially” diagnosed with terminal cancer and subsequently given 2-3 years.
Well, the physical body remains a mess, more so, since although the accident damage is sort of healed, some isn’t and the drugs are ravaging my body.
But I’m still here, for now the cancer is chomping at the bit but not going anywhere (in 2 weeks we’ll get an update on that!!!)
So, more stuff moving:
First moved mobility scooter so it no longer obstructs our front porch – been annoying both of us since it went there months ago!
Second, fitted new hinges to shed door. They are not great and wood is rotten, but for now it’s OK
Also “someone” complained to the council that the plant growing from inside our property was taking over the pavement. Well it has been getting worse over the years and is “on the list”, but why complain to the council not just knock on the door! Worse it doesn’t narrow the pavement any more than the council did when they widened the road at the corner of our house!
We suspect it’s one of the “parents” who bring their children to school (I gather school was mentioned by the complainant). Which is rich considering the appalling driving, parking and general chaos that occurs on the school run (to the village primary and nursery behind the house)
Nevertheless, we sorted it. It has destroyed my shoulders and exhausted both of us, but done
Another exhausting day, but jobs done and I think Teresa has enjoyed our working together on the house. It’s not the same for me, but support is a mutual thing and we both need support from each other and support that is appropriate to our needs.
Quite a lot of pain in the shoulders from the weekend, and extra tired, but a good weekend even if I am paying for it now!
Expect confirmation I am out of SHU today. I have no idea how I will feel, right now I am somewhat “numb”, but I expect to be angry later.
Indeed, I am out, Teresa saw the email from the course tutor, came in incredibly angry at the attitude displayed in the Email, I can’t fight that sort of attitude. Of course, they didn’t say go, they were just sorry I didn’t understand their position and here’s how you leave (I had asked how, as a last resort).
I’ve got the message.
In the office, it’s been exhausting doing a full “walk” thru of the building with my wheelchair, checking fire exits, doors, … Virtually all the doors are too stiff for me to open/hold open while passing thru but they are going to try and sort that.
Straight to the venesection from work, fingers crossed it goes better than two weeks ago.
Oh no it doesn’t, see this from FB:
Four more punctures, …
Two weeks on from last venesection and four more attempts, #1 achieved a bit less than 200ml of blood (half of what’s needed), but the blood ran incredibly slowly, as in a tenth of normal flow. Next three attempts were total failures. I was seeing the haematology consultant afterwards and he has agreed to try for every two weeks (instead of every month) to see if it gets easier.
We shall see.
Q: Why is my blood playing up?
A: No explanation
Q: Why do I feel like a pin cushion?
A: Because I am, I certainly look like one
I made sure I was fully hydrated. The first time yes, I was dehydrated, this time, not going to take that chance!
Oh, and next week a blood test on Monday (chance to have some more problems) and on Friday a CT scan and they need to insert a cannula for the contrast to be pumped in. So, at least two more holes, though not sure where, running out of veins at the moment! And because I heal SO slowly (because of the cancer drug), it takes a long time before they can use the same vein again!
It’s what I try to explain to people when they say “you look so well”, that’s all surface, underneath it’s tough and exhausting, hey ho, onward and sideways …
This happens to me all too easily – the inside of a meltdown as an adult.
Yet another update, originally via FB:
A miserable day of Emails:
First, young Mr Biggles is at the vet for what Teresa calls “de-bobbling” which is really sterilization (or whatever the right word is), it involves anaesthetic, always a risk, going to be worried till he gets home this afternoon. [Update just as I go to post, he’s out of surgery and awake, all well, PHEW!!!!]
Second year anniversary of the accident and subsequent cancer diagnosis was Sunday just gone!!!!!!!!
Email to spinal specialist about operation to try to fix the pain in my coccyx (from the accident 2 years ago). Had to balance risk of damage needing me to come off cancer drugs while I heal and subsequent growth in the cancer, or live with the pain. Talk about devil and deep blue sea. However, would rather live with pain than risk cancer getting worse quicker than it already will.
Filling in form to officially leave the MA, sad and incredibly angry.
I will no longer attend the graduation for the PgCert (Year 1 of the MA) I did last year (with distinction) as “I am no longer proud of the University granting it”.
Most definitely a (originally an emoji of poo!) day (literally and metaphorically of course)
Mr Biggles is back home, full of energy, a tad (lot) obsessed with licking the affected area so we will keep an eye open in case he makes himself sore, otherwise, just keep grinding on through the day.
Yet more from FB:
The University have refunded the tickets for my graduation (for Teresa and my two offspring).
Ede and Ravenscroft refunded cost of gown and photos – didn’t expect that this close, full marks to them.
Official paperwork to leave the MA submitted, now got to wait for it to be approved.
Mr Biggles is very subdued this morning but we suspect both after effects of the anaesthetic plus the pain killer he was given will have worn off. He is also not really eating which is NOT like Mr Piggles. However, I have set aside a larger portion than usual for his lunchtime chicken so hopefully he will (as Teresa says) “do his habits”. He certainly did when I offered some as soon as we got home yesterday and again at tea time.
Severe diarrhoea, took Loperamide, shortly afterwards and again and took more, blah!
I have no ideas what (other than work) happened today!
I will be pleased once I have extracted myself from this MA, but I remain exceedingly angry and suspect that I will formally issue a complaint. I will wait until I have been “deleted” so that it’s not seen as me trying to “wheedle” my way back on.
It won’t make any difference, organisations ALWAYS protect themselves, complaints procedures (known as black holes) are to shut up people like me, not address the problems.
We have friends coming down to visit for the weekend. They are using the sleeper down from Paddington Friday night.
Major overnight storms. Friends sleeper delayed because of a trampoline on the line outside Cambourne (SP)
Yesterday, Tereasa rang Tate St Ives for disabled parking. Not only sorted (they only have one official spot which was booked but they also another space which they use as one. We got that – perfect.
Wind blowing like crazy, car park is at the top of the hill overlooking Porthmeor Beach and the wind was powerful. Hard to put my coat on Teresa had to help hold it for me.
Got the wheelchair out of the car and bits attached. Moved the car back into position (was pulled forward as ramps on side of van) and by the time I was sat in the chair the security folks had opened the entrance. Escorted me to main exhibition lift (massive great thing) down to floor three where we walked through main galleries (me looking at Lanyons on way) to meet in Coffee shop. Bean needed loo and didn’t spot loo was back by big lift, so all the way back, …
Have to say that Tate St Ives disabled service was superb, I never had to go through a door on my own, “stewards” opened for me. Disabled loo required two doors but not too stiff and with big grab handles to make life easier.
Restaurant, only one cake gluten free, only one main course ditto and I didn’t like that, however, I had my own food with me, lost income for them!
Home for a nap
Gonad (Gurnards Head) in the evening for a meal, again struggled with diet but they tried. I took Loperamide and avoiding the worst triggers was fine
All day we avoided rain – phew!!!
Pottered a bit
Long sleep in afternoon (2-2.5hrs)
Meal in evening at the Tolcarne – excellent choice of seafood and I can taste sea food again, yeah! I was careful re diet but not paranoid (after two doses of Loperamide yesterday)
As we got in the car to leave, I had to apologise to Teresa as it got rather “windy” INSIDE the car. Got home and yes, diarrhoea and another loperamide
Heavy sleep again. All this people lark (6 of us) is too much for me and it exhausts me – daft?
Blog 12-Oct out, will try and get the next two done this weekend if I can – a lot in one go, but only way to catch up, maybe send one by Sunday and other on Wednesday, I don’t know, what are you supposed to do?????
Blood test this morning, this from FB:
Had a blood test this morning, 1 attempt, one hole, blood flowed. Hooray! So, it was a little butterfly needle and not the great big thing the venesection sticks in, but just one fresh puncture and blood flowing freely felt really nice, a great start to my day – what a sad life I live when that is the highpoint!
I emailed the Tate about my experience:
1) Disabled access – this was superb, my wife rang on Friday to try and arrange disabled parking for Saturday and was able to book the non-official spot next to the main delivery doors.
By the time we had the wheelchair unloaded, security had opened the entrance door and we were escorted down to the main gallery floor.
The same in reverse, it was so painless it made such a difference.
Once comment, there is one lift from the Floor 3 galleries down to the semi-circular gallery with a big glass Window facing the sea (in the old part of the Tate). That lift has no mirror on the opposite wall to the door, it makes reversing out difficult.
The restaurant was disappointing in that it had very limited gluten free options, the rest of our party was OK, but I had to bring my own food – which was lost income for you!
The new disabled loo is fine but it is a very long way from the restaurant as well as a lift journey. That’s not ideal for me, but I accept you may not have a lot of options, but not having one where the ordinary loos are on floor 3 (as well) was disappointing.
2) The gallery
The place where Peter Layon’s St Just is hung is awful, especially from a wheelchair. It is a large painting and it is impossible to get any decent distance from it to see it as a whole picture. Even with issues over light, surely it can be hung so that it it can be viewed properly?
EVEN if it remains in its current location, the display cabinet containing sculptures in front of it could be relocated to make it possible to get a bit further away from it.
This is an iconic work and it’s such a shame it’s hung in such a way that it’s hard to get a good look at it.
From a wheelchair, that close I am already looking up at it, the further away I can get the easier it is to see the picture as a whole and not foreshortened.
If I sat directly in front of it, in my wheelchair, I would be a significant obstacle to anyone trying to walk past or view it themselves. I don’t because I just can’t see it, so I have to sit to one side or the other and look at it from the sides.
We live locally and I often visit the Tate St Ives just to view the Peter Lanyon pictures (and will spend some hours doing so on every visit) and every time I am disappointed that I can’t view St Just properly – all the rest are OK, it’s just this one!
I know I’m not the only person who finds that position unsatisfactory. I have looked at it from a standing position (behind the display cabinet) and it’s not great, from the wheelchair it is awful.
Please, please, please have a rethink and see if you can improve the situation.
In the office in Penryn, wheelchair to the fore. I just ring the office and someone comes and does the heavy lifting with the ramps to help unload (and re-load) the chair. It worked very well. The guys in my office opened the door for me, so no shoulder issues.
It worked so well that it was gone 1:30pm by the time I left (instead of 11am). However, Teresa hadn’t processed that I would stay longer in the office if it worked. So, when I hadn’t sent an “on way” text (something we both do, but I am the one that needs it most usually) and I didn’t get at home at the usual time. She panicked that something had happened and didn’t want to ring the office.
I had been away from my desk for her first message around 12:30pm until 1:40pm when I left and, in that time, she had imagined all sorts of horrible things.
Of course, I grovelled and mega hugs when I got home, but it mucked up the rest of her day.
Bloody cancer, it screws up everything!
Still leaving Sheffield Hallam University but my formal request that was submitted a week ago, has now only just started its journey through the system, still it has at least started 🙁
My complaints about disabled access seem to have gone down a black hole in terms of any response and there is no sign they will ever re-appear.
Got a response from the Tate
Many thanks for taking the time to send us your feedback. I’m pleased you found the building easy to access but sorry you were disappointed with other areas.
You’ll be pleased to hear that work will soon begin on installing adapted facilities next to the original toilets on level 3.
I assure you the other points you raised in your email will be forwarded to the necessary heads of department, and I will address them at our next access meeting.
Once again, I’d like to thank you for highlighting your concerns. Visitor feedback is hugely valuable to us and influences decisions made from the day to day running of the gallery to the more strategic planning of future Tate St Ives.
Of course, I will not hear anything more and I bet that Lanyon never moves! But if you don’t provide feedback nothing can change, which brings me onto SHU …
Hmmm, well that leaving form (from my autism MA at Sheffield Hallam University) seems to have been acted on fast, yesterday it entered the system, this morning my “login” to the University is disabled. I guess once they got themselves together, they were glad to see the back of me! Either that or “blackboard” is having a bad day 🙂 , but I suspect the former.
Later that evening I had an email telling me I had graduated! So, I guess that’s me being “told” 🙂
Just had CT scan, because there have been “vein issues”, they used a smaller cannula than usual. It went in easy and worked fine, but it certainly hurt when they pushed in the contrast. Smaller cannula, higher pressure they said (probably). Still could have done without it whilst lying inside a large doughnut trying to keep very still and not breath!
Still that’s two successful vein penetrations this week, fingers crossed for next Tuesday’s venesection!
As always, I am left exhausted by the process and wiped out for the rest of the day.
[As I edit this, I remember that there was no scan of my neck this time – consultant didn’t request it, whilst there is additional risk because of more X-Rays, it would have been REALLY useful if they had done it when I had problems a few weeks later (23-Nov-2019)]
The willingness (or rather lack of) from SHU to actually engage with me, understand my concerns and see if we can reach a mutually satisfactory resolution just does not seem to be there. From what others have said, this is probably institutional but I say it is pathetic, let’s call a spade a spade shall we?
Did some cooking – a FODMAP version of what we used to call the “red” curry, basically a Thai Red curry paste, chicken and prawns.
We assembled the new TV Table, so the old one could move to the spot between our chairs.
A long sleep after that physical effort (well a lot of effort for me anyway)
Swapped the TV table over, not of itself a difficult job, but help from a certain Mister Biggles, made it more difficult than it needed to be 🙂
Bit of blogging
Changed Teresa’s loo seat (replacing mine still outstanding, probably a year after I bought the replacement). Another exhausting task.
Bit of blogging
No idea other than in my office working
So, venesection this morning. A full (or darned close) 400ml.
Was dark as sin and slow – took a good 1/2hr (usually 10 mins) but we got it out. What a relief.
The nurse was struggling to make sure she hit the vein she wanted, it “disappeared” as soon as she took her fingers off it. So, she put an arrow next to it. This photo is a day later so a bit more faded, but you will notice, no bruise either.
I was impressed when I had surgery on my ankle they wrote “this one” while I was still awake so we were both in agreement which leg to cut open.
I think writing on the skin just to be clear is a brilliant medical advance!
Going for another 400ml in 2 weeks’ time and fingers crossed.
Sore, but not a pin cushion, going to be wiped out for the rest of the day but it’s a good day, I was dreading this morning.
On the other hand, scan results tomorrow, that really is a day I hate.
Update, I know it’s just a venesection, just like a blood donation, but my body is so screwed up that I was very tired when I got home, had lunch, afternoon nap for 1.5hrs, moved the car so I can charge the wheelchair, then another hour to come around. Trying to work but just feel sick and tired. It really shouldn’t affect me this way, but it ALWAYS does, just a reminder of how difficult the drugs I take really are. Also, I try to keep it in the back of my mind but those scan results tomorrow, … it takes a moment’s inattention and …
Just done cancer clinic. Primary on Kidney shrunk a bit. The secondaries (lots of them) stable.
Teresa tells me that’s cause for joy. I don’t do joy as far as this cancer is concerned. But not depressed
Bizarrely, the consultant had only left prescriptions for my drugs for 2 months but the doctor seeing me didn’t know why so tried to speak to consultant and in the end just did a prescription for the 3rd month. I hope that doesn’t mean something?
Worse, the pharmacy only had two months of the drugs supplies on their shelves, so gave Teresa one months and said they will ship the rest to our GP’s pharmacy.
This is the renal cancer drug most often prescribed at Treliske, how could they possibly run low?
Maybe all that fussing by Bean over availability of drugs wasn’t just a load of fuss about nothing?
[UPDATE: actually things were NOT good they’d missed the bad news, see later blogs!]
From Treliske we went to Exeter for a concert by the Oyster Band and June Tabor.
Concert was at Exeter Corn Exchange, not somewhere we’ve been to before. There was a small “underground” car park at the venue and others around, including some open-air ones.
Now first we had to decide whose car? Teresa’s fits into limited height, Angelique does not. I prefer my car, apart from anything else it’s less of a problem with leg cramp but I need an open-air car park (even some of those have height barriers!
The Exeter owned car parks were free for disabled, the NCP one at the corn exchange £15 for the day
Anyway, biggest decider was rain and there was plenty forecasted and sorting the wheelchair in the rain is plain miserable. So, we decided on the NCP one. It’s a very small car park and as we drove around it was full until we reached the last space, the ONLY disabled space and result! It was empty. In we went.
We had a good day mooching around the shops without too much difficulty with the weather. I tried hard to stay hydrated but that means stopping for the loo every 10 mins (well it felt like that).
Time for tea arrived and it was raining and then I spotted an Italian place Bella Italia there was a step, but they had a ramp, somewhat rickety but it worked.
They had a gluten free menu AND a lactose free menu. Not some paper thing but a full-blown menu. Full marks to them, I ordered from the gluten free. There was still some onion but I took some loperamide and that seemed to do the trick.
Went back to the car park top unload the shopping, the doors opened at 7:15pm (for an 8pm concert). Teresa and I were sure the outside shutters (yes it was a rough area) would open before then, by the time we got there at 7pm there was quite a queue developing and those shutters were down.
Getting in was “fun”, a wheelchair sized lift to the first floor – no problem but Teresa didn’t fit in it, then a larger (goods like) life to the next floor. We both fitted in, but I had no faith it would work. It did.
The venue themselves were fine they just removed a chair from the end of the row (where we had booked) and I was fine.
We had forgotten to specify disabled when we booked months ago, but Teresa rang the venue a couple of days before and although they had allocated that spot, they moved them (it was for artists) and let us have the spot. Full marks.
The disabled loo was OK although a couple of tight turns, but the door to get in there from the bar area (not the loo door itself), was so stiff I couldn’t open it, I had to get passers-by to help. Going in not too bad, coming out I had to try and push it AND attract attention, it was not easy but still, it worked
Fantastic concert, not typical loud Oysters but more lyrical and for me more listenable not being wound up to 11.
Teresa also preferred it that way – you can hear the words which is what matters for her.
All in all, a good day, but a long (3hr) drive home and 2 diversions off the A30 for roadworks did NOT go down well.
We got home at 2am and crashed out!
Wiped out after yesterday
Just work in the office
Facebook threw up a year old memory, which was a present from a friend in Cambridge (an LGBT poo)
Still on my desk grinning at me every day.
A quiet day, but we are trialling xmas dinner, for the dietary challenged.
Two big issues – no veg (well a few carrots but not Brussel sprouts which is sacrilege) AND gluten free Yorkshire puddings.
Ah the Yorkshires – they did no work well, just substituting gluten free flour for proper flour left me with thick heavy lumps that were more like polenta.
We will try that again; Teresa has found a better recipe (we hope) and we’ll do at least one more trial run
Gravy was OK, needs tweaking but will work.
Should have been graduation and happy day, instead, …
In the office, wheelchair doing well, crash out when I get home
Dash to Plymouth for a meeting with the surgeon “sorting” (we hope) the coccyx pain. Appointment was changed at the last minute from 5:30pm to 1pm. The phone call was at 10:45am, rapid dressing and getting ready and quick driving (for me, still 70mph or less) in appalling conditions – wet and windy, but we made it with minutes to spare, phew.
Mega tired after yesterday
For goodness sake, not sure if it’s still true, but in my youth a disco had women dancing together (around their handbags) and men standing around drinking until they were drunk enough to ask!
Clearly, we need to tell all Morris sides to stop that sort of shenanigans because I’ve yet to see a mixed side “couple up” and as for single sex sides, well, …!
I was diagnosed in A&E and I wasn’t there for anything to do with the cancer, it was an “accidental” discovery by a sharp-eyed casualty consultant – thank you! That said it’s a grim place to find out, that said the subsequent Oncologist visit where it was confirmed was pretty cold too – yes you have cancer, yes, it’s fatal, here’s some drugs that “might” slow it down, come back in three months!
Teresa did a nice “fodmap friendly” baked potato recipe.
Later on, that evening massive poo problems, may or may not be relevant. There are some left over so wait and see, always dangerous assuming cause and effect (in anything!)
Much of this is old news now and/or already been on Facebook, however I do like the idea of a continuous “diary” even if nobody really reads it. So long as the blogs stay alive, so does my experience. That said, when I’m gone, that’s down to Teresa and then my children if they can be bothered 🙂
The Bean, Pendeen, 04-Dec-2019