Belated blog for 30-Jun, 7, 14, 21, 28-Jul 2018
Gus was the Cuddle Bucket supreme, we do NOT forget him though he died a number of years ago
Well, this is the longest gap between blogs ever and the largest number of days included in one blog! I’m sorry that so much of this will seem like history to you, it’s still very real for me as I read it through again to do the final edit before a quick pass by Teresa (or not, she is very busy just now)
To help you remember, the week before this I’d had some “good” scan results, though Teresa and I disagreed on what “good” meant and I hadn’t (yet) done my Litfest Talk.
Still a mess post scan results, you may wonder why getting “good” scan results is somehow “bad”. Well, take the stress that builds up whilst waiting to getting the results (doesn’t matter how good they are, that emotional load has to go somewhere!) plus this heat which is particularly bad for me, the cancer drugs (Paz) seem to make me VERY sensitive to temperature and I am much more fatigued than I normally am.
Finally, in my world ‘good’ scan results this time doesn’t mean they won’t be bad next time, so it’s sort of an ever-repeating circle:
- Worry that the next scan results will be bad
- Get results, find out that they are good
- Go to 1)
For some people, like Teresa, for most of the three months between 2) and 3) they can be happy that things are good; for people like me, the time spent between 2) and 3) is a very close approximation to zero. This corresponds to two different coping strategies:
- Hope – for the best and deal with the worst when it turns up
- Realism – expect the worst, be ready for it and be content it wasn’t “this time”
Both work, but for different personalities. Teresa and I are excellent examples of both, neither are wrong for themselves, though they would be wrong for the other person.
Still a mess
Most of a day’s work done but still mega struggling
In the office in Penryn but really exhausted and left earlier than usual.
Struggling to get work done. It’s like fighting through treacle trying to drag the thoughts and ideas in my head and getting them to my fingers/keyboard.
As well as work, I need to be prepared for my presentation at Litfest, but I don’t feel I am. Still, needs must, I’ve been making notes about what I want to say and have given them to Teresa,
Today is my presentation at Litfest. I have finalised my notes – they are now very different to what Teresa has – she is already there, so I’ll give her a copy when we meet up.
I start the session with a piece of music (Sound of Silence by Disturbed), there will be a post about it later ) as part of my process to teach people about emotional disconnect, also about language, hearing not listening. Chances are I will fail, but I hope I am able to give some sense that my processes really are a bit different and hence help people be more open as the session goes on.
Of course, parking was uppermost in my mind and Teresa and I agreed the best compromise for me, the one that would be the least stressful. It required me using the ’lawnmower to get around and as I needed her help, we agreed a meet up time in the car park to unload it. I say compromise, but I am afraid she had the most compromise to do 🙁
I drove down to the car park in Pz where Teresa met me. We unloaded the lawnmower and I trundled down to Penlee Coach House in plenty of time to get myself organised.
As is always the case, I have no idea how it went, but I did get to meet a number of friends including Julie who we haven’t seen for over a year. After the session was over, and there had been some chatting, we three went off to the Café at Penlee Gallery and had tea and cake and a natter. I can’t say I was altogether with it, but it was a nice time.
I could feel diarrhoea heading my way on the journey home – fortunately I made it back and to the loo before it struck, phew!
Looking back at the presentation after I got home I had an overwhelming sense of being a failure and a fraud, that I’d embarrassed myself and those who came to hear me. This is not unusual, but it was particularly severe today as it was such a difficult concept to communicate, the idea that you don’t have words or images inside your thinking process is an alien one to most people and hard to even conceive. It was (I felt in retrospect) arrogant of me to think I could!
I so wanted to say that publicly (by Email, Facebook, Blog), but I managed to resist the “need” to do so, I have been here before and I knew I had to wait to talk to Teresa who was still busy working at Litfest. Teresa would give me some perspective.
Teresa came home later that evening and I told her how I felt – she was cross/understanding and disagreed with me and said there had been a lot of positive feedback. Didn’t help me, I know how NT’s (Non-autistics) are so polite, I needed an autistic I could trust to say how it really was without being “nice”.
I was in tears.
Overnight I saw posts on a neurodiversity Facebook group saying the same as I was about their own experiences of similar events (I hadn’t said anything, so this was just synchronicity).
Because the way I talk publicly (and privately for that matter) is like a runaway train (or car, see later), I just don’t have the time or energy or focus to look at how well I’m controlling the train, just controlling it takes all I have. That means preparation is key to any presentation, indeed any contact I have with the outside world, the more prepared I am, the more I can concentrate on handling the social situation (runaway train) and not worry about what I want to say. The downside is that I can easily miss a bump in the tracks I hadn’t prepared for and then things don’t go so well! That’s why it’s so important to have Teresa with me on these occasions – she does her best to pull me back, although I don’t always listen 😊
It’s very hot again today and I am wearing one of my new, really light, summer dresses: cool shoulders, plenty of air, legs out, what’s not to love? All that, plus colour! Men are just so boring, unfortunately rather too few women take advantage of what’s possible too, sometimes often because their perception of their bodies don’t fit a stereotype of “looking good”. Who cares? If you like who you are, the others don’t matter (easier said than done for non-autistics who are more controllable by peer pressure). I quite like being a bit of mutton, not as flash in the pan as a bit of lamb, but cook me nice and slowly, well, …
That presentation for Litfest was delivered how I write, whether that is obvious or not.
It is an out of control vehicle careering into bends, getting around them on two wheels (like my Landrover did the day of the accident), travelling far too fast (which I wasn’t on the day of the accident!) with no brakes.
Well there was a brake because I insist on having an emergency brake called Teresa whose job was to ensure that I don’t actually crash.
But, for me, not only is it a mad experience, I am so busy trying to stay on the road (on topic) that I have no time to perceive what is actually happening, it takes all of my processing ability to make it through.
So, once it is all over, I have NO idea what happened and people’s reports, often complimentary, have no connection to my experience because I was so focussed on a crash landing.
My experience of that day and of these blogs is, I suspect, , very different to yours. It takes all I have to do the communication bit, it’s just too much work for me to understand what I’ve done, even in these blogs, if you can get your head around that then you are a far better person than me :-).
Just a thought, in case you are saying, “but you can edit writing and fix the bumps in the road”, that would be true for many, but for me the editing process is just as much a runaway car (train) and just as out of control. I may catch some problems, but then I often add new ones. I have said before, I always edit from the beginning, that’s because that’s the only way I have,
- go to the top of the hill,
- release the brakes,
- gun the engine
- hope I make it to the bottom in one piece
- back to the top of the hill.
It IS as exhausting as it sounds
The Bean, Pendeen, 07-Jul-2018
It is still mega hot and I want to make some meatloaf.
Fortunately, a new fan arrived today for my upstairs room, so, before moving it upstairs, I put it in the kitchen so I could make my meatloaf, Teresa being away at Pz Litfests’s last day.
Got the meatloaf made no probs, and my shoulder handled the manual mincer better than last time.
Got a good half day’s work-work done too
Teresa is recovering from Litfest so mainly snoozing in the sitting room, I managed almost a full day of work and so back on time for the week
The heat makes work difficult
I lost admin access to blogs/Wordpress. Eventually fixed but had to restore an older backup and re-input the last few blogs – hope I got it right.
Also, performance (of our website) is hopeless, I prodded the hosting service – not happy with responses, researching alternative.
Indeed, I suspect these two events are not unrelated and a Wordpress update got corrupted because the server was so slow.
Made a malt loaf based on a recipe used by wife #2. Teresa has been trying to make malt loaf for me; so far it’s not been right for me, although it was for her. This one was more right for me and further away from her liking, it was also too sweet. I’ll reduce the sweetness, but it’s going to be something for me not for her which is a shame, it’s not complicated to make so I can just knock it up.
Too tired to feel safe driving home from work at lunchtime, so postponed until tomorrow
In the office in Penryn
I posted an earlier version of this on our closed Kidney Cancer Facebook group but wanted to capture it permanently here. I know there are some people who find this blog or my public communication about cancer difficult because I am so open, I am fine with that, we all have to cope in our own way, the following extract is detailed, skip it if that makes you too uncomfortable – just uncomfortable is fine, I’m not comfortable with it, but I’d rather stare it in the face than blink and turn away, that’s my way.
I know some people don’t want to know what’s happening inside them, no problem, move right along, this post is not for you.
If you get bored easily, I do write at length, so you probably want to pass on by too. No problem, I am constantly being told I say too much, but it’s who I am and how I fight this bloody disease 🙂
I am bright but I find the language used on the scan reports confusing, especially when different terms are used for the same thing, as for when they make a mistake!!!!!
So, it’s over eight months since the accident and diagnosis and a few weeks since my latest scan and I felt up to trying to get a better understanding of what exactly is inside me, because what the scans say and what I’m told in clinic just don’t seem to be the whole picture.
So, I read the last four scan reports, made a list of questions, talked about them to Debbie my cancer nurse and did a bit of googling and so:
1) At Treliske, if the size of the largest Met (secondary tumour) is greater than the size of the tumour on the kidney (the original), they don’t operate. With a small (3.1cm) node on the Kidney and “significant tumour burden” elsewhere including a 4.5cm met on my shoulder, I failed the test and they wanted me on TKI ASAP. OK, I can get that
2) In any case given the injuries from my accident they wouldn’t have done surgery anyway!
3) I only have cancer in my Lymph nodes (so far 🙁 ). So, as you walk up the lymphatic system from the Kidney I have
a) Small volume para-aortic nodes
b) Bulky mediastinal lymphadenopathy
c) Bulky Right supraclavicular lymphadenopathy
Lots of bulky in there! Basically, it’s in there all the way up the core of my body.
I found this picture that shows one of the sets of Lymph nodes in the body, helpful
4) My latest scan also referred to a “Right Clavicular metastasis is unchanged” – I thought WHAT “Right Clavicular metastasis?” I panicked, not heard of this one before, it turns out that a slow healing, non-unionized collar bone break looks like a f***ing great big tumour on a CT if you don’t know what it actually is. BE STILL my beating heart, that was a scare.
5) I asked if my coughing is a problem and was told, the nerves that control coughing are in the mediastinal area, so if you have tumours there you can end up coughing, also hiccoughing as well, I do the former a bit (few times an hour maybe, no blood) and the later not at all (yet) but now will keep an eye on it in case it signals growth in that area.
6) When I asked if anyone was concerned about “slightly enlarged prostate” on the original scan report, or how the TKI’s would slow down recovery from the accident. The answer, with a bit of reading between the lines seems to be.
We didn’t (still don’t) care about any of that, the renal cancer will get you long before you need to worry about prostate and the broken bones won’t kill you at all.
Fair enough, they did say life limiting 🙂
7) Last scan didn’t catch all of the shoulder met (the biggest) so, in future they will be told to scan the neck as well to make sure they get the top of the shoulder – see 8)
8) The stiffness I am getting in my neck is probably muscular as a result of stress to the shoulders and neck from the accident and recovery, and to get GP/Physiotherapist to give it a poke and see if there is any “mass”. OK, I agree with that summary, BUT, darned glad they are scanning the neck next time just in case that bastard is creeping up my neck and/or around to the other side of my neck. Bloody sneaky is renal cancer, I don’t trust it one bit :-). Sorry, my head is out of bounds, you stop here!
Well, that’s a snapshot, the situation for people with Renal Cancer (and indeed others) varies from kidney removed and no mets, to mets in the bones and brain and drugs not working and all stages in between. I wish I was at one end, glad I’m not (yet) at the other and will continue to fight, but, some days it’s tough knowing it’s a battle you can’t win, just fight to put off the evil day as long as possible.
Today is one of those tough days .
The two favourite places for this cancer to get nasty are the bones, where I’m clear and the brain which they won’t be looking at until I complain of “something”.
So, to avoid medical language, I am fucked because
- There’s no chance of getting rid of all of the buggers by surgery and/or radiotherapy.
- Chemotherapy doesn’t work because there are no drugs that can kill this particular cancer 🙁
So, that’s why I need to take drugs that try to slow or halt the tumours’ growth, and put up with the side effects which are pretty grim themselves, just not terminal! Actually, the drugs I take can kill you, that’s why we get monitored so closely. Paz, for instance has a particular liking for killing the liver and pushing the blood pressure dangerously high. I monitor my blood pressure every day, take drugs to keep it down and my liver function is tested every three months. So far, all fine in that department.
Given this cancer’s enthusiasm for learning how the drugs work and finding ways of beating it, the drugs don’t work forever and hence why I end up with a limited life expectancy governed by how long the drugs work for my cancer in my body.
Got some work done
I continue to be told how good I look and I continue to be frustrated that this can mean that people have a false optimism as to how well I am doing or of my destination.
The Bean, Pendeen, 14-Jul-2018
Off to Marks & Spencer’s (8am) to collect another two of my lovely cool dresses
Then to a Garden Centre so Teresa could get some plants. I tried walking around with her but was so tired, especially in the heat, that I went back to Angelique. Fortunately, I had left the lawnmower (albeit without arms for the chair) and a charged battery so I could scoot around in it looking for plants with Teresa.
I have wanted to grow some tomatoes for ages so, even though it was rather late in season, I found some bush toms in a pot, bought three and a growbag to see if I could get anything out of them, don’t mind if it failed, just wanted to prepare the ground (growbag) for next year. We had a great time scurrying around the plants without me getting tired.
Suddenly, about 11:30, I hit a (physiological) brick wall and had to stop and eat. I whizzed around to the disabled entrance to the café, leaving Teresa shopping. This is an example of “looking good” not being a real reflection of how I am feeling. I had to tell Teresa how I felt (which I always do) and then had to persuade her to continue her shopping and that I was fine to scoot myself around to the café. Not having been to this cafe before, I was REALLY worried about doing so, but I even more needed Teresa to enjoy herself!
The staff were brilliant. I order a ham and cheese omelette, some water and a hot choc. One member of staff took my water, napkins and cutlery to a table outside and I drove myself to the table; another brought my hot choc shortly afterwards and another my omelette shortly after that. Brilliant service without a quibble and with a smile, full marks!
I felt much better after that. Teresa eventually joined me and had a bit of cake and then we headed off home.
Planted my toms and then cut down one of the Cornish triffids (not sure of their proper name but they grow like topsy) in our courtyard. Then I decided to have a go at the BIG one in our front garden,
I got a bit out but was then shattered and did nothing for the rest of the morning.
Then, during the afternoon, I decided to have another go and made a bigger dent in the larger Triffid, but am really shattered now!
That’s the reality of the fatigue, I CAN push myself but I have to do it in MUCH smaller portions than it feels I can at the time, because the consequences are disproportionally severe if I get it wrong. I went too far today.
Works outing at the Stithians show. We made our own way there, and Teresa was allowed to come along as my carer. It absolutely heaved it down with rain as we drove there and carried on after arrival. First rain for weeks! Still, it eased off quite quickly and was baking by the end of the day. I had to use the lawnmower and had my sun hat on and was twice advised by ladies that I was going into the men’s loo :-). Since there wasn’t a disabled handy, I continue my policy of using a male loo even though most people assume I am female by appearance (especially when sitting on the lawnmower and wearing a hat).
Teresa loves goats so I made sure we went to the goat section, she was ecstatic and had a brief flirtation with the idea of getting a pygmy goat…
A nice day out, but again would have been impossible without the lawnmower.
Very tired, but that’s to be expected after yesterday.
Dreams of blood in wee (one of the signs of Kidney Cancer, which I’ve never in fact had; prostate too, …)
We took Angelique over to Firehouse as the Aircon had deteriorated again and been useless for some time – frustrating in such hot weather. Hopefully Owen and his Aircon team can get on top of it this time.
While taking my blood pressure at around 8pm I was hit by remembering Gus’s last day (Gus was Teresa’s Red Point Siamese and a bigger Cuddle Bucket you would not find). It was a very emotional time, having to make the decision that he was suffering too much. The memory of that decision reminded me that Teresa and I face that same decision about me somewhere down the line!
Dreams of being asked to participate in some home-grown (by a consultant I don’t know) trial of a combination of drugs for Renal Cancer.
And here I stopped making notes and am filling in from my spaghetti memory.
We are off to Warwick Folk Festival next week and my worry is growing. We don’t yet know the state of Angelique’s aircon; I know Owen will get it sorted and look after us, but after our journey back from Gower Folk Festival in the heat without aircon, I also know I cannot handle such a journey again and would have to cancel.
The general heat at the moment is exhausting to a level I cannot describe. I know how heat normally affects me, this is a whole new level, take the chronic fatigue from the TKI cancer drugs (Pazopanib, in my case) plus their generally screwing up blood flow and the intense heat, and the effort to do anything is overwhelming and I have to keep going at work and so I do, but outside of those hours in my office I just don’t exist.
It’s an incredibly high price to stay alive, but the heat will ease off and it’s a darned sight better down here in West Cornwall than it is up-country and certainly East Anglia where I was working only a couple of years ago.
Plus, I’m rather keen on staying alive, so I accept the price, but that doesn’t make it less tough. They always say that the heat affects the elderly and infirm, I guess I now qualify for that warning. Winter and plenty of heat is just expense (for wood and oil) 🙂
I cannot cope with this HEAT is all I can say. Well not quite, a lot of my worry about Warwick is that I am already limited in what I can do, in the heat even less, so even more pressure is put on Teresa. My history is of sorting out caravans and campers single-handed leaving my respective spouses to sort out the lightweight tasks. Now Teresa gets the lot, while I sit around and give orders. I hate it.
Update from Owen, the Aircon is sorted so fingers crossed.
Otherwise my mind is blank
Angelique is back, the Aircon does seem sorted, time will tell if the fix holds but Owen and I agreed a Plan B if it doesn’t that will sort once and for all, he has been wonderful.
Otherwise my mind is blank
My mind is still blank other than late afternoon we packed up Angelique ready for her trip to Warwick in the morning.
Off to Warwick – see the festivals blog when it’s released.
Here in our local area (and elsewhere) I know there are some that take very extreme attitudes against Gender Diversity, bordering on the hysterical. Whilst I can understand their concerns, those concerns usually relate to those in the transgender community who do not balance their own rights and responsibilities. Such people do not speak for the majority and those who take an extreme attitude in response to them are missing their own responsibilities towards those who are not extremists and do accept that rights and responsibilities go hand in hand.
A reasoned response to extreme behaviour is NOT an extreme reaction, extremism begets more extremism. Ghandi had the right idea, albeit taken to the other extreme 🙂 . We cannot solve our problems in society with nuclear weapons but with gentle conversation, escalation does not help and certainly negates any belief that you have the “right” moral high ground.
This is the day we were originally planning to come home (see Festival blog, when it comes) so I treated it as a rest day and “chilled”
Back to work, but only in the office at home
Visited the GP and got him to:
- Check my lungs, I was worried about a ‘crackle’ but he reckons I’m, apparently, “sound as a bell”. Which is itself worrying as why would my lungs sound like a bell?
- Calf spasm (cramp) but TKI’s (e.g. Paz) do trigger muscle spasms in general. I was prescribed quinine and on reading the side effects (which I always do now as I take so many drugs they can interact!) This one lists one of the side effects as death!!!
- Got copy of last letter from clinic, it talks about a higher haemoglobin- to be watched. Never said anything in clinic when I was there. Why will they not tell me what’s going on? Oh well, I’m pretty sure it’s down to the fact that after the accident I learnt to breathe very shallowly (anything more hurt, due to the broken ribs) and that means I probably still don’t get enough Oxygen in the blood and it’s compensating. Will monitor Oxygenation (simple device on the finger) and do some breathing exercises. However, this is all off my own bat, nobody advises me to do this which I guess it’s all part of the “well the cancer will kill you first” approach? 🙂
- …Check my neck i.e. massage to be sure there are no further mets in there. I’ve had a stiff neck for a while, so just wanted to be sure that’s all it was, not something more sinister. Doctor found nothing untoward so all ok there.
In the office in Penryn, then on the way home pick up son and girlfriend from Penzance railway station – they’re down from Bristol for a few days break
Just work in the office.
Called Debbie (Cancer Nurse) to check why the letter to the doctor said Diagnosis is Metastatic Renal Cancer – well that bit’s right – with Metastasises in the Lymph Nodes (which I have in bucket loads) and the bones – which I didn’t think I did. Talked to Debbie, it turns out I don’t.
Talked about fatigue and the only recommendation is half an hour’s exercise a day, but not to overdo it so recovery time is short.
So, that’s what I intend to do
I have always struggled with people’s inability to understand that rights and responsibilities are two halves of the same pie.
Advocates always focus on their rights and other people’s responsibilities. In a sense I can understand that because minorities often find their rights ignored by a society that has its own concerns. So, yes, “we” (whoever “we” are) should stand up for our rights, BUT that doesn’t take away the requirement for us to take our responsibilities just as seriously. The fact that the other person doesn’t take their responsibilities so seriously is not solved by us doing the same. As I said earlier, extremism (which includes extreme reactions by people who would never consider themselves to be extremist) can only encourage extremism in response.
I am not so naïve as to think that the pacifist way, turn the other cheek, is the only way, BUT, in my experience, an awful lot of people are basically decent and so my first reaction is always to assume that behaviours that are difficult for me are not out of badness but out of lack of understanding, and so I try to educate first and only shout when that fails. Even then, I try to remember that I’m not innocent in the world of discrimination, none of us is, so we should all be careful about thinking we can throw as many stones as we like inside the glass bubble we live in.
Sermon over 🙂
p.s. when I say my mind is blank that is a Literal statement, there is nobody home and I cannot communicate!
The Bean, Pendeen, 09-Aug-2018