Letter from the North

Strictly is over, was that my last. Scan results vague – 15-Dec-2018

Sorry I failed to get this out on Sunday, as you will see next week, the run up to Xmas got stupid exhausting for me! 

Sat 15-Dec-2018   

I am now on holiday (from work) until after the New Year, however I have the first assignment for the autism course to get done. I have had a month’s “break” but that leaves only a few weeks to get it done and I am struggling to get my head into gear. So, I may not be working this week but I will be studying very hard and given that involves reading/writing, that will be more intense than my day job, language NOT being my thing as anyone reading this will know, more to the point academic reading/writing is MUCH harder because vagueness is not acceptable 🙁 . 

Not sure how rested I am going to be! 

Just a bit on Autism, Do autistic people ‘get’ jokes? It gets better over time and we do have a different sense of humour so it can seem like we don’t rather than your joke isn’t funny for us and vice versa 🙂 

Had yoghurt and benecol yesterday and the poo is in full flow this morning. 

Well, it’s taken a few days, but this evening Barney climbs onto the short (1m high) bookcase next to the tree and hurls himself up to the top of the tree (ceiling height), clearly felt unsafe and leapt back to the bookcase, to the floor and wandered off in to the kitchen pretending nothing had happened! 

Teresa was really proud of him, me, hmmm, … 

Still the tree survived with no “damage”, those granite blocks did a good job! 

Evening and constipation returns, will test again tomorrow but yoghurt seems to be a clear antagonist. 

We watched Strictly (come dancing) this evening, not unhappy with the result, clearly the final is a popularity contents (public vote only) but at least the dance-off in previous weeks ensures that the best dancers make it to the final so it doesn’t really matter, it is after all TV not a real contest 🙂  

Still it’s sad for me, this time a year ago I didn’t think I’d make another Strictly. This year, now it’s over, a year is a long time and I cannot be sure I will see next years, I’ve written before about “anniversaries”, well after the day of the accident that started my “journey” (that hated Strictly word) watching Strictly is the first of those and ahead of me are all those possible “last time” events, it’s hard keeping your head in today and just enjoying tomorrow if it arrives, because part of the enjoyment is anticipation and that I dare not allow myself 🙁 

Four days to results 

Sun 16-Dec-2018   

Constipation is still here. 

Got last week’s blog out this morning, good I am managing to maintain my weekly releases, whether they are comprehensible is another matter. No matter how sure you are that you understand, remember I can substitute words without realising and that can give the totally wrong message – that includes switching positive and negative statements! Always keep that salt cellar handy in case you need a pinch 🙂  

Although I had a yoghurt with lunch, poo is still difficult at the moment, more lumps of granite than smooth “plops”, so maybe we also need the Benecol. Tomorrow will try the “normal” regime and see if that kicks things off. 

It’s awful trying to manage something where there is an unreliable delay between what you try and what happens, sometimes of days not hours. A lot of the problem is dietary in terms of “aggravating” factors. The drugs however provide the baseline diarreah/constipation factors and are themselves in a constant battle between each other for control of my digestive track. They seem to use my diet as pawns in their battle and nobody seems to care about the poor digestive track itself or me in who it resides! 

I did manage to get all my presents for Teresa wrapped, that includes my contributions to her Christmas stocking (we do stockings in the morning and presents after Lunch). Fortunately, my daughter has taken on the role of Teresa’s stocking or there would be no surprises for her at all. Thank you daughter 🙂 

Three days to results 

Mon 17-Dec-2018   

Well, nothing happing on the P department this morning, so tried a softener to see how that works, it usually only takes a few hours if things are “marginal”, so fingers crossed and legs uncrossed 🙂 

Nothing happened, had a Benecol yoghurt drink at lunch and mid-afternoon there was a solid splash so something happened but I would call that barely released constipation. 

All quiet, had poo pie (Lasagne) without the Lentils, Teresa having decided I didn’t want them as we suspected them of causing diarreah, I never said that I just said I would take some Loperamide for “protection before eating it. I also had a yoghurt with tea. 

Oh boy, did the flood gates open around bedtime, three, increasingly sever Barneys (like weeing from the bottom!) and took an Imodium Instant to slow things down. So, clearly “something in that mix (plus the apple and pear juice I had just before tea) triggered things. 

Tomorrow I will have Poo Pie but no Benecol, yoghurt or juice and see what happens. 

That diarreah REALLY knocked the stuffing out of me, I had felt quite good (for me) all day till them and afterwards I felt awful, mega tired and feeling generally poorly. 

Oh well, tomorrow is another day. 

Two days to results 

Tue 18-Dec-2018   

Well, I have got out my “Jazzy Xmas” sax tunes book (and play along CD) and will see if I can remember how to play the Sax (an Alto so nice and light) and generate some Xmas spirit, might need it after tomorrow 🙁  

I cannot settle to doing anything, even urgent things (like my assignment) all I want is to “know”, good or bad, just know. Teresa had trouble sleeping last night, feeling short of breath, she felt the same three months ago. Indeed, three months ago she was sick on the way to get the results – I had to stop the car so she could be sick. 

You cannot know the stress this three-month cycle brings with it, knowing that every cycle, the chances of bad news increases. We’ve been doing it for a year now, that scan last week was my fifth, it’s 14 months since the first with the bad news lying on a bed in casualty. It’s called scanxiety but that sounds like being anxious before a visit to the dentist. 

I remember that moment when the Mercedes Sprinter hit me and the worry about what was going to happen because I knew it would be bad (I was lucky it wasn’t that bad in the scheme of things), that was child’s play to wondering what the scan will reveal, even worse because it’s not for a few seconds and then, yes, I am alive. It’s stretched out over weeks, then days, then hours, then minutes, then seconds as you wait to be told. Waiting while they ask “how are you”, “stressed out of my bloody skull waiting for you to tell me something” is the answer, but no, you tell them how you are coping with the drugs, any new symptoms seen, you are a good little patient, all the while screaming at them to tell you, just tell me. 

Teresa goes through the same, it’s no surprise we don’t sleep well, have difficulty focussing, throw up, it’s a surprise we function at all. 

We may not be conscious that’s what happening to us, I’m NOT living every minute of the day worrying, indeed virtually all the time I am barely aware of what tomorrow is but “my body knows” and it is reacting whether I chose to or not. That’s also how PTSD works, it’s the body reacting not our consciousness, you don’t have a choice.  

There is a fascinating book on PTSD called “The Body Remembers” that describes this phenomenon! PTSD is not just caused by violent acts, the impact of being diagnosed with a terminal illness (personally or for a loved one) has just as much potential for trauma, and PTSD is not something you as the sufferer are necessarily aware of, it is often only seen by others when it is triggered.  

Don’t think that just because someone “seems” to be handling it well (as people do about me), don’t even be fooled when they themselves think they are coping fine.  

The body knows. 

To change the subject, well a bit, another Bean hobby horse – Male breast cancer, in this case both partners had it, she died, this stuff is crap and the only people who really know how feels is those going through it, the “experts” have to run a sausage machine even if some (many?) would rather give individual care, they don’t have the time or resources, so the rest of us need to be there to help, inform, support. If you think his reaction was extreme, I don’t, nobody can know how desperate we are unless they are there too. 

Male breast cancer: ‘I tried to cut off my breast‘: Cancer is normal, we need to talk, surely this bloke could have had a lot more support from those who have been through it themselves and not left to feel isolated because he was the “wrong” gender. Cancer, in whatever form, is not “easier” for anyone, gender, age, …, it doesn’t care who or what you are. 

 

Almost tea time, I sure this non-lentil Poo Pie (Lasagne) works as I feel very bloated and constipated and really very uncomfortable, bordering on pain. 

On the other hand, I’ve had a bit of a tootle on a jazzy xmas tune that I used to be able to play (to its backing track), I’m not there yet, god I have lost so much in mouth control, tongue, timing, …, but hoping it will start to come back. 

I have lost so much in the last year, but started to claw some of life back – folk festivals, DIY, even academic study, be nice of the music comes back, even a bit! 

One day to results. 

Wed 19-Dec-2018   

Scan results day, …. 

Well, we went to Treliske and were there in plenty of time, it was to be a repeat of our last trip 3 months ago: 

The scan had not been reported, again, that means the Oncology consultant looked at it, but any actual results await the Radiologists comments. In the Oncologists opinion: 

  • the lymph node tumours are no change or shrunk, that’s positive 
  • some have fluid centres which means tumour is not happy with the drugs and “dying”, this is good. 
  • the top of the right-hand lung issue is still “we don’t know”, but “seems” to be no worse, so neutral news. 
  • however, there is some more of the same “we don’t know” stuff at the bottom of both lungs, this does seem to be new. They are happy to just “watch and wait” (a standard cancer treatment when they don’t know what’s happening!). This is NOT OK, but it is also don’t panic, …,  yet! 

Basically, it is probably “status quo” for now, with the lungs being an increasing concern, however we are waiting for the official scan results in a week or so. Next time they will book the scan earlier to see if they get the results on time for clinic? 

Oh, and finally 

 The haemoglobin level has gone back up, again, so they are scheduling a visit with the vampire to have a pint of blood removed so the haemoglobin is diluted – if it remains high it screws up the liver ☹. This may become a regular process, oh well. 

I came away with my usual shopping bag full of drugs, feeling relieved it isn’t “bad” but not happy not knowing about the lungs for sure. 

There’s a lot of I in there, but of course Teresa was alongside me the whole time, going through her own version of relief, …,  

Poo, well, you can’t not mention it, we are back to constipation so it’s yoghurt with “poo pie” (without lentils) tonight and if that kicks off then we know, yoghurt is definitely one of the antagonists. 

We quite liked the look of Shrewsbury folk festival next summer however they have a policy that “carers” only get the concession price not free as many festivals do. However, the concession price is just £5 less than the full price, hardly a concession! So, it won’t be Shrewsbury then! As I said to an organiser: 

Getting to the festival is expensive, my carer gets limited access to the festival as she is constantly making sure I have what I need, never mind having to do all the work of sorting out our camping, eating, …, she feels “valued” when she doesn’t have to purchase a full price ticket as well. Yes, I get enhanced PIP but it barely covers daily needs not such “luxuries” as festivals 🙂 

Well, I ate today pretty much the same as yesterday except I had a yoghurt with my tea. From constipation to “easy-peasy” in a couple of hours, it’s starting to look like Yoghurt is there. 

Thu 20-Dec-2018   

Going to have yoghurt with lunch today and see if it kicks in this afternoon. 

Did some minimal DIY – putting up a couple of boards at the back of the woodshed ready for our log delivery in the morning. Moved two bags of old books into my old office for over Christmas until Teresa sorts them/sells them. Fetched 3 bags of logs in, totally wiped out. Had a good 1.5hrs of quiet time but still feel very washed out. 

I should be getting on with the Autism assignment but I just don’t have the cognitive “oomph” to get on, worrying as only a few weeks to go. Tomorrow the works Christmas do, just handling a room full of people having “fun” (not my idea of fun), will wipe me out, thank you autism, missing my afternoon nap, double whammy, that’s Friday wiped out 

Saturday, we have a load of wood delivered and need to move it to the woodstore – this is killer even with two of us. Then we need to go and do our major Christmas food shop which just on its own would wipe me out so that’s Saturday gone and Sunday will follow on its heels as I “slowly” recover. Then we have Xmas eve and there you go,  … 

Well, I had the yoghurt at 1pm but despite some stomach cramps, no activity so far (4:45pm), so just to prove me a liar then, …, I hate my body 🙂  

Fri 21-Dec-2018   

It was our works Christmas dinner today, so I went to the office at my usual time, do some work. Once of the team came down with me to the hotel to ride shotgun (aka be my carer) in Teresa’s absence (she was otherwise engaged or would have come). 

The trial run we had done the week before worked. The hotel had still got the parking space wrong but we just parked in my preferred spot anyway. 

The door up to the room was unlocked so no problem getting to the room around 11:15. We were told, “sorry, not ready yet, you’ll need to go down to the bar” which is at the opposite end of the hotel a very long walk. I replied “no I don’t”, so they sent me to sit in a lovely alcove where the rooms’ bar is and overlooking the FAL estuary, I was happy. 

The meal was OK, I had to be very careful to avoid any Veg so it was meat and potato with a bit of Xmas pud to follow.  

The entertainment looked good, there were three magicians and clearly an act for after the meal, but in the meantime, they went around the tables doing various tricks and even at close range, they were very well done. 

I left once the meal was done, around 2pm, I was already very tired and I didn’t want to risk being too tired for the 1hr drive home. 

All in all, it went very well, it’s NOT the sort of environment that I would ever choose, as an autistic it was seven sorts of hell, but the company have been so brilliant in supporting us (Teresa and myself) that the least I could do was to join in with them at the Bash. My presence seemed to be appreciated by people who rarely see me as I am only in the office for a few hours once a week. It is a fantastic company to work for, I can’t say anymore, … 

Got home and tried to go to sleep around 3:30pm but failed so had a sausage sandwich for tea, lots of diarreah all afternoon/evening, eventually stopping when I crashed out around 8pm. 

It was a tough night and I was awake 1am to 4am and ended up making a chicken curry (for us and my daughter) as a “cut and come again” sort of meal (just add rice, pasta, baked potatoe as required) and I was dragged out of bed around 8am – any more follows next week, but since it’s Xmas week I may forget minor details like lack of sleep 🙂 

Postscript 

Clinic and getting scan results (or not!) is never easy, diagnosis and treatment is an incredibly imprecise science, orders of magnitude better than it used to be, treatments too, but still it’s never clear what is going on, the experts in the dark too. It’s no good complaining they “should” know, they are not gods, they do what they can. That doesn’t mean Teresa and I don’t keep a close eye on them to make sure they aren’t missing any tricks, but we both know that there is only so much anyone can know or do, in the end the experts here are the cancer and the human body under attack, we are often merely spectators to the unfolding battle that takes place inside our bodies. 

I hope you all have a good Christmas and New Year, I will still try to publish the next blog on time between Christmas and New Year, but your Christmas dinner is saved from poo tales, unless you are late reading this, then “on your own head be it”, you know that the poo will always be here for you, as it is for me 🙂  

The Bean, Pendeen, 1:30am, 26Dec-2018 

 

 

2 Comments

  • Kate Mole

    Hang on in there Bean. It looks as if you are doing pretty well so far, all things considered. Our thoughts are with you. And as always, thanks for the blog.
    Love,
    Kate.

  • Linda Camidge

    It’s very difficult to appreciate the anxiety – a d so much always seems unresolved. I know I’d be very much ‘shall we skip the pleasantries’ – I would imagine that during the smalltalk 90% attend ti on is on trying to read the tone and body language from the white coat. But last Christmas wasn’t your last – as it will have been for plenty of people who took another 20, 30, 50 Christmases for granted. ‘We know not the hour’ – a universal reality that most of us shut out. Which is one reason why your blog is a “must read’ – poo and all. May the flow be with you! Best wishes to you both, and a Happy New Year

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