Letter from the North

Sleep, I never get enough, Teresa the Rock Chick, New Year and bones that will never heal – 30-Dec-2017

Today I thought you might like to see a picture of my work desk (the place where I earn my salary). It is squeezed into one end of the room I was about to re-build when all this blew up, the door on the right is to the kitchen. Don’t be misled, the reverse view reveals just how cramped the space really is. To my left is all the gear for my real job, but I can’t show you that 🙂  

Sat 30-Dec 

Felt like I had a decent night’s sleep and was ready and raring to go (much as I ever am) and yet by 12 I was exhausted. A few gentle hours on the sofa and I managed a bit more; slow and steady seems to be game, and be ready to stop when the body says ‘stop’, but at the same time, don’t let the body rule you. If I did that I’d spend 24hrs laying down, and that’s just not on 

The unexpected rock star – Sun 31-Dec 

Teresa is a rock star. Well, not in the conventional sense but she has girded her loins and hunted in, and dismantled, our ‘chuck in’ shed, found my two speakers stands and rescued them. They are somewhat for the worse due to damp, but they will clean up. I hated having to ask her to do it as it’s heavy work, but she hated the idea of me asking anyone else because she is as independent and bloody-minded as I am, so we agreed that if she would have a go but if she couldn’t manage, she would let me ask. Stubborn as hell (just like her husband) she was not to be beaten. 

All of which means I will release her from editing last weeks’ blog until she’s up for it, much as I want it done NOW! 

Teresa, of course, asked “why” I wanted the speaker stands. She didn’t need the whole “isolation” discussion, so I tried to be as succinct as I could (decoupling sound generators from other surfaces so that the other surfaces don’t vibrate in sympathy and muddy the audio up – that IS succinct 🙂 ). Also, she doesn’t have a wide hearing range and can’t hear half of what I can. My ears are old now and don’t hear anything like as well as they did, but they do still love low frequencies (in moderation, no boom boxes here 🙂 ) and clear midrange 

This morning my 8am meds alarm woke me so my cancer meds (which need an empty stomach) will be 20 mins late, which means as I sit here at 11:15 feeling very nauseous I am longing to get the point where I can have some chocolate to settle my tummy. 

Not a minute too late, the choc doused the flame. 

Bottom department is somewhat mercurial at the moment (but a good brown with no red 🙂 ), yesterday a tad too enthusiastic so I omitted the laxative last night and whilst time was random, things were fine, just a tad “harder” than I would like, so will take one this evening. 

It is such a tricky problem judging at 8pm what you might need to do but won’t know till 5pm (or noon, or 8am, or 10pm …) the next day if you should or shouldn’t. Oh well, … 

It is New Year’s Eve (of course), it’s not something I have ever celebrated but it means a lot to Teresa who always likes a cuddle, a kiss, some ceremonial burning of last year’s mistletoe, and a quick “auld langs syne” so I said she could wake me at 11:55 if I was asleep (and who knows, at the moment) to do her bit. Whilst it is a “nothing” event for me, it matters to her and my sleep is a mess anyway. Midnight is a common time for me to wake and go to the loo anyway, so why not? 

Teresa has been busy working upstairs (writing). She came down at 4:30pm, so I hoisted myself of the sofa where I had been “relaxing” to come through here (to my office) to give her some ‘Teresa time’ in our sitting room, since most of the time it is treated as my sitting room and bedroom. When I can, I try to let her just be her snuggled on her chair doing whatever she wants – often editing hard copy, reading, sometimes TV. 

Whilst I have had some difficult days, at the moment the exhaustion is manageable, the pain is under control and I feel “ok”. I hesitate to say it, because all it needs is a fleck of dust hitting the wrong butterfly’s wings and I’m screwed, but as I have said, I am always happy to say “that was a good day” and today “IS a good day”. 

The day after the night before – Mon 01-Jan 

In case you don’t read FB, here is this morning’s post 

Both my parents made it well into their 80’s and with no family history of “nasties” (well unless you smoke which I never did), so at 62 I really had no great worries about another twenty years. Now I’m told two is more like it, maybe less, maybe more but don’t hold your breath. 

New Year has always been a shoulder shrug event for me, it was just another day. It has always been special for Teresa. Last night we celebrated it in the same low-key way we always have. The difference is that after all the mistletoe was done and Jules Holland had done his thing, I shouted out at the top of my voice ONE. 

That’s one New Year since Diagnosis and I am still here. I want to be here in a years’ time and hear a very loud shout of TWO. 

We have lost too many people in the last year and we will lose more next year. So, I am very pleased to be able to offer a very happy new year to all who are still here and remember those that didn’t make it. 

Bean (aka David) 

p.s. The blog for Christmas week is done but it awaits Teresa’s loving attention and she has her own life and I’m happy to be at the end of that queue, it is on its way. 

2pm – done some useful work,  had sausage rolls for lunch (as we have every day since Christmas) and then I cleaned off the rusty paint from one of the speaker stands and will do the other when Teresa has swapped them. it’s the first real bit of physical work since accident. It puffed me out, but felt good. 

Time to crash – Tue 02-Jan 

Well, I managed some work this morning but I hit lunchtime and crashed! Some more equipment was delivered today – a back support and a “help you get out of bed” thing. The latter really needs a single bed not a sofa or double bed, but the back support is brilliant, replaces a stack of cushions and is much firmer. I find I can sleep better, still uncomfortable, but the pain is not so sharp.  

As soon as we finished lunch I tested the new back support and crashed for 3 hours!  

I find I have to work when I feel alert, rest when I don’t and just faff about when somewhere in between. It is absolutely a case of “listen to your body”. If I was in the office it would be hard to crash for a few hours (especially if driving!!!) but working from home I find I can pace myself and still do my hours. 

Pockling along – Wed 03-Jan 

A good night’s sleep especially since I dropped off during Teresa’s TV time (post 8pm). So, right now I feel ok. 

The fracture clinic – Thu 04-Jan 

Off to the fracture clinic today, we are both determined to get better information on the healing progress, and then off to the office before returning home. 

Hmm, first I struggled out of bed and felt awful, worst I’ve felt in the morning for ages, what a great start after thinking we’d turned a corner. 

But off we went, and Teresa tells me I was more chatty on the journey than usual and I must say by then I felt better, so maybe this is a good day. 

Got a different doctor in the fracture clinic and he seemed a lot more on the ball and had read all the cancer clinic’s notes. 

Bad news – Collar bone not healed at all, no bone growth, nothing. It won’t heal now without surgery (plates, bone graft, etc.) and no point doing that while on meds that inhibit healing. So, the best I can hope for is that enough scar tissue develops to stop the pain (from movement in the break). Standard X-Rays don’t show soft tissue (including scar tissue) so he didn’t know if this was happening. Fortunately, I will be getting a full CT scan next month (for the cancer) but that will also provide the orthopods with information on soft tissue growth in the collar bone area (CT scans DO show soft tissue) 

The ribs look like there is some bone growth, but hopefully the CT scan will also tell us more. 

So, the news never gets better, fingers crossed that at the end of Feb we will get some good news i.e. that the Pazopanib treatment is working and the mets have stopped growing (to hear they are shrinking would be tremendous) and that no more have appeared. But that’s another 6 weeks yet, so patience is needed. 

Whilst on the subject of shrinkage, for years I’ve had a wart on my forefinger. Doctors have tried to remove it, but it always comes back. Latterly it had got quite large (Teresa and I have debated this and would say it was somewhere between the size of a pea and a broad bean!). Now, suddenly it seems to be dying and is almost gone. Is this the result of the Pazopanib? Does it mean the same thing is happening to my mets? Who knows, this whole thing requires a delicate balance between hanging onto a thread of hope and being realistic! 

Back to the Fracture Clinic, we must have been with this particular doctor for 45 mins discussing the situation and it all felt much more “joined up” than our last visit before Christmas. 

So, I felt fine and alert and we were both upbeat because we felt the bones and cancer were being considered together by the bones people; next we need to get the cancer people to do the same. I asked the bones man to make sure his report was sent to the cancer people (apparently bones department can see cancer reports, but cancer department can’t see bones report). Oh well, paperwork, still Teresa and I are in charge and being reasonable and aware seems to help join up gaps in the system. 

Next we headed over to Penryn and the office. I continued to feel good and spent a couple of hours there reviewing the medical side with personnel – it’s important they know where things are so they can help, if I don’t tell them they can’t help, seems reasonable to me. 

Then we reviewed the work I’m doing at home with the team and it was good to feel part of the team, even if for just a couple of hours. It is amazing the lift I get from seeing them. As an autistic, it is really weird to hear myself saying that being with people is good. In the past, whilst I have always liked being with people, I have never coped with it very well. Maybe because this has a focus (work), but I never leave the office thinking “thank goodness, I can now escape”, it is ALWAYS with regret! 

So, left office and on to Sainsburys. I am still alert and interested, in the past I would have zoned out for the journey home. At Sainsburys in Penzance I began to flag and by the end of our shopping I had no idea what I was doing. Even so, I stuck with Teresa till we were done, then left her to do the checkout and went to sit in the car. I was moving very slowly and in pain (my 2pm pain killers were prob half an hour overdue. I took them when I got to the car, and we drove home. I collapsed on the sofa (sitting not lying) and after half an hour or so of “dead” time, I picked up and was alert for the rest of the afternoon/evening. This is a first, it almost seems that, if I can get enough sleep the night before and take care, I am reaching the point where a full day is very possible 

I achieved more than I thought – Fri 05-Jan 

Hmm, well today was “recovery day”, that much is familiar and I rested and “socialised” with Teresa, but I crashed Friday evening and had a good night’s sleep; Saturday will follow in next week’s report (but it was the best day for ages, to avoid too much suspense 🙂 ). 

On reflection, Friday wasn’t entirely a recovery day. I disconnected all my audio and got Teresa to lay down the speaker stands and then, while she started taking down Christmas decorations, I fitted spikes to the speaker stands, she then came back, moved the stands and then speakers 

 

I now have the arrangement I wanted, the gap between left and right is, at best, six feet; the distance from my sitting position (see picture at the head of this letter) is not much more. But it’s the best I can hope for in this limited space. 

  • Yes, the grill cloth on the front of the DB1’s is coming loose, I just need to re-glue it where the glue has aged and given up 
  • Yes, those bits of wood to the right of the glass door are part of the old frame (mouldings) plus part of the new frame for the new doors, I got this far before the accident. 
  • The TLE1 is the PC like box between the two speaker stands 
  • This is the view if I swivel my office chair 180 degrees (see picture at the top of this blog), it’s really cosy in here. 
  • To my right in this shot are an 8×4 foot sheet of plasterboard, 6 sheets of plasterboard, CD cases (like book cases) and other timber awaiting the “new” (but abandoned) building work. 

After that, I was exhausted, but after a leisurely lunch I returned to my office and reconnected all the cables and got everything working again. A very happy Bean, and I spent some time listening to music and just “faffing”, only finishing at 6:30pm in time for tea. 

At some point I helped Teresa take down the Christmas tree lights and then get the tree out of its stand so she could put it out for recycling. 

So, whilst it was a “down” day in work terms, it was not a wasted day and hence I consider it is still part of this upward curve I am feeling. 

Postscript 

It is frustrating that as soon as I start to feel better, more human, more me, then I worry that maybe the cancer drugs have stopped working and actually I am getting more ill, I just can’t tell. That’s part of the hateful thing about this cancer, it is silent and deadly, you get little in the way of better/worse unless it is extreme, life challenging bad news.  

I find I have to keep a small part of me, isolated and well-hidden, where I put all my optimism and hope, so I can dip into it when I feel really down, but otherwise keep it well protected from the vicissitudes of day to day coping with the broken bones and cancer and Teresa and my emotional rollercoasters as our life continues to be torn up and re-arranged in ways we’d rather it wasn’t. 

One of the few things we are able to keep out there and upfront is the enjoyment of our love for each other. It is a delight and pleasure, especially for me as an autistic that the cancer is so grim and ‘in your face,’ that I NEVER forget to show my love to Teresa. It has always been there, but I have often forgotten to show it. This cancer has been brilliant in providing a constant reminder so I can constantly show how I feel and see how much that means to Teresa. That’s one piece of “hope” that doesn’t need to be hidden, but celebrated every time the cancer and accident try to pull us down. 

4 Comments

  • Joyce green

    Thank you for such a full update . It is good to know how you are – the good and the bad and to know that you and Teresa are ok.
    If there is anything Phil and I can do anytime please ask . I know you have many good friends but we are close by if you need anything . Sending love x

    • Bean

      Thank you both, we never forget you are there are willing to help. I’m pleased the update answered questions. I do it to try and help others facing something similar but also to help all our (well Teresa’s) friends (Autism and Friends are not easy bed fellows 🙂 ) know what’s going on without feeling they can’t ask. With me you always can, but I understand for some people it’s easier this way and I enjoy writing the blogs, helps me to remember what’s happening to us and to publicly say thank you to Teresa as often as I can

      David/Bean

  • Victoria Osborne-Broad

    Coming in a bit late on this one, have been tied up with family. reading it feels overall as if there are more positives, even if only minor or brief good things. And please keep writing these and publishing them when you can. It’s good to know how things are going.
    Victoria x

    • Bean

      Yes, thank you Victoria, I feel a corner has been turned on the broken bones. The ribs are definitely getting better at long last and although the collar bone will not grow new bone to fix itself, it hurts a lot less. At the moment the cancer is in wait and see for 5 weeks to see if these drugs are doing anything (fingers crossed). This last week’s blog is done but awaiting Teresa’s ministrations, she has a lot of work to do on my behalf over the next few days so it may be a while.

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