Letter from the North

Nausea, waxing, sleep, walking in the air, Pongo time – 20-Jan-2018

Have you noticed the common heme in the names of these blogs?

Nausea rules 🙁 

Sat 20-Jan 

This morning we had a (very welcome) visitor. Teresa made coffee (mint tea for me) and we had a good catch-up. It did, however, mean I didn’t get as much done as I would like and by the afternoon I was very tired, so really the afternoon was about three hours of salaried work and the rest of the afternoon and evening crashed out. 

Nausea rules – Sun 21-Jan 

Had breakfast around 6am and spent virtually all morning feeling nauseous. At 9:30 Teresa suggested I take my anti-nausea pill then rather than at 10am with cancer pills. It did help a bit but by 11.00 am I was desperate to eat some chocolate.

I had been working in my own office upstairs and felt quite faint at times. 

I am starting to wonder whether there is a blood sugar issue which the chocolate helps fix. I have noticed that eating more for breakfast makes nausea less, the problem being that I just can’t face that much food. I wonder whether I’m going to have to bite the bullet and try harder to eat more for breakfast and see if there’s a “hunger” problem. Given how I lose weight I have to wonder if one side effect of the meds is reducing how effectively I am getting nutrition out of my food – must ask the consultant? 

Like yesterday, I reached 4:30pm having managed a full day’s work but was then exhausted and all I could do was crash. 

I have to say that I am getting fed up with being exhausted all the time and yet if I don’t “work” then I feel like a waste of space and I would hate being asleep all day even more. So, I have to push myself and live with the feeling of being tired and keep on going till I recognise the “too tired” point, usually too late hence the crashing out. Can’t be a lot of fun for Teresa or my daughter. I occupy our sofa 24/7 and although I try to leave the sitting room free for them during daylight hours, they never get the evening to themselves. 

A normal (ish) day – Mon 22-Jan-2018 

Glad to say I had a reasonably good night. I’ve changed the angle of my back rest for sleeping so it’s at its shallowest angle (as opposed to one notch higher) and although getting up is a lot harder, I seem to sleep easier and longer (albeit still waking every couple of hours) and get back to sleep quicker. Oh well, it’s working this week, the way my body is it will stop working next week, but fingers crossed. Bit like cats and cat food…. 

I was up with breakfast around 6:30am and at my desk at 7:20am, so fingers crossed for a good day’s work. Right, pain killers alarm just going off, take the drugs and back to work. 

 

In the event, it wasn’t a bad day, but I had slept for a long time the night before. 

Successful waxing – Tue 23-Jan-2018 

Today I had a 9.00 am appointment for waxing legs and back. My first attempt after the accident was only three or four weeks after the accident and we didn’t achieve much. The front of my legs were fine but because I couldn’t turn over and was in so much pain, the backs were done by me trying to twist my legs enough to reach. It was ok, but not great. As compensation I had a full pedicure and for the last two months I’ve had some lovely dark red nail varnish on my toes. 

Today however, I was able to lie on my tummy for long enough to do the back of my legs and a lot of my back, but I was uncomfortable with anything done near the broken ribs/collarbone. So, I got off the table – a little ungainly as I had to engineer a controlled fall, turning around until my feet came off and I ended up on my knees beside the bed, then using my stick until I could stand up. I then sat on the bed and it was easy to reach my back, I could support the shoulder and it was a good job done. The hair was longer than we’d have liked back there, I should have trimmed it a few weeks ago, ready. However, I am not asking for Teresa’s help for keeping my body hair under control; much as it distresses me, she has far too many practical things I ask her for, something “frivolous” (which it isn’t to me, but I realise in the great scheme of things, …), so I am now a funny patchwork of a lot and a little hair. Oh well, step by step. 

Then I went to the doctors’ to discuss how I was reducing my pain meds. Unfortunately, they were running an hour late so I ended up sitting in the waiting room for an hour and a half. 

The doctor and I agreed that reducing the Tramadol was a good thing if the pain was Ok and agreed to the drop of 150mg twice a day to 100mg twice a day and gave me a prescription for 50mg pills so that I could take 100mg as two 50mg pills and then, when it felt right, start to reduce 100mg down to 50mg. Yeah! 

As I got up this morning there was a bit on BBC breakfast TV saying that there was a problem in the NHS of addiction including to prescription pain meds, which just re-enforces my determination to get off the Tramadol (a synthetic opioid) as soon as is reasonable. 

There are often articles in the news about “famous” (well known) people who have cancer and that always seems to be “worthy” newsworthy, Cancer is so common, but it doesn’t feel real to me when it’s someone I see on TV or read about compared to someone I know. I do know that the moment you start talking about cancer, you find that virtually everyone you know has been touched by it and often you didn’t know, or really understand how it affected them.

Sometimes it seems to feel that if someone has  cancer then they are either ‘cured’ or they die, yet it is the living with it that is the drop by drop torture. The fact is, it is never truly cured. Sometimes it goes away not to return in their lifetime, but often it seems to hide away and sneaks back. That is certainly the case with Renal Cancer which has a habit of being considered “cured” when it’s only on the kidney and the kidney is removed; however, often years later it is discovered that some of those pesky cancer cells had sneaked out and have started to grow elsewhere in the body. In my case it’s already all over the place and no chance of cure so at least I know where I stand and there’s no false hope 🙁 

I suspect (with absolutely no clinical evidence) that a lot more of us are walking around with cancer, not realising, and with luck never knowing as we got to our natural end of life before it got a good hold. Unfortunately, for some of us it does rear its head and we have to deal with it, but whilst it’s nothing at all like the flu, in a sense it is as normal a part of being alive. Flu happens because the body is susceptible to virus’s and the immune system can struggle to fight it off (that’s why we have vaccinations). Cancer happens because the immune system fails to fight a cell mutation. Sometimes you are lucky and sometimes not, but our bodies are not machines and they are constantly under attack, sometimes I wonder whether we appreciate just how well our bodies do cope with what they are subjected in the effort to and keep us alive? 

Hmmm, never saw that particular “rant”(is it a rant?) coming, but come it did. 

 

What am I fighting?

Anyway, waxing is now back on the agenda, self-washing and dressing are go, showering is almost go, shaving some parts of me is still in the queue, but I am getting back to normal and, of course, none of that is anything to do with cancer and all to do with the accident – hard to remember sometimes but today I am fighting, in order 

  1. The consequences of the accident – this dominates 
  2. The side effects of the cancer drugs – not insignificant but manageable 
  3. Renal cancer – this is, as far as I can tell, having virtually no impact on me at all at the moment other than needing to take drugs to delay the time at which it will affect my quality of life. 

I need to remember this, we (Teresa and I) constantly forget that a lot of my battle is with the consequences of the accident and the treatment for the cancer, not for the cancer itself, which will, I am quite sure, make its impact felt, just not, I hope, for some years yet 🙂 

Hmmm, just a quick thought, I may now be regretting this as my collar bone is reminding me it’s there, but earlier on I instinctively pulled down my skirt (it’s a maxi-pencil so down not up!) and knickers for the loo with BOTH hands. For the last three months that’s been a single-handed job. Ditto pulling them both back up. This looks like a bit more progress – well it would, were it not for the fact that an hour later there are more twinges from the collar bone than usual and so it may be protesting 

Time will tell. Ten minutes to chocolate time. About an hour before I took the cancer pills I had to ask Teresa to grab the sick bowl, but in the end, I managed to control the nausea. Right now, it’s feeling tough to manage. Fingers crossed I get through the next ten minutes and the choc has time to work? 

Oh well, back to work. 

Sleep, please let me sleep – Wednesday 24-Jan 

Just a work day, but I am so tired I can’t think straight. It got worse as the day went on and by 3:40pm that was it and I collapsed on the sofa. I didn’t actually sleep till around 8pm, after Teresa had left to go to Penzance Folk Club (yeah, she’s starting to go out, makes me so happy!!!) and although I did my usual odd wake, I slept for around 11 hours 

Walking in the air – Thursday 25-Jan 

A slow start to the day, still very tired but I eventually got moving and managed to finish breakfast by the 8.00 am cut-off and had pain killers. 

In yesterday’s notes I forgot that after I gave up work (around 3:40pm), I went into the sitting room and thought “I must be able to play my piano, given the movement I am getting on the right-hand side”, so I sat down and played “Walking in the Air”. Now, I started to learn the piano some 25 years ago and reached Grade 3 (or 4) before family life and depression got in the way. That piano has followed me, gathering dust but I recently (pre-accident) cleared access to it meaning to try learning again. Yesterday I felt that I’d like to have a go. Walking in the Air was one of the few tunes I could basically remember (motor memory) so I didn’t have to sight read at any great speed). I’d like to get some music back into whatever life I have left. I can’t play my normal saxes due to shoulder issues but it looks like I can try the piano and, when we clear access, maybe my big Contra Bass Sax because that is played on a stand, with me either standing alongside or sitting on a high stool. 

Fingers crossed I can get some music back into my life? 

12 hours sleep and then Pongo time – Fri 26-Jan-2018 

Stopped work at 4:40 pm yesterday as I was so tired and slept on the sofa, had tea and crashed again, I woke 12 hours later around 7am feeling awful but I did manage to pick up once I got moving. 

We (Teresa and I) have been working out how we can still do folk festivals when I can’t be certain I can drive or I will be too tired to drive. The caravan needs a hefty vehicle for towing it as well as a certain amount of heavy lift to sort out gas cylinders, hitching, etc. all of which is too large a load to put on Teresa with me watching in frustration, and is certainly too much for her to do on her own once I’m gone. So, we’ve been considering the “Campervan” option. 

Over the last 25 years I have had 

  • Landrover plus big caravan 
  • Big Motor Home 
  • Campervan 
  • Campervan plus little caravan 
  • Campervan plus big caravan 
  • Landrover plus big caravan 
  • Landrover plus medium caravan 

So, I’m pretty clued up to the strengths and weaknesses of the options and what we need for a festival. The practical compromise is that some sort of camper is enough, smaller, less flexible, but easier to manage and enough for a few days at a festival with loads of facilities. 

The classic VW Van is far too expensive, we wanted something more financially reasonable (i.e. something we could afford with the insurance money from Blossom). It needs:

  • to provide minimal sleeping and water facilities.
  • an automatic because of the shoulder
  • because every time I haven’t had four wheel drive I have got stuck on a muddy festival field, that’s what I wanted for my own piece of mind
  • air conditioning – both of us want this!

There is really only one simple way to do all of that on our budget and with me having most of my DIY skills limited and hence unable to do any conversion work myself:

“Pongo”

As Teresa calls them, in reality it’s a Mazda Bongo, a Japanese People Carrier not for sale in Europe but frequently imported and converted into a low-cost camper, it has it’s own niche market below the VW Van. Unfortunately, the Bongo market is dead as the manufacturer stopped making them some years ago. Fortunately, there are alternatives and our new steed is a Toyota Alphard, another Japanese people carrier not sold in Europe but big enough to adapt. Not a pretty vehicle (to some), but one that will do the job at a price we can manage. 

I can’t drive yet, but long-term this is Teresa’s van, short term it’s ours and will be something I can drive on my own (with minimal adaptation). So, on Friday the weather was nice, and I felt like a trip out, so off we went to a place east of Newquay. We found what we wanted, did the deal and once the UK registration paperwork is sorted (6-8 weeks) we will have our new vehicle, which I hope I will be able to drive by then. Job done.  

In order for me to be able to drive it, I need to sort two problems: 

  1. Be off the Tramadol. I was already down to 100mg twice a day. Today I moved to 50mg twice a day, topped up by paracetamol 4 times a day and hopefully by the time the Phoenix (Teresa’s current name for the beast) is ready I will be able to drive it. 
  1. Be physically able. The only restriction at the moment is the broken collar bone that refuses to knit. This means I can’t use my right arm for anything more than holding a sheet of paper! Fortunately, an automatic plus a knob on the steering wheel should be all I need to drive, using Popeye for all the hard work. I will need to have the medics approve this, and then inform DVLC and the insurance company. In the past this hasn’t been a very formal process, when I broke my leg everyone said it’s OK if I think it is! 

The Phoenix is not a city car, too big for that, but for me to go the doctor or such on my own, I can use disabled parking bays and I will manage. 

Our only challenge will be to get to Columb Major to collect it, so we can both drive it home. For me it will be nearly 5 months since I last drove, so I wouldn’t plan to drive it all the way. Anyway, there would be mutiny if Teresa didn’t get a go, so, we have no idea how we will make that work yet, but a plan for the future. 

It might seem odd organising a car before I can drive, and if it was just for me it would be, but it isn’t and it is motivation for me to have a date to aim for. 

Mobile Chair 

Having my own personal sword of Damocles, I am focused on making every day work. Now that the broken bones pain is easing off I am left with the long-term problem of being able to sit comfortably and deal with getting exhausted so easily. Sitting down requires me to have a chair back that is shaped and padded, exactly how I need it and a VERY padded seat to protect the coccyx. In addition, whilst I can walk, I suffer increasingly from sore feet (side effect of the Pazopanib) and painful hip and ankle (consequences of the broken leg five years ago).  

I don’t see myself as wheelchair fodder and yet …

When we go out I get very tired and then Teresa has to fetch the car and there isn’t a café, restaurant, pub, shop, public space, …, that has seats that don’t leave me in severe back pain within 10 minutes.

So, I am having to contemplate an electric wheelchair.  

Blah, I hate this idea, but I need to be able to sit in comfort and, in particular, rest and pace myself when we are out. 

For example, at the end of Feb, I am due to go to a concert with Teresa at the Acorn in Penzance and I wasn’t looking forward to the seats and how uncomfortable I will be – even though I will be taking my extra thick padded cushion, it’s the seat backs that will be the problem. Indeed, when we went to the Honeypot recently, Teresa had to go through half the chairs in the café to find me one that was acceptable for my back (not good for my bottom, but I survived for half an hour – that was a good day). 

So, you may see me whizzing around in a wheelchair, or you may see me walking: the point is, it’s not inconsistent. On a good day I can (and need to) do some walking, on a bad day I just can’t move, I am too tired to put one foot in front of the other or need my “mobile” comfy chair.

Funny how your perspective on life changes. Three months ago, I was travelling around quite happily in my hefty Landover. Now I’m talking about adapted cars and electric wheelchairs and yet I don’t “feel” I’m disabled, in my head I’m still the me that I remember before the accident, and yet I have to be realistic about what I can or can’t do.  

A manual wheelchair is a no because I’m not going to be dependent on others to wheel me about and I’ve used a manual wheelchair on my own – they are very hard work with two arms (never mind just one) on anything other than perfectly flat and level and we don’t have that down here! 

Oh well, if it helps, do it Bean and to heck with what it looks like or whether people think you are a fraud or not, you know what you need to do. 

 

The North Again 

Getting back from choosing the campervan I went straight to the North and had a pleasant few hours, mainly J2O’s and two half pints of Proper Job (still tastes nice even with screwed up taste buds), though I suspect that even though the second was two hours after the first, it was probably still too much for me ????. Teresa fetched me home at 7:30pm and, as I expected, I crashed except … 

… I can’t leave you hanging there for another week or so, so suffice to say, I woke around 3am on Saturday morning and that was that for sleep. The rest of the day was not great, spent mainly in zombie mode, but more on that next week.  

Postscript 

Sometimes I pay a very high price for having a good day and I know some of you out there know this problem very well. 

There’s a choice, you give up and do nothing or you accept there is a price and enjoy life. It’s not nearly as easy as it sounds and in particular it’s nowhere near as easy to do as it might seem to others. Other people only see me having a good time, laughing, joking about the cancer, it’s only Teresa that gets to see me wiped out or in tears. 

Same with the wheelchair, no two days are the same and sometimes it will be essential and others not needed.  

I know that I have been guilty in the past of sometimes wondering (judging) others for not being consistently disabled (however you define it). Now I’m in that boat myself I am rather more aware of how variable it can be and I have to confess to being somewhat ashamed for some of my feelings in the past (never spoken only thought, but even so, …) 

 The Bean, at home 27-Jan-2018

3 Comments

  • Kate Mole

    Thank you again, Bean, for this wonderful blog.
    Interesting ‘rant’ about cancer and people walking around with it not knowing. After seeing that such an apparently vast number of people have cancer or have had cancer, me included, me and my handwork group (proper scientific survey, of course) came to the conclusion that cancer must be somehow generated by the environment we’re living in. In other words, it’s part of modern life. And the treatments for cancer, also, are part of modern life. Er – don’t know what that proves now.
    But about wheelchairs, I believe there are quite a lot of people in your situation, that is, they need to use one sometimes, but not necessarily all the time. These days it’s approved terminology to say that someone ‘uses’ a wheelchair, not that they are ‘confined to a wheelchair’. Which indeed they might not be. It’s fine. Go ahead with it and don’t worry.
    Very best,
    Kate.

    • Bean

      Hi Kate, nice to read your comment.

      As humans we live in our environment, indeed are part of it so I think just being alive means we are at risk from the environment we live in. Nowadays we are much better at finding and treating cancer, so it seems more prevalent. As an autistic I know it seems like more and more people are being diagnosed as autistic (especially children) and hence it is somehow a “new” phenomenon, but I believe it was always there, we are just better at seeing it. After all I have been autistic since birth but nobody knew because they didn’t know what to look for. Fifty years ago nobody would have seen me as autistic. Before the days of CT scanners (in my lifetime) nobody would know I had renal cancer. Five years ago they couldn’t have even attempted to slow down the cancers progress and I’d have a prognosis of months.

      The better you can see, the more you can see, what you “choose” to do with it, well, we are all imperfect humans, and thank goodness I’m not alone in that 🙂

      Really I am OK about needing the wheelchair sometimes, I think it is the sudden change in my life that it’s taking me time to process and I choose to make my process visible in my blogs. That includes having to look hard at attitudes I have held in the past, which I regret now.

      Enough waffle from me, …

      Bean

  • Linda Camidge

    Always interesting to read your blogs – the “Pongo” option and the wheelchair both sound ideal (and, once again, solutions of the modern age not available in former times)

    It was lovely to see Teresa at the folk club, and I look forward to seeing you both, out and about

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