Letter from the North

Kidneys, Kittens, Sheffield and Cancer – 21-Sep-2019

The pic at the top of this blog is Jane, if you’ve been reading my recent face book posts you will know she was been given notice she has kidney failure – just disease rather than cancer, but incurable and fatal

Jane is very much in our thoughts as she keeps going, no matter how much you see and read about Mr Biggles

This blog follows on from one that finished with me getting into as right old state about new kitten basically ignoring me and me not being able to sleep and ending up going to sleep in my armchair with a duvet over me, …

Sat 21-Sep-2019

We were going to go to Truro this morning but didn’t want to overload my reserves before heading up to Sheffield on Friday, …

After a bad night (see last week’s blog), that was a good idea

I am in a lot of coccyx pain after sitting in chair for half the night (twice in quick succession)

Rest of the day passes in a blur of fatigue

Sun 22-Sep-2019

Continued to take it easy and rest, Sheffield at the end of the week will be tough

Mon 23-Sep-2019

Biggles slept upstairs all night, all four of our other cats were downstairs. Biggles appears in morning for a quick 10 second hello and then Teresa appears and bye, bye, Bean…

Popped into my office to do some work and in the space of around a minute

  • Daddy, daddy, I must come into your office now
  • Thank you, I must come up on your lap
  • Buzz, buzz, head butt, buzz, I love you best of all, I’ve missed you terribly
  • Jumps down
  • God your office is the most wonderful exciting place on earth, I so love it
  • OK, ready to go now

Ok, so it was 55 seconds not a minute but you get the idea!

Later, I go up to the loo.

  • Daddy, daddy, you’ve got to let me in
  • Thank you, I must come up on your lap (while you are doing what you need to do)
  • Buzz, buzz, head butt, buzz, I love you best of all, I’ve missed you terribly
  • Jumps down
  • Waits in bathroom and jumps up on loo next to sink while I do my morning ablute.
  • Fascinating I so love watching you wash and clean your teeth, it’s so exciting
  • Bye …

Get dressed and come downstairs and hello daddy, bye daddy

I’m back in my office and no sign of him

What is clear is that so long as there is anything interesting going on AND he knows where I am then I am irrelevant. Indeed often “so long as he knows where I am” is enough even if he’s asleep on the cat tower, with the other cats or even up on the bed with Teresa, …

Not quite what I wanted, but I guess it’s my role and I have to accept it, as things get less exciting maybe he will return more constantly?

So, no, not what I wanted, but apparently, I am his “security” and so long as I fulfil that role, he will do his own thing and come back to me as and when.

Like having children really, once they don’t need you, they only return when they do 🙂

Hey ho, work beckons

The dilemma, if my partner is bi-sexual, will he want sex with someone of the other gender and have an affair – The bisexuality dating dilemma.

Really!!!! If you are monogamous, you are monogamous no matter what your sexual preferences, for same sex, both sexes or hetero (whatever that is!). If you’re not, you’re not and that’s just as valid a choice (as long as you are honest)

Simples!

Hmmm, so I now get a FB advert every 7 entries in my timeline (yes, I’ve counted). Clearly, I have upset someone (or some algorithm more likely) in FB land!

11:45am, Teresa leaves the house, kitten wants into my office, loves me madly, kneading, buzzing, …, 10 mins later, he is off out again and asleep on the cat tower. I suspect he’d prefer it if I was in the sitting room, but that’s at 12:30pm, sorry Biggles, I love you dearly, but my employer expects some blood sweat and tears 🙂

Tue 24-Sep-2019

In the office in Penryn

Wed 25-Sep-2019

For lunch, every 10-14 days I make a batch of “pasta”, alternating “pesto” (just the basil) & chicken pasta and fish pasta (a Teresa invention, that I Fodmapped).

The last lot of fish pasta developed a horrible taste, so I need something different.

Teresa has found some gluten (and onion) free pork sausages – so I “invented” a sausage and chicken and tomato pasta – again a Fodmapped version of something. The original used baked beans, they are a no, but well rinsed, tinned in water chick peas, are an acceptable substitute (the water sucks out the nasties and the process of tinning makes that more effective, so, as long as you rinse well, ….

Worked well, looks like I have a plan B

Thu 26-Sep-2019

Moved wheelchair to Teresa car as we are going up in her car to Sheffield on Friday as the car park (by the hotel) has a low clearance and my van won’t fit 🙁

Fri 27-Sep-2019

We left for Sheffield around 7:20am, horrendous traffic all the way to Sheffield. Constant stationary traffic on all roads. Took us 10 hours to get there.

Parked up OK

Wheelchair needed bit of jiggling to get ready (first time it’s been used) but did sterling service.

After unpacking a quick meal in the hotel, did not eat healthy as body heading towards constipation. Even went wild and had 1st pint of beer in 6 months – Golden Sheep, appropriate for being in Yorkshire!

Then we went into town for me to not recognise anything. We found crucible theatre (opened in 1971, I was at Sheffield University from 1973-1978 and went there regularly) has been facelifted but while I recognised some of the shape the surroundings were all new to me.

Postscript

It is (for me) worthwhile updating where the whole cancer thing is:

1) I still have metastatic renal cancer, that is cancer that started on my left kidney and spread through lymph nodes all the way from the kidney to my right shoulder – which is the node the cancer was spotted in when I had an accident 2 years ago.

2) There is no cure, surgery, chemo and radiotherapy don’t work for kidney cancer unless it’s all contained in the kidney (or very close by), mine isn’t.

3) Metastatic means life limiting/terminal depending on which jargon you want to follow. In any case it WILL kill me

4) I am on a treatment that inhibits growth (and hence spread) of the cancer. Currently that is Pazopanib (a TKI for those that understand). It WILL fail, the cancer develops a way around it. I have 3 maybe 4 other drugs I can try and that’s it. All of the drugs, always fail, it’s just a matter of when – straight away, months, years if you are lucky, but they WILL fail.

5) The cancer is still there it has not shrunk or gone away – it shrank a bit in the first 6 months but since then “stable” is the watchword.

6) My life is not limited by the cancer (while it’s held in check) but by the side effects of the powerful drugs I take.

This is the bit of my life that has changed so here you go:

  • Blood pressure – the drugs push it dangerously high. I now take 1/3 of the drugs I was taking at the start. However, my BP has a habit of suddenly spiking (to dangerous levels) but a quick pill pulls it back into order. It means I check my BP twice a day, but that is no great hassle. Vigilance is the key.
  • Nausea – I’ve recently stopped taking my nausea meds and I’ve been OK. Don’t know for how long, but so far so good (edit, still not taking but nausea is getting harder to ignore)
  • Diarrhoea – drastic changes to my diet (Fodmap) have controlled this – I walk a knife edge between this and constipation, but it is manageable
  • Secondary Polycythaemia – the cancer causes my kidney to over produce Erythropoietin (EPO) that causes my bone marrow to produce an excess of red blood cells. That means my blood is too thick (risk of stroke, heart attack, …) and has too much iron. The treatment is straightforward, they take a pint of blood out (of my arm) once a month. This is a known effect of the cancer, not common, often there is too little iron not too much.
  • Last but the mostest – fatigue, whether from the cancer (some of it) or the cancer drugs (a lot of it) is the killer, I have very limited energy and physical/emotional/mental energy all come from the same very limited pot. So, I can only use one at a time – hence the wheelchair if I am at the University. It’s also why I can get more work done at home than in my company’s office which involves 1hr drive each way and driving costs energy – focus and attention are key here :-). It’s also why I rarely stray outside the house and don’t go to events in Pz anymore (or at least rarely)

7) The accident – my claim for compensation for the injuries and ongoing pain in my shoulder and coccyx continues to grind on with no signs of an end.

The Bean, Pendeen, 17-Oct-2019

1 Comment

  • Kate Mole

    Dear Bean,
    I have read all your blogs (I haven’t always commented because I’ve been away recently), and I just wish there was something someone could do or say or give you which would provide you with comfort. There doesn’t seem to be anything which can do this, and your life sounds quite bleak sometimes. I am sorry. I hope you find something which alleviates your discomfort and sadness.
    Love,
    Kate.

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