Letter from the North

Nausea, normality returning, fatigue and tiredness, washing myself – 6-Jan-2018

Sick on Saturdays, but no poo- 6-Jan-2018

This morning (11am), one hour after taking my cancer pills, I felt more nauseous than normal; as usual, I had some chocolate to try and settle things, this works 99% of the time, but this morning it didn’t kick in quickly enough. I had the common sense to be sitting next to the sink, so no big deal. A lot of thick phlegm and hot flushes but a few minutes later all is well and I feel fine. This was just how it happened the first time at Waitrose in Truro. Now, Teresa is out shopping, but a deal is a deal (I tell her everything), so I texted her what had happened and stressed no need for her to rush home.

The poo department is oscillating, nothing today after yesterday’s enthusiasm so at 9pm took a laxative. Not sure if that was the right thing to do or not, I guess I will find out tomorrow.

Too much poo on Sundays – 7-Jan-2018

Hmmm, swung from nothing to a tad (well somewhat more than a tad) too much. This is tricky and I suspect food (what I eat) and liquid intake (how much) have a strong influence. Think I’ll try and hold off on the laxatives and give that department time to settle. No blood, so I can take the time.

A full day – Mon 8-Jan-2018

It’s been a long day, but a FULL day’s work done, fantastic, done at my own pace, starting at 8am and finishing at 6:30pm I did 7.5hrs work and 3 hours of taking it easy and talking to my wife and daughter (who’s back living with us at the moment). Apart from the nasty stuff going on, I am finding this a very contented life. That said, the pain is horrible, the cancer drug side effects aren’t good and all the tests and waiting for results is horrible, but they have their own box to play in and we try to leave them to do their own thing while we get on with ours!

Is this a sign of normality returning? Tue 9-Jan-2018

Yesterday a full day’s work and this morning it was lovely to see Teresa in the Kitchen sorting out her decorating kit (from the annex – almost done). Last night she went out and I feel I’m starting to get MY Teresa back: for the last 2 months I’ve had “carer” Teresa, ultra-protective, pull up the drawbridge and defend me from the outside world. I’m now starting to see the woman I fell in love with –  obviously I never really stopped doing so, but it’s good seeing her finding herself. I love it. Brings tears to my ears (literally). When editing Teresa asked me if this was me being witty, nope it’s my brain selecting any sense organ in the head and getting the wrong one!

Here I am in my office working away, she is around the house doing her thing, and we are probably in a better place than we ever have been, apart from the broken bones and cancer, but what’s that between friends 🙂

Out and about – Wed 10-Jan-2018

As usual, I still need Teresa’s help to dress, but I am dressed and mobile today 🙂

Still feeling good, got some work done then off to the physiotherapist at West Cornwall Hospital. Teresa dropped me off and went to park, nothing much for the physio to do because the broken collar bone is going nowhere so we need to wait for the CT scan in Feb to be reviewed by the orthopods to see if there is any tissue growth at all. We also confirmed the name of the doctor we saw at the fracture clinic who was so helpful, and also confirmed he had sent his report to the oncologist – joined up care for the broken bones at long last.

Teresa met me at the physio and we then (for the benefit of any locals reading this who know what I’m talking about) walked from the Hospital, down Causeway head to The Honeypot for lunch, then down Market Jew St to the Wharfside and back up again. I then headed back to the top of Causeway head where Teresa brought the car to pick me. I couldn’t handle going to where she had parked – it was a shorter distance to walk, but it was street parking – Teresa is a city-girl at heart! I always struggled with the small spaces people leave you in urban areas – partially due to driving a battleship with no turning circle (poor old Blossom). Also, it’s a narrow road and a bit of faffy driving to get out and the thought of handling other drivers, even as a passenger, had me stressed just thinking about it, so I took the “coward’s” (sensible) way out and walked to an easy place for us to meet up.

Came home, had a cup of tea, felt alright and did some work but at 4:30pm I faded and spent two hours asleep on sofa, had tea and then settled back down by 7:30pm. Although I woke from time to time, I slept for 12 hours. That was only 3 miles or so of walking (first half all downhill, second half all uphill) with a lunch break 1/3 of way through, so clearly I don’t have a lot of stamina and yet I did enjoy my time out. Need to work on that fitness, having been static for 3 months.

Fatigue vs. tired – Thu 11-Jan-2018

Those are my words, this is one of my language weaknesses, for me those two words serve as labels for what I am describing but may not mean that to others, so bear with me please.

Yesterday at 4:40pm it was exhaustion, my brain was working fine, just the body had given up. This morning after 14 hours sleep I am still very tired but I know that’s just the result of almost too much sleep. My brain is functioning and I can and need to push through this tiredness.

Fatigue, on the other hand, is not something you can “push though”, indeed when the cancer and pain meds are colluding and I get fatigued (my word) then my brain struggles with the idea of ideas and no amount of effort will get me moving anywhere, it’s like there’s nobody home, Teresa comments that my face goes blank.

It can be easy to confuse the two states (especially from the outside), which is, I know, something that can complicate the question of something like ME as well as cancer and a whole host of other problems. I know ME (I have one son and numerous friends with it) is a complicated condition, some sufferers can identify when to push and when not and some can’t and hence you find wildly varying opinions on whether it is real or not (I believe it is) and whether some people are letting it dominate their life (some do). Like everything else (cancer included) there is the underlying condition and that is what it is and there’s how you choose to work with it and I know people who handle it very well and some who don’t. We are all individuals and I have no need to comment on anyone else but me, but I would like to point out that illness is never black and white, it is always very specific to the individual and how they cope with it is equally individual.

Anyway, I would stress there is a difference between fatigue and being tired/exhausted – I’ve tried both, and give me exhaustion every time!

This morning Teresa suggested it might help me if I got dressed. For the last 2-3 months I have spent most of the time in my nighty because getting dressed, just for the house, is too painful. It has become a habit, a way of life, and that’s not a healthy place.

The truth is, the pain is getting easier and it would be nice to feel ’normal’, so I did as Teresa suggested. I also took the opportunity to shave my arms. I could only just get above the elbow on the good arm (with bad shoulder limiting movement of my right-hand side) but I got the shaving (and dressing) done.

As usual, I suspect most blokes will not understand why I wanted to shave my arms and why I feel better for it.

Most girls don’t need to shave their arms, but hair removal is something they often do and so they would, I think, understand.

I do feel better, I feel a lot better, and that feeds through emotionally, psychologically, …,

And here I am, though I needed help on my left underarm washing, damn hair under there is so long it needs plaiting – Teresa says I am exaggerating, but it’s a perception thing: I don’t like it, don’t care what anyone else thinks, this is about me feeling good about me, I need to trim that somehow.

I managed to get this t-shirt and dress on by myself, I’m almost normal – well apart from the massive pain killers, limited movement and the cancer, but let’s ignore that for now. I am HAPPY bean

And just to help me remember it’s 10am and this pic is me taking my cancer and anti-nausea pills.

So, another good day’s work but by Budgie time (8pm) I was ready for sleep and away I went 🙂

So near, so far – Fri 12-Jan-2017

Well, this morning

  • I got my nightie off by myself
  • I tried so hard to wash under my left arm, I sort of managed with soap and flannel and finger tips, but it was starting to hurt and I need to be really careful not to damage any tissue build-up around the break as that’s all that will hold me (the collar bone) together (if that), so I had to ask Teresa to rinse and do the deodorant on the left for me
  • I dressed myself in camisole, dress and knickers without help

So, I’m getting there, but not yet arrived. When Teresa is shopping today she is going to look for some sort of “sponge on a stick” either in the “body washing” section or the “kitchen sink, washing up area” of the supermarket to solve the reach problem and, although I prefer roll on, my daughter had the sensible idea of a spray to solve that problem – brilliant. Maybe tomorrow I can be completely self-sufficient. A limited number of clothing items I can do on my own, but it’s a fantastic start 🙂

I am paying the price for pushing things a bit too hard in terms of discomfort in the collar bone, but I don’t think I did any damage (fingers crossed).

You can’t see, but this is being typed two-handed (as it was yesterday as well), the pain is definitely getting easier.I am still on heavy pain killers, but previously they were not as effective as they seem to be now, so I assume the actual pain is decreasing?

Well, by the end of the today I have managed another full day of work. Over 5 days (Mon-Fri) I have done 3.9 days, which leaves me 1.1 days or about 8.5 hours to do over the weekend. One of the big advantages of working from home is that I can work when at my best, take time out for appointments, etc. and make up time over the weekend. In a sense I lose that separation of work and play and that can be a down side, however in my condition it means I can do what works for me, when it works for me, and that is fantastic.

I am in fact just editing this blog on Saturday morning, it’s 7am, but I’m awake, so why not.

Yesterday Teresa picked up:

  • A scrunchie on a stick
  • Aerosol version of my roll on

So, this morning I am planning to get washed and dressed all by myself – more on that next week.

Postscript

It is so easy to get trapped by habit and assumption.

Am I just tired and so can push a bit, or do I have fatigue and it’s dangerous to push?

I don’t need to get dressed, so I spend all day in a nighty.

I can’t reach to wash my left side, so I don’t try and depend on someone else

Sometimes I realise what I’m doing, at other times I need a (loving) nudge from outside, but even with the nudge I need to be willing to think outside of where I am and not let myself get sucked in.

This cancer WILL kill me (eventually), the least I can do is not let it take away from who I am by sitting and letting it get away with it.

So, I will now dress every day, I hope to be able to wash myself. I will try and find a way of showering on my own. I WILL not be dragged down into giving up. And the plain unvarnished truth is that even though I have a positive outlook and push hard to not be sucked in, I was, in part, letting it happen.

Thank you, Teresa, for loving me enough to push me and risk upsetting/hurting/annoying me by suggesting I need to get dressed. I did need to, I do need to and am darned glad I am doing.

The Bean, Pendeen, Fri 12th Jan -2018

2 Comments

  • Kate Mole

    Dear David,
    I’m so happy to hear that you have progressed such a long way. I know it might not SEEM a very long way, but I think it represents a lot that you are able to think about your toilette so positively. Looking after one’s appearance is not mere vanity, it’s a big milestone in recovery. And as usual, your writing is brave and heart-rending…. best wishes to you and lovely Teresa.
    From Kate.

  • Linda Camidge

    An interesting and optimistic post. Thanks for keeping us up to date. Something “WILL kill” each of us at some future date – it’s just that most of us remain in ignorance of what, or when. And with that cheerful thought…

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