Thursday, 27 October 2016

Can't sleep

Here I am at silly O'clock, wide awake.
Day 14 after the operation. The district nurse came yesterday to check his wounds.
The main insision is healing nicely top and bottom. But on his waist there's a teeny overlap flap of skin and it's only just closed. She had a right prod and poke trying to open it up along there. She cleaned and dressed it advising him to take it easy and not move too much there. No sudden movements and no putting strain on it, else it could open.
The drain site is a bit 'iffy'. Now the drain site is actually only a week old so isn't as far along as the main 2 week old scar. She wasn't sure how far back it 'went' and I did wonder if she was going to stick her finger in it! Anyway, she dressed it with iodine soaked dressing which would dry it up and will be back in a week to check it. We've to watch for signs of infection and ring them back straight away.
Painwise - round the clock pain relief is keeping him docile. But he is being very brave about it. He's in most agony on moving - but the pain is from under the drain site - like something tore and isn't healing. He's having to use allsorts of different muscles to get in and out of chairs/bed as they are not hospital standard at home! The Nurse said to ring the GP if worse or no change. I wondered if he'd got a hernia - though I can't feel any bulges. She also said he could get odd sensations from his innards settling and filling the gap where the massive kidney had been.
Also she reminded him that he has had major surgery and it's a massive outrage to your body. He is only two weeks down the line and is doing brilliant considering.

Plus I've been thinking about him pre op ( makes me giggle - pre op! )
The cancer took his appetite and strength. For weeks he'd be coming in from work and just falling asleep knackered. Now at the time, pre diagnosis, we put it down to getting older - he's 47 and works hard manual days of upto 12 hours. Loss of appetite, could have been explained away by his getting in late and going 'past it' for much food and he does feel a little travel sick coming back down from the Western Lakes where he works a lot. I had worried though to friends about his weight loss. I'd noticed his shoulders and collar bones. He wasn't as muscly as he was and despite the weight loss -skinny legs even, he never lost his round belly. I mean, he was never fat. He was just big. But now it's obvious that the huge tumour was displacing everything making him look like he had a beer belly - he doesn't even drink!

So not only is his body recovering from the physical surgery. He's getting back his strength from feeding those cancer cells. I've been in the position of being very weak and having to take it slowly and there's nothing more frustrating than enforced laziness for want of a better word. He does feel frustrated at not being able to 'do' at will.

I don't know why I can't sleep. I thought once this op was out of the way I'd get a full night. I can't remember the last time I slept through. I'm like a frikken new born baby.  Looking after him is tiring. I mean he was pampered and  well looked after before! I was practically a 50s housewife but now I have the added worrying  about his scars too. We used to argue who was the most tired -  he said it was him physically tired after a day at work and I'd be saying it's me, mentally tired. Both debilitating.

His appetite is back and voracious so that's a good thing! The nurse said plenty of protein rich foods. So he's been getting three square meals a day. And whatever he asks for, I get it.

Applying for 'sick pay' is another headache. It's an absolute joke. He's self employed. But has paid all his dues like a good little taxpayer. We don't need the benefits for ever. But right now, he does.  Yes we have life and terminal illness insurance. We couldn't afford to add the premium for the critical illness and having read the small print - his cancer wouldn't count anyway. So off to I went after reading the booklet Macmillan gave us.
I actually rang up for something to do on the day of his operation and was told we could apply on the
phone but he'd need to be near me. Answer all the questions and job done.
Now in theory he should be able to apply for ESA but because of our postcode, we are now in Universal Credit territory. Which is fine, because that's what the law says.

I rang the helpline. After, and I kid ye not, 36 minutes on hold, I was told by a bored sounding Scottish bloke that I needed to claim UC instead online but he'd put me through for more advice.....

Continue to hold - to non stop Beethoven on a loop.

What seemed like hours later, I was told by what sounded like and 8 year old that I had to apply online.

So I looked.
What makes me amused is the fact we had to make wills before his operation as being unwed means we have no legal rights to anything. Technically single on all official forms - being engaged doesn't count!
However, for benefits we are suddenly treated as being married and he has to claim for me and I also have to apply at the the same time! Bonkers. It's a right old rigmarole too. And I found it most strange they didn't ask us for Nat Ins numbers.

I had to then tick a box to declare I was looking for work .....????
I sent an email to my 'work coach' whoever that maybe saying how ridiculous it was. And get this, if WE do qualify - which we won't - we'd get paid on 29th November!!!

Now  I'm all for welfare reforms- I deal with a lot of your typical benefit scroungers daily. But this system is preposterous. He got his free prescription card two days after we sent the form in -excellent. But UC?? I bet we don't get anything. I say 'we'. I mean 'he'. It made me a bit raaaaaar and wished I hadn't bothered - which is what they want.

Blogger is playing up so please excuse all the typing errors.
Till the next time....


  1. We had the same, hubby earn't just over their threshold and we got not a bean. 15 months without me bring home anything after paying in for years.

  2. The paragraph on your OH pre-op describes my hubby spot on. I can see he's not well but it's like talking to a brick wall. Needed sick pay 3 years ago after a third time triple hernia operation went wrong and ended up with hardly any money - so much so that he ended up going back to work far too early through necessity. I hope your OH keeps on improving and that you both soon feel a bit better.

  3. Oh dear, Rachel, I feel for you, I really do. What a worry having to go through the cancer, then all this healing stuff and now the benefits stuff. It really isn't fair and it makes my blood boil. No wonder you can't sleep; I'm not at all surprised. I hope that some of these problems are resolved soon so that your husband can focus on getting better. Helen xx

  4. The benefit system is going through a change and I don't think anyone knows wht they are doing. Your husband is cleary not fit for work so should clearly be entitled to incapasity benefit (old sick benefit). Martin had to go back to work too early after his accident because after the medical with IB they said he could claim unemployment benefit as there is other jobs he could do. He to is self employed and had a job to go back to. How do others get away with living on benefits beggers belief.
    Hope you both feel better soon.

  5. It always amazes me how some people get benefits and then people who really need them just to tide them over have to jump through hoops to get them, if indeed they do. And dealing with people who are supposed to be helping you is a nightmare. You just end up going around in circles.

    Mum's biggest problem after her op was a hole that wouldn't heal. It took 3 months for it to close up and the district nurse would measure it every week by sticking a cotton bud in it! She was also anaemic which we only found out because she literally didn't have the energy to get out of bed for about 3 days and she needed iron tablets.

    Sounds like HG is being very well looked after by you. Try and get as much rest as you can over the next week although with everything you're doing maybe you should be having more than the allocated half term off? xxx

  6. Sadly, as you have found, the benefits system is a pig's ear of a mess at the moment (and that's an insult to pigs). Hoping things sort out, but you can see why people get so desperate and down about it all.

    Take care, lovely lady, and look after yourself as well as him. ((((hugs)))). I'm sure the sleep patterns will sort out in time.
    J x

  7. What a nightmare for you having to deal with benefits. I am so glad that I won't have to because I think I would possibly end up killing somebody or at least doing them a nasty injury.
    Andy has also been pampered beyond belief. He could really get up and empty his own leg bag now but I still keep doing it.........only 'til Tuesday hopefully.
    You're doing a great job Rachel.