Bowel cancer, stoma, illestomy bags, my journey with my fathers illness

mum2one

Pleased to say we got the day out up the coast, we had 1 rain shower, but we were in hairdressers whilst we had dad in the cafe next dr, had a little wonder to Towyn, luch at our fav cafe, popped to Pensarn for 2ps, - just like old times.

We also went out for my bday to a lovely country pub, right by a canal, we hadn't been for yrs, so nice.

Sunday we took him to the local market, for fresh air.

Its tired him out today, he home made soup filled him up, (not meant to get full) so early ngt, then 2mor weve booked a trip - 2 hr horse drawn canal barge - can't wait.... thou taxi service for me!!

Considering everything he is doing pretty well xx

Torry_Quine

Thanks for the update.

ukmaggie45

So glad you're getting out and about with your Dad! :A

Hugs and Vibes to you and your family from Liverpool. :beer:

mum2one

2days plans didn't quite go to plan, he had another night of being sick, so just me and dd in a way it's worked out for the best , we had booked the 2hr cruise and although they get wheelchairs on/off at the half way stop he would have been stuck on boat it was a nice trip, were just going to aim for the 45min one xx

mum2one

To update...

I took DD away for the weekend, part of me felt really guilty, but they both insisted and the nurse also said be a good idea..

What happens.... When we rang home Sat, mum seemed quiet, we put it down to she was rushed off her feet.... Only when we got home Monday, did they tell us the truth, Dad collasped on Friday ngt / Sat morning - he collasped twice, he wouldn't let mum call an ambulance or ring me to come home.

Touch wood he has been a lot better, since Mon, he's back on the ok part of the roller coaster.

........... The last couple of days have just been one phone call after another, Tuesday, I spent 4 hrs on the phone... Thanks to McMillian - we got a lot done in a short time, things that I wouldn't have know about / we hadn't been told.

Ds1500 form - the less than 6 mths to live - got that from GP

Electricity - NPower - Told we may get some help - NPower have been absolutely amazing, I was in tears when I finished the call, due to the nature of high Elec bill £270 for 3 months, Npower have told me not to pay it, they have a small pot for grants - they cleared the lot...

And - Weve changed tariff - on the cancer tariff - £55 a month - do this for 12 months (even if we lose dad 2mor - were still entitled to it. This will make such a difference.

Water Rates - After running through the household income/expenditure / cancer - were entitled to a discount off the bill thats anything between 10 and 90% - even 10% is worth £40. I'm waiting for the forms

Attendance Allowance - Dads entilted to the high rate - gets rushed throu

Carers Allowance - Even thou have state pension, there not entitled to the carers allowance, but they get the underlying entitlement - which opens other drs

Council Tax - Once the carers premium gets the rubber stamp - we get a reduction.

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I would swop the world for dad to be better, and not have these grants etc, its little things like extra washing etc - the other day the washing machine was on non-stop and we had 5 loads for tumble drier - there was no other way to get stuff dry.

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Spoke to the press department of McMillain - they rang and asked would we be a case study, - we said yes, I gave a run down on the phone, the lady has emailed to confirm the background etc, sent some photos across. The way we have said if our story helps one person then that would be amazing, Without that one phone call, we wouldn't have been given any of this information.

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Depending on how he feels at weekend / what the weather is like, hoping to get a day out, its just taking it a day at a time, xx

mum2one

todays food craving...

black pudding, spring onions and cheese .... (we only have 1 out 3 in the house...

So a trip to Asda later x

pollyanna_26

Hi I've been offline for over a week and have just come to check on how things are . So glad to see Dad is still hanging in there .
Such good news about Macmillan . They are one of the few charities I still have time for . The practical and emotional support they offer is amazing . It must be such a relief to you all to have some of the burden lifted . Things are hard enough without worrying about the financial outlay needed at these times .
Look after yourself as much as you can . :A
polly x

mum2one

We had some good news - mums been given career allowance for dad (even thou shes doesn't see a penny - underlying entitlement), which means they upped downs Attendance allowance to the higher rate, *awaiting the letter... At a rough calculation he should get £240 back dated

Had paperwork throu for the elec, - 2 yrs fixed, make a massive help.

The food craving...Kippers

He's doing ok, we've had a really good week, we managed to get out Saturday and Sunday last weekend, Sat - went to the local farmshop, had a cuppa and icecream, then Sunday we went to the local Mere - saw some baby ducks - so cute, real cold wind...

This week, he's done well, he's tried eating bread, - touch wood gone down ok, its trial and error with what works / doesn't.

I've finished knitting the bedspread for them, (more mum - shades of lilac), with campervan.. too hot at ngt, but when he goes for a lie down he uses it. Nice to dee he can get the benefit as well.

We have an appointment at the hospice middle of May to see the doctor there.. sounds daft but its positive as were not going to lose him 2mor.

xx

Torry_Quine

Great to hear the latest.

mum2one

typical man.... did the online shopping last ngt - do you fancy anything.... no... then today, I really fancy a penguin biscuit....luckly I was nipping out.

He had his visit from the hospice nurse, she was really impressed with what he has been eating, really pleased that he has no more falls etc....

I've uploaded some photos, so hope no one minds but I thought I would share the one of the special blanket..

https://www.flickr.com/photos/115767032@N02/26602809842/in/dateposted-public/