So afraid

[LizzyD]

My husband Ivan was dianosed with PC after his bile duct blocked last October. He had a stent fitted very successfully but was not offered the Whipple because of his age. He was offered Chemo but was told that that the prognosis was 6 to 8 months without chemo and 10 to 12 months with. Because of the side effects of the chemo and the relatively short gain he made the dicision to decline the chemo. He did quite well until Feb when one day he couldn't pass water. He was admitted to hospital and diagnosed with prostate cancer and fitted with a permanent catheter. No treatment for the prostate was offered. When the GP realised this he remonstrated with the consultant as it is nothing to do with the PC. Unfortunately just before the prostate treatment was about to start the exit from his stomach became blocked by the PC tumour and he had to have a jejunostomy to reroute things. The prostate cancer treatment began 3 weeks ago and he had a bone scan last week. The doctor told us the prostate cancer has mestastasised to the abdominal lymph glands and his bones. I feel devastated that it's not the PC giving the most problem, but a problem which should have been treated in February. I feel the situation is very very serious now but nobody tells me HOW serious this is for him. I just lie awake all night worrying and crying. Thank you for listening,

LizzyD

[lynbo]

Oh Lizzy

I feel for you, is your husbands pain under control?

This is a big thing, as I know the pain control must be difficult with having pc now this too.

Have you got support from family? Or someone who can stay with you? It's awful going to bed crying, as things seem 100 times worse, than when you are up and about - active during the day.

Maybe talk to the consultant and find out exactly what's what? Ask for a meeting, take someone with you?

Thinking of you

Lynne xxx

[LizzyD]

Hi Lynne,

The strange thing is that Ivan has never been in pain. We have Tramadol and paracetamol and he has never asked for either. The GP has been today and is assigning me a Macmillan nurse so I am hoping she can help me. The consultants he sees are very approachable but Ivan is always there too so I don't feel I can ask what it all means or what his current prognosis is. He, himself doesn't want to know. We have a lovely son and daughter-in-law who are supportive but they live some distance away and have very high powered jobs. My son and Ivan have always been very close so he too is devastated. Thank you so much for your helpful reply, Lynne.

Lizzy

[lynbo]

Hi Lizzy

You know what, if your husband doesn't want to know, maybe go with that?

Ive had counselling today, and we discussed how I coped whilst my husband was ill, as I had no Macmillan nurse or district nurse, and Andy was on 26 tablets a day, and still in pain!

I said, I'm glad, then, that we just took every day and hurdle as it come, I'm glad we didn't know any type of timescale, otherwise it would have been like sitting on a time bomb? And realistically, they cannot say for deffo what will happen?

Everyone is different though, I'm just saying how I dealt with things, I hope it helps, I would always say, love a lot, talk a lot and cherish every minute, as really, life should be like that without having a horrible illness to make it that way

Much love xxxx

[LizzyD]

Hi Lynne,

You are so right. It helps so much to have someone say that to me. I will try to take each day as it comes and not look too far in front. It is merciful that Ivan isn't in pain, so I should be very thankful for that. Thank you so much fro your wise words,

Love from Lizzy.

[lynbo]

Hi lizzy

your welcome, im glad that you can be a little bit positive, i always say that if someone had told me and Andy how long, then they might as well have given us both a lethel injection there and then?

It doesnt matter how brave, or how much you try to plan, who, can really deal with such an enormous thing like that.

Positive thinking, chin up, and look after yourselves!

xxxxxxxxxxxx

[ali]

Hello Lizzy

I lost my mum nearly four weeks ago,she had not felt that great since maybe Feb/but deff. since Mother's Day beg, April.

She seemed to have some abdominal discomfort/fullness since end of Jan.

Anyway was not eating or could hardly eat due to nausea not actively vomiting.

Admitted to hospital thurs 26/05/11 and was diagnosed or we as a family were actually told on tues 07/06/11 that she had advanced PC with liver mets.---real shock ( although i thought it was going to be serious )-having known about an enlarged liver since 11/05/11.

Anyway my sister and i ( and she agreed to come home for some decent care---the ward care was really quite poor---since the staff did not realise how ill and sick she was--Kept trying to FEED her ) brought her home on Wed 08/06/11 and she slept away on the Sun 12/06/11 evening fairly peacefully BUT so too quick for us.

We did expect to have her home for some quality few weeks and so did she.

All i can say although very hard for us as a family---but i do not think she actually suffered too much so she was probably quite lucky " getting away " (as someone put it to me ) in a dignified manner, as no incontinence etc. BUT i can say the last four weeks yest. since she got home and slept away have been very up and down.

Take Care

Helen xx

p.s. my mum had just turned 79yrs but was healthy and had no chronic illnesses--was golfing up till Feb 11. xx

[ali]

Hi Lynne

Sure you will see this reply.

Donation cheque posted Mon. to PCUK.

Take Care

Helen xxx

[lynbo]

Hi Helen

Again, your mums story is so much like my Andy.

Good work with the pcuk cheque, you take care

Xxxxxx

[LizzyD]

Hi Helen,

I am so sorry to hear about your Mum. It is bad enough to have someone close so very ill, but to have such abysmal care in hospital is beyond the pale. It is so distressing and makes you feel so helpless. One stay in hospital Ivan had was truly awful so I know how you must have felt. Ivan's tumour is at the head of the pancreas and was only discovered when his bile duct blocked giving dreadful jaundice. The hospital did not tell us he had cancer of the pancreas just that a lump was blocking the duct and that they had put a stent in. It was left to our delightful GP to break the news that Ivan had inoperable cancer and that he was on palliative care only with a very poor prognosis. I'm glad your Mum didn't suffer the terrible pain others seem to have and think it is so merciful that Ivan doesn't either. He has a lot of vomiting, diarrhoea and discomfort just like your Mum did. His appetite is poor. Fortunately he was 20 stone to start with and has now lost 6 stone since October last year. Thank you for giving me some comfort Helen, and I hope that you too will soon find some positives. It is so kind of you to offer help to others when you have lost your Mum to this awful disease.

Lizzy