gutted!

[auri30]

my dad was diagnosed with pancreatic cancer in november, he was due to have surgery in january and when he was told the operation hadn't taken place, our world fell apart! my dad was devestated but he was surprisingly well! A week passed and he saw his oncologist and he was told chemo wasn't really going to help as my dad was so well it would only offered him a few extra months if that! he was told 6-12 months! my dad was gutted all the family was! my dad had put on a stone in weight and fekt quite well, but 2 weeks after he was told that he was terminally ill he became so sick !! He has a colostomy bag and he was badly constipated! He was sick every 3 minutes of dry retching, after a week with no food he was painfully thin and dehydrated! after visits from the doctor and still in terrible pain we ran for a ambulance ! 10 hours in a&e he was admitted down to surgical assessment ward and 3 litre of fluids were drained he stopped being sick and felt very well but still couldnt eat ! 14 days with no food , he needed a scan! doctors said he had a blockage in his bowel and a operation would need to be done to see if they could clear it! we were told yesterday that they can not unblock it and he will have 2 -6 weeks ! he will never eat again, or go home ! we saw him today and he looks so well as he is being fed a bag of nutrients !! its soul destroying that he is so normal

[DRAD3]

Hello and welcome to the forum - Just so sorry to hear about your Dad and the terrible time he has had and continues to have. There seems to be so much going on and I have so many questions on your behalf! Why no surgery - assume this is due to tumour invading arteries? why no chemo, when he seemed "well"?, why unable to deal with blockage? - have they been clear as to why they can't help with these things? Why has it gone from a 4-6 month timeframe to 2-6 weeks - was something missed initially? I would advise you to telephone or email the support team directly, if you can, as I am sure they will be able to help you make sense of it all and suggest what you may be able to do, if anything. I can understand that you will be feeling totally devastated as well as overwhelmed with the situation and my heart goes out to you. I do hope that we can at least offer you our support and a collective shoulder to cry on at this awful time and that you get the answers you need.

Sending you and your Dad love and strength.

Deb

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[PCUK Nurse Dianne]

Dear Auri30,

Welcome to the forum. I am so sorry to hear your devastating story of your father's illness thus far. I can imagine this must be quite a shock to you all and such a sad, difficult time. I would like to email you independently of the forum and talk to you to see if we can ensure the remainder of your father's care is of a better standard.

I am so sorry to hear this has been such a devastating experience for you and your family.

Kind regards,

Dianne

Support team.

[auri30]

Thank you for your messages!! my dad's situation was hard from the start ill try and explain it without going on!!!!!! basically June last year he had a scan he had severe diverticulitis and the scan also showed a lesion in his pancreas! 4 months went on and by this point my dad had lost 4 stone was in so much pain and sleeping constantly! he had seen the doctor in these months, but in October the doctor sent him to hospital as pain so bad! my dad had to have a emergency op and a colostomy bag! after the op doctors had told him they removed a small tumour which they believed was cancer! Doctors had even said to us that he was recovering well and not to call back my brother back from abroad as there was no need for concern!

He was making good recovery and 4 weeks after his stoma , he went back to see his surgeon for a routine appointment, this is when they told him the news that the tumour they removed was colon cancer, and they had a concern as they had tested some lymph nodes and was suspicious 1 may have cancerous cells! They referred him to [name removed - moderator] and we were waiting for them to get in touch! We waited a few days without hearing so phoned ourselves and was told no referral had been made! Eventually my dad was seen at [ name removed - moderator] hospital for more scans etc in mid December ! He had to be operated on in January 22nd he was to have part of his pancreas removed and spleen but when it came to surgery they couldn't operate as they said it had spread we were all devastated!!! He left the hospital and had to wait a week as they done biopsies needed to wait for results! He was seen by his oncologist the following week , he was told he had peritoneal cancer and due to this, chemo wouldn't help as much as usual, and advised against it as he was so well and this would only give him a couple of extra months! and probably make him quite sick! doctors said 6-12 months we were astonished!

2 weeks after prognosis my dad had tummy ache! he put it down to Chinese medicine we were making him take! the pain got worse he stopped eating and was sick very sick, dry retching constantly , doctors came to the house and prescribed movicol but didn't help ! His eyes sunken in his face his teeth to big for his mouth! doctor told us they couldn't send him to hospital as he was terminally ill! 8 days without food, he was dehydrated needed urgent medical attention so we called a ambulance and like I said before, 10 hours in a&e doctor wanted to send him home!!

My brother who was with him refused and insisted he needed help! so 3 litres drained by a tube in his nose to his stomach! He was instantly relieved of pain and the sickness! d

Doctors said there was a blockage in his stomach and needed another op! The op was unsuccessful and we were told he would never to be able to eat again! That was last Sunday and since then he has a bag of nutrients being fed and fluids only ! He will be moved to a hospice at weekend!Wwe have made a official complaint about his care! Its not going to help him we know ! We feel justice is needed!!! So many questions need answering!!!!!

[petra]

hi ari, so sorry to hear of your dad, i cant comment on his care but i do know how you feel!! you will get a lot of info amd support from the members of this forum and professional advice from the nurses! hope you and your family re ok and coping and that your dad is as well as he can be, love from petra xxxxx

[DRAD3]

So very sorry to hear what an awful ordeal your poor Dad has gone through. This cancer can cause so much damage by the time it is detected and it is often the case that people suffer so much going through the process of trying to find out exactly what is going on. You must be absolutely devastated as well as in shock and I understand your anger (I still have that too). There does seem to be a definite line between what hospitals can do to save lives and a point when they say there is nothing we can do and you are put in the hands of palliative care services (hospice). I can remember this myself and it is a dreadful feeling, knowing what that means - I am so sorry. You will hear from others that hospices are wonderful places in these circumstances and I do hope that they are able to help your Dad as well as you and your family in what can only be a most terrible time. Know that we are here for you and send you love and strength.

Deb

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