Can anyone help ?

Hello, I hope someone can give me a bit of advice as I feel so lost and helpless and a bit guilty that I didn't do enough for my Dad.

My Dad went to his GP in April this year and they gave him co-codimal for his stomach pains, they got so bad that he actually drove himself to the A&E at the end of April where they kept him in for a check up. He was in hospital for a week but they could't do a scan due to the back log from the Bank holiday? They discharged him and a few weeks later he was sent for a Endoscopy, this showed a tumour but came back as non cancerous. After another month passed we got a letter to attend the [Name removed -moderator]cancer clinic, I was concerned as they hadn't confirmed that it was cancer yet and this was very upsetting for my Dad. However we attended the cancer clinic where they said they where starting my Dad on a 3 month course of Gemcitabine , at no point did they give us any info about what would happen to him etc and when we asked we where dismissed and told that they "had a few things up their sleeve". I kept my Dads spirits up as best I could until I done some research myself and realised that he was not going to survive.My Dad was fading away before my eyes, he went for a blood transfusion two and a half months into his Chemo and at the three month period, went for his scan, unfortunatly the results came back saying that the tumour had got bigger and there was a spot on his lung.

They told him to take a month off and come back for different treatment, this was on Wed the 5th Oct , by Sat I had to take him to hospital with excrutiating pains in his stomach on Sunday they put him on so much Morphine he was out cold, on Monday they moved him to another hospital, by Tuesday I was distraught at getting no answers that my mum and three sisters went to the hospital to demand to speak to the doctor, she told us he had a "BUG" and he was in no danger, and NO we could not visit outside of visting hours as it would distrupt other patients!.

On Wednesady my Dad called me from his hospital bed very upset saiyng that he wanted out of the hospital and to come and get him, I told him I would be there soon, an hour later the nurses called and said could I come up as the doctor wanted to talk to me ? when I got there a doctor told me that my dad had had some collapse and that they had to give hem CPR and that the cancer had spread to his vital organs and there was no cure ?the doctor gave me a medical term which I didn't unerstand ,I asked the doctor to write down what he had but he just gave me a funny look and said he would be back later , he didn't come back ! the next day the palliative team came and told me that it was his bowels that the blood wasn't getting to ! I explained what the doctor had said and she told me that was not what was on his medical notes and the docor would not be able to verify that without doing another full scan . So after my long story did my Dad die through some neglect ? as I haven't been told the truth by the Death certificate as it just says Advanced Pancreatic cancer (which he didn't have it was isolated!) and Lung Metatastis ?

If anyone knows anything can you help please.

x

Hi

You sound so confused and upset, understandable, the last part of your email suggests your dad had advanced pancreatic cancer that had spread to his lungs, that is the lung metastasis bit.

Pancreatic cancer is awful, fast, and not detected quick enough.

Did your dad see an oncologist?

Maybe you should ask for a meeting with the oncologist / consultant in charge.

In order for you and your family to understand what's happened.

Lynne x

Hi Lynne,

Thank you so much for replying to me, that has made my night that someone out there cared enough to write back. I just feel that we were dismissed in the hospital, my Dad died three weeks ago do you think I could go back now and ask for answers ? my worry is that the Surgeon at the [Name removed -moderator] told us when his results came through that although the tumour had got bigger it was still isolated ?and as I mentioned the Palliative team said that there was nothing in his notes to say that it had spread, will they tell me anything this long after ?

Thanks.

Helen.

Dear Helen

I can see how frustrated and upset you are, this is probably because this whole terrible ordeal has happened so quick, many people on this forum have experienced it, myself included.

My husband was 39, and diagnosis to death 7 weeks, we hardly knew what had hit us and he'd gone.

Then, like you, I was left with a big empty space of sadness and un answered questions.

You can ask for a meeting to clear up the bits you don't understand, if this will help you move on in your grief? I don't know? I got all Andy's notes from the hospital and GP and trawled through them with a friend, who's also a nurse.

I'd like to say it helped, but, it just made me angry, and it won't bring Andy back.

Many people on this forum tell of their loved ones being mis diagnosed, and told conflicting stories, because pancreatic cancer is such an awful cancer, that is hard to detect till its usually too late.

I have thrown myself into fund raising for PCUK, and raising awareness - that's how I cope.

Everyone is different though, maybe get a friend, or one of your sisters to go along with you to speak with the consultant.

I hope this helps?

Your not alone, I still question myself and what happened, and its been just 1 year.

Lynne xxxx

Hi Helen

I am so sorry to hear about your Dad, and the terrible ordeal that you have all gone through.

I am fairly certain that you, or certainly your mum (next of kin), should be allowed access to your Dad's notes, the hospital had a duty of care to your Dad, and if his illness wasn't explained sufficiently, or that you feel that he wasn't treated sufficiently, then I am sure that you have a case for - if not complaint - then at least a chat with your dad's consultant to clarify things in your mind.

PC is an horrendous disease - my mum has it, and unfortunately she has limited time left, it has now spread to her stomach. I can completely understand your confusion and anger and every other emotion under the sun, at best I feel completely useless and at worse I feel so guilty - all the if's and but's come in my head, but unfortunately, what's done is done now and my lovely mum doesn't have much longer left.

Please stay in touch - this forum is excellent, it has helped me so much, and I really hope that it helps you too.

louie xxx

hi

this sounds an awful scenario

i live in south Ayrshire--so i know of the [name removed -moderator] -usually really good--if " one " ever gets there in time with this horrific disease

need to go to bed soon --but promise to post again after a proper read at your post (later tomorrow )

thoughts

Helen xxx

hi Lynne

since you answered my first post end June you have been a great help and source of support

BUT you should be in bed sleeping or trying too--not reading these boards in the early hours

take care and thanks

Helen xx

Hi

I'm just glad I can help, I can't sleep, maybe 4/5 hours a night, the forum helps me feel I'm doing something positive, being in the house on my own on these dark nights is pretty grim

Thanks for looking out for me though.

Louie - hope yr coping ok

Helen & Helen - keep me updated on the latest

Xxxxx

Hi Helen,

Sorry to read your post - I lost my father to PC 6 weeks ago which was bad enough. But to have such a terrible experience, as I know others have too, with the poor level of care is just completely dreadful and unacceptable. I felt angry just reading about it.

My first thoughts are yes, you absolutely have a right to speak to someone about this and to get an explanation. But I also agree with Lynne that what is also important is how this will make you feel. Apart from understanding what happened to your dad there's also a point to be made so that there's some small chance that the next person will get better care, and the family will get better communication. But what's done is done and when you're feeling so devastated is making that point the best thing for you?

With the NHS I had a reasonable experience over the last 2 years with my dad (certainly compared to others) although did have to 'shout' and 'pursue' and 'demand' in hospitals. When my dad died the oncologist wrote my mum and me a letter saying how sorry he was and asking if we'd like to go and see him to ask any questions which I really appreciated. We felt he had been overly optimistic with timescales and when he finally gave dad 'a few months' he actually had 2 weeks. We didn't go and see him but I had had alot of contact with the oncologist and did have a good understanding of what had happened. My dad also liked him which was important to me, oddly.

I think whatever you decide - don't tackle it on your own. It will be difficult enough anyway. Do take someone with you and if your family don't feel they can then take a friend for support.

Rant and write on here any time.

Thinking of you xxx

Hi Lynne

try and sleep tight

and thanks take care

helen xx

just lost a patient of mine to this awful PC

saw her 5 weeks ago to take bloods--previously fit 72year old lady

--same vague symptoms ?? 3 months at most--died last Friday--so sad-reminds me so much of my mum from April to June

xx thoughts with everyone on these boards x

lynbo wrote :

> Dear Helen

> I can see how frustrated and upset you are, this is probably because this

> whole terrible ordeal has happened so quick, many people on this forum have

> experienced it, myself included.

> My husband was 39, and diagnosis to death 7 weeks, we hardly knew what had

> hit us and he'd gone.

> Then, like you, I was left with a big empty space of sadness and un

> answered questions.

> You can ask for a meeting to clear up the bits you don't understand, if

> this will help you move on in your grief? I don't know? I got all Andy's

> notes from the hospital and GP and trawled through them with a friend,

> who's also a nurse.

> I'd like to say it helped, but, it just made me angry, and it won't bring

> Andy back.

> Many people on this forum tell of their loved ones being mis diagnosed, and

> told conflicting stories, because pancreatic cancer is such an awful

> cancer, that is hard to detect till its usually too late.

> I have thrown myself into fund raising for PCUK, and raising awareness -

> that's how I cope.

> Everyone is different though, maybe get a friend, or one of your sisters to

> go along with you to speak with the consultant.

> I hope this helps?

> Your not alone, I still question myself and what happened, and its been

> just 1 year.

> Lynne xxxx

Hi Lynne, my heart is breaking reading you story I cannot imagine what it must be like to lose your partner to this horrible disease and so young too. I honestly feel for you and just want to say that my thoughts are with you and to let you know that you have helped me and other also in this terrible time and Andy will be so proud of you for all the work you are doing for Pancreatic Cancer. God Bless you xx

Hi first of all I would like to say thank you so much for all the caring replies that you have sent, It really does mean a lot to me and I have found that talking to people who have experience with this terrible disease is helping me.

I am still very distraught about the treatment my Dad received and I can understand why some people (my family included) think it best not to pursue things as it may be too upsetting with the hospitals etc but I can't help feel that I didn't do enough for my Dad.

So many things that happened are coming clearer in my mind now I am over the initial shock, for instance back in April my Dad went to see a doctor at the Gartnaval,he said that my dads results had came back and there was no cancer, he was not an expert on Pancreatic cancer he told me but he said he thought it may be cancer but it was isolated and had not spread, fair enough! I didnt see this doctor again until the day before my Dad died when I met him in a lift at the hospital, I informed him that my dad was dying and we were just waiting for him to go, he replied oh yes well your dad did have advanced cancer didn't he ? I was too stunned to ask any further as I was crying so much, why did he have this information months after when this was never the case, as the week before when my dad went for his final results his oncologist also said that it was still localised and they were looking at further treatments. At no time was my dad ever told the truth about how long he may have or what could go wrong, surely they are entiteld to give us more information instead of rushing us out of the office.

Even at the last test results a week and a half before he died, I thought it strange that there was a support woman there, all she did after we were rushed out of the office was ask my dad what pain releif he was on ? were is the support?

One of my other concerns is that they told us he was dying on Wednseday afternoon later that day they came in asking if they could switch of the vital fluids, we were so upset and didn't really understand this we asked what we should do and the nurse says some people agree and some don't but at least he would not be hanging on in pain, we agreed for her to switch them of and subsequently my dad lasted until Sat, did we do the wrong thing ?

I apologise if I am going on a bit but if this is standard procedure then ok but I do not feel that it was and I am convinced they didn't tell me the truth as he was just another dying old man , I also feel if he didn't go into hospital he would be here for a bit longer, he was not given a shower for days, and I told him on the Wednesday morning (he rang me from his mobile) to make sure they wash him, again starngly enough he went into the shower himself and collapsed ?

Once again thank you for listening to me.

Helen x

Hi Helen

I have just been reading this and im really shocked. My heart goes out to you. How upsetting for you all! There seems to be alot of unanswered questions you need answered and maybe getting a meeting with the hospital will give you some closure. Also as CFF says, it may also help in better care for someone else. Just make sure you feel strong enough to do this.

I know the first hospital my dad was in, the consultant did not deal with PC and the communication was extremely bad as i really think they had very little knowledge of PC, so we got transfered to another hospital further away to deal with this cancer.

I really hope you can get through this difficult time and hopefully get some answers.

Take care Rachel x