Hello Nicola,

I just wanted to welcome you to Cancer Chat and express my sincere condolences on the passing of your mother. It must be a very difficult time for you and it is normal that you are now looking for answers even if sadly your mum is no longer with us. This is a great place to talk to others who will understand you and perhaps will help you piece a little of the jigsaw together. Rest assured though that even if you don't find all the answers to this mystery here, you will no doubt meet wonderful people who will support you the best they can.

So I'll let our wonderful community do all the talking now !

I hope you will enjoy Cancer Chat and that it will help you get through these difficult moments.

Best wishes,

Lucie, Cancer Chat Moderator

Hi Nicola,

Really sorry you lost your Mum to this horrid disease, im replying as my story is similar to yours except it is my Dad who died last November and like your Mum by the time he was admitted to hospital it was to late, we also will never know where Dads primary cancer was the Doctors just said they suspected gut.

I'm like you and really struggling with all this, my Dad was only in hospital a week to the day he died and had in fact been discharged from our local hospital 8 days before he died, he had a tumour in his eye and couldn't walk, eat and was in dreadful pain when our local hospital discharged him after a 16 hour stay and the Doctor told me he would have to sleep on his settee at home if he couldn't get upstairs to bed I even had to beg for some pain relief.

The sad thing is that he was only 66 and had never been ill previous to this, after one night back at home with him sleeping on the settee, weeing in a bucket and falling, bashing his head in the radiator I had to take him to Manchester Royal and BEG them to admitt him, he went blind that day and died the following week.

I have requested to see my Dads medical records from the local hospital, i'm sure they knew he was terminal and I realise his death was inevitable but I just wished they would have been honest and he could have died at home with his family, as it was he got put on a female medical ward, left without pants on, food left by the side of his bed with no attempt made to help him eat or drink and a total lack of care and compassion, the hospital didn't even bother to ring us on the day he died until 9am and they knew we lived an hours drive away but still waited for rush hour traffic and when we got there he had already died to be told he. had a bad night, why they didn't ring us in the night I'll never know.

Really sorry for going on but I have seen dogs treated better, criminals would certainly get better treatment and yet my Dad work hard all his life from being 15 and paid a lot into the system and never went to the Doctors or had any benefits, its soul destroying.

Hope i've not depressed you!

Kay

Hi Kay

Thank you for replying to my post, and likewise so sorry for your loss. It is such a huge shock and trying to understand and piece things together is so hard. I had never even heard of cancer of unknown primary before all of this and thought doctors were always able to tell where the cancer started. My mum was only 61 so like your dad is still young. The doctors at the hospital were mum was were brilliant but unfortunately it was a case of all the good doctors at the end. The local GPs shrugged everything off and diagnosed the everyday general stuff, instead of looking into things further, my mum had said for ages that she felt she had a lump in her lower right hand side and the times she mentioned it to the doctors and was told.....it might be IBS or part of some other general digestive complaint. I am really struggling with this side of things and cannot understand how you can have cancer for almost 5 years like the hospital believe and not be really bad until you are in final stages! Maybe mum was as strong as an ox and fought throughout it, I don't know.

It sounds like you had a really rough time with the hospital with your dad and that must make it even harder to understand and come to terms with. Likewise you must feel really let down by them.  I contacted the hospital after mum died and requested to see her consultant which they agreed too and bombarded him with lots of questions which did help to piece things together. I still have lots of more questions and will always have unanswered ones though. I did contact the local surgery and requested about seeing mums medical records but they said I would need a solicitor letter......how did you go about requesting your dads medical records? did you have to go down a legal route.

No worries at all about going on, speaking about it I think is a way of trying to help digest and understand things through such a awful time.

Take care and hope to hear back from you soon

Nicola

Hi Nicola,

Glad its not only me that feels like a dog with a bone, its just that I can't leave things alone and although I realise that my Dads death was inevitable, like you I have so many unanswered questions.

Part of me thinks that my Dad had hidden his symptoms until he couldn't hide them any longer, and had the Doctors told us that he was going to die and helped us to get him home with the right equipment and help or at least in a local hospice I wouldn't be so tormented about the way he suffered for that last week.

I haven't had to go down the legal route but I have only requested his hospital records in writing and you have to pay a fee, you see a couple of weeks before he died he saw an eye consultant who diagnosed a tumour but said it didn't look like cancer, he then (after a major battle) had an MRI scan and a few days after that a CT scan, these were both in our local hospital (the one that discharged him) it's the records from there that I want to see as I believe they knew that he had cancer.(we found out the day before he died the eye tumour was secondary cancer)

I did go and see Dads GP who is also my GP and he told me I could see Dads records there no problem, I would just need to request them in writing to the practice manager but my Dad never went to the GP's so its pointless looking at them.

Dads GP also told me his Mother in law died very quickly with cancer unknown primary, he paid for a private post mortem but the primary still wasn't found.

I feel this is the last thing I can do for my Dad, he was a great man with fantastic values and a great sense of humour and like you my mind is blown at how this can happen, i also want to put a complaint in after I see his records, not sure if it will make any difference but really don't want anyone else's loved one treated worse than a dog!

Take care

Kay xx

Hi Nichola, firstly condolances on the loss of your dear mum,( I dread the day it happens to mine)xx

I was diagnosed with bowel cancer in December, for about 2 months I had been anemic, bowel habits hadnt  changed much and any changes I put down to my medication for rheumatoid arthritus, I have monthly blood tests to check my liver function, and had no sighns or symptoms, the only reason it was found was because I had a very bad ra flare up and was vomiting bile, so they done a gall bladdre scan and foung something on my liver, so I had all the other cat scan MRi liver biopsy, which confirmned secondry mets on my liver, a colonoscopy showed a 5cm tumer in my colon, they will not operate and it is tratable not cureable,and finaly started chemo on the 3rd Feb, should have been 13th jan but I got pneumonia!. I never in a million years expected this to happen to me I dont smoke drink or never done recreational drugs,and im in for the big battle that i hope to win.

It has knocked me for six I can tell you, and im scared, I look after my 88 year old mum who is blind and I worry about her too, in case anything happens to me. I have had trhe first sidde effecdt days of chemo this week 2 days I couldnt get out of bed,but had to try for mum.

I have3 found a lot of comfort in this site although I dont answer many posts but it helps to read others posts and can make some things a bit clearer.

all the best Marion

Hi Kay

I know what you mean, I also feel that I can not leave things alone, and my mind relives it all the time.

I wonder also if mum hid some of her symptoms and how bad she felt at times, from us and then at the end she was not able to hide them as they were visual to everyone. The information I have found out about the dreaded C over the last couple of months is shocking, obviously there was things I did not know as I had not been in such direct contact with it until mum was poorly with it, but it is shocking. My partners uncle has also just died from the dreaded thing also and a colleagues mum....it seems to be all I hear at the moment and it really does upset me. My partners uncle was fit and healthy a month ago and in a month the cancer took hold and now he is gone. It's so shocking. I just wish that I could do something to help fight it and I can't leave it alone for what has happened with mum and others I know but also because of what it is generally! I wish I had a magic wand I guess but then I guess we all do.

Like you I feel I have to try and answer the questions and get to the bottom of it for mum, like you do for your dad, and I think that is good that we are.

I know sometimes the unknown primary can be very hard to find, it can even shrink and disappear altogether I have been told, which is another thing that stuns me! Luckily mum did not have to have a post mortem, so will not know even if her primary could have been seen, but being told it possible could not anyway made me glad she didn't.

I better get back to cooking my spag Bol!

Take care

Nicola x

Hi Marion

Thank you so much for replying to my post and I am so so sorry that you have been diagnosed with this awful dreaded horrible disease. I wish you every success with your treatment.

Thank you for sharing some of your story, mum also was vomiting bile initially back in 2010 where she also had issues with her gallbladder, pain in the upper right hand side, tenderness etc. She was admitted to hospital were they run some rests and said that she had enlarged bile duct but nothing to worry about. The sickness went off and mum carried on as normal, however she always had persistant indigestion, stomach pains and would suffer if she ate cheese or picked stuff! Mum had a hituis hernia so all that side of things  was put down to that and nothing else was investigated. This carried on until week before CHristmas when mum died. She had pains in her stomach, feeling sick, breathlessness etc.....2 months before she was sick all the time and lost so much weight. It was only then that things started to be taken seriously but unfortuanly it was too late!

Mum had 2 tumours one in the lower right side large bowel, and one in the smal bowel, which caused bowel obstructions and made her more poorly and unable to tolerate food. The docs believe that the cancer started in colon as primary but it may have also been the ovaries. The whole of the adbo area was covered in cancer nodules and it scary to think how it spreads and can be so so quick.

I hope your chemotherapy treatment goes well, I understand that the effects of it can make people feel very poorly and I understand with looking after your mum also, you must be feeling scared, unsure and stressed. It's a lot of pressure and if only we all had magic wands to make everything ok.

This site is a comfort and it does defo help chatting to people.

I wish you all the very best, take care and I hope to catch you soon.

Nicola x

Dear Nicola I know it is 7 years later and you might never get this but mid summer 2016 my mother had exact same symptoms they the sickness etc constant she lost loads weight in body legs everywhere she thought food poisoning to start it led too more same as you biopsies etc 3 or 4 months maybe more and they  still knew nothing reason doctors couldn't operate on your mum asap is due to the fact if it was bowel cancer they do a totally different procedure from if it started in the ovaries hence the reason they need to find out where it started to begin with to begin operating they found out too late it was bowel cancer with my mum she had her first chemo Oct 2016 and died 3 month to the day on Jan 26 2017 bowel cancer is easiest too stop at early stages but here we at stage 4 before we even knew she was ill seemseems your mum had bowel cancer like mines but they didn't realise im lawrie on my woman's account reply if you receive please