MUM DYING WITH PANCREATIC CANCER

[margb5343]

My mum had been unwell for most at of last year. Doctors just kept saying it was her thyroid or diabetes as she was so tired. After a 2 week spell at the beginning of November 2010 of vomiting bile, headaches, sleeping all the time and unable to get out of bed she was admitted to A & E. Had the various tests and doctors sent her home saying she had a flu virus. She had also had the doctor out twice to her at home again saying flu virus. Another week passed and my dad had to demand something was not right with her as the headaches were so severe. She got took into A & E again. Again they did all the various blood tests and were nearly going to send her home again. Luckily there was a doctor there who said he wanted her further investigated. They took her for a scan and advised she had a brain tumour which they would have to remove 2 days later. When she told us it was just so traumatic, I couldn't believe what I was hearing. We just thought it was a case of removing the tumour, then she would have chemo or radiothereapy. The surgery went well apart from her developing a blood clot so they had to open her up again to remove the blood clot. Five days later we were told that the brain tumour had been a secondary tumour and there was a primary tumour elsewhere, they suspected in the stomach. After a very stressful wait of nearly three weeks we were advised she had pancreatic cancer, at that point they would not discuss stage etc as mum had requested that she didnt want the family to know , she was just trying to protect us all. On the 7th January we were supposed to take Mum to see the oncologist but mum couldn't even get out of bed as she was just so weak and the weight was just dropping off her. The oncologist wouldnt see us without mum as he hadnt met us before. We eventually managed to see a consultant a week past friday who told us she had stage 4 pancreatic cancer which had also spread into the lymph nodes.They gave her 2 months to live. There was no treatment they could give her either as she was so weak. The following week her speech went and last thursday we were told she just had a matter of days to live. This disease is so aggresive. My mum is only 64 and is so fit, walks for miles and we just cannot believe the speed of it all. I just cannot come to terms with the fact she is dying and I will never see her again, she was also my best friend. The worst thing is the fact that she cannot speak now, its just so heartbreaking that we dont know what she wants. Last week she was able to write things but that has gone this week. She had a syringe driver fitted last Thursday. I just cannot believe the speed of this disease, from finding out her prognosis on the 7th January 2011to her waiting to die now. Its just a cruel world when your loved ones are going to be snatched from you. She had wanted to write us all letters but didnt get chance to as it just progressed so quickly. I am just so sad and cannot even begin to imagine life without my lovely caring mum. She nursed me through breast cancer myself 3 years ago and our family is hit with it once again. Why??????????????????????????????????????????????????????? I am so angry at the gp's as well not picking up on this.

[pauline]

Dear margb5343

I am so sorry to hear about your mum i can relate to a lot of things you have said my dad was diagnosed with

PC in April 2009 after 18 months of going back and forth to the doctors for all that time hes had spread and he passed away 7 weeks after diagnoses i am still so angry with the GP as well as the Macmillan nurse ( the most uncaring person i ever meet )

with everything i know now all i can say if spend as much time as possailbe with your mum.

Take care and sending lots of love to you your mum and the rest of your family

love & hugs

Pauline xxxx

[margb5343]

Hi Pauline

Thanks so much for your reply. Its nice to know someone who has felt the same pain as I think anyone who has not expereienced a loss cannot understand what you are going through. I relate to that totally myself as not being through this experience before. We have been spending all our hours at the hospital with her, its just such a shame she cannot speak. If we had been prepared, if our macmillan nurse had said to us this might be what might happen, ie loss of speech, rapid degenearation we may have been more prepared for it. My poor dad they had 47 happy years together, I just dont know how he will cope with life as they did everything together and didnt really have any outside interests other than the two of them being together.

luv Margaret

[pauline]

Hi Margaret ,

My mum was the same they done everything together from shopping to doing the garden the house seems so empty without dad it's as if the soul has been ripped out . mum goes out every day even if it's just to buy a paper they have always had a saying " what will be will be " she has come to terms with everything OK and coping OK with everything , the same can't be said for me, my sisters and my brother.... the anger and disbelief hasn't gone away in fact if anything it has got a lot worst

take care Margaret

love Pauline

[lynbo]

Thinking of you, its terrible.

I was told hearing is the last sense to leave, you know she loves you, so just keep talking to her, and telling her you love her too.

God bless you.

The same thing happened to my husband.

Xxxx

[margb5343]

lynbo wrote :

> Thinking of you, its terrible.

> I was told hearing is the last sense to leave, you know she loves you, so

> just keep talking to her, and telling her you love her too.

> God bless you.

> The same thing happened to my husband.

> Xxxx

Hi Lyn

thanks so much. We know she loves us loads. Its really strange the waiting for someone to die, its just so bizarre, cant get my head around it.

luv margaret xx

[PCUK Nurse Jeni]

Hello Margaret,

It is so awful to see what your mum, yourself and your family have been through. Unfortunately, when people have other medical problems, they often form the basis for investigations when they become unwell. This is not only the case with thyroid and diabetes, but also for other cases( ie:bowel cancer often gets overlooked if a person has irritable bowel). It should not be the case, but in reality, it is.

It looks as though the major signs of illness were what prompted your mum being admitted.Again, the misdiagnosis was probably due to the symptoms being similar to the flu -especially headaches and sickness. It is a pity, since the headaches were so severe, that a scan of the head was not ordered. This would have shown up the tumour, and would have prompted action to resolve the symptoms. Did they carry out a whole body scan also?

The tumour would account for the severe headaches and vomiting, and the lethargy. It would occupy a space in the brain, which is very sensitive to swelling. This gives rise to the symptoms your mum experienced. When they looked at the tumour under the microscope (the pathology), they could probably see that it did not have features of a brain primary, and this is why they would have looked for the source. Pathologists can do tests on tumours to see what they react to, and this tells them where it originated. It takes slightly longer to do the precise tests which are diagnostic of one cancer type or another.

Unfortunately, any cancer which spreads to the brain has a very poor prognosis. Any symptoms tend to develop quickly, hence the losing of the power to write and speech. Pancreatic cancer is a particularly aggressive cancer most of the time. It is possible that if your mum was fit enough, she could have had chemotherapy. But, at that stage of disease, the benefit would be questionable. It is very rare and unusual for pancreatic cancer to spread to the brain. However Lynne is absolutley right -the hearing is the last sense to go, so do continue to speak to her and let her know you are there. It would be good to make sure that if you need help caring for her that this is put in place.

Margaret, it is natural to feel anger. You are going through a huge trauma, and are also very shocked at what is happening. The rapidity of it all is not helping. Please feel free to email me at support@pancreaticcancer.org.uk. Perhaps via that email address, I can contact you and you can provide me your phone number? We could chat about things if you would like to?

Thinking of you at this time,

Jeni.

[lynbo]

Dear margaret

No-one can get their head round this, no matter when you find out.

Love to you and your family, and your mam xxxx

[ladywood]

Dear Margaret, I'm so sorry to hear about your mum. My sister also had a late diagnosis, she had been going to her GP for months with terrible pains and was just not taken seriously until it was too late. You and your Mum are in my thoughts. Marie

[margb5343]

ladywood wrote :

> Dear Margaret, I'm so sorry to hear about your mum. My sister also had a

> late diagnosis, she had been going to her GP for months with terrible

> pains and was just not taken seriously until it was too late. You and your

> Mum are in my thoughts. Marie

Thanks so much Marie. x

[pamela]

hello Margaret,

I'm sorry to hear about your mum.It's so heartbreaking. Just keep talking to your mum,she can hear you.

My dad kept going to the doctors,they were treating him for gastroenteritis and one gp asked why he'd gone just to get some gaviscon,the dr said he could get it over the counter.

fortunately dad came home for his last few weeks[that's what he wanted].It's an undescribable pain that i've only just started opening up about. Dad died in May.

I feel cross that not only have i lost some-one so close at a young age but there's been little research done in 40 years.

thinking of you.I understand.

pamx

[millyjo]

Dear Margaret,

I'm so sorry to here about your mum.

My mum passed away from this most unforgiving of diseases, and the heartache still lives with me.

Even though she had stopped talking, I spent every breathing moment possible with her, and constantly told her I loved her, cuddled her and caressed her, and now take some solace in that I gave her all the love I could possibly give, as I'm sure you are with your mum.

Life deals some cruel blows.

My thoughts are with you so very much.

Love

Millyjox

[Lou]

Margaret,

so sorry to hear about your mum.

My family and I have just gone through a very similar situation with our beloved mum, she passed away on 31 Dec, aged only 61 after only being diagnosed 5 WEEKS previous with secondary cancer (Stage 4) and we only got the pancreatic diagnosis 8 days before she died. Similar to you, misdiagnosis (gallstones or gall bladder infection we were told), and being passed from doctor, to specialist, to doctor and so on makes you become angry and frustrated so I know where you are coming from, it doesn't lessen the pain and emptiness either does it?

Reading the facts on PC from here re. its mortality rate, misdiagnosis, lack of funding and general public awareness has strengtened my families decision to do something positive about it and make our mum proud, in the hope that one day other families do not have to go through this sudden heartbreaking pain, I wouldn't wish it on anyone...

bless you and be strong for your family

Lou xx

[margb5343]

Hi Lou and Everyone

I cannot believe how many of us have such similar stories in the fact, its just been a matter of weeks our beloved ones have had from getting diagnosed with pancreatic cancer to their death. I realise breast cancer is more common as i had it myself 3 years ago and was so grateful for my treatment etc but breast cancer has an 80% survival rate compared to only 3% for pancreatic cancer and that is only for a maximum 5 years if that. I cannot understand why they are not putting more money into this aggressive cancer. I had never even heard of it until Mum was diagnosed with it but it needs to be pushed and have more funding put into it to save peoples lives. I am hoping they do a "Pancreatic Cancer Walk" like they do for Breast Cancer as I will definately be doing this for my mum. She did the breast cancer walk for me 2 years ago and raised over £600 so I need to do it for my poor mum and all those people who have lost their lives to this tragic disease.

On the subject of my mum, I just cannot grasp the fact I am never going to see her again. I know its only been a few days since her death but its been awful. Its just so empty at Dads house without my mum there. I just feel so so sad, I know I have got 2 lovely kids but I just feel such a big void in my life now and I cannot even imagine being happy again.

Lou, I bet it was such a shock for you only being a matter of a few weeks. Mum was diagnosed secondary brain tumour 28th Nov and then we didnt find out the prognosis until 7th Jan and then she passed away 22nd Jan. I just keep thinking life was so normal and nice 8 weeks ago and now its just like my life has been totally destroyed. How are you finding life now, has any pain eased at all or is it just the same as before.

Sorry if I am rambling on about nothing but I find it really helps me being on this website for possibly answers I need about this horrible and tragic disease.

luv margaret

xxx