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My mums story

Posted: Thu Mar 02, 2017 6:42 pm
by Blossom
Hi everyone my mum is 83 and over a period of about 3 months I noticed her appetite had decreased and she had lost some weight, not a bad thing I thought because she was a bit overweight in the first place she also had a few tummy upsets on the odd day and it didn't occur to her to tell me that her stools were very pale. Then about 5 weeks ago at the weekend, we were out and I noticed that she looked really yellow. On the Monday morning (I live with her) I spoke to her about it and she said she hadn't noticed but I telephoned the Doctors and got an appointment that afternoon. Before we went my mum said shall I take a water sample and I said why not but was shocked when I saw it because it was brown. Anyway the outcome was I took her to the hospital for blood tests that afternoon and the next day got a call from the Doctors saying her liver enzymes were deranged mum needed to go straight to A&E. they kept her in and after an ultrasound and numerous MRI's and a CT over 2 weeks they found she had a tumor on the head of her pancreas. They passed her medical notes over to another hospital and after a MDT meeting 2 weeks later she was called in for a chat with the Surgeon. He told her she had a tumor (this was the first time she had heard this as we had kept it from her) and went on to tell her about the Whipples Procedure which he was prepared to do on her until I showed him some discharge papers from another hospital this time last year stating that my mum needed a heart bypass but because of her kidney disease was unable to do it, well, this changed everything. The surgeon then said in light of this, he could no longer consider doing such a massive operation on her also chemotherapy would also be out of the question she would be referred back to the original hospital where in the not too distant future they would put in a stent by ERCP. My mum took all this remarkabley well which really surprised all of us although I do think the buildup of waste in her body has effected her brain somewhat. This is where we are right now waiting to hear if the consultant at the original hospital is going to put in a stent before things get worse. I wanted to ask, has anyone else been told because of their general health they are unable to have the op and how have things been for them. Also can a person all of a sudden get worse out of the blue or is it a gradual thing because to be perfectly honest apart from the jaundice, odd tummy upset and decreased appetite she says she feels fine. Has anyone else experienced a change In a persons behavior because of the jaundice. I would appreciate anyone's feedback thank you

Re: My mums story

Posted: Thu Mar 02, 2017 6:58 pm
by Marmalade
Hi Blossom,

So sorry to hear about your Mum. You are in very good company here and yes, this is the situation my husband found himself in. Our thread is on the carers section and called "Our Journey without chemo" this situation affects many older people because by the time we are over eighty many of us have developed complex health issues which make general anaesthetics and toxic chemo impossible. The stent will probably get done and you may also be offered some gentle chemo to manage symptoms. It is shocking to have to face a life limiting diagnosis but sudden death is no easier to face.

You will find the nurses on here are fantastic and you and your Mum should speak to them for expert advice or reassurance.

I always advise people to get form DS1500 from the hospital and make sure it is sent to Macmillan finance who will sort out your Mums Attendance Allowance. It is her right and you may well need this to help with carers and additional costs. You also need to speak to your GP and get a referral to your palliative care team who will offer courses that will help you understand the condition and deal with some of the issues that may arise.

I am on my way out now but will post more later.

Please know that everyone on here understands this situation and will be here to give whatever support we can

Much love

Marmalade x

Re: My mums story

Posted: Thu Mar 02, 2017 7:49 pm
by Quickasyoucan
Hi blossom
Dad's story is v similar except he had no health problems until he went yellow last September. He did have a stent put in which helped ease his jaundice. We also were told no whipple but because of a possible liver met. He tried chemo but it made him v I'll and we have had 5 hospital admissions since September. The cancer has now sped up and it is affecting him more each day. Some people are more fortunate. Justamo's husband on here has had gentle chemo and I believe is doing much better.
Try and get the stent asap so mum doesn't lose weight and condition and treasure all the well time she has.

Re: My mums story

Posted: Fri Mar 03, 2017 8:32 am
by Elaine123
Hi Blossom your Mums journey with PC mirrors so many of forum members loved ones ow journey. You will find a lot of knowledge on here and a huge support for not only your mum but for yourself. Pete had the stent put in and there was a huge improvement as his jaundice started to clear also all the associated problems that the jaundice brings with it. Marmalade has given you excellent advice about how to access all the support you and your Mum may need so make a start on that as soon as you can. Support is invaluable in dealing with this disease. Good luck with accessing it.
Elaine
X

Re: My mums story

Posted: Fri Mar 03, 2017 11:45 am
by PCUK Nurse Jeni
Hi Blossom,

Welcome to the forums, and thank you for your post.

I am sorry to hear about your mum's recent diagnosis of pancreatic cancer - and the fact that her other health issues are impacting on treatment options for her - and this would be the correct course of action if your mum has kidney disease and cardiac issues. As others have said, this would be a contraindication for both complex surgery and chemotherapy.

It would be useful if you had contact details for a nurse at the original hospital, to see if they might have any information about when the stent might be inserted.

Has your mum been given pancreatic enzymes, such as creon, to aid her digestion? This is important. Also a dietitian referral, and a Community Macmillan Nurse referral - not that she has to avail of this right now if she does not want/need, but to have the service in place going forward.


Should you wish to contact us for any reason, please see the email address at the bottom of this signature.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Re: My mums story

Posted: Sun Mar 05, 2017 9:27 pm
by Blossom
Hi everyone thank you all for the advice and information it means a lot x

Re: My mums story

Posted: Mon Mar 06, 2017 12:12 pm
by Elaine123
Hi Blossom just posting to say I hope you make progress in getting support for your Mum and that she had a good weekend. Take care
Elaine
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Re: My mums story

Posted: Mon Mar 06, 2017 12:43 pm
by Blossom
Hi mum has told me for the last two days she has had bleeding, red blood when she goes to the toilet I have phone her CNS and she is going to speak to the consultant and phone me back later. Can anyone tell me is this another symptom or is it not connected ?

Re: My mums story

Posted: Tue Mar 07, 2017 12:41 am
by Marmalade
Hi Blossom,

Sorry to hear of Mums sympthoms, it's impossible to say as lay people what. Is causing the problem you describe, I suggest you called the nurses on here if you can't speak to your GP which is where I would go. As things progress all sorts of things can happen that would cause bleeding but it is important that the person responsible for her care and comfort, the GP is aware of changes so that your Mum can be given appropriate care and or treatment.

Please don't worry about "bothering the doctor" or the hospice it's their job and if you call the surgery the doctor will often call. You back.

Thinking of you and sending you love

Marmalade xx

Re: My mums story

Posted: Tue Mar 07, 2017 10:45 am
by PCUK Nurse Rachel C
Dear Blossom,

I'm sorry to hear that Mum is also experiencing some bleeding when she goes to the toilet. I am sure that that this is worrying for Mum and also yourself. Blossom, my name is Rachel and I one of the nurses that works for the charity, alongside Jeni, Dianne and Chris.

As Marmalade has said, informing your Mums GP would be the best course of action, as they will have Mums up to date medical information. Also, please do feel free to call through to us on the support service, if you wish to discuss Mums situation further. I appreciate that this must be a very difficult time for you, so please do not hesitate in lifting the phone, or if easier emailing us (details below).

Kindest regards,

Rachel

Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Re: My mums story

Posted: Wed Mar 15, 2017 1:30 pm
by raun cesar
Sorry to hear about your mom, I can visualize the chemo and hospitals are depressing. This forum is a great platform to share and learn from each others experiences

Take care

Re: My mums story

Posted: Tue Mar 21, 2017 7:49 pm
by arthur.b
I am so sorry for your mother and for you too. It must be hard right now, but never give up!