A forum for advanced pancreatic cancer issues

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jennifer
Posts: 4
Joined: Mon Apr 30, 2018 9:55 pm

THE HIDDEN ENEMY

Postby jennifer » Thu May 03, 2018 7:18 am

On Feb 1 2018 G celebrated his 71 st birthday .We visited York ,had a lovely lunch at a super 'designer chef' restaurant where I gave G his birthday present (a steam train day in May on the Settle to Carlisle line) In the evening G went to the Rugby Club where he has been 1st team manager for the last 25 years and enjoyed his birthday greetings from 'the boys' It had been a lovely day . On the following Saturday G packed his Rugby bag as usual and set off for the game .Unusually he returned earlier than usual ,very tired and with a red rash on his upper torso . The next day, Sunday ,G (a Church Reader)was preaching but instead of staying for coffee after the service we came immediately home G said the rash had spread and started to itch . That evening we sat down to our Sunday roast but G's appetite wasn't good, the rash was red and the irritation severe .We both thought he had food poisoning ,possibly from a piece of fish he'd eaten on Friday.On Monday G got an emergency appointment to see his doctor who confirmed G had jaundice and took a blood sample .The results of the blood sample came back that evening with a scary bilirubin level of 550 (normal bilirubin level being 20 -30) G was now a very worrying yellow ,skin and eyes .The next day G was admitted to hospital ,tests taken, he had a scan and drainage procedure began (his urine was the colour of dark brown tar) The following day he had a bilary stent fitted to assist bilirubin drainage.
G was diagnosed with Stage 4 inoperable pancreatic cancer and our world turned upside down ! Other than the onset of the jaundice rash there had been no symptoms, G having excellent health throughout our 49 years of marriage .
Recovering from the jaundice has been tough ,he spent almost 4 weeks in hospital before being discharged and a further 4 weeks recuperating at our daughter's house (Our daughter has been fantastic although she too is devastated) During this time the incessant itching has had a debilitating effect on his health as he had broken sleep every night and sometimes didn't sleep at all.
We visited the oncologist 2 weeks ago who hopes to devise a chemo programme in the near future.
Unfortunately G has developed a further complication and is now back in hospital for observation. Whether or not these recent issues will affect his chemo chances we do not know .
It seems impossible that it is only a little over 12 weeks since we celebrated G's birthday in York,we had no idea that the hidden enemy of pancreatic cancer was lurking so destructively .We have wonderful support from family and friends who help to keep us from a vortex of despair but it breaks our hearts to see him so downcast and poor;y .

Veema
Posts: 466
Joined: Mon Feb 02, 2015 5:35 pm

Re: THE HIDDEN ENEMY

Postby Veema » Thu May 03, 2018 9:16 am

Hi Jennifer, sorry you've had to find us.

Jaundice is absolutely horrible and I think was the time my husband was most unwell throughout the whole progression of the disease. The itching is unbearable and I can understand G not sleeping and feeling pretty rotten...atarax is a strong antihistamine type drug and did help a little with the itching.

For chemo, they need to be up and walking about and in a reasonable state of health as the chemo itself can be fairly debilitating in some patients.

I'm sure you are aware that stage 4 is palliative care only, so make sure you get a referral to the palliative care team who will be an enormous help liaising with all the medical professionals, they can advise on different medications, get you any equipment you may need and just be there as a sounding board for all your concerns and worries. They often work out of the local hospice, which you may also like to have a look around, they provide so many other services alongside the most recognised end of life care (which you are obviously not needing right now), things like alternative therapies, talking groups, counselling, respite care etc. Even though you may not feel like you need this now, it's better to have them in place for when you do need them. It might also be handy to get a dietician referral, as often pancreatic cancer sufferers don't feel like eating and need some additional supplements to make sure they are getting the nutrients they need.

Financially, he will be entitled to attendance allowance, which is not means tested, this is at the higher rate too I think, so mobility is included, so you will also get a blue badge without question.

I think once he gets over this setback and you get a chemo plan (if that's what he chooses), you will feel much better in yourself. This limbo period is unsettling. In the mean time, I hope he recovers well from whatever complication he's currently in hospital for and can begin treatment.

Vx

PCUK Nurse Dianne
Posts: 260
Joined: Tue Aug 14, 2012 2:29 pm

Re: THE HIDDEN ENEMY

Postby PCUK Nurse Dianne » Fri May 04, 2018 12:08 pm

Good morning Jennifer,

Thank you for taking the time to share your story so eloquently. We do appreciate it takes some courage and humility to be able to do this. As you have already found, this is a very supportive place and we are sure you will value the input from your new 'forum family and friends'.

Jennifer may I also extend our thoughts and offer of support to you too. The support service is separate to the discussion forum and is a confidential service, so please do not hesitate to be in touch with us should you need, if we can help in any way at all.

Our support phone line is open from 10am - 4pm Monday to Friday, and we are also contactable via email if this is easier for you to manage at this time.

Please do not hesitate to touch base if this may be helpful for you.

With kind regards,

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Support line: 0808 801 0707
Email: nurse@pancreaticcancer.org.uk

Justamo
Posts: 464
Joined: Sun Sep 04, 2016 9:38 pm

Re: THE HIDDEN ENEMY

Postby Justamo » Fri May 04, 2018 8:37 pm

The itching nearly drove Peter up the wall. We tried everything, and then hit on Magicool Plus Spray for Itchy Skin. I got it from Amazon because the pharmacist said it would take a week if he ordered it from his supplier.

It seemed to help, and then Peter had a stent fitted which sorted out the jaundice.

Love, Mo

jennifer
Posts: 4
Joined: Mon Apr 30, 2018 9:55 pm

Re: THE HIDDEN ENEMY

Postby jennifer » Mon May 07, 2018 9:02 am

Thankyou for your support,it is invaluable to share the stories of others and I welcome the advice given .Kind regards to all on this hard road.Jennifer