A forum for advanced pancreatic cancer issues

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jennifer
Posts: 6
Joined: Mon Apr 30, 2018 10:55 pm

THE HIDDEN ENEMY

Postby jennifer » Thu May 03, 2018 8:18 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: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: THE HIDDEN ENEMY

Postby Veema » Thu May 03, 2018 10:16 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: 271
Joined: Tue Aug 14, 2012 3:29 pm

Re: THE HIDDEN ENEMY

Postby PCUK Nurse Dianne » Fri May 04, 2018 1:08 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: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: THE HIDDEN ENEMY

Postby Justamo » Fri May 04, 2018 9:37 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: 6
Joined: Mon Apr 30, 2018 10:55 pm

Re: THE HIDDEN ENEMY

Postby jennifer » Mon May 07, 2018 10:02 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

jennifer
Posts: 6
Joined: Mon Apr 30, 2018 10:55 pm

Re: THE HIDDEN ENEMY

Postby jennifer » Tue Jun 05, 2018 6:08 pm

The Hidden Enemy has 'ambushed 'G again !
The recovery from jaundice took over 3 months to clear entirely but we had a few days respite and took the opportunity to do as much as possible with our 'quality time'. The oncologist needed an up to date scan to ensure all was optimum for chemotherapy to start so we returned to the hospital. On the morning of the scan G felt unwell when at the reception desk but decided to go on with things as planned .I 'phoned the liaison nurse who,post the scan, 'fast tracked ' G to the Assessment ward .At this point G was very cold and running a temperature so he stayed overnight to resolve the situation as an infection was suspected .The following day he was discharged with antibiotic meds and things seemed to stabilise .We kept our appointment with the oncologist who recommended that the first session of chemo be delayed for a week whilst G recovered .
All seemed to go well with the chemo session and the next day we visited the Garden Centre (G stayed in the car with the dogs )whilst I bought some bedding plants .From the centre we drove to a well known local viewpoint and surveyed the beauty of the Yorkshire Dales in the early evening sunshine ,breathtaking ! We returned home and I went to the shop for some 'odds and ends'(The shopping took about 20 minutes ) For a change I was lighthearted and hopeful as I opened the living room door,my hopes were dashed when I saw G shaking in his chair .I took his temperature (39.4) rang the ambulance,made a hot water bottle and put a duvet over the poor man(I know now that my actions were completely wrong and I should have cooled him down rather than heat him up !)So began 2 more weeks hospitalisation fighting sepsis from an unknown source .As I write G has been discharged to our daughter's apartment which has groundfloor amenities ,he has decided against any further chemo .A recent development has been pain in his left leg which has impeded his mobility(hence the move to the apartment )The rigorous fight against the sepsis meant confinement to a hospital room which was a necessary but depressing experience for him mentally .I think back to January when G was running the touchline at the Rugby Club ,now he hobbles on a zimmer,how can it all be ?

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: THE HIDDEN ENEMY

Postby Veema » Tue Jun 05, 2018 8:23 pm

It is a cruel disease Jennifer...the downslide can be rapid. With a bit of luck, he may pick up from the sepsis.

Much love

Vx

jennifer
Posts: 6
Joined: Mon Apr 30, 2018 10:55 pm

Re: THE HIDDEN ENEMY

Postby jennifer » Tue Jun 05, 2018 8:57 pm

We need all the 'luck'possible ,however for G to be confined by illness for the long term is out of the question and ,we just need effective pain control, I am confident he will receive this from our Macmillan nurses who are now extensively involved .We met 52 years ago on May 20th and would have celebrated 50 wonderful years of marriage on Jan 1st 2019.It is a love story that I didn't want to end but I am grateful for the time we've had together

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: THE HIDDEN ENEMY

Postby Justamo » Tue Jun 05, 2018 10:13 pm

Jennifer I'm so sorry for you and G, it's an awful time. I watched Peter deteriorate over 16 months, but there were some good times too. It's good that you have confidence in your MacMillan nurses; they are a tower of strength and support for both of you.

I suppose they've checked the painful leg for a blood clot ?

Love and prayers
Mo

PCUK Nurse Jeni
Posts: 1016
Joined: Mon Jun 14, 2010 1:30 pm

Re: THE HIDDEN ENEMY

Postby PCUK Nurse Jeni » Wed Jun 06, 2018 1:14 pm

Hello Jennifer,

My name is Jeni, and I am one of the nurses working for the charity. I am aware that my colleague Dianne has previously responded to your post.

I am very sorry to hear of these latest events for G and how unwell he has been again. Your story is so heartwarming, and the fact that you met so long ago and have been married for so long - its wonderful. Its lovely that you feel grateful for all the time you have had together - very precious.

I just wanted to refer to a bit of your post where you mention a new development of a pain in his left leg - can I ask has this been checked out? Is it swollen? Is it affecting his ability to use the leg? Is it red at all?

Patients with pancreatic cancer are particularly prone to developing blood clots, or Deep Vein Thrombosis (DVT for short). It might be a good idea to have this out ruled, because if it is this, he would need some form of anti-coagulant treatment to prevent further clots developing, or the clot moving to other parts of the body.

As Dianne posted previously, please do not hesitate to contact us if you wish to.

Kind regards,

Jeni Jones.

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