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PCUK Nurse Rachel R
Posts: 10
Joined: Thu Jan 25, 2018 10:52 am

Re: This cruel disease

Postby PCUK Nurse Rachel R » Tue May 22, 2018 2:47 pm

Hi KeithKerry

That is so good to hear that your Daughter is keeping so well. Well done her.

As you say another treatment down. I do wish you all the best as she heads towards the re-staging scan.

With Kind wishes

Rachel

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

KeithKerry
Posts: 10
Joined: Fri Apr 13, 2018 7:44 pm

Re: This cruel disease

Postby KeithKerry » Mon May 28, 2018 9:27 pm

Another one done. Next Friday is a rest week. My daughter is glad of that break as it is the school holidays. She's still doing great, looks well, and incredibly, she eats without Creon at times still with no ill effects.

I find all of this incredibly difficult much of the time, especially when alone. And yet she still smiles, she still laughs, and she carries on with her life with an enthusiasm and determination that continues to make me feel both humble and grateful in equal parts.

If she can do that, then so can I.

Veema
Posts: 471
Joined: Mon Feb 02, 2015 5:35 pm

Re: This cruel disease

Postby Veema » Tue May 29, 2018 7:08 pm

She has entirely the right attitude. I am convinced that it was his positive attitude that got my husband as much time as we got.

I hope she enjoys the school holidays.

Vx

KeithKerry
Posts: 10
Joined: Fri Apr 13, 2018 7:44 pm

Re: This cruel disease

Postby KeithKerry » Tue May 29, 2018 9:38 pm

Thank you for the encouragement Veema. It really does help to read friendly and supportive words from people that have been through this same awful situation.

KeithKerry
Posts: 10
Joined: Fri Apr 13, 2018 7:44 pm

Re: This cruel disease

Postby KeithKerry » Wed Jun 06, 2018 8:05 pm

Another week successfully negotiated. A week that included another dose of chemotherapy and an appointment with an Oncologist. Another week where I once again was filled with such pride for the fierce independence and determination that my daughter displays in the face of such a daunting situation. Another week when I am again humbled by such a depth of will to keep living life normally and productively.

The original plan was for 6 treatments and then a scan. But because she has coped with the chemotherapy so well, is still asymptomatic, has entirely normal bloods, and is eating well, the decision was to have a further 3 treatments first, and then a scan. If there has been no tumour growth after that, then a further 3 months of the same regimen, and then another scan. Then we go from there.

That news had an amazing effect on us all. It is of course still an absolutely awful situation, but the tentatively hopeful news of at least the possibility of some respite from the progression of the disease, coupled with a decent quality of life, is not to be scoffed at. I have learned that one thing at least from all of this heartache and pain.

If you are in a similar situation to us, just remember that being positive can help everyone involved, at least from a psychological point of view, and encouraging and supporting your loved one to fight can be therapeutic for you just as much as it can be for them.

I know that there are no guarantees with this disease and I fully understand that it has as many downs as it will have ups. At times it seems like the former outweighs the latter, but take everything positive that you can. I want my daughter to understand that we will help and encourage her to enjoy her life in a productive and rewarding way for as long as is possible. In return she clearly wants us to enjoy her life with her.

Nobody knows what the future holds for any of us. Live it and love it as the saying goes.

All for one and one for all.

PCUK Nurse Jeni
Posts: 990
Joined: Mon Jun 14, 2010 12:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Thu Jun 07, 2018 11:50 am

Dear Keith,

This is really positive news, and its great to hear how well your daughter is tolerating the chemo.

I am sure it is reassuring for you all, and as you say, take every positive you get.

Wishing your daughter all the best for her future treatments.

Kind regards,

Jeni.

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

toodotty
Posts: 4
Joined: Sat Jun 09, 2018 3:17 pm

Re: This cruel disease

Postby toodotty » Mon Jun 11, 2018 3:23 pm

Hi KeithKerry,
I am a Stage 4 PC sufferer, probably diagnosed at about the same time as your daughter. I have two (nearly adult) boys and I was a very fit 55 year old who enjoyed the outdoors, cycling, swimming, horse-riding etc. I too was overwhelmed by the diagnosis as my only symptoms were weight-loss and indigestion. Like you both, I also spent a great deal of time researching on the internet and was shocked at how little things have progressed and how terrible the survival rate is compared to the rest of Europe.
I fully understand your own suffering, having accepted the situation my main thoughts were "thank goodness it is me and not one of my children", that would truly break my heart.

I would also totally agree with your comment about "being written off". Frankly having just digested the fact that I probably have terminal cancer, then I do not want to discuss "end of life care". Not there yet thank you very much, I have still plenty of living to do and like your daughter need people to "bat for me".

HOPE is a very important part of the treatment, but my own experience of the NHS is that this really isn't fostered in any way. Even my cancer specialist asked if I wanted to go ahead with chemotherapy because it only works in 30% of cases and then for a short time. Again talk about, just go home to die .....

I too have looked at treatment abroad and sent my first CT scan to Heidelberg hospital and they responded within a week, 6 rounds of Folfirinox, re-scan and then review for surgery. They do not diagnose Stage 4 PC as palliative only and have a much more pro-active approach to both trying to save patients or at least extend their lives. Consequently, many more of their patients either survive or live for longer. I am planning still to follow up this option. It will probably have to be self-funded, but due to advice from the lovely people here, I checked my Life Assurance and it pays out for terminal illness, which they promptly have done. So I still have options and more importantly HOPE.

My own treatment has not been as smooth as your daughters, and I will post separately about this. In the meantime, keep your HOPE alive and keep battling on.

toodotty

AndAde
Posts: 29
Joined: Thu May 18, 2017 7:51 pm

Re: This cruel disease

Postby AndAde » Thu Jun 14, 2018 5:33 pm

Never give up hope.

My husband was diagnosed with metastatic cancer in his lungs December 2016. Its been a rough ride. Last summer his treatment was nearly withdrawn as he was so desperately ill. We persevered and this week we were given the results of his latest scan.... no sign of any tumours!!!!

We are overwhelmed with gratitude and sheer relief to be given this extra time together xx