Jane's story

Hi All,

I have been reading posts on this forum for a couple of weeks, and now feel ready to share my story.

I am 63 years old, recently retired, married with 3 grown up children and 3 grandchildren. Up until Christmas, I was fit and healthy, I enjoy running, especially park runs, swimming and spinning. At Christmas I became ill with what I thought was a stomach ulcer, but after a long process of elimination, unfortunately was diagnosed, by CT scan, with pancreatic cancer. After a biopsy, that diagnosis was confirmed as stage 3 locally advanced PC, which is not operable as it is invading my small bowel and blood vessels, although it hasn't spread to other organs. I had an appointment to see an oncologist on Wednesday to discuss my options. He has arranged for me to have a 6 month course of Folfirinox, administered by a PICC line, starting in early June. Before my illness, I had booked to go on holiday to Spain for a week with my youngest daughter, and my McMillan nurse and doctor have encouraged me to go, saying it will set me up well for the treatment to come. My husband is coming with us now, as we all feel we need to be together, and future holidays are in doubt. We are going next Wednesday for a week.

As you all know, the diagnosis is devastating, but I am determined to keep positive and fight this as best I can. I am going to try to enjoy every day and not to think too far ahead (easier said than done!)

My family and friends are incredible supportive but I feel it may help to be in contact with other people currently going through the same thing as me. Ultimately we are hoping my tumour, which is in the tail of my pancreas, will shrink enough for surgery eventually, but I am realistic that this may not be possible. In the meantime, I am trying not to think further ahead than the 6 months of chemo.

Hi Jane...you'll find there are some people on here living with the disease, but many if us are partners / spouses of sufferers or those who have died.

My husband had folfirinox and did well on it, had very few side effects and life went on for us. His tumour was in the head of the pancreas and contained therein on diagnosis, although it was pushing up against a major blood vessel, so surgery wasn't an option. The chemo did shrink his tumour enough for surgery, but the cancer soon returned and he died 2 years from diagnosis.

I believe his positive outlook served him well and went a long way towards him getting as far as he did.

Good luck with the treatment, keep us posted. The nurses area great source if info, so anything medical, give them a ring.

Vx

Hi Jane

Welcome to the forum but I'm very sorry that you have reason to be here. As you say, it's a devastating diagnosis, but your age (relatively youthful for a PC diagnosis) and your great fitness level pre-diagnosis are definitely on your side.

Folfirinox works wonders for some, it certainly did for my hubby - see the first post of my thread here:

Thoughts from the PC frontline

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1798

- and I really hope it works its magic on you.

Your attitude will also help...not thinking too far ahead, and trying to enjoy every day, have helped my hubby and I enormously. I now practise, and thoroughly recommend, mindful meditation, though hubby tried but gave up. If you find yourself getting mentally low (and who wouldn't under the circumstances) this can also be a biochemical effect of PC, so don't be shy about discussing it with your GP who might suggest antidepressants. They've helped a lot of people on this forum.

I hope you have a super holiday with your husband and daughter. One plus of dealing with a life-threatening illness is that it brings the beauty of life into very sharp focus, so I'm sure it will be very special.

W&M xx

Hello Jane

Welcome. I'm only truly sorry you find yourself here.

I must echo Veema and W&M's comments. I've actually just posted on Helen's thread about Folfirinox and holidays etc. Absolutely agree you must go on holiday! Anything you can do to help get yourself as fit as possible for chemo. Just make sure you've got an E111 just in case but as you booked the holiday before diagnosis, as long as your doctors say you are fit to travel, your insurance will cover you should you need any medical assistance whilst away.

Have a lovely time, remember none of us are ever promised a tomorrow so you are most definitely right not try not to think too far in advance.

Let us know how your holiday was and bring back some sunshine please!

All the very best

PW xx

Thank you so much for your encouraging replies to my post. I find it incredibly helpful to read other people's stories, and it encourages me to remain positive and hopeful. Today I have decided to colour my hair ready for my holiday, as my oncologist told me I will definitely lose it once I start on Folfirinox, so I will make the best of it while I still have it! And, an upside of the dreaded PC! I have lost so much weight I've had to buy a new summer wardrobe in size 8, the first time I've been that size since I was about 16 - I've always hovered around 12 - 14! Busy packing for my holiday, will face chemo when I return, hopefully relaxed and with a nice tan!

Thank you again for your support

Fabulous attitude Jane!

By the way, it's unlikely you will lose all of your hair on folfirinox, it should only thin a bit.

Have a great holiday! xx

My husband didn't lose any hair on folfirinox...he only had a bit to start with, but he managed to keep it!

Enjoy your hols

Vx

Hi Jane just on to wish you a fantastic holiday. Take care

Elaine

X

Hello Jane,

Welcome and thank you for taking the brave step of posting on the forum. I appreciate how difficult this can be sometimes.

I wanted to take the time to introduce our service. This is a free service that is available from 10am - 4pm, Monday - Friday (apart from Public holidays). It is run by a team of specialist nurses including myself. We all have experience in varying aspects of pancreatic cancer. There is no limit to the amount of times you can contact us, and we have no time limit to our calls, so are happy to spend time in discussions. We have different experience in looking after patients suffering from pancreatic cancer, and of course, their families and loved ones. Feel free to contact us via phone (freecall 0808 801 0707) or email (support@pancreaticcancer.org.uk)- whichever is more convenient to you.

Do get in contact if there is any issue or query you wish to discuss.

Kindest regards

Chris

Pancreatic cancer nurse specialist

Support service

Pancreatic Cancer UK

Hi Jane,

A positive attitude like yours it always helpful in these difficult times. I wish you all the best in the recovery and may you have the best holidays.

Hi All

Thank you for your messages. I had a nice holiday, enjoyed the sunshine and being with my family, but unfortunately half way through the week I had terrible tummy pain and couldn't eat anything. I arranged to get creon on my return and went to see my GP. She gave me a morphine patch and liquid morphine for the pain, but before I could start with it, I started vomiting and my urine was very dark. We phoned 111 who sent an ambulance. The paramedics did lots of tests and gave me an anti sickness injection. We were planning to go to a family wedding up North, and they said I could still go if I kept drinking water to get rehydrated. Friday was a very bad day, I was constantly vomiting then after a night's sleep I felt better. We came to the wedding and I stayed for the ceremony and speeches then came back to our hotel as I feel very nauseous, though I've stopped being sick. I can't eat anything but am sipping water. We return home tomorrow then I won't venture far from home again! I feel terrible and don't know what to do for the best. Any advice will be appreciated! I have read on here what a rollercoaster PC is but didn't realise it happens so quickly!

Obviously no medical experience, just experience of our own circumstances, but my husbands urine went very dark when he became jaundiced...but just re-read your initial post and see your tumour is in the tail of the pancreas, so unlikely to be blocking the bile duct...? Maybe it is just because you've got really dehydrated. It's a shame it's bank holiday or you could have given the nurses a ring.

If it continues, get yourself to hospital for a check up, don't wait for the GP to open on Tuesday. we got an emergency number to ring once chemo started, but I don't suppose you'll have that yet will you?

Hoping you feel better soon

Vx

Hi Jane,

Sorry you are feeling so awful. That's the problem with this disease, the roller coaster of being up one moment and down the next. I hope the nausea is a little better today. We found with my husband that it was an on and off thing and that it took some time to find a drug combo which worked for him. His tumour as in the tail too. We did find one in the end but it's pretty miserable while testing things out. Your GP is your port of call or 111 out of hours, don't wait until the holiday is over. You can also phone your local hospice, they are the experts in dealing with symptoms and answering questions, don't be afraid to use them and the palliative care team, they can be tremendously supportive not just for you but for the whole family.

I send you love and hope things are a bit more settled today

Marmalade xx

Hi All

Thank you for your supportive replies. I came to my local A&E and they are admitting me tonight as the blood tests showed problems with my liver, and I may need a stent. Have stopped being sick and urine back to normal. They may scan me again too. It's my husband's birthday today, we've had better birthday celebrations!

Oh dear! Rotten luck. The positive thing is that you will get some help and a stent may make quite a difference to the way you are feeling. Don't worry about birthdays, Louis and I had celebrations for any old thing and as many birthday days as you want. His favourite saying (tongue in cheek) was "Only drinking champagne on birthdays is very middle class"

You can have a party when they get you sorted out.

Big hugs

M xx

Hi Jane hoping things are improving for you and that you are feeling a lot better. I know once Pete had the stent fitted he started to feel better quite quickly. Sending love.

Elaine

X

Hi All

Thought I would post an update. I spent 8 days in hospital and had a biliary and a duodenal stent fitted. Started to feel stronger and stopped being sick. Came out of hospital last Tuesday and started my first course of Folfirinox yesterday. I'm at home now with a pump which gets removed tomorrow. I've also started taking Creon with meals. I got told off by my lovely McMillan nurse for not taking enough pain relief, so now have a low dosage morphine patch and liquid morphine when required. The pain isn't sharp or severe, more low level discomfort and queasiness. Loss of appetite is a big problem, but early days. I'm grateful that I'm now receiving treatment to attack the tumour at last, rather than just symptom management. As always, I'm being treated like a queen by my fantastic family!

That's a very positive post Jane. Really good to hear from you and I'm sure the treatment you are getting from your family is nothing less than you deserve. My hubby was always told to stay on top of the pain rather than to wait until it was bad for pain relief. Easier to control that way.

Fingers crossed your appetite soon returns. My hubby's did after a couple of cycles of folfirinox.

Big hugs

PW

Hi Jane

Just seen your post over on Stepuha's thread. How exciting! I think it's brilliant that the wedding has been brought forward. The slight delay to cycle 5 should not make any difference and I think it's absolutely the right thing to do so that you can enjoy your daughters special day and your very proud role being Mother of the Bride!

I don't know what meds you are on but my hubby took dexamethasone (steroid) and metoclopramide - both of which boosted his appetite and enabled him to eat because like you, he struggled. Just a thought.

I wish the bride and groom all the health and happiness in their future lives together and may their wedding day be the one that dreams are made of.

Let us know how it goes!

All the very best

PW xx

I thought I had posted exactly the same thing yesterday but it did not post (or was removed). I absolutely recommend you walk to your dr and ask for steroids and anything else they can think of to make the day lovey. It is not a long term solution but it will work... have a lovely lovely day. x

Hi All

Well on Saturday my lovely daughter Lizzie got married in a 'festival' wedding at Evenley Gardens near Buckingham. A marvellous day full of love and laughter, and I stayed the course, dancing to the Motown band till nearly midnight. The wedding was originally planned for July 2018 but they brought it forward because of my condition - stage 3 inoperable advanced pancreatic cancer, diagnosed in March this year.

My oncologist agreed to delay my 5th round of Folfirinox so I could be as well as possible on the day. I was due to start it today but was unable to due to high temperature and dodgy blood test. I have come home with a course of antibiotics for a week, but feel terrible and am in bed. I've been lucky enough to control any pain with a morphine patch, but now I have intermittent stomach and back pain, I'm also taking liquid morphine and paracetamol. Just wondered if anyone has had a similar experience with pain returning? Any advice will be very welcome.

What a wonderful picture! You both look fabulous. So glad you had a wonderful day and I do hope you feel better soon xx

Hello Jane,

What a beautiful picture! Thank you so much for sharing - I believe the first to share a picture on the forums! Well done on mastering the technology!

It was also lovely to speak with you this am Jane.

Hopefully, some of the measures we talked about will improve things, and we will await to hear from you next week to see how things are going.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

Lovely picture (you'll have to give us a tutorial on how yo do that!) And it sounds like you had a super day...but sorry you're feeling rough now. I do hope you feel better soon.

Vx

Hi Jane, it really is a lovely picture, and what a fabulous day it sounded. Sorry to hear you are not feeling well, but I am sure you had some fabulous advice from our nurses, I hope with the antibiotics you will feel better soon. take care sandrax xx