Trying not to get my hopes up!

We had a call from Ted's nurse specialist today. Apparently at the Multi-Disciplinary Team meeting today, Ted's last scan was looked at and discussed. The consultant now wants to get another CT Scan for monitoring purposes and to ascertain whether "a different treatment" can be offered. Naturally, the nurse wouldn't go into too many details because it will all depend on what the scan shows. Apparently the scan will be done in the next couple of weeks, so there's obviously something time critical. Personally, I'm inclined to think that there's some new clinical trial that Ted may be eligible for and which might help. Of course, that may turn out to be wishful thinking but any positive news is so very welcome!

I'll let you all know how it turns out in due course.

Nicki x

Hi Nicki,

Sounds hopeful.

I have to ring up and make sure they've booked me for a scan, what a joy to hear that your nurse calls you

If you do get to hear of any possible trials, let me know - I will no doubt be having a meeting to discuss my CT scan results and if my gut feeling is correct they will need to look into something else to slow this sucker down.

I am still waiting to hear from the PDT contact on whether I would be a suitable candidate for treatment, it's been a week since my email to Pam on the website - but I have spoken to David also, he is really nice and trying to chase it up for me.

Take care,

Juliana x

Hi Nicki

yes that sounds hopeful, everything crossed for you both and await your news

Clair

Hi Nicki

this sounds good news i'm keeping everything crossed for you and Ted

My thoughts and love are with you both

Love Pauline

XXXXXXX

Thank you all for your comments. In the usual backwards fashion the hospital have sent us through the clinic appointment to discuss the scan before the scan appointment! That, in itself is ok. However, the appointment is with the pancreatic oncology surgeon which would have been involved if Ted's tumour was operable at the outset. This consultant is purely a surgeon and doesn't "do" medical oncology.

We can assume, therefore, that there is a possibility that Ted will be offered a whipple. Since a successful operation is the only "cure", I would view this as a good thing. Ted, however, has decided that he doesn't want an op! I know that not every whipple is successful and that recurrances do happen, but I'm having difficulty coming to terms with his decision. Over time, I could probably gently persuade him but he has a deep seated belief that an op would cause the cancer to spread. Given the links between mental attidude and physical health, I'm reluctant to embark on a campaign to make him agree to an op.

Help!!!!

Nicki

Hi Nicki,

I understand the fear Ted may feel towards the op.

4 years ago, when they found my 'cyst' I enquired what the op would be, thinking it would kind of 'keyhole' style surgery - a bit like what you get when they remove your gallbladder. When my surgeon laughed and said 'no....you will be cut open from one side of your stomach to the other, in an upside smile shape...' I was horrified! Then he went on to discuss the complications that 'may' arise post op.....and it just got worse. However, at the time the operation was not an option for me, as they didn't see it as potentially cancerous.

I've also read somewhere else about the fear of removing the tumor and 'aggrivating' the cancer and causing it to spread. I don't know what to make of this to be honest as I don't fully understand how cancer behaves and it also frightens me that the choice we took (well, had to take as we thought I was dying) in having the operation, could have in the long term shortened my chances.

I have read some terrible stories of post whipple complications and I have to say I am amazed at how my body has coped with it. If it weren't for having to take the enzymes every meal, a strange sensitivity in the skin around my scar and a weakness in my stomach muscles (which I am sure excercise would sort out - but being allergic to sport etc I find it easy to avoid you would never know I'd had such a major op. My scar is amazingly thin, flat and barely noticeable. My appetite is as good as it ever was, I have no difficulties with curry or spicy foods (which is great - as life without Tikka Masala would be a curse) and best of all, the small amount of Pancreas I have left produces enough insulin, so no diabetes.

Whether it was the right thing to do Cancer wise - I have no idea, however mine had spread to surrounding lymphs so I don't know whether it was inevitable it would spread anyway, I just don't know.

When I woke from my operation, my husband - he had a packet of crisps, and ate them in front of me....I will never forget wanting to eat straight away and was absolutely devastated when they denied me any food for 9 days. For me, that was the hardest part of my stay in hospital, the hunger pains were so bad that even morphine didn't quell them. I could have quite easily, and unremorsefully mugged the old lady in the bed next to me for her jam roly poly and custard

Anyway, whatever decision Ted makes, he can always change his mind, and change it back again. Maybe the meeting with the surgeon will give him the information he needs to truly decide, I know my surgeon offered to contact another female patient of his, for me to talk with prior to my op - so she could give me the low down on how the whole experience was for her.

Kind regards,

Juliana

Dear Nicki

What a dilema for you! I can fully understand you wanting Ted to have the whipple. It seems to offer the chance of a “cure”, as you say. I can also understand Ted’s reluctance. I don’t know if it’s just an old wives tale that once you operate on cancer it spreads. I think probably it goes back to the days when doctors knew someone had cancer but didn’t have the equipment they do now, like scans, to see that it had already spread to other areas anyway, so it seemed that once they operated it spread because of that. I’m sure the surgeon will put you right on that aspect anyway.

All I can do is tell you from experience that the whipple is a major, major op. Brian was cut from his chest down to his navel, but the scar has now healed with no problem. He was in intensive care for a week, then a high dependency unit for another two. He got pneumona, had to have a bowel resection a few months later and then had a pulmonary embolism. I think he was so lucky to recover from all that and, as you saw for yourself, he was almost back to normal. If only the cancer hadn’t spread to those 2 lymph nodes...maybe he would be “cured” by now.

It sounds like Juliana has made a very swift recovery from her op, but she is a lot younger than Brian and Ted. Most of what I read says it can take 12-18 months to fully recover from a whipple. You’ve said that Ted doesn’t like hospitals, so having the op would mean he would spend quite some time in there and all the outpatient work afterwards. I have also heard a lot of people suffer severe, unexplained stomach pains for a long time after the whipple. They come on suddenly and can be very frightening. I’m sure you, more than anyone, will do the necessary research before you make your decision, along with taking the surgeon’s advice, but please do look into these “whipple pains”.

If only we could see into the future sometimes. If you could see that Ted would get back to “normal” after the whipple, then maybe it would be worth going through all that. If not, then it’s just added pain, stress and risk. It’s probably a case of quality of life over quantity....

Brian lost 3 stone after his whipple and I lost a stone with worry. It really was the worst time of my life. Things are hard now, knowing his prognosis, but at least he does have a reasonably good quality of life and that makes it easier to fight on. But, if the op offers Ted the best chance of survival, it will be so hard for you to sit back and watch him refuse it.

I wish you all the very best in making your decision and let’s hope that the surgeon can offer you some hope.

Love

Ellie

xx

Thank you both for your balanced and thoughtful replies. At the end of the day, the decision is Ted's to make and I have told him that I'll be standing right beside him whatever happens. He knows my views and has said that he will listen to the surgeon before coming to a final decision. I think the deciding factor, however, will be when he hears about the length of hospitalisation because he really can't stand being in hospital and a 2-3 week stay would seem like an eternity to him. Anyway, for the moment at least, we are back to the waiting game - firstly for the scan, then the appointment with the surgeon. Whatever comes after that, I'll deal with at the time.

Nicki x