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LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Mon Jan 30, 2017 1:03 pm

Thanks again for all your kind words and advice. Dandygal - I won't intrude on your thread at this worrying time, but have read, learnt lots and am thinking of you.

Marmalade - I also read your beautiful thread last week and cried buckets for your family and mine. I needed to understand what may happen and you have helped me and so many other people so, so much by writing that down - I can't thank you enough

We worked out that Dad's back pain came on consistently around an hour after taking his blood thinner tablet, and when he switched to the Fragmin, it was the same pain, but worse. He told me yesterday that on Thursday night as he was pacing the house, trying to find a comfortable position, he was very scared and depressed at what might come - wondering if this pain would be his life for what remained of it.

The GP prescribed Oramorph on Friday, but that didn't help and he had another bad night, but on Saturday he moved the Fragmin injection forward 2 hours, so that the worst of the backache happened before bed, when it was easier to manage - he had the best night's sleep in weeks. His leg is much improved - still swollen but not nearly so dramatic as last week. I found out that the blood thinning tablets he was on are contra-indicated with cancer - not sure why - but am annoyed he wasn't taken off them immediately.

So we are now hoping that:

1 - The Fragmin is working and he may be able to resume more exercise and even visit their house in Spain
2 - The back pain is from the Fragmin and not the cancer - if this is the case, clearing the DVT's could give him some pain free quality time to live life to the full.

He still has appetite issues and gets full very quickly, but getting a good night's sleep is making all the difference and I came away yesterday feeling more positive. Biopsy on Friday - hoping for a miracle xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: New Diagnosis Limbo

Postby Elaine123 » Mon Jan 30, 2017 9:25 pm

Lanasmum I am glad your Dad has got his Fragmin injections working to suit him....everything just seems to be trial and error. Good luck for Friday and hoping and praying your Dad can get over to Spain to give him a break and some feeling of normal again.
Elaine
X

LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Wed Feb 01, 2017 8:17 pm

Just wanted to say a big thank you to whoever it was that mum spoke to on the support line - the advice we got has sorted Dad's pain and he is better than he has been in a while xx

Marmalade

Re: New Diagnosis Limbo

Postby Marmalade » Wed Feb 01, 2017 8:43 pm

Brilliant, super news about Dad's comfort! It's always good when you are travelling upwards on the roller coaster! So glad the nurses were able to help, aren't they wonderful?

Don't ditch the Oramorph, it may come in handy. You learn to hoard stuff just in case, especially Creon as hospitals take it off them thinking it is a drug, which it is not, and that it can only be given on a drugs round, which is nonsense. It has to be hidden in their wash bags and visitors handbags! You have already discovered that there is no "one size fits all" and the drugs are mostly alchemy as our GP said once. Everyone is different and it can take a few days to settle in to some new cocktail. Contra indications don't always mean drugs should not be given, it depends if the risk is worth taking.

I'm glad you found the thread helpful, a bit long I know but fear is the enemy and removing fear can lead to a much calmer ending when it comes. To completely disregard a very important option (no intervention) is no more right than not mentioning chemo. Talking about end of life care will not make someone go downhill anymore than talking about chemo will effect a cure. I would urge anyone with a PC diagnosis to claim their benefits as soon as they have the diagnosis and to get themselves on a caring course and the patient on a coping course. Knowing something about how to deal with pain, fatigue, nausea etc makes it all a bit less frightening if and when it occurs, and can be done alongside chemo and other treatments. Things learned are never wasted.

I do hope Dad makes it to Spain although I guess it will be by car and ferry. It will cheer you all up.

Much love,

M xx

LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Thu Feb 02, 2017 1:30 pm

We had a hiccup this morning as the Macmillan nurse phoned to introduce herself, but said she was from the hospice - Dad immediately thought he was moving in there next week - very upsetting. His biopsy is tomorrow and we get the results / plan on Wed afternoon - I am going to that appointment with him and the nurse is coming round the next morning, so hopefully we will finally have a better idea of what we are dealing with and Marmalade I shall ask her about the courses - thanks for the tip.

I'm preparing for the worst (ie chemo not going to help) and hoping for the best. It is only 15 days since we were told this thing was advanced and inoperable - feels like a lifetime ...

Off to research chemo options now in the hope that that research will be useful and I can ask good questions. Also hoping that immunotherapy trial starting allegedly in January may be an option ...

Marmalade

Re: New Diagnosis Limbo

Postby Marmalade » Thu Feb 02, 2017 7:42 pm

Oh I am so sorry that Dad was upset about the word hospice. In a way I think its a good idea to lay as many of the fears aside as you can at the outset so I am glad the nurse is coming round. I hope you have a good one as they are very variable. The can be very good but not PC specialists although you can call the nurses on here at any time.

Your attitude is great, prepare for things which may happen but hope for a better than expected outcome

Much love xx
Last edited by Marmalade on Sat Feb 04, 2017 9:02 pm, edited 1 time in total.

LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Sat Feb 04, 2017 1:40 pm

Thanks for the comments but the attitude is only a veneer and I am struggling today - very tearful after hearing that Dad is now having stomach pain. He actually asked me last night for the first time how chemo works and other things - that I could answer mostly because I've been reading the fact sheets on this site and other links . I was upbeat, talking about improving survival rates compared to when his friend had this 10 years ago and trying to be positive but I feel like a fraud for peddling hope where I fear there may be none - am sick with anxiety at what may be said at the appointment on Wed - until we get those results, there is still hope. The tears aren't for me but for what he and mum are going through - I'm not used to being unable to do something to fix a situation and the waiting and hoping is just agonising

I just needed to write that down - no need to comment xx I will go back to cuddling cats - they know something is wrong - the younger one brought me a present of a cute little mouse last night

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: New Diagnosis Limbo

Postby Justamo » Sat Feb 04, 2017 2:48 pm

Hello Lanasmum. I know exactly what you mean about a veneer, just wish I had thought of that word ! It's my habit, when asked how I am, to say, "Oh, I'm fine, thanks". A friend challenged that the other day. "Don't be silly, you can't be fine. Why don't you just say how you feel ?".

And you know, you can't. Because saying that you feel like poo would be bowing to defeat and giving in. The centre of our world is the PC sufferer, and we are just trotting along beside, keeping up, and trying to be useful. You never actually examine how you are feeling yourself. Peter has been poorly since last August, and it's taken me that long to do something about my own pain because, to all intents and purposes, "I'm fine, thanks". It's the way you and I are made. And we won't change. We are fixers by nature. But we can't fix this. I used to think that the more effort I put into looking after Peter then the quicker he would get 'better'. Of course he won't and if we had continued to do things my way we would have one sick person and one exhausted person. I'm trying to chill out a bit but quite often revert to type. Because I'm human.

If you can be bothered to look at the beginning of my thread you will see that Boris, my cat, has frequently gone to bed with soggy fur because I cry all over him at night. He doesn't seem to mind. And yesterday he bought me a beautiful leaf.

The one place in the world where you needn't say, "Fine, thanks" is this forum. If you feel like poo, then say so.

Love, Mo

LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Wed Feb 08, 2017 2:01 pm

Mo - cats are just the best and their fur is designed to soak up tears. I had a Boris once - a ten year old Siamese I got from rescue. I have two other Siamese now that take turns in getting soggy fur.

I'm with my parents today as they had an appointment pulled forward from Feb 22nd to later today - I know his "case" is being discussed at a MDT meeting today, following the biopsy on Friday. I thought I was going to meet the oncologist but having just gone through the paperwork, it appears we are seeing the consultant again - now worrying that this means chemo is not an option, after spending all week telling myself we will be able to fight for more time. We will know either way in 3 hours - they are going so, so slowly...

LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Wed Feb 08, 2017 2:03 pm

and he is watching daytime TV - every other advert is for funeral insurance - could put a foot through the TV right now

LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Wed Feb 08, 2017 6:49 pm

Very surprising but better news. The biopsy suggests it is not pancreatic cancer but non Hodgkin lymphoma - a blood cancer which can be treated. Now got to wait for referral to haematology for them to confirm. Cautiously optimistic and googling like mad. We have another wait now as that team meet on Fridays and we may be too late to get in this Friday. The GI consultant is surprised but reasonably optimistic. Has anyone ever heard of this ? Xx

Marmalade

Re: New Diagnosis Limbo

Postby Marmalade » Wed Feb 08, 2017 6:55 pm

Fantastic news! My doctor daughter says that if you have to get cancer its the one you want because it is treatable in many cases. Her father in law had it when Louis was dying and had 6 months of treatment and is now doing incredibly well. The only issues he had were with the chemo, fatigue, a horrible taste in his mouth that made food disgusting and not taking care with staying away from people with colds and coughs etc so he got two infections (not good news)

Cancer of any type is never good but I am delighted that there are good treatments for hubby and wish you both well with them. Wonderful news

M xxx

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: New Diagnosis Limbo

Postby PCUK Nurse Jeni » Thu Feb 09, 2017 2:43 pm

Hello Lanasmum,

This certainly is a better result than a pancreatic adenocarcinoma.

Non-Hodgkins Lymphoma is very treatable, and has some very good results , although like any cancer, not without its challenges. But it certainly is much more positive.

Lymphoma is also much more responsive to treatments such as chemotherapy and antibody therapy.

You may wish to consultant the Lymphoma Association for some support - a charity also who offer support and also have a helpline. You can find their details here:

https://www.lymphomas.org.uk/

Wishing your dad all the best,

Jeni.


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

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: New Diagnosis Limbo

Postby Elaine123 » Thu Feb 09, 2017 4:57 pm

I am delighted for your Dad and the family what brilliant news. I wish him all the best for whatever treatment is decided on. Stay strong and positive.
Elaine
Xx

LanasMum
Posts: 18
Joined: Fri Jan 20, 2017 4:19 pm

Re: New Diagnosis Limbo

Postby LanasMum » Fri Feb 10, 2017 4:37 pm

Thank you for the replies Marmalade, Jeni and Elaine. My dad joked that this is possibly the only situation where a diagnosis of cancer is cause for elation ! It was a really strange moment sitting in the consultant's office, expecting to be told chemo was not an option - I don't think we quite believed it and the reaction was stunned silence.

We don't have a confirmed diagnosis yet and were facing a wait for referral to Haematology but I took inspiration from something Dandygal mentioned about writing letters - cue an emailed letter to his case worker for PC, outlining the timetable and 3 month wait that has led to this potential diagnosis, highlighting the strain of waiting, increasing pain and worry, and the case got reviewed today, with an appointment on Wednesday.

So, thank you so much each and every one of you for the information, support and stories in this forum. I will come back to see how some of you are doing but hope not to return on my Dad's behalf. Little did I know when I "learnt" to run and did a Race for Life last July that it would become a subject so close to my heart. You and your loved ones will all be in my thoughts when I graduate onto doing the 10k race for life this year.

xxxx