Sharing our experience so far

[Floofmom]

I want to share my experience so far with my Mum's diagnosis, simply because I found this forum so very helpful, especially reading other people's experiences.

My mum was diagnosed at the beginning of December 2021.  When we saw her in July she had lost a lot of weight, had the light coloured poo, blood sugar rocketing and out of control, lost her appetite etc.  Unfortunately it took several phonecalls over several weeks to the GP before they said they would refer her for scans.  Three weeks later when no scan appointment came through my parents phoned the hospital only to discover that the GP had never sent the referral letter.  They chased it up and she finally got her scan in the middle of November along with some blood tests.  We live in Scotland and my parents are in the South of England so we don't see each other that frequently.  Anyway, she was diagnosed with pancreatic enzyme deficiency and was told she would need enzyme tablets.  We visited in December three weeks after her scan and she was delighted as she said she could cope with the enzymes, she had been terrified it was going to be a pancreatic cancer diagnosis but clearly not as there was no news from the scan so it must be ok.....clearly not!  She got a phonecall three weeks after the scan inviting her in to discuss her results.  That's when the bombshell dropped.  Stage 4, in the head of the pancreas with metastases in the lungs. We had no experience with pancreatic cancer and the shock threw us.  We were back up in Scotland by now and I was trying to console my Dad and my sister over the phone, my Mum was seemingly OK with it.

We took my kids down at New Year so that they could spend some time with my mum and I could offer support to my Dad.  The hospital had said that she was not a suitable candidate for chemo (she is 83) and that it would not add much onto her life expectancy for all the side effects it would give her.  Her way of coping was sorting out all her clothes and stuff.  When I asked her if she was scared she said "surprisingly not". She was very thin but was managing small meals thanks to the creon tablets.  The only thing I noticed that had changed in the 3 weeks since we had been down in early December was that she was taking a lot of naps.

In January she had a visit from Palliative care and that was helpful.  We had already had discussions about DNR and where she would want to be at the end etc mainly after I had been on this forum and realised it would be good to have those discussions sooner rather than later.  Also I would recommend watching the webinar through this website about Palliative Care - very useful.

A few days after the palliative care visit my mum was extremely itchy and her wee had turned "the colour of ginger wine".  Alarm bells rang for me.  I had seen this on the forum and it sounded to me like she was getting jaundice and needed a stent.  I told her to phone palliative care and report that.  They just told her to get a urine test to check for infection.  I phoned the helpline on here and spoke to a nurse.  They said that she probably had jaundice, it would need a stent fitting and explained the procedure to me and told me it would probably take about 2 weeks to happen.  I told her she needed to phone her contact at the hospital so she did and got an appointment for a few weeks later.  We visited again in February before the appointment and took her some Magicool spray which I bought from Amazon following a recommendation from someone on this forum who said it was the only thing that helped with the incessant itching.  She was tired and thin, but enjoying time out when she could.  Still active around the house.  It felt to me like things had plateaued and almost stopped worrying and it has been like this for a while, but she would get days when she was very sick.

She also tells me that she sometimes gets a lot of pain but the morphine doesn't help.  She hasn't seen palliative since January.  They said they would see her in 3 weeks, it has been 8.  I know from the forums that she could have more morphine but nobody has advised her and she won't do it without advice so is struggling with that.

So, news on the stent.  She finally got seen by the hospital and they did blood tests, cue waiting again, then got called in for scan, more waiting, then decided 6 weeks after the helpline told me, that guess what she needs a stent!  They took her in last week for the procedure (she was terrified by the way and wanted a general anaesthetic but was told they couldn't do that) but the blood tests showed her IRN value was too high, meaning that her blood wouldn't clot so it would be too dangerous to attempt.  They would be in touch.  A week went past so she phoned and they said they would take her in, treat her blood (with vitamin K I think) then attempt the procedure the next day.  She went in on Monday for that, on Tuesday they attempted to put in a stent using ECRP, but were unsuccessful.  They kept her in,  On Wednesday they said they may try the other way, going in through the stomach wall, through the liver and would do that on Friday.  On Friday she was told that the only person who does that visits the hospital only a Tuesday so she would have to wait.  Meanwhile they won't let her out because of her jaundice.  They have known about the jaundice for 8 weeks and done nothing!

At this point I am thinking that we have gone past the three month since diagnosis and am concerned that the jaundice has been left too long.  The reason they couldn't do the stent with ECRP was that "the liver was too clogged up".  That doesn't sound good to me. We have already got plans to go down to see them next week.  I don't know if I will get to see her if she is in the hospital as it is only one visitor allowed and at the moment they are not letting people in due to an outbreak of sickness on the ward but I will go anyway to support my Dad.  We are trying to visit each month, but it's an 11 hour drive each way.

I guess I feel frustrated that things have moved so slowly with the diagnosis, the scans, the stent, the palliative care team.....I just want to tell you that the helpline on here is great and the information on these forums.  They tell you so much, stuff that you don't get from the professionals, stuff that you want to know (if you are like me).  It's been a big learning curve.  My Dad really struggled with it, but has thrown his energy into sorting out finances, my Mum sorting out clothes and me learning as much as I can from other people's experiences so that I can support them.

The only other recommendation I have so far is that my Mum loves a bath but due to her weight loss is very uncomfortable, so I bought her a lovely cushioned bath mat which means she can still enjoy a bath and not be so uncomfortable.

[Sandyvon]

I’m very sorry to hear about your Mom’s experience with her diagnosis. It must be overwhelming for your family as she has experienced delays at each stage. It sounds as if your parents are taking control over what they can and putting their energy into sorting out their lives. My very best wishes. 

[Floofmom]

A little update.  The doctor allowed her home for the weekend if she promised to drink at least 2 large jugs of water a day as despite her age she doesn't seem "elderly and frail" but she has to report back at 9am on Monday morning. The only thing is that today she had a call to say that the ward is now completely closed due to a norovirus outbreak so she has to take a sample up tonight but if positive it will be another week before the procedure.  The itching is driving her mad!

[Floofmom]

Thank you sandvvon for your kind wishes.

[Floofmom]

Good news.  Yesterday Mum went to the hospital and spent the day there, but got sent home in the evening due to lack of beds but was told to report in again at 8:30am.  She had the procedure, in via the stomach, and the doctor said it was a success.  She will stay in for 2 nights and be monitored.  Fingers crossed it helps with the itchiness.

[Thesea]

Hi Floofmom.  A relative has recently been diagnosed with Pancreatic Cancer so I lurk here, trying to educate myself.  

Personally I'm seething about all the delays and confusion you mention but clearly you and your family deal with these in the best possible way by being persistent and not letting frustration dominate.  And your mum's attitude and apparent strength of character / spirit are wonderful.

I think I'm getting the picture that, delays and ward closures etc. aside, the course of the disease itself is confusing and somewhat unpredictable and that therefore treatment plans are often interrupted or need to be reconsidered at short notice.

Just wishing you all the very best, especially your amazing mum.  Let's hope the stent does help reduce itchiness.     

[Floofmom]

Thanks Thesea.  Yes, it's frustrating but we do understand that the hospital's are busy and doing their best.  I found this forum really helpful for alerting me to symptoms and knowing what to expect as this horrible disease progresses.  My mum is quite a positive person and takes things how she finds them.  I always try to stay positive too, I don't want to waste the time we have left feeling sad.  I am heading down south again this weekend.  Have already stocked up on sweeties for my overnight drive .  Hopefully she will be out of hospital by the weekend.  I do hope that your relative is coping ok with their diagnosis and that they get all the help that they need.  It's always a good idea to do something nice if they are having a good day.  My mum particularly wanted to go out to her favourite restaurant so we did that last time we were down ( extra Creon!!!).  Best of luck to you.

[Floofmom]

My mum got out of hospital yesterday.  We arrived today and I was shocked at how yellow she was looking.  Apparently this is an improvement.  She seems to be doing well, with no infection and said that the hospital staff were excellent.  She discussed the morphine with the nurse at the hospital and has been told she can take 10ml at 4 hourly intervals.  This afternoon she seemed really down and unwell though and has gone to bed.  She's also been quite sick and asked my Dad if he thinks she should go into the hospice.  I think perhaps the hospital experience along with the jaundice is taking it's toll and perhaps with the stent in place she may start to feel a bit better in a few more days.

[Floofmom]

Jaundice looking a lot better already.  Itching still there but it's early days yet (less than s week).  She's been quite sick but perhaps overdid it when I cooked a roast dinner for mother's day.  This afternoon she was saying she was feeling much better.

[Lornacath]

Dear Floofmom, my mum is also suffering with P/C sage 4 with Mets in her liver. There are lots of similar experiences in relation to delays and getting to treatments. It seems they tell you you have Pancreatic Cancer but frequently they are not able to tell you what kind and finding this out is in our case took 6 and half months. She had a stent fitted back in July 21 after 3/4 months of feeling unwell, losing weight, light floating stools and dark urine. The stent cleared up her jaundice within a few days and initially her appetite picked up and she maintained her weight until recently. She was turned down for the Whipple due to heart problems but decided she would like to try chemo. This was much harder than we could believe, for them to get a biopsy from endoscopic procedures took to the middle of February. Chemo should have started by now but she ended up having life saving surgery for a prolapse and now has a Stoma to cope with as well as P/C, it has been an absolute nightmare. They think all the pain killers she has to take caused the constipation and in turn caused the prolapse. Emotionally I feel absolutely drained. I’m not sure if she will ever start chemo now, putting her through anything else just seems too cruel.

Today she spent some time planning her funeral which was heart wrenching.

If I could give anybody any advice it would be to make sure on the good days you spend time together. My sister and I have taken mum out, we bought forward mum and dads 60th wedding anniversary and had a party for them. This was just before she got really poorly so will be forever grateful.

We have a hospice nurse visiting mum weekly now and she has been wonderful, she gets mums pain meds sorted and has lots of advice on all aspects of mums care.

I wish you and your mum all the best, I hope her stent makes her feel much better, it really did my mum. Thinking of you x

[Floofmom]

Hi Lornacath.  I am so sorry to hear about your mum.  It sounds like she has been through an awful lot.  Good that she is being seen by the hospice team.  My mum's GP led palliative care have been practically non existent, but luckily the hospital team are stepping up and have offered a home visit.

It's hard talking about funeral plans.  Mum has arranged hers but only by discussing with Dad not myself or my sister but he told me that she has chosen photos and music.  I was very emotional when he told me that she has chosen "Send in the Clowns" as her last song.  She always loved that one.  I will be in bits when it is played.

So pleased that you managed to do the 60th wedding anniversary party.  Celebrate every day that you have. 

The good news (for now....we all know the PC rollercoaster) is that a week and a half after the stent, the jaundice is really going and yesterday she said she felt a lot better, more energy and less sick.  Still itching.  I am very grateful that she didn't get an infection with the stent as that was at the back of my mind.

We travelled back to Scotland after our visit and halfway home my Dad was messaging me to say my Mum had been very sick and our neighbour was messaging to say my elderly cat was in her garden not at all well.  It was stressful.  Poor cat was put to sleep the following day.  She was my pal so it was a very emotional week all round.  Have been feeling exhausted with the emotional side of things plus the 11 hour drive each way so this weekend planning a bit of self-care.

Are you managing to build in some time for yourself?  You can't pour from an empty cup.

Hope your mum is doing ok.  I will keep you in my thoughts.

[Floofmom]

My mum has now been prescribed a tablet to take at bedtime.  Not sure what it's called, but she says she has to take a quarter of a tablet and it basically knocks her out for the night (no itching).  The only thing is she is waking up in quite a lot of pain.  She is delighted to be able to sleep though.

[Lornacath]

Hi, hope your ok, was sorry to hear about your cat, as if life at the moment isn’t sad enough.

I wonder if your mum is being given Longtec. My mum takes this 12 hourly and it’s a slow release painkiller and does make her very drowsy too. 
I hope your mums stent is working well, and that she is able to eat a little better. 
Wishing you all the best xx

[Floofmom]

Thanks Lornacath.  How's your mum doing?  Have been thinking of you.  My mum had a visit from palliative care nurse this week, apparently they are very busy.  Luckily she seems to be plateaued again at the moment although she is getting a lot of chest pain.  The medication she is on before bed is called levomeptonazin.  Hoping everything stable with you.

[Lornacath]

Hi, I’m heartbroken, my mum passed away on 11th, this disease is so cruel. The last few weeks have been a nightmare, my poor dad is absolutely devastated, I’m staying with him at the moment trying to support him best I can. 
I am so aware you are in a very similar situation, I look in on this forum at night when I can not sleep regularly, it seems to help being able to communicate with others people who are dealing with this disease.

Our fight is now over, and my mum is now at peace and I’m praying that her belief in something better on the other side is true and she will be reunited with my sister.

I hope your mum is free of pain and able to enjoy her time with you all, making memories and remembering happier times was always a boost for my mum. Sending you lots of love xx

[Arthur0601]

Lornacath, I am so sorry for your loss. Thinking of you and your family. I am glad you can be there with your dad. 

[Lornacath]

Thank you x

[Floofmom]

Oh Lornacath, I am so sorry to hear your news.  I hope that your Mum had a peaceful and pain free passing.  I am thinking of you as you come to terms with what has happened and how it will affect you and your Dad.  I can't think of anything to say that can help, just know that we are all thinking of you right now x

[Lornacath]

Thank you, love and best wishes to you and your mum xx

[Floofmom]

I haven't updated for a while as we seem to have plateaued for a while, however I think perhaps it has lulled me into a false sense of security as my Dad informs me that my mum is in more pain than she is letting on to me about.  I am due to go down again this weekend, but today she was waiting for a phonecall from a nurse to discuss severe constipation.  I believe this is a side effect of morphine.  Any suggestions to alleviate?

[LisaC]

Laxatives will help, but if she like prunes, prune juice that will also give a helping hand. 

[Floofmom]

Thanks Lisa.  She had the district nurse out who put a catheter in and gave very strong laxatives.  Almost sent to hospital.  She does like prunes so will probably have some of those in the next few days.

[Lornacath]

Hi, my mum used to have to take Cosmocol everyday to help with constipation. 
i hope you are able to have a lovely visit with your mum, thinking of you both xxx

[Floofmom]

Thanks Lornacath.  How are you and your Dad?  I have been thinking of you xx

[Lornacath]

Hi, it’s been a very sad time for our family, my poor dad is heartbroken, he is nearly Eighty and this is his first time living alone. 
I hope your time with your mum went well, with this disease you have to make to most of every minute you are able to spend together. Sending you, your mum and family lots of love x