Don’t know where to start

[Christine49]

Hi Dianne, thank you for the reply.

The dietician has been in touch a few times but mum cannot follow her advice as has basically no appetite.

She was very sick on Thursday night after the Gem round of chemo and had pain so I encouraged her to have Sevredol as advised and unfortunately this seemed to make her even more sick so we called the chemo ward who wanted her into A&E but they were full so the paramedics treated her at home and got her more settled.

The district nurse and palliative nurse both called in on Friday morning, gave her injections to see her through Friday with two days off Cap chemo. They switched her slow release morphine over to Fentanyl patches instead. Started with 12mcg on Friday and we were to judge if it was enough by today with a view to doubling them if not, which it seems it wasn’t so old patch off today and two fresh ones on instead.

She was allowed two days worth of steroids as well after her Gem chemo after much begging.

Yesterday her pain was well controlled and she managed to nibble biscuits through the day but then today the pain has been bad all day and eventually she started being sick again tonight right after her chemo and paracetamol so the district nurses were needed again to give injections.

She was back on the chemo tablets today after two days off of them so we don’t know if it’s that or the fact she needed a larger dose of the fentanyl patches but all in all it’s been a dire day and she told me she didn’t want any more chemo as she cannot cope. She’s only been on it 10 days.

We tried getting her oncologist appointment brought forward with no luck so I don’t know what we do in the mean time. I am surprised she even managed to make it up to the cancer unit this week as she’s been so weak and tired.

Is this ‘normal’ so early on? I mean she wasn’t starting from a strong position at all but I know she won’t be able to carry on like this for any length of time and who could blame her. Xx

[Veema]

Hi Christine

Sorry that your mum is having a totally rotten time on chemo. I understand why she would want to stop having it if it's making her feel so awful...and there is a lot to be said for quality of life over quantity (read Marmalade's thread 'our journey without chemo'). I know this isn't what us as carers necessarily want, we want them to fight and to do whatever to prolong their life, but from what I can see, it's making you feel horrible too seeing her like this. I've just had a re-read of your thread and apart from the first post which mentions a biopsy for a spot on the liver, there's no mention of if your mum's cancer has spread or what stage she may be at? I am assuming since surgery hasn't been offered that it has spread to other areas of the body? Maybe it's time to reassess?

I think when you next see the oncologist tell them everything...it may be they could change her onto a different regime, or alter the dosage of the gemcap? I know everyone says folfirinox is tough to tolerate, but many people do tolerate it well, and there have been posts on here of people tolerating it better than the gemcap regime, which in theory isn't supposed to be as harsh.

I hope you can get something sorted for her, especially regarding the pain. Thankfully, that's something my husband never had, so it's hard to advise, but there are alternative pain medications. If there's one thing, she shouldn't be in pain.

Much love.

Vx

[PCUK Nurse Rachel C]

Dear Christine49,

I am so sorry to hear that Mum has had such a tough time since she has started her chemotherapy. It does sound like she has really struggled and I am sure it must have been really difficult to watch her go through this. It does sound, however, that you have had some good support from the district nurses and the chemo unit, which is good.

As Veema has mentioned, please be really honest with Mum's Oncologist when you next see them. I know that you also mentioned that Mum now feels that she does not want any further chemotherapy, which is understandable considering how unwell she has been, however, there may be ways around managing Mum's side effects and this should be discussed with Mum before she makes her final decision. As Veema has already mentioned, there may be a possibility of lowering the dose of the chemotherapy, either the gemcitabine and/or the capecitabine? They may also consider stopping the capecitabibe altogether, as some people do not tolerate capecitabine very well and Mum may be one of these people? From the fact that you have mentioned that Mums sickness was there for the full 10 days, I suspect that the capecitabine is the main culprit here...unfortunately? Another option, is that they may mention about starting a syringe driver with antisickness medication in it. This may be started BEFORE Mum has her chemotherapy and can sometime stay in place for 3-4 days and then can be taken down if all is well.....just another thought really!

I am hoping as Mum has been told to stop her capecitabine, that she sickness has started to improve? Also, I am hoping that Mums pain is also better controlled?

Please do not hesitate to call through to us and please do let us know Mum is getting on.

With kindest regards,

Rachel (Convery)

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707 (Monday-Friday: 10am-4pm)

[Veema]

How's she been over the past couple of days Christine? Better I hope.

Vx

[Christine49]

Thank you for your thoughtful replies.

We’ve had an awful few days. The levopromide injections they gave her to stop her being sick on Sunday night / Monday morning gave mum extremely low blood pressure on rising and we struggled to get her to the toilet when she needed a #2 as she felt very faint.

I ended up having to totally wash her underneath once we got her back to bed which I haven’t done yet and even though I managed fine I just never know if I’ll cope day-to-day with the physical stuff.

I went home and was half way through dinner when we got a panicked call from dad. Basically she felt the urge to get on the loo and he got her there quickly which apparently resulted in a huge vasovagal response and she passed out stone cold. Hubby called dad back and said dial 999 and we rushed up there.

Honestly when I saw her slumped on the loo seat I thought she had gone. The call handler advised getting her on the floor and on her side which dad just managed to do as she was still out and I couldn’t help as they were inside the bathroom. She continued going to the loo on the floor and eventually started coming round a little just as the paramedics arrived so was probably blacked out for about 15 minutes in all.

They were great and reassuring it was ‘just a faint’ and helped clean her up, get her back to bed and liased with the palliative care team for us. Me and hubby have been here since, terrified to leave them both. A commode has been provided and is already helping. Her blood pressure is better today after 24 hours off the levopromide but she’s very weak and weary. Ketones were up a little so she’s had a Dioralyte.

I am also wondering if she’s retaining urine a bit as she’s drunk a fair amount of fluid today and not much is coming out. We had an episode of that in hospital and it made her toxic on the morphine as it wasn’t flushing through. Snow has held some stuff up here today but help has still been getting through.

Thank you for the suggestion of a tailored down version of the chemo. Right now we are leaning towards no more chemo as Veema has mentioned. I guess it depends on what the oncologist says when we finally get to speak to her and how mum goes over the next few days.

We’re all exhausted. This is the toughest thing we’ve ever had to do. Xxx

[Sandra58]

So sorry for what you are going through. I was having a very rough time with chemo and once they reduced the strength of the two chemo drugs and changed my chemo schedule from 3 weeks on and 1 week off to 2 weeks on and 1 week off I was able to slowly build up some strength . I was ready to stop the chemo because I was so sick. This was last September and no one thought I would be doing so well today. My tumors have stabilized for now.

Blessings

Sandra

[Christine49]

Thank you Sandra for your reply.

That’s really interesting and I have relayed it to mum. She’s been off chemo totally since Sunday now but still confined to bed.

They have switched her meds over from slow release morphine to fentanyl patches as well and reduced her gabapentin due to side effects so she’s all over the shop currently.

Did you find you were utterly wiped out along with the sickness on the stronger chemo regime? She can’t even sit up in bed currently.

We apparently have an appointment with the oncologist tomorrow that I’ve just found out but mum won’t be well enough to attend that so we are hoping for a phone consult instead... if the oncologist makes it to the hospital due to the snow!

We are stuck with the eating side of things but I told mum what you have said and I am hoping it’s given her encouragement to try and get a bit more in.

Good news is she managed a BM on the commode without all the wobbling and feeling / fainting. She just felt really weak though. Xxx

[Sandra58]

Hi Christine,

Thinking of you and your mum. On the two consecutive Mondays that I have chemo, I am pretty much in bed for Wednesday’s and Thursdays... really hard to get up out of bed. I have arranged my eating to try and eat as much as I can on my ok days. I think the food as well as the reduced chemo drugs and chemo schedule has made a difference in my strength . In the beginning when I was so close to death all I could eat was baby food and Ensure protein drinks; now I’m eating regular small meals. As for pain, I live in California and we have medical marijuana, which my oncologist suggested( because he said pain meds have side effects that might give me issues). I take one pill a night and have not had any pain since the day I started. So I will continue until it no longer works for me.

Prayers for you and your mum... each day seems a little different

Sandra

[Christine49]

Hi Sandra,

Thank you for replying. Xx

Mum seems to have been wiped out pretty much since diagnosis (well, a bit before that too) and was low before she started her chemo and then that has basically confined her to bed ever since.

She is on strong pain meds and I think this is giving her quite bad side effects but there’s no way around it as her tumour is quite large and causes her a lot of pain.

She’s been off chemo for a week now and we spoke to the oncologist yesterday who wants her on steroids for a while, then re-scanned and a follow up. *IF* she goes back to chemo it’ll be injections only by the sound of it.

She basically isn’t eating currently and the oncologist said she’s severely nutritionally deficient so wanted her on Fortisip drinks (like a rich build up meal substitute) 3x a day but as it stands even half of one is causing her bad stomach cramps and then needs the loo shortly afterwards, even with plenty of Creon tablets.

Sadly she had another faint last night while on the commode. My dad and sister were both there and managed to get her to the floor with some difficulty (and both injured themselves in the process) so I don’t know what happens from here as me and my sister can’t both be there all the time and it is too much for my dad to handle on his own if it happens.

I am wondering if this is a side effect of the Fentanyl patches in some way as this has only really come on since starting them. She had an episode the same as this in hospital when her bladder wasn’t fully emptying and became toxic on morphine.

She is also doing strange massive yawns and breathing a bit strangely during the night. Perhaps she would be better going back to Zomorph but no one is prepared to make that decision across the weekend it seems.

Feels like we’re stuck in a horrid nightmare currently. Xx

[Support Team]

Dear Christine 49,

I am so sorry to hear that Mum has had an awful time recently. These last few weeks must have been very difficult for you.

I hope you dont mind, but there appears to be several things going on for Mum right now, so I will email you separately....I hope this is okay?

With kindest regards,

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707 (Monday-Friday: 10am-4pm)

[Veema]

My husband did the big yawns...very strange.

Christine, could you get a bit more support from the palliative care team? Our hospice has a hospice at home programme where the nurses come into the home to help care for the patient...it might be worth checking to see if there's a similar service local to you. The trouble is, people always think of the hospice as end of life care and it's so not...they provide loads of useful things throughout an illness...courses, alternative therapies, counselling etc. It sounds like you're all worn out and it's not going to do any of you any good if you're hurting yourselves moving her.

My husband's blood pressure kept dropping close to his death but he actually had sepsis...has she been checked for any signs of infection?

The eating thing is a nightmare, when you know that they need to eat to get anywhere, but they just can't. Is there anything at all that she likes to eat or drink? I think I've mentioned procal powders before, but they really are great at getting some extra calories and protein into more or less anything. The fortisips aren't very palatable, but there are other supplements she can try.

Keep your chin up...it's hard work and we know exactly how you feel.

Vx

[Veebee]

Hi Christine...I agree with Veema. It sounds as if you need more support. This should be put in place by your GP. We had regular visits from the Macmillan nurse from diagnosis. She would ring or call in the beginning and she referred us to Hospice at home as time went on. The support we had was really good and we had a 24 hour phone number to ring. I hope you get more help because you need it. I don't know anything about the patches or fortisip as Allan never had these. He was on liquid morphine and slow release morphine tablets and these kept his pain at bay. I really hope you can get more support in place. Vee xx

[Christine49]

Thank you for the replies xx And thank you to the nurses for the emails xx

They’ve started mum on hydrocortisone and fludrocortisone as well as the dexamethasone as they are concerned about her adrenal function. So far it’s not really made any difference but her BP is slightly better, still dropping when she sits up though.

She’s not eating and is only having at most two regular cup-a-soups a day (with a little salt added) with perhaps a biscuit now and then. She must weigh under 6 stone now and is basically in bed all day long aside from using the commode. She’s peeing fine now and is getting more fluids in at least.

There’s zero energy and aside from the commode she’s unable to sit up for even a few minutes. Her rib pain is very bad, mainly from laying down all the time. Her last BM went okay but we are all still on edge in case of a faint.

After her GP stopped her gabapentin entirely the hospice advised putting one dose back in at night because she had bad insomnia.

I don’t know if I should be pushing her to sit up a bit more, I am already spending most of the day coaxing her into having the soup and taking her tablets.

Is it normal to be this utterly, utterly weak? She’s not been on chemo for a couple of weeks now and is due a CT next week, a transport ambulance with stretcher has been booked. The hospice nurse is due out to us on Monday. We just want her to improve a little xx