Will my mum get to meet her first grandchild?

[Charlotte]

Hello everyone.

My 63-year-old mum was diagnosed with pancreatic cancer on Wednesday, after a CT scan showed a mass on her pancreas and lesions on her liver. They're doing the biopsy very soon, hopefully either today or tomorrow, along with an operation to bypass the blockage in her small intestine so that food and bile can get down. We love food in our family, and at one point they'd told us she'd probably never be able to eat again, so that is some comfort. Once she's healed from that they'll start on the chemo, which will hopefully keep her going for a bit longer.

We are all completely shocked and devastated, as I'm sure many of you will be able to relate to. Mum had been unwell for a few months but she's suffered from IBS for years, so we thought it was something related to that. It's only over the past few weeks that her condition got much worse, with pain at night and vomiting, and she was admitted to hospital on Monday night - less than a week ago. And now this. It's just horrendous.

She is being incredibly brave though, and very calm most of the time. She says she's known for a while that it was something really awful, but she's always been a bit of a hypochondriac so we thought she was probably worrying unnecessarily, and the stress was in turn making her feel worse. How wrong we were - at times I feel terribly guilty, wondering if we'd taken it more seriously sooner, we would have been able to insist on a scan and they would have caught it earlier... but I know from reading up on the internet that the big problem with pancreatic cancer is that it's often asymptomatic for a long time. Maybe by the time she started to feel really bad it had probably already metastasised...? As others on this forum have said, I'm stunned at what a cruel disease this is.

One thing that makes all of this especially sad is that I'm pregnant with my first baby, her first grandchild, which is due in August. She's been looking forward to being a grandma for years, and was so, so excited when we told her I was pregnant. That was back in November, when she looked perfectly well, was living a normal life, going out, enjoying herself... she was going to pilates and tango classes until exactly a month ago.

At first mum was pretty much convinced she wouldn't live to see the baby, but the doctors and nurses seem to think that is quite achievable. Incredible that a week ago we were hoping, even assuming, that she'd be totally fine, and now we're just crossing our fingers that she'll be able to get past August and be able to spend at least a few weeks or months with her grandchild. My brother is also supposed to be getting married in May, and he and his girlfriend are wondering whether to put the wedding forward or back... I've emailed the support staff of this site to ask if there's any way of having a best guess at when she'll be feeling her strongest (once she's healed from the surgery but before she starts the chemo, maybe? Or after the cycle of chemo has finished?), but if any of you have any thoughts from your own experience I'd love to hear them. I do realise that these questions are impossible to answer with any degree of accuracy, but if we could at least make an educated stab in the dark...

Any other advice on how to cope at this awful time would be appreciated. I've already bought a notebook and started writing down questions - thanks for that piece of advice, whoever it was, and thanks to any of you that find the time to read and reply.

Charlotte x

[Nardobd]

Oh Charlotte, I'm so sorry to hear your news, particularly at what should be such a happy time for the family, with babies and weddings on the way.

The shock and disbelief really does turn your world upside down. My husband, Ted, was diagnosed at 62, just three days after I'd been teasing him that his itching was due to an allergy, so I empathise with that guilty feeling too - the answer is that there is nothing more any of you could have done...if you'd asked for a scan sooner, the doctors probably would have said there was no need and if there was a clinical need they would have done a scan anyway.

There is every hope that your Mum will see her grandchild. Statisically advanced pancreatic cancer patients have a life expectancy of 6 to 12 months BUT we were told that two years ago last month and Ted is still very much here (thank goodness). No one is the same and, as Ted said, "statistics be damned!". He has a healthy aversion to hospitals and doctors but has endured two cycles of chemo, one of six months and one of about three months which was cut short because he started to get recurring infections.

As to your question about the best time, so much depends on the individual. Generally chemo has a cumulative effect, so the side effects are less at the beginning of the six months and get more pronounced as you go on. I don't know what regime your Mum will be on but if it's Gemcitabine the usual pattern is that chemo is given for three weeks of the four and then you get a week's break before another three sessions to allow the body to recover a bit. Ted was at his best at the end of the week break, although I have to say he was very lucky and got minimal side effects anyway - a bit of nausea, tiredness and some thinning of his hair with some stomach pain towards the end of the six-month cycle.

Your Mum should be allocated a Clinical Nurse Specialist (CNS) who deals with pancreatic cancer patients. The CNS is a brilliant resource, who can interpret what the doctors say, remind you of things you've forgotten and ease the pathway through the myriad of tests, treatments and appointments, so do get to know her (or him) well. Remember that there's no such thing as a stupid question and there's nothing that the doctors and nurses haven't been asked before, so ask whatever you want to know.

There's no "right" way to cope with this. Everyone has to muddle through and sometimes it feels like you really are just a "muddle". It's obvious that you love your Mum dearly and that's the best thing you can do right now - just love her!

I could ramble on forever but you've probably reached saturation point right now and I know that Jeni, the head of support, will give you lots of practical advice when replying to your email.

Let us know how your Mum's biopsy goes and hwo she's getting on. I'll be sending thoughts up for your Mum.

Nicki

[Charlotte]

Hi everyone,

First of all, thanks Nicki for such a kind and helpful reply - I really do appreciate it. And you're right that both Anna and Jeni sent really helpful replies to the email I sent them - it's such a fantastic source of comfort and support that they (and all of you!) provide. Ted sounds like he is a real inspiration, more power to him.

The past couple of weeks has gone by in a blur of hospital visits, conversations with doctors and nurses, and visiting relatives from South America (Mum is from Uruguay). Mum had a gastric bypass about ten days ago, along with the biopsy, and the surgeons seem to be happy with how she's recovering, although she has been very up and down. Some days she has been able to get up and about and even eat a little, on other days the pain and discomfort and nausea have just been too much for her. I just spoke to my Dad and she was quite sick again last night - I know this will have her really worried as she's scared that it means the bypass isn't working... although the surgeons say that it's just as likely to be to do with post-op trauma, reactions to all the drugs she's on (the liquid morphine they tried her on at one point really didn't agree with her), and (most frighteningly) the progression of the disease itself.

There was an MDT meeting about Mum last Thursday and we should be seeing the oncologist(s?) this coming Tuesday. I want to go fully armed with questions but am not sure what I should be asking - any suggestions would be very gratefully received.

Also, we're hoping that Mum will be able to come home soon and Dad is trying to get the house ready for her and wondering what sort of bed would be best - does anyone have any suggestions?

Thanks very much,

Charlotte x

[lynbo]

Hi Charlotte

I've said before to others, a good thing to do is take a notebook with you when you go to the oncologist, write down any questions you have, like how soon will next appoint be? Who do I ring if I need some advice and help?

Even if you have to ask them to repeat things till u jot it down then do, I did.

Ask them to get occupational health involved, straight away, when I pushed for it, my husband got a bed support, it was an electric back support that was operated with a hand remote, like the ones in the hospital.

As you know, with pancreatic cancer sitting forward and sleeping tilted forward, eases pain.

We got a padded seat for the toilet, and a bath lift, which was good as it lowered and lifted Andy in and out of bath.

The district nurse sorted this, but I had to ask and push for it, and I found out later we could have had it a lot sooner??

So - hope it all goes well, stay stro g, take care.

Xxxxxxx

[Ellie]

Hi Charlotte

Just wondering how your mum is lately? Maybe you'd like to give us an update.

Hope you are feeling ok, too, with your pregnancy.

Best wishes

Ellie

x

[Charlotte]

Hi everyone,

Lyn, a belated big thank you for your reply. We felt a bit like we had to push for OT to get involved too, it's crazy isn't it? When these things can make such a difference. Although it's kind of frightening when all the bits of equipment appear in the house, I can't imagine how they make my poor Mum feel. But she's got an adjustable bed now and it's made a huge difference.

What a rollercoaster of a few weeks it's been since I last posted. Mum was discharged from hospital at the end of March and started chemo three weeks ago - she's on the Telovac trial (big thanks to Jeni for the info about that), which will hopefully give her a few more precious months with us. Since then she's had three high temperatures (two days after the Gemcitabine each time she's had it), and has had to go into hospital each time as a precaution - 5 hours in A&E the first time, and three nights in hospital on each of the next two occasions. She hasn't been neutropenic, thankfully, and they haven't found evidence of an infection as far as we know - but they still put her on broad spectrum antibiotics which give her terrible diarrhoea.

Going to the medical day unit for the Gemcitabine infusion has also been a mission each time - last time we were there for 8 and a half hours, which seems insane when the infusion only takes half an hour, the bloods take 5 minutes (although obviously you have to wait for the results) and we see the doctor for around 20 minutes. All the waiting really tires Mum out, and she's been suffering with swollen legs, so a whole day sat in an ordinary chair doesn't do her any good (there's nowhere for the patients to put their legs up in the waiting room, although last time we managed to get her an adjustable seat in the treatment room for some of the waiting time, so at least she was a bit more comfortable - I recommend this to anyone facing the same problem!).

I suppose that we should be grateful that overall she hasn't suffered too badly with side effects from the chemotherapy - apart from the swelling (which we've been told could also be an effect of the cancer), and some sore skin on her legs, and of course the tiredness. She hasn't had any sores in her mouth for example, which is a big relief as although her appetite has waned a bit, she really fancies things like orange juice and pineapple. But mood-wise she's really struggling. She's really angry and despondent at the moment, and who can blame her? But she even said at breakfast this morning that if she could just flick a switch and die right now then she would, which really shocked me. My brother is getting married a week on Saturday and she's talking about not being well enough to go to the wedding... but she's just started a two-week break from the chemo, so we're trying to persuade her that there's still time for her to feel better (Nicki, I'm taking comfort in what you said about Ted being at his best at the end of his break from the chemo). The thing that seems to be bothering her the most is the swelling, I'm going to post separately on this as I'm desperate to see if there's anything we can do to reduce it, if anyone has any ideas I'd be ever so grateful.

Charlotte x

[Charlotte]

...And Ellie, pregnancy is going well, thanks for asking! I'm 6 months now with a proper bump. We're having a boy, Isaac (means 'he will laugh') - he's got very wriggly over these last few weeks, Mum felt him move last night and I think it cheered her up.

Cx

[lynbo]

Hi Charlotte

Andy had swollen legs too, we were told to keep them raised as much as possible, I put pillows & cushions under them when he was sat or in bed.

I used to rub them for him too.

I know what you mean about all the aids in the house, I made light of it by using the bath chair too, it was a novelty, I said I had fun being lowered and lifted into my bubbles, anything that helps them is a bonus.

They did talk of a big recliner chair that practically stood you up when upright, but in our area there wasn't one available.

Can only ask though eh?

Chin up

Xxxxxxxxxxxx

[Charlotte]

Thanks Lynbo, that recliner chair sounds worth asking about... and I like the way you made light of the equipment, every smile or laugh feels like a small triumph doesn't it!

x

[lynbo]

Hi Charlotte

Yes it does, if you don't think positive and laugh, what have you got? It's won then hasn't it?

I even once persuaded Andy to go in his wheelchair, but he said I was such a bad driver he would end up in A&E with me swerving into walls!

Ask about the chair, as I asked my niece ( she is health reporter ) and she said other families who she hasty have benefitted from it in the past.

Much love

Xxxxxxxx

[laura]

hello charlotte,,re your mum having to be at therapy for so long thought this might help,we, well my husband. is also on gemcap just started his 12th cycle? two days bfore treatment we go to our doctors and the nurse takes his bloods and the results are with the chemo dept the next day and they can then order the chemo from the pharmacy, it can not be made up untill the have the blood results r back and i understand it takes a while for all this to happen. If we are in on time, and its not always possible if they have had problems with other patients bfore us, we are usually out in an hour, perhaps you can ask if you can do this ? the nurses there can give u a blood test form, to be reported back to your oncologist, this could save you a lot of time. Re your mums legs, my hubby has also started to suffer with this we have found fruosimide [ diuretic] has helped also wearing looser shoes etc, but i just get his feet up high and it usually goes down, problem is if you dont do any exercise it doesnt help, but sometimes skin is tight and sore and he doesnt want to move to much.

so many problems crop up you lose track of what to do, i feel like a pharmacist some days, but hey at least i still have him to care for, and whatever it takes eh ? love to you and your mum and all the people on here laura xxxx

[laura]

hi charlotte just wondering how things are with you? kind thoughts laura xx