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MaxineR
Posts: 8
Joined: Wed Aug 23, 2017 7:26 pm

You've got to be kidding me...

Postby MaxineR » Wed Aug 30, 2017 6:37 pm

Apparently not.
Two years (July 2015) ago my mother was diagnosed with T-cell leukaemia/lymphoma. It was described to us as rare and aggressive and she was so poorly we had 'the chat' in the quiet room; you know the one with the warning shots across the bow and then the boom - she's on a knife edge. But my mother is made of the strong stuff and after a half dose of chemo she was well enough to complete the course and kick cancers butt.
Apparently not.
Fast forward to 2017. A routine check up on bloods for the lymphoma in June was all clear. Amazeballs, we all cried hurrah! and carried on business as usual. However at the beginning of July Mum started that thing again with the variable appetite, a week later there were some stomach pains, a week later the tiredness & lethargy set in. My Dad was understandably worried, it was the symptoms of lymphoma BUT without the lumps.
Apparently not.
In the last week of July the local medical practice started to get involved. Gall stones. Surely she would be in agony? The GP arranged for some tests. I don't think the results ever came through as in the first week of August she was rushed to A&E with jaundice and all the other symptoms that we are all too familiar with, the dark wee and pale poo. The diagnosis proper could now commence and the scan revealed a small tumour on the head of the pancreas. The size of a peanut (and no mets as far as we know). 'Whip it out' I said.
Apparently not.
The pesky tumour, size of a peanut, is interfering with the blood vessels. It is not resectable. It is inoperable. It is not lymphoma, it is not curable. It is pancreatic cancer. We all know you cannot take a pill for this one.
And so it begins.. A stent is fitted, the bile drained, Creon prescribed, Mum comes home (hurrah again!), and gets on with her gardening! Dad makes plans, cancels plans, makes new plans. There is a shadow hanging over us but she's ok, pottering around, dead heading etc. Business as usual.
Apparently not.
W/C 21 August rushed into A&E with severe pain 10/10 and vomiting old blood. She was in a terrible condition and very confused. A NG tube was fitted to drain the stomach to stop the vomit and Mum was pumped full of fluids and antibiotics. It turns out to be a biliary infection with a pseudo-obstruction in the stomach (it went on strike due to the infection). She had nothing of any significant calorific value for 7 days despite my constant badgering for them to consider TPN (intravenous feeding). We did take in some tangy jelly sweets for her to suck on. Finally free fluids were permitted on day 8 and Dad brought in some hot chocolate yummm!
The great news is that small meals are now going down. Morphine has been swapped for paracetamol and codeine. The stool is solidifying and with a zimmer she can take herself to the loo which is much more dignified that the other 2 options. I can't wait for her to come home so we can look after her nicely. Hopefully this week. Then Dad can make some new plans and have a rest himself!
Dad is the primary carer, I am second in command and do what I can. I have 2 fabulous brothers, one is a consultant vascular surgeon and always good for a second opinion and translating medi-speak. I see what you mean about the roller coaster ride of PC, I just hope my Mum doesn't get off too quickly. The next instalment will be the chemo, to have or not to have, her choice. Oncologist tomorrow so we'll see what's on offer.
A big thank you to all you brave souls that have posted on this forum with info that I have found invaluable. This is our story.

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: You've got to be kidding me...

Postby Justamo » Wed Aug 30, 2017 9:43 pm

Maxine, you missed out the special 'Buy One Get One Free' offer of Type 1 Diabetes. As you have now landed on Planet PC your Mum is entitled to Type 1 along with all the associated equipment and testing strips and needles. I would complain to somebody if I were you.

You sound as though you are handling all of this quite well. I sound like that too. You are lucky to have sensible relatives; I have a sensible cat who is a lot more use (and more decorative) than my rather needy stepson who is currently Not Speaking to his Dad. But no matter how many relatives you have, and fellow carers come to that, Planet PC is still a hell of a place to be. This forum has saved my sanity on a number of occasions and I'm glad you are now one of us and you can let off steam whenever you want to.

I hope your oncologist is like ours. To begin with we were handed over to a surgeon who wanted to be A Star (Mr Bogeyman) but a Good Fairy in the guise of a consultant anesthetist waved her wand and got rid of him for us and now we've got a lovely fat jolly oncologist called Dr Feelgood. Example: When Peter asked him if it was OK to lose a couple of pounds Dr Feelgood looked hard at his computer screen and then enquired when Peter's next modelling assignment was due. Losing weight (deliberately or otherwise) is not acceptable to Dr Feelgood. We're seeing him on Friday. For various reasons I am expecting bad news. So is Peter. Perhaps we're both wrong ?

Best of luck with your oncology appointment tomorrow; if it's any help Peter is 85 and sailed through 9 cycles of Gemcitabine without too much trouble. Other sufferers on here have had a dreadful time with it, which only goes to show how different everybody is.

Lots of us will be thinking of you tomorrow; please let us know how you get on, and can you also say how old Mum is ?

Take care
Love, Mo

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: You've got to be kidding me...

Postby Didge » Wed Aug 30, 2017 9:54 pm

A bummer. But just occasionally someone with a small tumour and no mets becomes operable after chemo. If that's the way your mum chooses x

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: You've got to be kidding me...

Postby PCUK Nurse Jeni » Thu Aug 31, 2017 4:13 pm

Hello Maxine,

Thank you for your post on the forums, a place you would rather not be I am sure.

It is however, a place of great support, and I am sure that you will find this out as time goes on.

Should you require any specific information related to pancreatic cancer, please do not hesitate to contact us - details below.

Kind regards,

Jeni.

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: You've got to be kidding me...

Postby Wife&Mum » Fri Sep 01, 2017 10:49 am

Hi Maxine
How awful for your Mum, what a 2 years she's had. I hope today's meeting goes as well as possible.
As Didge says, sometimes tumours are converted from inoperable to operable after treatment. That was my husband's situation. And it's not uncommon for a second opinion to be more positive than the first opinion, so it's worth shopping around. In our case we found a surgeon with a particular interest in venous involvement of pc. Generally though, if the disease has spread beyond local, or there is arterial involvement, no surgeon in the U.K will operate.
Tons of luck!
W&M xx

MaxineR
Posts: 8
Joined: Wed Aug 23, 2017 7:26 pm

Re: You've got to be kidding me...

Postby MaxineR » Mon Sep 04, 2017 5:38 pm

Mo, Didge, Jeni & W&M thank you all for your kind words of support and encouragement, especially when you have enough to deal with on your own plates. Much appreciated!
To fill in a few gaps...
Mum is 78 and despite her previous head to head with cancer she is reasonably fit bar the usual aches & pains that come with living a good life.
The good news is that we have Mum back home. She is utterly exhausted from the effects of the infection, medication and general lack of energy, though there is a slight improvement each day e.g. getting up out of a chair unassisted - hurrah for little milestones!
The bad news is that she is too weak to have chemo at this time so I'm really not sure how this is going to pan out. She still has to finish the antibiotics for the infection and then pile on some poundage to make up for the weight loss incurred by 7 days of starvation. Also she's not feeling that peckish but I found some useful 'tips' on this web site about build up diets and have passed these on to my Dad. Today she ate a banana sandwich so that's great.
There are various medical practitioners due to visit this week including someone from the local hospice. It's good to know that there is a support network out there.
Good luck everyone and thanks!

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: You've got to be kidding me...

Postby Proud Wife » Mon Sep 04, 2017 8:02 pm

Hello Maxine

I've not been able to post on here for a while as I couldn't log on but have been following your story.

I hope your mum gains back her strength and is able to start chemo. My hubby was skin and bones at diagnosis but with the help of steroids and metoclopramide, soon got his appetite back and I piled 4 stone on him! Perhaps your mum could benefit from a short course of steroids if she's not go Mo's BOGOF (diabetes).

Wishing you all the best
PW xx

MaxineR
Posts: 8
Joined: Wed Aug 23, 2017 7:26 pm

Re: You've got to be kidding me...

Postby MaxineR » Mon Sep 04, 2017 10:38 pm

Hello PW and thank you for the advice. Wow 4 stone sounds like a lot of rebuilding, well done! Luckily Mum does not have the BOGOF so I will pass on the info on the drugs that you mentioned. Mum is a retired Pharmacist so she will enjoy looking those up in her Pharmacopeia! She has always enjoyed cooking & eating all kinds of weird stuff (nose to tail, 'Butcher do you have any pig cheeks in stock?'!), I am sure she would be up for some medicinal appetite stimulants.
Cheers