My mum's story so far

[Leedslass82]

Hi everyone. My name is Becky, 33 and my mum has been diagnosed with recurrent pancreatic cancer. Here is our story so far:

Past problems - she smoked most of her life and had chronic bronchitis every winter. One time leading her to having breathing problems so ended up in a&e. This prompted her to stop smoking. They also discovered she had diabetes which was treated with tablets.

Fast forward to August 2013 - mum went on holiday with my stepdad and step-granddaughter and was constantly being sick. She had lost over half a stone without trying and had really bad stomach pains. She went to the docs who did a urine test which came back with high protein levels. Over the next few months she had numerous tests which on 4th November 2013 was diagnosed as having a tumour on her Pancreas. They then changed her mind and said it was IPMN.

Her surgeon said that he wanted to operate and take the whole of the pancreas (plus some other bits of pieces) but she had to lose weight first. At 58, 5'1" and nearly 15st it was a very risky operation.

January 2014 and mum had been unwell all over Xmas and then just after the new year she started to go a bit yellow. We convinced her to go to the hospital and we're glad as her bile duct had become blocked. They put in a plastic stent which didn't work so within a couple of weeks she was back in with jaundice so they put a metal stent in which did the trick.

Due to the jaundice her surgeon said that they needed to get her in for the total pacreatectomy asap. Many dates for her operation were booked then cancelled then eventually on 7th April 2014 she finally had the op. After 5 weeks in hospital, one broken wrist and so many problems with her oesophogas she was finally. By August 2014 she was still healing due to infections but doing well on the whole. The good news was that they only found cancer in 1 of the cells.

Then it was time for chemo. She only had one session which really knocked her for six. At the second appointment they said that as she reacted so badly and it had been months since her operation they decided she didn't need any more chemo. I thought this was ridiculous, they should have at least carried on as a preventative measure, surely?

Anyway, since the operation she's had problems swallowing and was just told it was scarring because of the tube she had to her stomach after the operation. She had quite a few dialetations which only worked for a week or so. So in December 2014 they decided to put a stent in. Within 24hrs she was constantly throwing up (rather than at meal times) so they took it out. End of January 2015 and they put a dissolve able stent to in.

So here we are in the present day. The stent should have dissolved but she can still feel it and now she has been having terrible back pain for the last month or so. It was her 60th birthday on 1st April (I know, a stupid day to be born!!!) and she went to Spain with my stepdad for a week which they really needed. 2 weeks ago the gastro doc was concerned about her back pain so organised a ct scan.

We finally got the results on Friday which were not good news. Although in the last 2 weeks she has really deteriorated. Sleeping all day and night, not eating and in constant pain. She has still been losing weight which on the whole has been a good thing given her start weight but not good if you know what I mean.

Mum knew something was wrong as she said it was the pain that she felt when she first started getting ill in August 2013. She was right, the cancer had come back. Even though she has no pancreas, the Dr said that there must have been some microscopic cells left behind. Now she has a big tumour and cancer in a lymph node. It is definitely inoperable so need to see the oncologist on Thursday.

[Leedslass82]

I am so sorry for the long post but feel like I have got a lot off my chest there.

So now we are waiting to find out what stage we are at. They said that they can give her chemo which she flatly refused at first but convinced her to wait.

I just don't know what I'm feeling.mi haven't really cried yet although will do tomorrow when I tell my best friend.

Again, sorry for rambling on. I am sure my other posts won't be as long.

Thank you for listening

Becky x x

[J_T]

Hi Becky and welcome to the forum. So sorry about your mum's diagnosis. She has certainly been through some tough times and its just terrible the cancer is back.

Good luck with your oncology appointment and keep posting, you will get lots of support and advice.

Take care.

Julia x

[Leedslass82]

Thank you Julia. It just seems so unreal. I have done a lot of research and feel like we should have been told after her op that there is every chance it could come back. There are so many things I would have done with her if I'd've know.

I am just so scared knowing that she will never see me and my fiancé get married (no date set). She will also never meet her grandchildren.

Fingers crossed the oncologist has a bit of good news x x

[Bowie]

Becky, I am sorry to hear about your mum, but you never know, there are different sorts of chemo and some work better for some than others, so it might just be trying to find the one that suits your mum. I know that this is such a terrible shock and so much distress to live with, but for some the disease can become stable and hopefully this is the case for your mum. I hope it all goes well for your mum at her appointment. Fiona X

[rsk1974]

Sounds like your mum has had a really tough time,and you too supporting her. I felt the same as you, my dad had whipples and then 6 months preventative chemo, I was oblivious after that it could return. Stay strong and keep asking questions and pushing for answers.x