Wife diagnosed with stage 4

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Hello folks,

So, here I am, and don't take this the wrong way, but I really wish I wasn't, but I guess that's the case for all of us whose fate it is to sail this ship.

Headlines first of all - my wife is on a rocky road having been diagnosed with Stage 4 Cancer which is officially of unknown primary with significant Liver mets and smaller mets in the lung and lymph nodes, but that we suspect is and is being treated for Intrahepatic Cholangiocarcinoma.

It all started with cheese and boxing day. Like many in the country we were looking forward to entertaining family at Christmas in line with government guidelines, but as I'm sure you'll recall, in the face of a surge in the pandemic, socialising was drastically reduced which left us with a load of food in the house, and only us to eat it - well, what were we supposed to do? On boxing day evening after the kids (Boy aged 9 and Girl aged 6 at the time) had gone to bed we settled in for a huge cheese platter, a nice glass of wine and a film. I must admit I was feeling quite stuffed at the end, but my wife was struck with a really bad stomach pain and pain in the side. At this point we didn't think too much of it as, in the years that I have known her (we've been together for 23 years) she has had what seemed to be IBS like symptoms on occasion and the solution has always been to sleep it off. The next day however, that pain in the side was still there.

Over the next few months she carried on working in childcare, getting through the day with a combination of neurofen and antacids. We put it down to the stress of working in lockdown and home schooling, we put it down to pulling a muscle lifting one of the kids she was looking after into a pram - we put it down to normal day to day issues that would ultimately resolve themselves. The doctors agreed and prescribed stronger stomach settlers, felt it was the neurofen causing the pain and so on, but she started to get worse. I would find her absolutely shattered, laid out as soon as the working day was done, sometimes sleeping as the kids had their nap, she was getting out of breath walking up the hill on the school run or when going up the 2 flights of stairs in our house, she could tolerate less and less food, meat went off the menu - I should have known it was serious when Gin and wine were dropped, but we plugged on with our busy lives until, in late March she was absolutely shattered and had to lie down after cleaning out the rabbit - at this point I insisted that she call 111 as I knew this wasn't normal.

On the 27th March she attended A&E and they kept her in, at first thinking it was gall stones, but then as they gave her an ultrasound and followed up with a CT scan it became clear this wasn't the case. I was called into hospital on the 29th for us to get the news that changed our lives - Stage 4 Cancer - life limiting - incurable - the words were like a stick hitting us over and over. The next days passed in a blur - she had a biopsy, she had a number of investigations to try and find the primary, we went to the Christie to take part in a trial for molecular typing, but always, for both of us the thought (although we only admitted it to each other afterwards) "What if its too late? What if they can't do anything?"

After the longest 2 weeks of our lives we arrived at the consultation which our Oncologist opened by confirming that we were dealing with stage 4 Cancer which I thought was odd as I thought we'd established that a few weeks back, but I guess they need to be sure we're all on the same page, and then the good news - we were able to have treatment - they can't cure it, but we can have chemo with the aim of reducing the tumours - I know that it may be a matter of buying time, but the hope is that we can kick the can down the road and see what happens.

So far, so bad, but even then Cancer hadn't taken enough - in the following weeks my wife began to swell in the abdomen and the legs - it looked like she was pregnant, her knees and ankles disappeared and her mobility was lost, meaning she has been in and out of hospital, one time falling down the stairs, struggling to even get up from the settee - this was caused by a tumour pressing on a lymph vessel stopping her body moving fluids as it should, especially after chemo and the infusion of fluids. At one point she was refused chemo as a result, but the Oncologist over ruled the nurses on the grounds of no chemo, everything else is pretty much a moot point, there will only be 1 outcome. The swelling came to a head this weekend as her legs started to spontaneously weep, i guess the pressure got so high the fluids had nowhere else to go and so she is now back in hospital and yesterday had a drain fitted. Her next chemo is due on Tuesday, so we hope that this will allow the swelling to reduce enough for chemo to be possible. On top of that she has also been up and down with her platelet count which has also delayed chemo (I understand this is a side effect of Platinum based chemo)

And that brings us up to date - so what am I doing here? Well, I feel so helpless - this is my love, my partner, my best friend, mother of my beautiful amazing young children. She is only 44, never smoked, didn't drink too much, had a reasonable lifestyle, no Cancer in the family and yet this is happening. As a bloke I want to fix things, make things better and I can't do that - I feel so helpless - all I can do is look after the kids and be there for her whilst the marvellous doctors and nurses do their very best for her. I dread the future, I'm scared about what will happen and, whilst I try to take each day as it comes I can't help catastrophising. I always stay positive around my wife and around family and friends, but i am clear that there is a very real chance that I may lose this incredible woman in the very near future - she just needs a break, she needs her platelets to play ball, her swelling to come under control so that she can have a decent run with chemo and we can see what happens. We also have the molecular typing to come back, maybe that will give her another chance to kick the ball further down the lane.

And thats me, gosh don't I go on? If you've made it this far, well done on your staying power, I hope i haven't waffled on too long. I have to say that, whilst we are having amazing support from so many brilliant family and friends it always feels like people on the outside looking in and I feel that even with the best of intentions they can't quite understand what each of us is feeling and I have to say to be able to share our story with you, a community that truly gets what we're feeling and what we're going through. Thank you dear reader, its appreciated.

With love

Si x

  • Hi Si.  I am so sorry that youare having to go through this.  Unfortunately, this type of cancer is insiduous and creeps up on you like a mugger on a dark night.  I thought it was just me slowing down as I got older!  My fiance was in the same boat as you and had to pretty much watch me sleep in a dark room and worry (Capecitabine made me extremely sensitive to light) for most of last year.  

    My thoughts are with you.

    Dianne

  • Hello Si

    so sad that you and your wife are so young to go through this.  Cancer is so unfair and these gastrointestinal cancers creep up and before you realise it is too late for surgery.  My husband has similar problems to your wife but he is in his mid 70’s. His chemo has been interrupted too.  Platelet counts, white cell counts red cell counts all become all too familiar words.  

    I hope you feel it useful to post on this site.  I have no suggestions for you beyond what you are doing ie staying positive especially in front of your wife and children.  Yes, I empathise with the feeling that people on the outside aren’t really aware of the problems and significance of what your family is going through.  Do you have parents or siblings who it could be helpful to fully put in the loop?  A best friend’s shoulder for you to cry on might be helpful too.

    I sincerely hope your wife has been able to resume her chemo and the outcome gives her time and you can enjoy the summer together as a family.  My thoughts are with you both.  x JaneyC

  • Hi SI,

    I shan’t bother you with all the details regarding my wife apart to say that we are in the same situation. When primary cancer metastasis the oncologists put you into a different category, ie they take options off the table. With your situation I would say the first priority would be to deal with the Lymph Nodes. Not sure what your financial position is. My wife is due to have radiotherapy to deal with the painful swelling etc in that area. Looking at around 6K for that. Regarding the DNA sequencing which we also had done. Looking at approx 15% chance of a therapeutic for your wife’s mutant cancer gene. Need to chase that up. Usually takes 4 weeks for results. They have a therapeutic for the FGFR mutant. I would say unlikely she has that, you never know. If I can help in any way please let me know as I have done a lot of research.

  • Thanks for this Kev, sorry to report that it was all too late - my wife died a couple of weeks ago

  • I am so sorry Si. Your love for your wife shone through your posts.  Cancer is so cruel.  You and the children will be devastated.  My condolences to you all.  Janet C

  • I’m so sorry for your loss x