Hi folks,
First post, please don't take this wrong but its a forum I never wanted to post in, yet our cards have been dealt and here I am.
It's likely to be a long post, my wife has been diagnosed at stage 4 and I'm struggling with my feelings and being strong for her and the kids. I've been thinking about how I can keep myself mentally strong, I have a call with a counsellor tomorrow, but have been thinking about writing a blog, but in the meantime, we have hit yet another bump in the road today and so I thought i would kick off by sharing our story, so apologies in advance for whats likely to be a long post.
It started on Boxing day - we had bought in quite a lot of food for in laws over Christmas, but with the rapidly changing lockdown rules, ended up not needing it, so we had a slap up cheese feast after the kids had gone to bed, but as she finished the plate, my wife started to get pains in the abdomen - we thought nothing of it as she has suffered on and off with IBS like symptoms all the time I've known her, but it didn't get better. Throughout January the symptoms got worse but were masked by a shoulder injury and the stress of home schooling. She spoke with the doctor who felt that it was muscular and the Ibuprofen was upsetting her stomach, but by March it had got to the point where she was struggling with the stairs (we live in 3 stories) and having to rest after any work. The final straw was when she was exhausted by cleaning out the rabbit and i insisted she called 111 and eventually presented herself in A & E.
She was in for 2 days, at first they thought it was gall bladder, but a series of tests ruled that out and finally on 29th March I was called in and we were hit like a run away train by the news that she had Stage 4 Cancer with unknown primary, but had extensive secondarys in her Liver and some in her lymph nodes and a lung secondary. We were absolutely stunned - the next days passed in a blur, with further investigation, biopsy, gastroscopy etc.
We had a consultation for a trial at a specialist hospital for molecular diagnostics (which we hope to get the results of in a week or so) and chemo was due to start. The oncologist and our consultant decided the likely cancer was Intrahepatic Cholangiocarcinoma, or Cancer of the bile duct (although still not officially diagnosed), but then the next bump, she started to swell in her abdomen. More tests, another stay in hospital revealed that it wasn't ascites or a big build up of fluid, but constriction of a lymph vessel stopping fluids circulating properly caused by a tumour pressing on it and the risk of not having chemo was deemed greater than the swelling and so finally we started and had our first session.
Now I know that you will expect me to say this, being married to her, but my wife is flipping amzing - she is so optimistic, so full of fight and we dubbed that fight back day - we know the situation is serious, but finally we could push back. I was so nervous about how the chemo would affect her, but she coped fantastically well but..... then her legs and feet started to swell badly and she really started to lose mobility which was a huge blow to her, but the hope was that as chemo progressed, the tumours would shrink some and release the vessal and deal with the swelling.
Today was supposed to be day 2 of chemo, but she had a bad blood result, high Liver enzymes, real concern at the swelling and they have said that they can't do chemo today which we are gutted about and I have just taken her back to hospital for assessment. I am so scared that we will not be able to have any treatment at all, she is deteriating so fast with the swelling that I am scared that she will not have options, but the very worst part is the not knowing what the situation is, the first 2 weeks after diagnosis were hell and we're back not knowing again.
I feel so helpless, i always want to try to make thigs right and I can't help her. She is only 44, never smoked, didn't drink much, has a reasonable diet, no family history, it shouldn't be happening to her.
Also we have 2 young children, aged 9 and 7 - they know that she is ill, but we haven't mentioned Cancer (both of my parents died from Cancer in the last few years so we don't want them thinking about Mummy dieing when thats not on our agenda at the moment, but I know at some point I'm likely to have to break their world and tell them about their Mummy's condition.
I just feel so helpless.
If any of you have made it to the bottom, well done, and sorry for going on, I think I may start that blog after all, but thanks for reading.
Much Love to you all
Si X
