Struggling with likely inoperable cancer diagnosis while waiting for confirmation

[EmeraldJeanie]

I'm struggling. My husband is in hospital and been told after MRI likely inoperable cancer. If confirmed (biopsy Tuesday and they seem certain) then week til confirmation of something they are sure about and then chemo/ palliative care. Also procedure on Monday before biopsy Tuesday.
He looks the fittest man on the ward. He walked 15,000 steps round the hospital grounds yesterday. He is masking for our boys - sixth form and university age but talking about finances/ dignitas with me.
I am signed off work with stress. We are both late 50s.
This is all rather outing for anyone who knows me but perhaps that doesn't matter.
I need to buck up. I am losing weight and slim anyway. This limbo awful and yet knowing for sure will be awful too.

I was in your husband’s situation 18 months ago. Being in limbo is the worst. That first week in hospital it felt like a complete out of body experience. Everyone was so ill and I was doing laps around the hospital like your husband.
My suspected diagnosis/prognosis was awful but that changed a bit once they actually found out what they were dealing with. I got a plan and treatment. Being stage 4 isn’t always what it was years ago. I found they were very negative to start with. Which I suppose they have to give the worse case scenario, but the best thing someone told me was, my statistics aren’t on Google! Those statistics include people of all age and fitness levels.

I found focusing on eating well really helped me and I paid for a private blood test for all my vitamin levels and omega 3 levels to be tested and corrected them if necessary. It got me I the best place for starting my treatment. At a minimum get him to start taking a good quality vitamin d.
I can’t recommend Maggies enough, it is an amazing place. Just walk in you will be warmly welcomed. I don’t know what I would have done this last year without them. It’s such a lovely place, as soon as I walk in a feel calm. It definitely not all doom and gloom in there I promise.
Take care xx

Also once you have the proper diagnosis don’t be afraid to ask for a second opinion and ask about trials.
Look up the leading drs on the type of cancer and ask for a referral. I think its your gp who does that. There’s also a national trials platform. If your husband is otherwise fit he more likely to be accepted on to a trial.
I know someone who was told there is not much that can be done, they went to see a dr at the Royal Marsden and are now on a trial.

Thank you so much. Not been to Maggies yet. The word inoperable due to position of sinister growth and organ near terrifying. They ran out of slots for a procedure yesterday which was tiring for him and frustrating all round. Supposed to have another today. I may not be up in time for doctors round so suggested questions for him.

At leading hospital so hope trials etc an option. We just need some concrete answers to end this limbo and move forward in whatever way we need to.

Sorry you are going through this OP. I just wanted to share that my mum was diagnosed with an inoperable tumour which was referred to as cancer. Turns out it wasn’t and she had a rare autoimmune disease. She is still here 10 years later.

I’m so sorry. My 8 year old was diagnosed with cancer in November and what you describe is exactly the feelings I went through. Although we are lucky and have a good prognosis, although we didn’t know that at the time. All I can say is keep putting one foot in front of the other, keep moving, try to eat, even one thing at the end of the day. Just get through the days right now and over time it the days will become less awful. Thinking of you xxx

Hoping you get good news. In some cases, the cancer being inoperable means chemo or immuno to shrink it until it is operable and then surgery. I am hoping this is true for your husband. He is young and fit, so the odds are good they’d throw the kitchen sink at it to give him the best chance of beating this.

Maggies was so hard to find that I didn’t even find them until after active cancer treatment. I did chat with a MacMillian cancer nurse several times a week though via their hotline. tel:0808 808 0000

Op, you absolutely MUST reach out for support for you. You cannot be everyone's support you will crumble.

im really sorry you are both going through this. Maggie’s are fantastic, the centres are just lovely places so you don’t even need to talk to anyone, they always have a lovely garden and you can just go and get some time there if that’s helpful. Otherwise they have trained cancer nurses/therapists on hand who can offer someone to talk to, they are really good at supporting families of people with cancer as well as the person themselves.

just walk in, there will be tea and biscuits and someone to hold your hand.

Sending love and support to you..my beautiful mother got a Stage 4 inoperable diagnosis about three weeks ago..she's been fit as a fiddle up to now so it was a complete shock.

I am currently trying not to let my two younger children find out because they are in the middle of A level and GCSEs....I told my older two, who have just finished finals, last week. It's been exhausting pretending everything is fine.

The first few days were just a blur of panic and tears etc, but we are now into the hands of the amazing palliative care team and oncology have decided that they will try 3 months of chemo, it's easier to focus on the plan and just make each day positive.

I have an amazing group of friends who have been sending WhatsApps and checking in on me, and being able to go and have a good rant/cry with them is cathartic because I can't do it at home...I'm desperate to be with my mother but have to wait until exams are over next week and then I'm going to stay with them whilst she has her first chemo session..and then just take it a day/week at a time.

Thinking of you and your family and sending strength and courage.