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.

OP, please don’t panic! Inoperable doesn’t mean terminal. Lots of us have inoperable cancers. It just means they can’t reach them surgically or surgery isn’t the most effective treatment.

Mine is inoperable, melanoma, not because they can’t physically operate (they technically could), but it isn’t the most effective treatment approach. Systemic treatment, in my case immunotherapy, but there are other options like chemotherapy, targeted therapy, radiotherapy and a few other more specialist things. The 10 year survival rate is still 50% for my ‘inoperable’ cancer and if I am cancer free after treatment, it jumps to 90%. There are a lot of options these days.

I cannot recommend enough not googling, but do ask what the treatment approach will likely be and join a UK based Facebook group for his specific cancer. I’ve found that a really good way to get information about treatment and what to expect - also lots of lovely success stories from people who have come out the other end.

Hope you're doing okay @EmeraldJeanie . I'm someone who puts weight on in high stress situations but would something like Huel be a good option if you're struggling to eat and drink?

Huel is made with pea protein which isn't super digestible, but these are made with whey protein which might be easier and there are a fair few flavours:

www.hollandandbarrett.com/shop/product/yfood-cold-brew-coffee-drink-60060572

@EmeraldJeanie I’m sending you hugs (from a stranger on the internet).

I won’t dress it up, it’s all shit, and you’ll feel like you are wading through treacle. I’m going through this hideous journey with my mother, and like you it’s rocked my world, but I can’t compare a parent to a spouse.

We’re 3 (maybe almost 4 years in) and have just (at Christmas) moved to palliative treatment. So far the treatment is doing its thing - no progression and she’s remarkably well, but it’s hard.

Be prepared for getting frustrated by changes to things often - results on Tuesday, sorry won’t be until Thursday, 6 sessions of chemo - sorry we meant 12. It’s all new and scary as hell, but you will turn a corner and it becomes a “new normal”.

These are the things that have helped me -

a note book, that I take to every appointment. I write everything down, because you will probably hear a lot but not listen. It’s useful to have a point of reference.

check what policies you have available in work that might make life easier - even if you don’t need them now. Is there a carer’s policy, a cancer policy etc, etc.

if you have one, ask for a referral to occupational health. They will be able to help you, if you need reasonable adjustments whilst supporting your husband.

easier said than done but keep in mind treatment advances are made all the time, if you are able to reframe it as living with cancer it may help.

outsource anything that you can - get a cleaner, batch cook, get the ironing done. If you are able too do it.

it will consume you for a long time. I broke at Christmas time (crashed my car, couldn’t stop crying), and I realised I’d been in a constant state of fight or flight for a long time. Make at least one hour a week for yourself - book club, coffee alone, sound bath, yoga - just something that is just for you.

Some of this might not be relevant now or ever but I wish I’d had someone share with me.

My world has become very small - apparently I bore people now as my mother’s cancer has become my personality. I really hope you have good friends/family around.

Thank you all so much. Although not writing much I am taking your kind words and advice in.

My world has become extremely small too. I’m dealing with all this with my beloved Dad. I simply don’t have the physical or emotional energy to invest outside of my kids, husband and parents. So friendships have fallen by the wayside.

if you have good friends op you could schedule in a regular coffee or walk just to talk it out

@Blueskies3 sorry to hear about your Dad. It’s tough isn’t it, and I just don’t think until you’re in it you don’t know what to expect.

Unfortunately for me I’ve learned that the good friends I thought I had, aren’t the friends who stick around during tough times. Such is life.

With work and other responsibilities it’s not so bad, and for now it is what it is. I go for solo coffee and enjoy the silence.

I hope things get better for you.

I feel like we are living in a different world. No biopsy results yet but the message is still saying will confirm what they know. Complex position and prognosis not good. I don't feel able to go into much detail.
Agree noone knows how this feels until in the thick of it. Our world changed just so quickly.
I am off work and thinking of resigning. I will hold off for moment as not in right mindset. Will likely get sickness extended. No way I can work at the moment.

OP- keep in touch please

Don’t make huge, life changing decisions when you are in this initial phase @EmeraldJeanie. Extend your sick leave, but you are not in any frame of mind to consider resignation.

This is the toughest part for now, waiting to see what you’re dealing with and what happens next. After this you’ll have some sort of a plan. It gives you a focus.

Absolutely extend your sick leave, you would potentially loose lots of benefits if you resign.

Definitely take time off. Do not resign. You need time to process all of this. Do you have sick left? Otherwise holiday pay or time unpaid? Do not resign. There will be other options for you. Probably ones you have thought of. But at the moment you just need time to get through the day

Thank you. Off next week and will get extention. Signed off with acute stress reaction at present. Need to be about for husband and my boys. Cry if anyone asks how I am so avoiding people. On way to hospital now. Thanks again for your support. Thinking of others going through this as well. Xx

so sorry youre all going through this. so awful.
please do not resign. there is no need. just keep sending your sick lines in promptly.

if you resign from a job you wont be able to get unemployment benefits in future for five months apparently. it’s a long time and you've got enough to worry about. just dont resign. sorry for taking up bandwidth to tell you this. your head must be all over the place. it’s just crucial that you do not resign. so sorry for what youre going through.

I feel such sympathy for you OP. Some great advice on this thread.