Lung cancer

[notapizzaeater]

I'm in shock. My hubby was hospitalised with diverticulitis a couple of weeks ago. Whilst in they did a ct and x Ray.

He got discharged and the doctor mentioned in passing that his lymph nodes were a bit enlarged but didn't seem too worried.

Within a couple of days we started getting appointments through for tests, PET/CT, another CT, ultrasound. Then yesterday we had a phone call asking us to see a specialist today.

We've been told that he's probably got lung cancer which has spread to his lymph nodes. He's having a biopsy tomorrow but she was already talking about palliative only.

It's not bloody fair ! He's never smoked

We have an autistic 16 year old about to start his GCSEs in 3 weeks

Oh god I am so sorry

I'm sorry to read this. So awful

I’m so sorry to hear this. I’m Rachel and I work for Roy Castle Lung Cancer Foundation, the only UK’s charity dedicated to supporting everyone affect by lung cancer. We have lots of literature about living with lung cancer as well as treatment options. There has been a lot of advances in treatment for lung cancer, inc late stage lung cancer. We also have a free Ask the Nurse service if you have any questions or concerns. It’s freephone 0800 358 7200 or [email protected]. You can also get lots of information on our website www.roycastle.org. I appreciate you are in shock about it all but if anything, we are here to help. Take care, Rachel

Oh I am sorry! What a terrible shock for you all. I'm guessing you will wait for a diagnosis/prognosis with more information before you have to tell your son.

My heart goes out to you.

Op- I posted on the other thread you commented on today. I suggested you set up your own thread and then this popped up as I was scrolling through “active “ section- sorry I didn’t notice this before, I do hope you don’t think I was being unkind as I hadn’t realised you’d already started a thread.

I’m so so sorry for your circumstances. It is bitterly unfair and truly shite. Are you going to tell your dc or wait until exams have started/ over? Would that benefit your dc to be shielded for a short time? Sorry if this is a stupid idea I’m only going from my own experience 30 years ago when exams seemed to be squished in a fortnight.

The lady from Roy castle seems to have some helpful things. The British lung foundation and cancer research may help too. I’ve found the lung foundation very personable in the past.

Sending 💐

I'm so sorry. My dh was diagnosed with stage 4 lung cancer after being hospitalised with pneumonia, so I understand what a huge shock it is. In his case, he was able to have the tumour removed along with his lung which bought him an extra year (before it spread to his brain). During that year we were able to live relatively normally apart from hospital appointments, and he had to give up work. DS was 17 when DH was diagnosed and became his full time carer last year while I carried on working. DH did smoke and also used to work in a dirty environment so it was a combination of those factors that caused it. It must be really difficult for you given your DH doesn't smoke, because you don't expect lung cancer.

There is a lot of support out there for lung cancer patients and their families. We went to a support group at the hospital and met people who had been diagnosed 10-15 years earlier and told their cancer was terminal, but had been able to live with it for an extended period. It isn't necessarily an instant death sentence these days.

Oh OP that is truly terrible news. My DH was diagnosed with incurable (prostate) cancer last year. It had spread to one lymph node & multiple bones. As he was relatively symptom free it was also such a shock.

I want to tell you how the treatments can extend life even in incurable cancer by some years. But I still rally & rage against that. Because of course we don’t want ‘some years’. We want all of the years he should of had without thus shitty disease.

Eventually the shock wears off & you genuinely do find a new way of living. It’s not what we want, it’s not fair & it’s so very sad but life just carries on.

I have 3 boys including a 15 year old with SN so understand your worries.

I’m hoping that the news isn’t as bad as you fear but appreciate what they’ve prepared for you to hear. Sending very best wishes .

I'm sorry lass. Other people have wise words, all I can offer is a handhold.

Oh me too. So v sorry. Life is so unfair at times xxx

What a horrible shock for you both.
Bastard bloody cancer.
Sending you love and strength.

Been to the hospital today and had 3 biopsies from one of his lymph nodes - just waiting now till next week.

Ive got a killer headache from the crying.

@notapizzaeater - I'm hoping that they're wrong - good luck and be strong for your DH ❤️💜 it must be so awful for you all 😔

It’s horrible OP & we found the waiting to be torturous. How is your DH coping? If you’re struggling please see your GP. I had sleeping tablets prescribed as I just didn’t sleep at all & then was even more tearful in the day & unable to manage my emotions.
I really hope you hear quickly

Sending thoughts your way op x

We're 2 years into our own lung cancer saga. Local hospital care was not going to offer us any real options - OH had a long smoking history and the lung damage to go with it. They were talking palliative care too. Our son was just 2. We couldnt aceptpalliative carewas our only option. We're both scientists and alternative medicine practitioners so approached it with both disiplines. If there is one thing we learnt, it is that second opinions from bigger specialist centres are vital. We ended up being able to get surgery for the lung tumour and lymph nodes - Stage 2B, 4/18 lymph nodes. We've done a lot of treatments alongside - nutrition, ozone, CBD, metabolic/ mitochondrial therapies as he was not suitable for chemo and raidiation due to the lung damage and was at high risk of recurrence. So far so good. We're 2 years clear. Any recurrence we would look at Chemothermia in Turkey, or similar approaches - their stage 4 median survival rate is 44 months - normal is 8-12 months. I guess what I am really trying to say is that what looks hopeless to start with can change or improve with the right information. It was easier once we knew exactly what was going on. The finding out period was really really tough as we didn't know what we were up against. I hope this helps, and send a big hug xx

It does, I've been googling like mad too. We have private medical cover which has unlimited cover/treatment for cancer so as soon as we know I will be kicking that in. Luckily DH work are really good, he gets full pay for 2 years so that's not a worry, though he's been working this week as a distraction.

So sorry OP. How awful

Well it's grade 3/4 lung cancer. No surgical options. Samples sent off to Birmingham to see if immunology an option.

Oh OP I’m so, so sorry. It’s horrendous news to hear. You probably feel as though the rug has been pulled from underneath you. How has your DH coped with the news? Do look after you too. Sending you very best wishes.

@notapizzaeater so sorry, how bloody awful

What awful news OP - I am so sorry. Thoughts are with you all.

He's getting angry, the hospital have missed it in x rays since June

@notapizzaeater that’s horrendous. My DH’s was missed from a blood test two years earlier. I won’t say too much as we are taking legal proceedings but the emotional pain of knowing the outcome would have been very different for DH if that had not happened is immense. He is stage 4 & so far all the evidence is looking like he would have been cured.

Take time to digest everything & then my advice would be to seek support from any relevant agencies. Macmillan have helped us so much with advice regarding what to tell the children etc.

As DS1 had exams last year when DH was undergoing chemotherapy I made his school aware & they said they were able to let the exam board know for special consideration. In the event DS dealt with it all really well.

I feel for you so much OP as I know how terribly scary & lonely this can be. X

@Diangled - I'm currently swinging towards taking legal action .... I'm so angry, they've stolen our future

How are you today OP?