Bum and buggeration :(

[Tiddlywinks63]

I’m really not sure why I’m posting on here but I think I am probably going to be told I have lung cancer.
I have had heart failure for nearly 7 years and over the last couple of years I have had episodes of breathlessness but the latest one hasn’t cleared up. I have seem my gp, and had telephone cardiologist appointments where I have said about the shortness of breath but every time been told it’s because of the heart failure.
Two weeks ago I was sent to Ambulatory care, had bloods and a chest X-ray and there clearly was something on the X-ray.
The consultant said it could be odd blood vessels but put me on the 2 week pathway for a CT scan that I had earlier today.
I know I should not google but looking up images of what I clearly saw on my X-ray it’s pretty much looks like lung cancer.
My shortness of breath is getting worse but I’ve been told I won’t get a result from today’s CT scan for 4-6 weeks 🫣
A handhold would be wonderful x

I do have some support from friends, none from my husband who doesn’t ‘do illness’ or housework etc ( he’s not said a single word about it 😵‍💫), the DCs are miles away.
I’m so stressed I feel sick all the time.
I do have a cleaner, dog walker and gardener lined up.
I never thought I’d end up this way, I guess nobody does x

I was told 99% likely it’s cancer at my LIFT appointment.

Oh I see I am sorry . Even worse that the system is so slow then Do you think you could get your DH to sit and listen to you. You need support. How did he deal with your heart failure diagnosis?

Your DH needs to come to your appointments and have the specialist teams explain everything to both of you.

My mum had inoperable* lung cancer but was told it's a 'live with' rather than 'die from' situation.

Inoperable due to her lung capacity after smoking for 50 years and COPD - she didn't have enough decent tissue so was given a long term chemo regime to control the spread.

He shrugged his shoulders when the consultant asked if he had any questions, never said a single word about it ever so I’m not expecting anything now.
Ds will come to the oncology appointment if he can, otherwise I’ll go alone as I have before.

So sorry you're going through this. My lovely mum has heart failure too. Not long after her heart failure diagnosis, she was diagnosed with lung cancer. Had a lobectomy. Lung cancer found again in her other lung 2 years later. Had another lung surgery. Also had chemotherapy 6 rounds I think. She came through it all really well considering . Had to have a few blood transfusions but her heart did very well. Good luck!

Thank you @Rosieposy89 , it sounds like your lovely mum is doing well.
Ironically my cardiologist has ignored my telling him I’m breathless for the last few reviews and at my latest on yesterday ( by phone) he was pretty dismissive and said he no longer needed to see me! It’s good that my heart is stable 🙏
Still no word from the hospital…..
I’ve now been told that the 2 week Cancer pathway is from first hospital investigation but that doesn’t make any difference to the fact that I’m nearly 9 weeks in….

9 weeks after initial urgent referral and still no closer to getting anywhere.
I have given up. Cancelled my holiday. It’s like limbo.
Apparently PETCT 2 weeks ago hasn’t even got to an MDT yet. The communication is awful.

How frustrating! Do you have a point of contact like a specialist nurse? You need to keep pestering, it’s not right but often it makes a difference.

Nope @MissyB1 , I won’t get a named contact until I start whatever treatment they eventually decide.
I’m beginning to lose confidence in the whole system, the person I last spoke to was so bloody patronising I couldn’t believe it. You’re expected to wait quietly until you get seen, no timescale of course.
I can’t imagine I’m going to get any immunotherapy/chemo for at least another 8 weeks if I have a 3 week wait after it goes to the MDT to get biopsies, then another 3 weeks wait to see the oncologist.
In the meantime I’m stage 4 🤷🏼‍♀️

So it’s supposed to be 62 days max to treatment (from referral) are you going to be over that?

I’m so sorry. You sound like you’ve not had much support from the medical community or your crappy husband. I can’t imagine how you are feeling. My best friend’s husband was just as hopeless when she was diagnosed. I never forgave him.🤬

Yep, 65 days today and still weeks away.
It’s a total farce 🤷🏼‍♀️

I have a permanent headache, feeling sick and my hair’s beginning to fall out from the stress. I honestly can’t understand how you can be told you’re stage 4, incurable, inoperable then sweet fa is done for weeks.
It’s utterly depressing and devastating.

No wise words just lots of love & understanding 🌷💕 & best wishes of course.

I'd have told your 'D'H to fuck off by now. Id expect more from the postman! It's easier being alive, than that xx

So sorry you’re going through this.

When did they confirm you are stage 4?

31 March at the Lung Cancer clinic.

OP have you contacted PALS for some help with advocating for you?

Patient Advisory and Liason Services, you should be able to phone or email your local one. The hospital should also have contact details for them displayed; posters, brochures that sort of thing.

I just wanted to say how sorry I am. The waiting is the hardest part, once you have a plan, it is tolerable. I'm having radiotherapy at the moment so I know how difficult the wait is. Sending love. X

I agree, I think it’s worth highlighting all the delays to PALS.

Was it definitely confirmed? I can see you kind of presumed it from the appointment but wasn’t sure it has been clinically confirmed.

Sorry if that sounds callous.

Reason for asking - my DH was told he had secondary with primary not located, but after a biopsy many weeks later we had the massively fortunate news that it wasn’t cancerous at all.

Just wanting to offer a touch of hope. The waiting is hellish I know.

I have it in writing from the LIFT Clinic consultant. Stage 4, incurable and inoperable.
I have been talking to PALS, the lady was very sympathetic but after making enquiries was told that there was a backlog and to be patient.
I eventually had a call from the MacMillan nurse based in the hospital who pretty much said the same thing.
I have virtually given up trying to get anywhere, my hair’s falling out, I look a total mess, I am breathless from the minute I get out of bed now. It’s frustrating and frightening. To cap it all my bloods have shown up problems with my clotting times, they’re excessively long 🤷🏼‍♀️

I’m really sorry you have had this diagnosis, OP. And it sounds like you have been badly let down by your husband, NHS waiting lists and some of the clinicians involved in your care. You deserve a lot better. I hope you will continue to post on Mumsnet for advice and support.

So sorry @Tiddlywinks63 , I know we’re all strangers but I really am thinking of you and hoping for the very best outcome for you.

Can you complain to PALS and try get some pressure on? Unsure of how it all works but seems so unfair to just keep you waiting