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’m so sorry Tiddlywinks.
Is there a Maggie’s near you?
They were developed to help people in your situation.

https://www.maggies.org

xx

I’m so sorry to hear this OP. This might not be what you feel like doing but you could try writing to your MP to see if they can do anything.

I hope things improve for you very soon x

I'm so sorry for the situation OP. Making you wait this long is nothing short of inhumane.

I wish there was a magic wand we could wave.

I’m so sorry to hear this. I know I had an 8 week wait for diagnosis when it was becoming increasingly apparent that I had inflammatory breast cancer. It’s hell.

I agree with the advice not to google, although it is very hard.

The only ‘comfort’ I can offer is that even if you are stage 4, there are now many more treatments to keep things under control than there were years ago. I know quite a few stage 4 women who are doing very well.

Sending you lots of love and hugs, and I hope you don’t have to wait as long as they have said ❤️

Tiddlywinks, i can't believe how you have been treated by the nhs and the bloke you are married to. If you are in SW Scotland i am available to help in any way i can.

Thank you so much everyone for all your support.
I finally had a phone call this morning from a lung cancer oncologist.
i have small, malignant nodules in both lungs, because they are small the plan is to closely monitor with checkup scans at 3, 6, 9 months. If at any point they have grown then treatment will be discussed.
There is a further small area in my liver.
Unfortunately I have a large polyp/mass in my sigmoid colon , it showed very heavy take up of radioactive tracer dye. So that needs urgent investigation; a referral has been made to gastrointestinal consultant under the 2 week cancer pathway 🤷🏼‍♀️.
So here I go again….. You couldn’t make it up, could you!

That's a right bugger, but at least you finally got to speak to someone. I take it the implication is that they suspect the mass in the colon is the primary, and the rest are spread from that?

Sorry you are still going through it.

Are the nodules the stage 4 inoperable diagnosis you mentioned earlier? Why on earth would they leave those as a wait and see, you must be confused as heck!

When we were going through this, I found the cancer charities’ online chats to be a huge source of comfort. Unfortunately, you do have to watch out for the odd troll making things up which is utterly bizarre I know, but otherwise they were hugely helpful to me.

Gosh lots going on. The colonoscopy should come through fairly quickly though, I know in our local area a referral like yours would get an appointment in Endoscopy very quickly (I used to work in that department). And there’s a good chance that’s just a large polyp which they may even remove there and then.

What’s the plan for the Liver? Did he tell you that?

To be honest @GertieLawrence i’m beyond worrying any more, it’s been two years of getting nowhere followed by 10 weeks of sheer misery, stress and frustration. I really think that the hospital has no idea of the confusion and distress they cause. I know I,’m not the only one who’s had this awful experience with the hospital.
The wait and see is the final straw for me, I just can’t be bothered to question anything they say because clearly one hand doesn’t know what the other is doing.
@MissyB1 apparently’Urgent’ = 4-6 weeks….. I dread to think what non urgent means.
Re my liver 🤷🏼‍♀️, I watch and wait I assume.
I’m pretty certain that if I was younger they’d do something other than monitor.

Watch and wait is hard to accept and live with, I totally understand that. But sometimes it’s about weighing up the risks of intervention against the risk of watching, not always a straightforward decision! Dh has been on watch and wait for a brain lesion for 7 years now, it grows a couple of millimetres every year, which is upsetting and scary. And every year we have to fight for an appointment for his MRI scan, then fight to get the results, it’s exhausting 😩

But the surgical option would have meant certain serious disability, with no guarantee of the complete removal of the tumour. So we opted for watch and wait and try to just get on with our lives.

For the colonoscopy don’t be afraid to contact the endoscopy department yourself and pester about your appointment if you haven’t heard anything in two weeks time. It’s all time consuming and stressful though I know.

I just wanted to flag up something proactive you could do whilst waiting.
Given vitamin D levels affect both the outcome of immunotherapy and cancer recovery it would be worth doing a home test, there’s a good company that charges around £35 and they use NHS labs in Birmingham.

I suspect you may find you are pretty low. You could raise your levels quickly with a specialist vitamin D lamp or tablets but you would then need the co factors magnesium and vitamin K.

Your position right now is the hardest one to cope with.

I’m already on high dose VitD, magnesium and a good multivitamin. It will check whether it includes VitK. Thank you.

I’m just pondering things you could do to help stay calm and be kind to yourself, how do you feel about yoga? And meditations? I do both of those from you tube. Yoga with Adrienne is very good, she has lots of beginner/easy videos.

To be honest I have virtually no support , my ‘best’ friend has crossed the street to avoid saying hello, my DS is wonderful but 120 miles away ( he would drop everything to come down but I really wouldn’t ask unless I had to, he knows this). I do have two good friends but I can’t keep leaning on them.
I am trying to be kind to myself but I’m so weary..

I suspect people will actually want to lend support if you ask for it. It might just be a coffee out or a walk, but you shouldn’t feel bad about asking. Contact that friend who crossed the street and suggest a coffee.
Also do ask ds to come for a visit, or you go and have a weekend with him, it will do you good.