Bad news today

[badnews943]

Had a nightmare today. Received news that I have type 3 breast cancer which may be in my lungs. I'm having a lung biopsy next week but the Dr seemed pretty certain.

I'm not sure what to think. Any advice or support?

@Enigma53

Respitory are going to try and squeeze me in next week. I'm seeing my Dr tomorrow as well so we can discuss it further.

I believe the nurse specialist is assigned at the oncology appointment so that will be good. Finally a point of contact.

I've found Breast Cancer Now to be really good. Very knowledgeable and kind.

There's a Maggies at my hospital but unfortunately I have breathing difficulties and have no energy to visit them. I have spoken to an adviser on the phone though. She said that my hospital offers complimentary therapy on the ward, so I'll look into it. Talking therapy wise, I'll see what the GP proscriber says as they should know what's available.

Ah yes that’s right, you will be assigned a nurse specialist at your oncology appointment. Is that on 4th August?

It sounds like there are a few tools in the box, which you can tap into. As time goes by, you will know what’s useful to
you and what isn’t. Hopefully once your respiratory issues are under control, you will be able to access more of the services.

I found the complimentary therapies very relaxing and something to look forward to each week.

@Enigma53 Yes, complimentary therapy is a great idea. I hope I can get some treatment for my breathlessness and can actually do stuff again.

I have an appointment Thursday for lung function diagnostics, so it looks like respiratory haven't washed their hands off me yet and are investigating.

I spoke to the social proscriber and my expectations were somewhat high. She didn't seem very well informed which is a shame.

Another load of steps forward OP. You are doing fantastically well. I know exactly how frustrating and exhausting dealing with nhs bureaucracy can be.It has often reduced me to tears so I am a little bit in awe.

I do hope you get your resp issues under control. I was given a combined inhaler which didn't work and was very fiddly. I am now on another one which works much faster is easier to administer and in extremis I can have an extra six puffs a day on top of the 2x2 daily. Of course this is me not you but thought the extra info may be useful if they think an inhaler will help you.

Excellent news re: Thursdays appointment OP.

Definitely a shame about the social prescribers lack of knowledge. That’s their job isn’t it, to know what services are available locally and either signpost or help guide you to the right ones? Maybe sit on that one for now and investigate further when the time comes?

First stop, is Thursdays appointment with the respiratory team.

I found my social prescriber useless too. Just another signposting service with not much clue.

It's been a nightmare. I have no idea what I'm doing or who's doing what, so I completely understand your frustration. When you're unwell and frightened, dealing with this is a nightmare.

I'm sorry about your breathing difficulties. I'm glad they've found something that helps. I did try the blue inhaler as I said but it didn't really do anything, perhaps it wasn't strong enough. Let's see what they suggest.

It's certainly a step forward, which is good news. I have a follow up on 14 August but they're going to try and bring it forward.

She was terrible. Asked me what I was looking for (support and help) and said she'd email a Mind link.

@badnews943 I had similar. She couldn't even coherently explain what her role was or how she could help.

I agree with all of this so will back off as well

@Lifestooshort71 @Thatsthesizeofawatermelon

Speaking from my own experience, having recently been diagnosed with a life limiting condition as well as other serious and debilitating issues, I feel only sympathy with the OP.

It's very hard if you live alone with limited external support navigating all this. Some days I feel such loneliness and despair it's not surprising it comes out in irritability, cynicism, anger and frustration. Sometimes someone saying or doing the 'wrong' thing can really set me back, even though I know it was well meant.

Example : I have sudden severe hearing loss. It's been investigated and likely to be permanent. A friend sent a link to a newspaper article yesterday about a new treatment which only works if undertaken within the first 72 hours. Given this happened months ago, as he is aware, this wasn't terribly helpful, and it coincided with me breaking my new hearing aids so I just felt completely crushed.

I know many if not all have been or are still going through the mill but we can't all be saintly all the time.

Well said @Words . I would hope that people here would be more understanding and tolerant of when well meant comments aren't always well received, given what op is going through. I think she is awesome.

@badnews943 I'm glad you got the confusion with respiratory dept sorted and I hope they can help you soon. Breathing issues are horrendous xx

Rooting for you all the way xx

That’s not good, given she is in a paid role?

I know Enigma. The call came out of the blue ( this was many months ago before things got really bad) and she kept asking what help I needed, but couldn't explain to me what sort of things they could help with. It was all a bit bizarre.

Sounds like this social prescriber didn’t really know their own role very well. A bit of a ‘wishy washy job’? Mind you, when I rang ACAS a while ago re: long term sickness, they were clearly reading off some kind of script. Then they sent me a link to their own web site, which I could have found myself and to top
it all off, proceeded to bombard me with customer satisfaction surveys!

Thanks everyone, I appreciate the support.

@Words
Part of the process seems to be filtering the wheat from the chaff when it comes to getting support. I've found some helplines really informative such as Breast Cancer Now and some not so good. Luckily my new GP seems proactive which I really needed.

PALS seem effective when chasing things up (I don't know if they are where you are) which has been helpful. The Macmillan Centre have also been good. I think the worst so far has been the social proscriber.

@Enigma53 The proscriber was exactly as described. Asked me what help I needed, didn't know who could provide that help and said she'd send me a link for Mind. I didn't ask for therapy but practical help.

So glad the breast cancer charity is helpful - a real godsend I should imagine.
It had not occurred to me to contact PALS. Thanks for the tip !
Wishing all as restful a night as possible.

I thought PALS only dealt with complaints but they liaise on most things so it might be worth finding out the number at your hospital and contacting them. Have you found any charities related to your conditions helpful? It's great when you can ask professionals questions.

Got a text saying my lung function test has been moved to the 14th! They seem to be trying to finish me off with stress. I'm now trying to contact the clinic and have phoned PALS to try and get it moved back or brought forward. I'm wondering if it will delay treatment.

Hi

What a palaver re the lung function test. Are you still seeing oncologist on 4 August?

Yes the British Liver Trust is the helpline I will contact when feeling slightly more chipper.

Yes, the oncology appointment is still going ahead. I hope you feel more chipper soon.

I saw my Dr yesterday and she was very reassuring which is what I needed. She told me to stop chasing appointments and to relax until my appointment on the 4th. So that's what I'm going to do. I've booked a cleaner which is a relief.

Glad to hear your GP was helpful @badnews943 Try and sit tight now until the 4th ( easier said than done I know).

You’ve just reminded me, I need to look for a cleaner too. Trying to decide wherever I want someone once a week, or once a month for a deep clean.

That GP sounds like a strong ally which is exactly who you need on your side! I too need a cleaner but am procrastinating as my place is really bad and feel ashamed.

I need to just trust the process, which is what she said. It feels like a burden has lifted for some reason.

I'd get someone to do both, if finances allow.