Thanks everyone

[mishamilo53]

I’ve been on here a few times in the last week as I come to grips with this potential diagnosis. Im so glad these forums are here because this period of pending tests for full diagnosis is the loneliest place I’ve ever resided . Im well supported by my husband but honestly im trying to support him too so having somewhere to talk openly about worries and concerns and receive the help and support of others who are also going through some dark times is nothing short of amazing and Im very very grateful . I do so wish that this waiting period was better supported somehow within the NHS , and didn’t rely solely on charitable organisations such as this . I was told my GP was my interim support but I’m still waiting for a phone call I booked at 8am this morning because they are so so busy , and I think it’s likely I will have to try her again tomorrow now …. I find myself worrying constantly about my symptoms worsening before I finally have my tests and hopefully treatment and I’m sure that once my cancer team is in place I’ll feel less alone but right now , just so so lonely and frightened with it all …. That being said the help and advice on here has been truly appreciated so thank you x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mishamilo53

It can feel quite isolating waiting on the tests and results, even though your loved ones are supporting you; every symptom, be it new or changing is understandably an anxiety and worry for you, although it may have nothing to do with the cancer, it is a common fear for many.

You may wish to contact the Maggie's centres, they are in most cancer care hospitals, you can pop in for a chat where they offer support and information. You can find your nearest one through this link: maggies.org/ or on 0300 123 1801

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[mishamilo53 in reply to RoyCastleHelpline]

thank you , yes I’ve made contact with Maggies ….and will visit later today …. X

[Cosmic54]

bless your heart, been there it’s such a dark place and deep you think you will never get out of it but you do in a way. I’m in the oh well can’t waste valuable energy worrying phase now it’s a bit like acceptance and living with it. My hubby was so sad with my diagnosis we would sit n talk then have a good cry together…I’ve called my lung tumour Beryl and when she plays up I shout at her !! Don’t ask me why I just do, you will get there not where you want to be but better than in that deep pit pet. Sending hugs 💋

[mishamilo53]

thank you for kind reply , I’m just floundering around in deep water , trying to find a lifebouy I guess, a bit of hope that I can grab onto to save me from drowning …. I’m hoping that in the next two weeks I’ll have the scary tests out of the way and we will be able to see the colour of this blumming cancers eyes and what we have to deal with to move forward with it …, thank you for your words , I hope you’re doing ok despite it all ? Elly x

[ginkgo in reply to mishamilo53]

Keep faith. I was told by two consultants that there was no treatment worth having and it sent me into despair and I almost gave up. I persisted (nagged) that I should be offered monitoring and life extending treatment even if I couldn't be 'cured'. It's a bit of a long story but some palliative radiotherapy worked a little miracle and shrunk my tumour drastically when it was only supposed to improve my breathing, but even though I had this vast improvement the respiratory consultant rejected my request for monitoring. I wanted to know if the tumour was still shrinking or had started growing again. The message I got was that monitoring was not offered, even though I asked for it, treatment was not available, and I should just go home and die (I am sure it wasn't intentional or meant that way, but that's how it made me feel). The oncology consultant sent me for a scan and said chemo was a possibility but had nothing good to say about it, but did list lots of bad things. I feel I was 'encouraged' to decline the treatment, but I did get a referral to a chemo consultant. The chemo consultant was different again. She didn't pull any punches and told me more about the seriousness of my condition than any of the other consultants but she gave me hope, telling me I could start chemo and while it doesn't work for everyone it can also work better than expected and also that I could be offered further treatment if the cancer spread to another part of my body, eg. bones. Nobody can give guarantees but hope keeps us going. If you receive bad news (and hopefully it won't be), don't let anyone tell you there is nothing to be done. Keep at 'em'.

[mishamilo53 in reply to ginkgo]

thank you for your reply . That’s some story I don’t know as I would’ve had your courage and tenacity x

[ginkgo in reply to mishamilo53]

We never know our own strengths until we get tested. I almost gave up but I did lots of research and got lots of help and advice from the people here. I wasn't getting the expected help from the NHS, so I pushed for it. I don't doubt the NHS needs to save money and reduce their workload, but it's my life, and I want it to continue as long as possible. I foolishly (in hindsight) worked eight years into my retirement, so I want to enjoy some of it before I go.

[mishamilo53 in reply to ginkgo]

well I hope I find the same strength that you did x

[sassassas in reply to mishamilo53]

Hi Elly

I think you have described so well the awful feeling of floundering in deep water. It will resonate with all of us I'm sure. As others have said, you'll find the strength to deal with it even if you can't see how at the moment - we all do somehow. It does get easier as the shock of the initial diagnosis fades and you get your treatment plan in place.

Thinking of you, Sarah xx

[mishamilo53 in reply to sassassas]

thanks Sarah , sure hope I find my big girl pants soon love 💕

[janeg4]

its really is a difficult journey your on ,with hopefully not many twists or turns . I found that you require to be your own advocate and that the numerous cancer charities do a great job offering support and good advice and information on all sorts of issues thst may or may not be useful to you .

I think most people come to terms with their diagnosis somewhere along this journey but tbh it does require pulling up of the big girl pants lol .

Best wishes

[mishamilo53 in reply to janeg4]

thanks for your kind reply , yes I’m definitely missing my big girl pants at the moment love , I’m hoping they will turn up soon …. I think I understand what you mean about being your own advocate, it’s hard to know what you want or need at this time sometimes …. I’m in a bit of denial I think too x

[JanetteR57]

When I was in that no man's land, there were no sites like this , very limited information and it was a scary place when I googled back at the end of 2010. Our area (indeed the West Midlands as a whole) has no Maggie's centres but there are a number of independent local cancer support centres that are around in some areas.

Roy Castle lung cancer foundation has a nurse led helpline for those affected by lung cancer and Macmillan has one too - not just for patients. Roy Castle foundation also offers online group sessions and in some centres in person groups... once you're through the tests most hospitals will also introduce you to a clinical nurse specialist who can often be the patient's main contact. I never knew they existed until about 3 years after my treatment when hearing others speak about them so I didn't get one of those but know they're an extremely valued resource - in some Trusts they're funded by Macmillan, so known as macmillan nurses but in others, funded by the Trust themselves. many people confuse Macmillan nurses with Marie Curie - the former treat and support cancer patients at any stage of their cancer experience whereas Marie curie are specialists in end of life so even if you're told, this is your Macmillan nurse (if that's the case) try not to read anything into their title. good luck. roycastle.org/about-lung-ca...

[mishamilo53]

honestly Janette I don’t know how you coped . I’ve located a Maggies centre at the Christie Manchester which is not too far away and handy if my treatment is at the Christie…Xx

[Nick_Ed]

I hope you get the results soon, and obviously that they are more positive than you have been expecting. That period of "scanxiety" is the worst, at least it was for me. The not knowing was by far the worst bit.

I am also in a kind of limbo now - I keep being told by the nurses that speed is crucial now, as my cancer is yet to spread. I know I need a lobectomy, and I was told it would be within two weeks - that was three weeks ago. My appointment with the surgeon isn't even until next week (it was originally another three and a half weeks away before they moved it), and I have been told surgery could be another four to five weeks after that. This is way outside the targets. Thankfully my work pays for Bupa coverage, so I have a call with a consultant tomorrow to see if they are able to bring things forward. I feel bad about even going down the private route, but I can't afford to wait, mentally at least.

[mishamilo53 in reply to Nick_Ed]

Im sorry to hear about your wait but planned surgery sounds very positive based on your diagnosis and I’m happy that you’re in that position … I would definitely not feel guilty about any private intervention . Good luck with the op , let us know how it goes and thanks for your reply x