Worrying times

[Janehead]

Hi all, new here so thought I should set the ball rolling on this journey many of us are on. I am yet to receive a formal diagnosis but have been told I have a mass in my right lung, spread to the chest lymph nodes and suspicious lesion on the liver. I had an ebus on Friday so am now awaiting further news. Like many others, this has come from nowhere. Doc diagnosed reflux at Christmas and until the last 7 weeks, there were no real other symptoms. When a lesion was found after a CT scan for a possible clot, I felt like the bottom had fallen out of my world. Those first few weeks were so tough, so many tears. Slowly I think with the help of others I am beginning to accept things. I feel I must focus on what can be done rather than what can't be done! Sounds easy eh? I now have aches and pains and sore ribs from coughing and fatigue. I guess some of this is physical and some mental/emotional. But I do find it exhausting so any tips would be great! I take paracetamol daily and morphine at night but dont sleep well. So that's where I am...waiting some more for the diagnosis and treatment plan. Keeping everything crossed for all of us waiting for news xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Janehead

Welcome to the forum, all be it under the worry time of awaiting a clear diagnosis.

If it is lung cancer, treatments have improved greatly over the past 10 years with new drugs of immunotherapies and targeted therapies. These drugs require specific cell mutations/proteins that are found at biopsy.

This link will take you to our booklet on ' managing a lung cancer diagnosis' not that we are confirming you have cancer, but this booklet details the investigations, types of lung cancer, staging and treatment options: roycastle.org/app/uploads/2...

We have many information booklets from the different treatments to living with lung cancer which can all be found on this link: roycastle.org/help-and-supp...

I hope your morphine and paracetamol is helping the pains you have at present. Hope you hear from others in the forum, where you will find support and encouragement.

If you are looking anything up on the internet, we would advise that you keep to the following websites that provide accurate and up to date information:

roycastle.org

macmillan.org.uk

cancerresearchuk.org

Please let us know how your results go and hope you hear soon, the waiting is quite a torment for many people. If it is cancer, we provide both information and support services which you can register through this link: roycastle.org/help-and-supp...

If you would like to discuss anything 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

All the very best

The Roy Castle support team

[Danni54]

Hi Jane. I'm so sorry about your news . It seems unreal on one level don't you think and I always say that my world tilted. It's good that you have posted here because people are wonderful and so supportive and it's good to talk to people who understand what you are going through. Please let us know how you get on. Everybody here will help you through and everything is crossed for you and yours and the Helpline people are very special .Love and hugs,

Danni xx

[Janehead in reply to Danni54]

Danni, I see what you mean about everyone being supportive..what a lovely positive experience. It certainly helps me to unscramble my brain by expressing how I feel...its like thinking out loud! I'm normally the one who copes and sorts out everybody else so I guess I have to get used to the tables being turned a bit! Thank you for taking the time to reply, it means alot xxx

[Cockailschemocancer]

Hi Jane / it will be such a worry until there is a plan and the plan is starting. I would advise speaking to either royal castle or your local hospice (they are quality of care not end of life care) when I was diagnosed the hospice provided me with a counsellor and recommended some medication to help with the anxiety and sleep. This is the time you need it. I really hope you have your plan soon so you can get on with getting rid of the cancer x

[Janehead in reply to Cockailschemocancer]

Hi, thanks for your response and your idea about the Hospice. I guess I have been a little reluctant as I lost my best friend to cancer a few years back and that journey still haunts me a little. But I know I have to remember that her story doesn't have to be my story...its just another obstacle that I need to get over...and I will! Thank you for your kind words xxx

[Cockailschemocancer in reply to Janehead]

Hospice and palliative care are both horrid words in my view, but they actually mean quality of life lots of people use them who are not end of life (me included) but there is such a stigma, maybe see your local one, see the services they have to offer that might help you, they helped me lots initially, but I don't see or speak to them now, but I know they are there if I ever need them again, best of luck xx

[JanetteR57]

Welcome to the group - as others have said, this uncertain time is one of the hardest to deal with - all that waiting and not knowing and our imaginations can go to some dark places.... I remember it well having turned up in A&E in the October when a chest x-ray revealed a 'lesion' on my left lung. A couple of months later I had surgery to remove half my left lung and the mass and in the January told it had been a 7cm tumour (adenocarcinoma). That was in January 2011 but I'd approached that Xmas as if it would be my last as without a biopsy, when the surgeon it had the potential to be lung cancer, I'd foolishly googled and scared myself. Such groups as this and others did not exist online and information was very scant. Having been involved with lung cancer research since late 2013 all I can say is that the treatment landscape for many cancers have changed beyond recognition but most of all in lung cancer and many now have several treatment options if it does turn out to be that.

Roy Castle lung cancer foundation offers no end of support - plain English information on all sorts of aspects of treatments, diagnostics, living with it, travelling, working, nutrition, keeping active and other aspects - much of which at the moment will be a lot to take in.

Until you have an actual diagnosis and treatment plan I'd suggest distracting yourself doing nice things if you can - read a book you've always meant to read, visit somewhere local (whatever floats your boat - football match, stately home, art gallery, restaurant, theatre, cinema) to occupy your mind and then have nice thoughts to recollect when further down the diagnosis/treatment road.

My time was filled with work, writing xmas cards, buying/wrapping xmas presents and accepting every invitation to a xmas function that I could! Somehow it made the time pass more quickly and I could catch up with people - I've used the same distraction technique to keep busy, and keep my mind active too.

hope you find a coping mechanism to suit you whilst you wait for the next stage. your approach of focusing on what can be done is good - always better to wait and deal with the 'what is' rather than imagine or catastrophise the 'what if'.

good luck.

[Janehead in reply to JanetteR57]

Thanks Janette, what a lovely upbeat yet honest post! I am feeling quite tired, breathless and uncomfortable but am sure that some of that is emotional exhaustion rather than physical. But I push myself to go out for a walk each day and to meet a friend each day. Even if I just slump when I get home. My son is back from Uni for a while so the washing will keep me busy. I am enjoying the sunshine and have jigsaws, colouring, sudoku and of course the family WhatsApp group with wordle! Family and friends have been amazing as have new friends I have made along the start of this new journey I am embarking on. I know I will get there...just don't like feeling such a wimp at the moment. Thank you for your words of encouragement xxx

[Danni54 in reply to JanetteR57]

Hi Janette. I so agree with everything you have said here and I want to thank you so much for all the help, support and advice that you have given to me. I think that you are inspirational! Don't blush because it's true! After the sickness last night, I am feeling so ill today my throat hurts, my stomach hurts, my shoulder hurts and I am lying in bed feeling stupidly scared and crying thinking that if the cancer is back I really don't want to go through this again! I have never, ever thought like that so I read your message to Jane and thought....get a grip ! My friend went to the Chemist and picked up my antibiotics so I start them this evening. They make me feel awful but my husband will have to put up with the grumphing and groaning for a week ! I hope they work this time because this has been the worst bout yet and I can see that my lung's are infected again. I asked the Surgery Receptionist to let the Dr. know but will now have to wait to see whether the antibiotics work. It's so horrible because I am just falling asleep and then my throat burns and a second later I'm coughing and coughing and being sick for over an hour and a half and I have to sit up for about 4 hour's. Last night was the worse yet and I will admit that it scared me !

Thank you for all that you do and for being there for all of us. Please let us know how you are feeling and how you are getting on. Am off to try to snooze for a while. Please take care and 'speak ' to you soon.

Very best wishes,

Danni xx

[JanetteR57]

Take it a day at a time (or at times it felt like taking the next few minutes at a time) - I use the phrase (borrowed from the George Harrison album) of 'all things must pass' that helped me get through some tough times... We're more resilient than we imagine and when my surgeon answered in response to my question 'is there anything I should do to my diet or lifestyle that would make a difference?' that 'a positive attitude helps', I found that encouraging. There are some amazing survivorship stories. I have also known some who sadly gave up so as a result, think a negative approach can be harmful. Whilst we can't always be Pollyanna, not getting sucked into a cycle of negativity is important.

take care. good luck.

[dunnellon]

Hello Janehead. When I was diagnosed with lung cancer, I cried many times. When I shared my diagnosis with my cardiologist, she said, "Choose your path of treatment and don't look back. Attitude is half the battle and remember there is a higher power." I hope you are able to get help from your doctors to ease your tension and get some proper rest. Sending good vibes your way and wishing you the best!

[Janehead in reply to dunnellon]

Thank you. Wise words indeed. I am trying to be that person but when that cough just rattles away and rips through your back it's difficult to stay on track. I'm still getting to grips with finding what works for me and hope that some of this irritation is still as a result of the ebus and will settle. GP has given me an emergency antibiotic just in case over the weekend as I have a bit of a crackle when I breathe in. Fingers crossed all calms down. Thanks for your good wishes. I feel like I have made many friends over the last 2 days🥰