I've just been told my incurable lung cancer is progressing and in truth, I'm struggling to keep going at the moment. Constantly having negative thoughts because I can't see any positives.
Struggle: I've just been told my... - The Roy Castle Lu...
Struggle
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arthurpops
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13 Replies
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Good morning,Sorry to hear the disease is progressing, it's normal when first told to struggle and have nothing but negative thoughts.
It's a new day dig deep and bring back your fight!
Have you been offered treatment?
Hi, sending you good wishes. I can relate to what you say, I'm so flat knowing cancer is active again in my lungs and sternum. Such a contrast to this time last year when I felt strong, weighed 3 stone more and went into 6 months of chemo. Some days I struggle to eat, however when I move about, eat better then I do feel better. We can go through so much, but I say I'm still here. Keep going.
Have you asked about any clinical trials that you might be eligible for or a second opinion maybe from a specialist cancer hospital if you are not already at one?
Which area of the country do you live in?
RoyCastleHelplinePartnerAsk the NurseRoy Castle
Hi, I am sorry to hear that your lung cancer has progressed , this must understandably be a very difficult time for you. You have already ready made a positive step by reaching out on this forum and as I can see are already receiving some encouragement and support from this group . You should discuss with your oncologist if have any treatment options that may help to manage symptoms , now or in the future or may keep your disease at bay for now. As suggested you may be eligible for a clinical trial, your oncologist will be aware of the current clinical trials in your area and if you would meet the inclusion criteria. It may be possible with the right support for your symptoms that you can live alongside your disease and start to set goals of spending time with those who are closest to you , doing things that you are able to enjoy, which may bring some positivity back to you. It can be helpful to make an appointment with your GP to discuss what symptom management and support is available in your area.
You can contact our Ask the Nurse service on 0800 358 7200 or by email lungcancerhelp@roycastle.org, if you require any further information or support . You can access our booklets such as Living with lung cancer or Managing lung cancer symptoms by calling 0333 323 7200 (option2) and ordering a copy or by accessing an online copy on our website roycastle.org.
You are great
Have you been referred to a Hospice where you can use their counselling and try and find some energy to ask your consultant all the questions like trials, other options etc. Sending you all the best it's bloody hard and it's ok to have bad days xx
sometimes our minds can get caught in a real loop - and we can't see any way other than the one that's playing to us at that time. I don't know when you were diagnosed or what you know about the changes to lung cancer treatments and outcomes in recent years but the landscape on this bears no resemblance to when I was diagnosed in January 2011.
I became involved in lung cancer research, encouraged by a patient advocate (also a clinical nurse specialist in cancer) who'd been told she had less than 6 months to live with her then stage iv lung cancer - she was 48. She managed to get onto 2 clinical trials - one when the first trial treatment stopped working and lived 4 years 4 months - that was considered rare back then - she died in 2015. I met other patients and survivors who were many years out from their diagnosis - before many of the treatments now commonplace were created - she had an EGFR mutation so could have targeted therapy hence her trials. Yet those trial medications are now in 3rd generation and 4th generation in development. However also for many stage iv patients immunotherapy might be possible and combination therapy is common place. I know many patients who are stage iv yet are 11, 13, 15 years post diagnosis and others who thought they were at an earlier stage found later not - as there were cells left or found that meant they'd be stage iv when they believed themselves to be stage 2.
The truth is that none of us know how long we'll live and any predictions on the part of clinicians are guesses based on averages. If you're googling and looking at 5 year survival data - that doesn't mean that's the only number who survive as they're pooled data from every type including really poorly patients of all ages so quite meaningless and most are out of date and inaccurate.
Do you have a clinical nurse specialist who you could seek support from or a patient support group online or in person that meets near you? Roy Castle lung cancer foundation offers no end of support as an individual through their helpline, in online group settings with other patients/carers or awareness events to name but a few. Some find it really helpful to talk to others in similar situations.
do you have family or friends who you chat with for moral support? I always find that keeping myself busy when I'm feeling a bit despondent helps me - distraction is a useful technique to reduce focus on ourselves. Also help groups or support groups are a good way to contribute experiences to help others which in turn can help us. Others find having support networks where they don't discuss their condition/illness but focus on tasks - crafting, activity, gardening or whatever can boost their mental wellbeing.
Having just been to inter my mum's ashes at the crematorium and visiting the place where 2 of my sisters (40, 66) are and my niece (33) who all died prematurely and unexpectedly (not from cancer), yet my dad (now 94) who had cancer twice in his 50s and again in 2016 at the age of 86 and I, diagnosed with lung cancer in Jan 2011 are still here maybe gives me a different perspective on life. I found reading about cancer experiences helped inspire me at the time of diagnosis and treatment and since then have also found books like 'being mortal' by Atul Guwande, 'anti-cancer a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman all helped me reframe my earlier thoughts about cancer. hope you find a way to feel differently soon. My mantra on many days was borrowed from the George Harrison album ' all things must pass....' Good luck
Thank you - you’ve helped the Mum of a daughter (41) recently diagnosed with this awful disease
Super helpful, and inspiring - speaking as a stage 4 NSCLC myself.
I'm sorry to hear this arthurpops
I hope the comments and suggestions here have been helpful.
Best, Sarah x
how are you feeling today Arthurpops?
I was thinking back to my diagnosis/treatment - which unusually came the other way round. I'd had surgery to remove the large mass/half my lung before being diagnosed - told whatever it was, it had to be removed then sent away to find out. My surgery was 16/12 and my diagnosis 13/1/11 so to find it had been a 7cm malignant tumour (stage 2b) was a shock.
I'd gone to A&E mid October 2010 with strange symptoms for me and discharged with antibiotics/steroids despite the chest x-ray taken there showing a 'lesion' on my left lung. Readmitted by ambulance the next day and kept in for a week, misdiagnosed as 'uncontrolled asthma' but didn't respond to the asthma medication. I told them it was unlike anything I'd had -(childhood asthma and not had it since early 40s and had just had my 52nd birthday) so didn't think it was asthma. I swam distances regularly and knew my own body/fitness.
Invited for a CT scan a couple of weeks later (coughing meant I couldn't lie still in the scanner) then called the day before the appointment as the scanner had broken and they had to order parts. The hospital had 2 sites so I asked if I could have the scan at the other one. Told only the consultant could move the appointment and he was on a fortnight's holiday.... so delay after delay... then PET scan at another hospital then an appointment to see a surgeon at another hospital - pulled forward by a week after the PET results came in. He told me to drop my commitments, explained the surgery and told me it would be within the next 2 weeks at yet another hospital. I was busy working and kept up most of it, had will/power of attorney written at a solicitors, attended usual committees for voluntary group etc as the steroids had kept most symptoms at bay.
It was time of real uncertainty. As it was before Xmas, I decided to accept every invitation to events I received although usually I wouldn't - finding excuses/too busy. I decided to savour the experiences - a carol concert at the Town Hall, a xmas quiz, a xmas party, lunch with colleagues, Xmas market etc. I wrote cards and wrapped presents - being more generous unsure if I'd get another Xmas. It all felt very surreal and still does looking back.... I remember sitting at such events, wondering if this would be my last and trying to appreciate all I'd had in life but it didn't stop the fear/anxiety but knew I could do little about that.
Although I told my partner and his daughters, I didn't tell my own family as didn't have the emotional bandwidth to deal with their questions/emotions/reactions. If the doctors didn't have any answers, I certainly didn't so done to protect them and me from more stress.
My hospitalisation coincided with my late younger sister's birthday, the anniversary of her death was the date of some health appointment and my late mum who had dementia was always ill around those dates but couldn't remember why. My folks knew I'd been in hospital for 'uncontrolled asthma' but when the scan was moved, they stopped asking. At the point I knew I was going to have surgery, mum said, it's so good you're better now - you won't do that again to us will you? it scared us all to death as you're always so fit. I couldn't bring myself to tell her I was going for surgery.
Xmas is always quiet - just the 2 of us so as I recovered from treatment, I visited them. By then I was walking a little every day and gaining strength/fitness. I was determined to see it as a wake up call - a second chance at life.
After diagnosis when told the cancer had been removed, there still didn't seem any point telling them... I shared my experiences with a few friends who, as others have found, some were supportive and others didn't seem to know what to say/how to react. I found reading again helped - the book 'what can I do to help?' by Deborah Hutton, a lung cancer patient was full of ideas - practical and otherwise that resonated with me. There are some inspiring patient stories on the Roy Castle lung cancer foundation website under their various campaigns that may help too.... roycastle.org/about-lung-ca...
Really hope you're finding a way to get through the days/nights and know others are thinking of you... take care
proton radiation therapy?
Stress only has negative effects. Don't let this disease from Satan overcome you. There are holistic remedies out there that you can look into and I also have a friend who has a sister that eradicated hers by taking CBD. So don't give up just keep searching and if you believe in a higher power, place the bulk of your stress on your creator.
