Hard to believe

Hi, David

I cannot answer your question but hope someone else will very soon. I am 52 and was diagnosed with stage 4 cervical cancer in May and am about to embark on my first three-month "let's see what happens" period since doing chemo. I find that prospect frightening because it feels like waiting for something to go wrong and I understand that that is inevitable.

I, like you, am very well in my body, apart from the chemo side-effects, which I am now slowly getting over. It's obviously worse to have terrible symptoms as well as advanced cancer, but feeling fine makes the whole thing seem very surreal.

You say immunotherapy is not available in Guernsey. Would it be available elsewhere for your type / stage of cancer? This might be good to know from the psychological point of view at the very least. I'm in London and told it doesn't apply to me, whether available or not.

Best wishes to you and I shall keep an eye on this thread to see what you hear back. And as ever, if anxiety becomes problematic, I recommend calling Macmillan support. They are very knowledgeable and have always brought me calm and resolve, which is a pretty nice gift in tough circumstances.

Dear David, questions regarding disease progression and prognosis are the most difficult ones to get accurate answers to, and inevitably are the source of anxiety. All doctors can do is tell you what happened to similar people to you in the past, but they are not you and therefore it can only be a estimate. My approach is to appreciate and enjoy the good days as it would be a waste to not get the most out of life you can, ultimately none of us can control the future cancer or no cancer, I am receiving palliative treatment and am stable at the moment but am engaged with my local hospice, I describe it as having a foot in both camps, one in treatment and the other in palliative care. If you want more detailed information about your individual circumstances it’s probably time to ask your consultant to be more frank with you, as in my experience they take their lead from the patient when talking about prognosis ect I think they find it hard sometimes to give less than positive news. I’m so glad to hear you are enjoying your life and long may it continue, just keep moving forward until you come to an obstacle you can’t get round and then deal with it when it happens. I read an article in the sun today that summed it up quite well, it referred to us as the inbetweeners, it’s written by a cancer patient Deborah James. If you would like to read it it’s in their online version of the paper.

best wishes 

jane 

David F

I'm so sorry to hear your news, you must be very shocked.

After treatment for a reoccurrence of breast cancer I was diagnosed with a skull and brain tumour in March last year. The only symptom I had was a droopy eyelid which no one but me had even noticed. Further scans revealed widespread tumours throughout my spine, ribs, pelvis and leg.

Like you I felt well and was reasonably active so it was hard to make sense of such an advanced diagnosis. I imagined death by a thousand cuts, a long, slow and gradual decline.

I was started on oral chemo given to those with a life expectancy of less than 2 years. It flattened me initially but since the dose was halved I've been feeling well. Then an emergency admission to hospital with severe pneumonia made me realise there were other possibilities.

The cancer has progressed to my liver, again without symptoms and recent scans indicate progression to my lungs. The plan is to start IV chemo and when that stops working look for a clinical trial.

Overall there has been a decline in my health and exercise tolerance but I've adapted and my quality of life is as good as ever. I still look well. At one time you could spot cancer sufferers a mile away.

It's good to hear you feel ok and have a good appetite and no pain, that puts you in good stead to tolerate chemo again. 

Wishing you the very best of luck. I hope your treatment keeps you as well as possible for as long as possible.

hi David F very sorry to hear your news.  We seem to be in a similar boat.  I don’t really have any answers but I wanted to acknowledge your post and say as others have, timescale predictions are not an exact science. However that does not stop your brain trying to work a way out....and as you say at the moment you have an active life, it seems hard to believe the news.

i wonder if guersney has good palliative care? Here in Scotland we seem to and I do find it a help, it takes a 3 pronged approach with GP/palliative care team/hospice - this does not mean end of life care but does give you access to someone to talk to and also gives family support as well as the more traditional pain relief etc when you need it.  I did find it helpful to talk to someone about how I was feeling & you might find this useful. I also see a psychologist at Maggies as I find it hard to deal with my prognosis.

one helpful thing she said was it’s ok to feel grief/fear/despair at your prognosis.....but at the same time you can also find enjoyment/happiness/ and even joy at times.....and sometimes all at the same time, it is not an either or scenario & things are not black and white. So I tend to be going through life that way at the moment.....so today I had some gloomy moments about my treatment stopping but also sheer joy as my horse wandered along a sunny beach in the waves.  It’s not acceptance or peace but it is life.

anyway I am waffling, I hope your treatment goes well & you have a lovely dinner tonight xxxx

How kind of you to respond to my post.

I'm sorry that you are obviously going through your own rough journey, but I do agree with you, especially your last poignant paragraph. I will try to be positive and strong but won't be hard on myself for the occasional wobble. I also agree that I'm finding far more pleasure and appreciative of simple, but wonderful things in my life - which is a good feeling.

Thank you again and I wish you well.  

Dear David, Round the corner could be miles away! I have stage 4 ovarian caner and also go on the ovarian cancer line, there are people there who were given months to live and are still blogging and sending messages ten years on! Enjoy your time, we could be knocked down by a bus tomorrow! The only difference between us and others is that we have been told we are ill! You could get a second opinion, ask about trials or think of travelling to a different hospital if you could. The biggest thing for me is anxiety and I take prescribed medication for this. Like you I look fine and feel ok, this forum line is great at offering support and good cheer when you are having a "wobble" which we all have, this has given me time to appreciate friends and loved ones and do what I want to do. I don't know which is better this or an unexpected death where we didn't have this time. I often feel despair and fear but am grateful for the new friends I have made on this forum and the fantastic support I have received. Try not to worry as it does not change anything, hard I know, and focus on the good things in your life just now, improve your badminton and tell people you love them (if you do) Plan as normal as no-one can foretell the future.

I am sending you big hugs and love and hop you will keep posting and let us know how you are doing. Even in the middle of the night support and humour is here!

Love Pat x

Hi David, try reading this, she is a fantasticly talented oncologist and a really good writer. The link will lead to many different articles written by her too if you feel like reading them. It's not the easiest of reading, but I think it will answer your fundamental question at the post start, or at least give you some idea as to what may be ahead. I too feel exactly as you do, this morning I climbed a 3000 ft hill like a 21 yr old, but I have colon cancer and incurable prostate cancer. Read her work, accept her knowledge and I think it will help you eventually come to terms and think differently about your situation. All the best, Ronnie.  https://www.theguardian.com/commentisfree/2016/aug/17/how-do-people-die-from-cancer-google

Dear samronnie, thank you for for this article, I am personally at the acceptance stage from the phycological perspective so didn’t find it problematic to read . I have contact with a palliative care consultant at my local hospital so have had many conversations similar to the ones described in the article which I have found empowering in a strange way. If these subjects are discussed with patients by medical professionals who are properly trained they can assist you in making sure you have your wishes respected in regards to end of life care, which for me is extremely important. Keep climbing those hills and take time to appreciate the view when you reach the summit, and thank you so much for your contribution to this thread it was very enlightening.

best wishes

JANE

Hi David F

What a fascinating discussion your question sparked. There’s so much here that I agree with and the guardian article is an eye opener. 

I have been living with incurable cancer since March 2016. I was told early on that the cancer tends to grow and spread quite slowly, usually causing few symptoms. But at some point it will accelerate and then quite rapidly can overcome the body causing the type of problems described in the guardian article such as liver or kidney failure. So while no treatment would cure the cancer, the aim of any treatment was to damp that growth down and stop it getting to the run away train stage. 

And that’s what’s happened. I’ve had periods of feeling really quite well and it would have been impossible to tell from looking at me that I have cancer. I’ve also had periods when the side effects of treatment have been very debilitating. Overall I’ve experienced a slow decline and felt my horizons drawing in. Each time I’ve adjusted and found ways around the limits so that I can carry on doing the things I enjoy. 

For example, I love cycling. This spring I accepted that I would not get the strength back to cycle a regular bike so I bought an electric bike. I had a lovely summer whizzing about on my ebike. 

Another of the interesting discussions I’ve had with oncologists concerned the speed of decline. I had asked the “how long have I got question” of the young clinical research fellow. Hard to say, he told me. In general, he said, it was helpful to look at how quickly a person was declining. If you’re getting sicker or weaker year by year, then you’re talking years of life left. If it’s month by month, then you’ve likely months left. If it’s week by week, then weeks. 

Over the autumn I’ve felt I’m declining month by month. Even e-biking is beyond me now and I’ve started using a stick to walk with. I have given up doing the things I don’t enjoy to save my energy for the things I do. I use internet shopping to do the grocery shop each week. I have a cleaner and a gardener mows my lawn. But I still do the bits of the gardening I enjoy and I can just about keep up with our new puppy (although I think that won’t last long).

Most recently I’ve moved into a new phase where we’ve started treating the cancer symptoms. I’ve had the “time to put your affairs in order” conversation as I now have a growth in or near one of the major blood vessels in my thorax. My clinicians’ best guess from looking at the CT scans is that it’s a tumour surrounded by a blood clot. There is a risk of the blood clot breaking up with potentially catastrophic consequences so I’m now on blood thinning treatment to try to dissolve the clot. Equally (or maybe more likely, I just don’t know), there is a chance it won’t break up and my oncologist is hopeful that I’ll achieve my goal of seeing my youngest daughter through her GCSEs next summer.

The most important thing for me is to keep enjoying life. To keep learning and trying new things, to find ways to enjoy the things I’ve always enjoyed. I tell my friends I love them. I make sure I do things now, not some day. I have the occasional wobble and I allow myself to go through the necessary emotions but I try not to get stuck in them. I make sure there’s always something to look forward to. 

We each have our own experiences and there is no way to know if your experience will mirror mine in any way. But I do hope it’s helpful to read what I’ve experienced as you think about what lies in store for you 

xx

Dear Daloni, thank you for post, it was most illuminating. I’m glad you had a lovely summer whizzing about on your e bike, I think your approach to the progression in your illness is similar to mine. I have learnt to be flexible and concentrate my energies on things that give me joy and not insist on doing everything I did before. My walker has given me a new found freedom, my only regret is I didn’t get one earlier as I was restricting myself from going out because of fatigue. I think the guardian article will be a valuable resource for forum members who join in the future as it’s a topic that rarely gets discussed.

best wishes 

JANE