Living with a cancer that won’t die
Sounds dramatic probably more so than an incurable cancer! So many blood cancers come under this description, you can’t see them, you can’t cut them out they are just there. In many cases people comment how well the sufferer looks unaware of the inner turmoil. For some people it means a very lengthy period taking some kind of (usually) chemo drug. For others it can mean a period of remission which can vary from months to years when no treatment is being administered. For the lucky ones this can mean a period of “normal” living although this may well be a new” normal” where you can do what you need to do and more importantly what you want to do albeit at a level of efficiency which may not match your earlier life. The lucky few go back to running marathons and climbing mountains!
Of course the period of remission is tinged by the periodic reviews with your consultant as you wait to learn if the disease has returned. You and your carer know that the return of the disease is inevitable but the tension of the reviews, waiting for the results, breathing a sigh of relief when the results are good is a difficult process. Eventually the call comes from your consultant “ we need to discuss the latest results”. That sparks a whole train of emotional responses but particularly within the carer who has, perhaps, got used to the period of remission and tried to put the temporary nature of the remission at the back of their mind. All at once the memories of the previous treatment, the worries and concerns it provoked come flooding back and arguably it is much worse for the carer who can see the burdens of care resuming centre stage again.
So how does this relate to me? I was diagnosed with Myeloma in July 2015 and started on the Myeloma XI trial. After 4 cycles I was confirmed as being in a very good partial remission. So good in fact that I went in for an autologous stem cell transplant on April 5th 2016 leaving hospital 20 days later. After that regular clinic appointments have been maintained with the frequency latterly dropping back to quarterly. In that time the remission has been maintained and we were able to do all the things that we wanted. Fast forward to July 2018 and emerged from the clinic in good spirits as the consultant confirmed that the full blood count results were”as good as it gets”. That euphoria vanished rapidly 10 days later with a phone call from the Myeloma Research Sister to say that the sensitive test, which for 3 years could barely detect any Myeloma cells, was now registering paraproteins( the key Myeloma marker) at 4.5. A month later the levels had risen to 7, still not a level to commence immediate treatment but an indicator that treatment was likely to become a real consideration in the near future.
So you understood when you started the whole process that the cancer wouldn’t die, that it was incurable but that doesn’t prepare you or your carer for the reality that further treatment was on the cards, the only unknown being exactly when it would need to start. The memories flood back; the mood swings caused by the steroids, worrying about the compromised immune system, the modified diet requirements, the impact on daily routines and future plans. For the patient the thought of more bone marrow biopsies, the regimen of new tablets and worries about side effects.
Although there is an underlying inevitability about the whole process, that in no way diminishes its impact on you and all around you.
So how do you cope? The cancer won’t die, not today or any day. Everything is geared up to achieving a new remission which has the potential to be even shorter than the one that has just gone. But new treatments continue to appear, more research is high lighting new avenues to explore but the “cure” remains elusive. Against that background all you and your carer can really do is live for today and try and plan for tomorrow but just ensure that all your plans are flexible and capable of adjustment! You cannot dwell on what might be to come – your focus must be on people and interests around you. Too much introspection feeds the disease. You can always make a log of the number of times that you will be told to “be positive”. An admirable sentiment but far more difficult to achieve in practice. However you can live with a cancer that won’t die; it’s not easy but it can be done and you can continue to enjoy yourselves.
My diagnosis and subsequent journey have been different to yours, but I really relate to your thoughts and feelings and the little things like people saying ‘oh, you do look better’ or ‘you do look well’ and me screaming inside that that is not how I feel, well, I suppose they mean well. I can also remember weirdly wanting to pull the blood cancer out of me. Anyway the joy I have found from this site is that I feel that people really understand me and my thoughts and feelings, although we are all unique. I have also found the site has lots of varied, interesting posts on it. Take lots of care and keep enjoying yourself.
Thanks Erica – appreciate your comments.
Thank you for sharing your personal thoughts and feelings about your blood cancer, what you have said really resonates with me too. Its good to hear that someone else has thoughts similar to mine. I am in remission from AML and spend much of my time swinging from panic and fear to periods of positivism and feeling pretty good.
I have coped by keeping busy, becoming involved with Bloodwise, running a blog about my experience and distracting myself with lots of interesting stuff!!! This forum is also a great place to help deal with your thoughts because we all understand what its really like. Being told to be positive is the worst isn’t it? I mean you are already being positive by being able to function every day! Some really have no idea and need educating about the difference between blood cancers and others. Having said this I do have a good life and have a lot to be grateful for and I have made a lot of wonderful friends in this community.
Thanks Anna- appreciate your positive feed back. I also floated my blog on the closed Myeloma forum and the general reaction to my blog has been amazing- it’s as if I have articulated what everyone is thinking but couldn’t express. I have even had people asking if they could copy my blog to show friends and relations because it explained what they were going through. On a personal basis that’s very rewarding especially as my aim is to get maximum exposure for my blogs to try and increase awareness of treatments and living with blood cancer. Like you I am a Bloodwise Ambassador although my location on the Isle of Man limits how much I can participate. Hope things continue to go well with you.
I am living with an uncureable Cancer. !
Chronic myeloid Leukaemia
I have had it now 4 months and the journey has been tough ! - so I thought I’d share my blog , my journey and just hope it can help anyone, with my cancer or any cancer for that matter to know they’re not alone in hOw they feel ! I hope it can help at least one person !
If link doesn’t work just copy and paste to google !
What a courageous blog and what a difficult time you have had. I do hope that things get better for you very quickly.
You are welcome… again your reply echos the response I have had from my blog too. I now have friends in the USA who found my blog, then contacted me because what I wrote really resonated. And your reason for sharing your blog is the same, to raise awareness of blood cancer. what is you blog address ? I’d like to take a look, mine is butterflyinremission.com
Hi @LeanneCMLx , yes, I can remember when I was first diagnosed I felt I was in a weird bubble and I thought I was the only person in the world and then that feeling of not being alone was such a comfort and as you say perhaps it doesn’t matter which blood cancer we have it is the thoughts and feelings that we all have in common.
We obviously think along the same lines which resonates with a lot of people although I am sure that we can’t be the only people to think in this way but perhaps it is not so easy for a lot of people to express those thoughts. Interesting that despite enduring different blood cancers we can identify the common issues which is what it is all about.
I haven’t mastered how to give my blogs a separate identity so they all reside on the Bloodwise website. Hopefully the latest blog has been added to the site https://bloodwise.org.uk/blog/my-myeloma-story
complete with scary pictures!
Very best wishes
Yes David we certainly do and its great to ‘meet you’ . I do have some of mine on the Bloodwise website too, anytime you feel you want to run your own blog let me know and I will happily help. FYI you can take on as much or as little of the running as you like, its not as scary as it sounds because providers do all the technical stuff free! I like to add mine to the Bloodwise site as well as my blog, when I get the time, because its important too. I have met some wonderful people there too.
I will take a look at yours and won’t be put off by scary picture after the ones I have!!
Thanks for this post, I think you have articulated what many of us may feel. I always think or describe myself as a blood cancer or leukaemia patient who sees a haematologist, because I feel there’s a important distinction between our types of cancer and other ones. (Not in terms of seriousness or threat of course, I know that many are far worse) But I think it’s the nature of having a cancer treatment that is always unfinished, never over.
I know when I was first diagnosed (with CML) the fact that the cancer was in my blood felt awful - it wasn’t something that could be removed - and as our blood flows everywhere in our bodies, surely it meant that the leukaemia was everywhere too.
Thank you for sharing your blog details too.
As you say, we can get to a place where we can live positively with blood cancer, but it can be a challenging journey.
Thanks Joanna -appreciate you taking the time to read what I wrote. I think that with Blood Cancer Awareness month coming up it is important that the distinction that you refer to between blood cancers and others should be highlighted. I hope the campaign is successful in raising awareness of the disease in its many guises.
Hi Joanna, I agree with you, I can also vividly remember a weird feeling of wanting to pull the cancer out of me, but as you say blood is throughout our bodies. Take lots of care of yourself.
Each and everyone of you has said something here which strikes a chord within me. When I was first diagnosed I sought out blogs rather than support groups. I don’t know why! But I learnt a lot, and am so grateful to those of you tho take the time to do blogs, as it’s invaluable to us all
Thanks Carina. Your reaction is exactly why I write my blogs. Cancer is surrounded by a cloak of mystery and anyone involved with suffering from its many guises or caring for someone with the disease can often feel alone. If the blogs written by so many of us help people understand that they are not alone, that experiences can be shared, that feelings are not exclusive it can help. I appreciate your comments. Best wishes
@MissP143 have you written a blog yourself that you would like to share with the forum?
Yes I echo @Nirroc as it too is the main reason why I write my blog. I have ‘met’ so many wonderful people who have followed it and got in touch after reading it so it has really helped me too. This forum has helped me so so much too. It is so comforting when you read that someone else has similar thoughts or feelings to you isn’t it
Thank you @Nirroc & @LeanneCMLx & everyone else for sharing your blogs and stories. Stories are so powerful, and can really touch others, because it helps us feel less alone.
If any of you reading this want to write a blog we’d love you too - https://bloodwise.org.uk/node/add/article - when working on the support line or sending emails I often link to blogs, as knowing others have experienced what you have is something people want to know.
Thank you !
You can use my blog anytime !
I want it to spread so that it can help anyone with my cancer as when was diagnosed with CML there was nothing… so I did a blog to help people and feel not alone