So this might be a hard read for some people and I do not mean to upset anyone but I need a safe place to put this.
In December I was diagnosed with Multiple Myeloma, which is a terminal but treatable Blood Cancer.
Since December I have been what is described as stoic (a person who can endure pain or hardship without showing their feelings or complaining) I have taken my diagnosis on the chin and just said it is just another chapter of my story.
But things are getting tough. At my age we have been offered fertility treatment to preserve my eggs and embryos with my husband, the first cycle was tough, we managed to get 8 eggs and 4 into the freezer and now I am in the process of a second cycle. This will be the last cycle before treatment.
I start treatment on 9th June all being well, but I am scared, I am not scared of treatment or the side effects but I am scared of dying! It is really getting to me, I am struggling with this being a terminal cancer and not knowing how long I have got.
I have got to much living to do die young. It’s not fair, I ask myself all the time what have i done so wrong in my life for this to happen to me, its not fair and im not coping.
I am and have been on anti depressants for a long time due to anxiety and I am meeting with a councillor (i dont find it very helpful to be honest)
But I don’t want to die
Is this normal to feel like this? Will it pass? how do I make my head stop swimming?
Sorry I said it would be a little rough x
Hi @Fighting_MM. First of all, there are no apologies needed.
I am so glad you used the forum to explain how you are feeling. I think so many of us will understand how you feel and the most important thing to say is that it’s ok.
I was diagnosed with follicular lymphoma 5 years ago when I was 41. I already had two children so I didn’t have the added worry of fertility like you. That, added on top of a quite recent diagnosis must be really tough. I completely understand that stoic front - I was the same. But it caught up with me, like it has you.
My thoughts were like yours at the beginning and although I now have bad days where my thoughts go back to that place, I’m learning to live with the uncertainties of what might lie ahead. No, it’s not easy, in fact it’s the hardest part of the journey for me and it’s so hard for others to understand. However, the importance of sharing how you feel and having a safe space to share that is what I value this forum for.
It’s sounds as though you have things in place to support you. I wonder if a change of councillor may be worth a try? It took me a while to find one I was comfortable with.
If you find a cure to stop those thoughts swimming please share! My worst time is at night when I’m trying to sleep - my mind goes into complete overdrive.
Have you given the helpline a call? They are really invaluable.
I wonder if you could find something that just takes you somewhere else for a while? For me it’s swimming. Off course it doesn’t make everything disappear but it does relax me and puts my focus on something else for a while. I’m sure others will have suggestions to. You just have to find something that works for you.
Please remember that you are allowed to feel the way you do. It will bring a range of emotions that will hit you at different times. A complete rollercoaster. All I can say is that we are all here for you. Keep posting, keep sharing and let us support you X
Hi @Fighting_MM first of all sending you a big virtual hug xxx
Dont apologise for speaking your mind qnd expressing your fears. This is absolutely the right place to do that.
I have Myelodysplastic syndrome (MDS) a v rare blood cancer, most common in men in their 70s. I was 42 when diagnosed and had 2 children aged 7 and 12 at the time. Felt like the end of the world. Had all those awful thoughts, would never see the kids grow up and get married, wouldnt get to enjoy retirement with my wonderful hubbie etc. Its terrifying esp in the beginning.
Im 5 yrs down the road now and have been on different meds as things progressed. Im now waiting on transplant.
Im still terrified but i deal with it better now. I did a bit of counselling and il tell hubbie when i feel panicky. I also take a sleeping tablet as i find it hard to turn off at nighttime and sleep is so important.
I say to my self that i could get hit by a bus 2moro so whats the point in worrying myself sick.
I found an Myelodysplastic syndrome (MDS) online support group which was great so i could talk with other people in the same position or further down the line and I check in here too.
So i would say get support, trust your doctors and make plans for moving forward even if they are small ones. Be good to yourself xxx
Oh @Fighting_MM I am so glad that you have found us and you are now part of our forum family, and this is a place where you can really say how it is for you.
I was diagnosed with another blood cancer 18 yrs ago and everyone thought I was so strong and little did they know I was like a serene swan and my flippers were going in all directions under my mask and facade. However I think your word of stoic describes it better.
I was lucky that I did not want more children. I cannot imagine what that has been like for you and your husband and I really thank you for being so honest as fertility is rarely spoken about on our forum. I am sure that you will help so many others.
When I was diagnosed I came home and wrote my will and funeral music.
It is natural to feel that you do not want to die, yes, you have so many more adventures to have and experience.
Your anxiety and fear feelings will be really heightened and a rollercoaster and it sounds as if you are working on those feelings, but they are so natural, so be kind of yourself.
If I knew how to stop my head swimming I would be a millionaire. Music and Pilates help me, If I don’t concentrate with my Pilates I usually fall over and not gracefully.
Perhaps use our forum and you can always talk to someone on the Blood Cancer UK support line.
Perhaps talk to you GP or consultant before you start treatment about your feelings and anxieties.
Look after yourself and be kind to yourself and please keep posting
Dear @Fighting_MM, thank you for your honestly and choosing the forum as your safe place. Being stoic is all very well but admitting your fears is definately a strength. I would say that all your fears are real and normal. The anticipation of treatment can be worse than actually going through it and I am sure that you will get lots of support with any side effects you may experience. These feelings will pass as your treatment progresses and you respond to the treatments given to you. Do you have a Clinical Nurse Specialist that you can talk to? We are more than happy to talk to you if you feel that would help? How to contact Blood Cancer UK | Blood Cancer UK
Take care and please get in touch.
Such an honest post. I found it helpful. My situation is not as bad. However, I think I hold back from referring to dying as it upsets family and in some ways I need to. A forum like this offers a safer place for discussion and kindly experts as well as others who may be able to empathise from experience. My husband is older than I and has a cancer diagnosis and heart issues. Just this morning he gave me an intricate tip about using the mower ‘if you need to’ and of course I recognise that what he really means is if he dies first. I knew he needed to say it for his own peace of mind but the thought of sitting on the mower or even remembering such a trivial thing if he does go first is more than I can cope with at the moment. I think sharing our thoughts starts conversations and is very valuable so thank you. And I hope you find some of the advice helps. I agree that having a councillor you feel in tune with is important as it isn’t just their expertise that you need, it is the ambience of interaction that makes that expertise more powerful. Will be thinking of you. Tricia
Yes @nelletap @Ashob @Nichola75 and @Fighting_MM culturally we just do not speak about about death or dying, but it can be so opening up, relieving, helpful and cathartic, but the time must feel right and it is not for everyone, it is a very personal thing.
It is like counselling, yes, that connection needs to be there, and I have found it helpful, but it is not for everyone.
Thank you so much @Fighting_MM for having the courage to post, you have also helped so many of us open up.
Be kind to yourselves everyone
I am pleased this post has hepled some people, I think it is a very real thing we need to speak about but only when we are ready.
I am under no illusion that I am going to have to fight to get through this, and not give up but I am so grateful to this forum to be able to speak and air my concerns and thoughts.
I hope you are all ok xx
Sorry to hear that.Yes the Stoics had what I suppose you could call a philosophy of acceptance of what the universe threw at you and I think possible a western parallel to Buddhism in that way?I think accept these bad things or not they might come into our lives regardless? Entropy I’m afraid, the tendency of things to break but not assemble however the mystery is why the universe has assembled at all against the entropy gradient?
Hi, I’m 62 and was diagnosed with lymphoma 4 years ago, it’s not curable, I had 10 months of treatment and now have a check up every 4 months. I still worry when my check up is due but once it’s over I forget about it til the next one. So far it’s been ok but I know that one of these days it won’t be. I’m going tomorrow for blood tests and will know on Monday if it’s ok, or not. I was terrified when I was diagnosed, my mother died of it in 1973 aged 37 and my father also in 1997 aged 63. So you can understand why I was so scared. I’ve always feared it but in a way expected it to happen. Once I was diagnosed and started treatment I was actually ok about it, my fear of getting it had gone because now I have it, it sounds mad I know. Things are so different from when my parents had it and I feel very confident in my doctor. Its just Covid that has spoiled everything! I can understand your fear completely but I found I just deal with it as it happens and don’t dwell on things too much. Worrying about it won’t change anything. I’m sorry for you being diagnosed at a young age but try and think of yourself as a strong person that can deal with anything they throw at you and try and keep positive. I wish you all the very best x
Your post has elements of exactly how I felt when I was diagnosed with acute myeloid leukaemia. I just kept think about how powerless I was, and really honestly never discussed my fear of dying until I came out of hospital after chemo and stem cell transplant. Aside from facing I may never see my children progress through life and the fear of not being here to support them, I remember thinking, what may sound ridiculous now,
what will happen to all my things? how each thing held importance to me and memories which kept me strong when things had been hard. These things ‘summed’ me and my life’s experience up! The idea that I may never be able to ‘add’ to this because this bloody illness was going to rob me made me angry.
I channeled this anger into planning for my treatment. My lack of control over my illness I couldn’t change but I could control my future to a point with my approach and preparation to treatment along with how I could spend my time in and post hospital admissions.
Each admission/intervention I thought of as ‘waves at sea’ where I was battling to stay afloat. There would be periods of calm before the next wave would hit, but I focused on getting over the wave to the next bit of calm and so on…it’s normal to fear death, we are rubbish at being honest and some of this is tied up with upsetting those closest to us. This forum allows others with cancer to be as honest about your innermost fears and hope (don’t forget that), no one will judge you, shared experiences can really make you feel stronger by knowing you are not alone. Big hug
Hi @Kerrie, @Deborah26 and @Fighting_MM I have a different blood cancer but my feelings are so similar to each of you.
When I was diagnosed I came straight home and wrote my will and funeral music. I labelled family photos, I photographed pieces of jewellery etc and labelled them and it made me have a clear out.
This was 18yrs ago and I still get anxious before, during and after all tests appointments and results.
Nothing anyone seems to post on here sounds mad, we are just special humans who are honest about how we feel.
I am not very good at identifying my anger or talking about death, it’s my upbringing.
My hubby is the same and if I try to talk about emotions or dying he is gone.
Yes, the worst part is feeling not in control and could die, which was not in my scheme of things, but actually nobody knows what their futures will be.
I really try and live in the day and appreciate the good things, which are nearly all free I now realise, but I am not perfect and my mind has a will of it’s own.
We are so lucky to have space on here to be really honest.
Look after and be kind to yourselves and keep posting
Hi @Fighting_MM I completely understand your fears about the future. I’m 59 and was diagnosed with mm in October 2020. I’m not as young as you but ultimately no-one wants to die and facing up to leaving loved ones behind and no longer existing is incredibly distressing so you have every right to feel as you do.
If I can offer you any hope, I have been through treatment including a stem cell transplant in August last year and beside backpain due to the damage done by the undiagnosed cancer I now feel well. I have spare bone marrow stored in a freezer which will be available should the mm return. MM is very treatable and is considered a long term disease, terminal is at the end of the disease when there are no more treatments available. This shouldn’t be for a long long time for you. Just remember that this disease is heavily researched and the longer we stick around the more likely it is that a cure or at least a long term control of the disease could become a reality. Some of my medical team say that mm is becoming a disease you live with not die of. I’ve looked long and hard at the data regarding this disease and 14% of people do reach a new equilibrium where their immune systems control the disease, this is seldom mentioned by medical people.
Ultimately life does become a bit more normal after the treatment and the disease does take more of a back seat. It never goes away but everyone has a ticking time bomb inside them, the difference is ours has been found and highlighted. Just remember that research is being done all the time, Car t therapy may be the future for mm. Life has thrown us some but you can still live and enjoy life. It’s ok not to be ok but life creeps up on you and takes over and you do keep going. You will still have the joy of children and you have a lot of life to look forward to. Sending lots of love and hugs to you and remember you are not alone.
Hi @Fighting_MM I have been thinking about you and just wondered how you are doing now?
Look after yourself
Sorry it has took me a while to come back to you, chemo is knocking me about. I am ok, I’m feeling very nervous about my Stem cell transplant I don’t have a date yet but they are hoping to harvest on the 5th of September if “everything is going beautifully”
I just feel like it is such a big thing and I really don’t know if I want to go through with it although I know realistically I have to.
I’m so worried about being away from home and then I have awful irrational thoughts that the dog might die when I’m in the hospital (he is only 10 so probably very unlikely) but like I said irrational thoughts.
Hi @Fighting_MM I think your feelings are so, so natural and when I am scared and worried about the unknown then the rational and irrational thoughts whip into my mind and go round and round.
I hope others might be able to share their experiences, it is a big thing, so really look after yourself and be ever so kind to yourself.
Please keep us updated.
I think all of your thoughts are valid. I’m sure lots of others will be able to share their experiences as well. It’s such a big thing. Sending lots of special wishes. As @Erica says, be kind to yourself
I can identify exactly with how you feel @Fighting_MM . I was diagnosed with Multiple Myeloma in 2018 and largely had to deal with it alone as all of my family live in another part of the country. I’d never heard of MM and didn’t realise at first that it was a cancer. Doctors seemed reluctant to go into any great detail or spend very much time with me and I spent long hours contemplating my future, often listening to music and welling up. Doctors mostly gave me the most pessimistic outlook and stressed the terminal nature of the disease rather than talking about the amazing advances in treatment for this cancer and how many more people go on to live years of normal life before relapsing. I myself have been in remission for 3 years and whilst the first signs of my relapse have shown up, it’s a slow relapse and I’ve been living a more or less normal life since my treatment stopped or as normal as Covid allowed! It’s not necessarily the bleak outlook that you assume it’s going to be and I made up my mind to live life as fully as possible and do as much as possible within my limitations. I think it opened my eyes that this was really the only way to live your life after diagnosis and that I wasn’t going to spend my time worrying about something which is largely out of my control. I hope you’re able to find your positives too and enjoy life. Let us know how you get on
Hi @Fighting_MM, it sounds like it’s been a tough time for you recently. It’s very understandable to be feeling scared or nervous about your treatment. May I ask if your treatment team are aware of your reservations? Do share your concerns with them, it’d be useful for them to know how you’re feeling so that they are able to support you through this. We’d also be very happy to talk things over with you, so please don’t hesitate to reach out if this would help at all (0808 2080 888). Best wishes, Tanya.
Sorry to hear this, always here if you need someone to talk too! X