Many members have expressed struggling during the period between diagnosis or suspected diagnosis, and waiting for the results of any scans/tests to enable staging. Please share your experiences with this worry, and any advice or tips if you have been there and found things that made it easier to manage.
(And don’t forget our support services are here if you want to talk, the details are in the pink box at the top of the page)
It brings it all back as if it were yesterday, it was 15 yrs ago, and I immediately get that yukky feeling in my stomach and all the fears, what if’s, thoughts and feelings come whizzing back to me. I now realise me and my body were in shock my mapped out future had crumbled. I was lucky in a way because I had no knowledge about blood cancers and there was so much less on the internet. I can remember looking on the internet and all I saw it said for chronic lymphocytic leukaemia was that there was a 5-10 yrs life expectancy. Therefore I went into practical mode to block out my feelings and re-wrote my will, sorted out my funeral and most importantly the music for it. The diagnosis was just before Christmas so I told everyone by writing it in my Christmas cards. I sent a card to a female acquaintance in California and our cards crossed over the Atlantic ocean and when I received hers she had also just been diagnosed with CLL. So we have been in email contact ever since. She immediately had treatment, as often happens in the USA, I believe, and so I was even more confused when I was put on watch and wait, was I too ill to have treatment? My medical team did not explain much and I did not ask because I did not know what to ask and would not ask about my mortality as I did not want to hear the reply. When I received copies of medial letters I did not understand the wording about staging or blood test results etc… Again still in practical mode I started charting my blood test results on graph paper which I had to give up when it got the length of a toilet roll. My husband ‘does not do feelings’ or say much so my practical mode fitted in well. My tips would be to get emotional support whether with a professional, family or good friends. Some people find meditation helps but I am useless at that. I would find out that the Bloodwise website gives reliable information, booklets, join this community forum, use their support line and be kind to yourself and have treats. But there is no getting away from it I think you are in tremendous shock and in limbo with those fears, thoughts and feelings so do hobbies, perhaps read or listen to music and take lots of care of yourself.
I agree with all you have said Erica about the feelings, the uncertainty of what is happening, the fear of whether you can plan for the future or how much future you have. I think when you are on ‘watch & wait’ as we are the fear is always lurking in the background no matter how much you try to distract yourself with other things. I have Smouldering Myeloma and am actively monitored - in fact I am having a full body MRI tomorrow as I have had new pain around my back and ribs. I am just hoping it is nothing significant and as my bloods were still stable recently am sure it’s okay but it’s difficult to not think the worst. I try to do other things to take my mind off the worries such as reading, watching quiz shows and I have recently started swimming several times a week with my husband. That is helping. I figure if I can get as fit as possible then should I need to start treatment then my body is hopefully going to be able to cope better. Some days I don’t think about things but it is difficult.
Hi Yvonne, I agree with you about getting as fit as possible then should I need to start treatment then my body is hopefully going to be able to cope better. I am a Pilates and Zumba girl myself. The great thing about being my age is I don’t care what I look like or what others think of me now. Please do let us know how your full body MRI scan goes, we are all here to support each other with those fears, thoughts and feelings, we are the ones who really understand.
Thank you Erica. It’s good to know we can offload our worries. I don’t really talk about it to anyone as to everyone else I look all right. When the problem is with your blood / bone marrow it’s invisible to everyone. I can talk to my husband Steve about it all but I think sometimes I’m just repeating my concerns and he’s heard it all before. I mostly keep it in my head but it helps to sometimes ‘talk it out’ as it were.I’m sure you know what I mean. I’ll let you know how things go.
Fingers crossed. X
Yes, Yvonne, I know what you mean. I do not think anyone really understands but us on this site. My husband is a bit in denial and does not do feelings. Friends like to think if I look alright then I am alright, as you say. I broke my arm a few years back and the sympathy and help was right there immediately. Even wearing a Bloodwise tee shirt seems to give the impression that I OK and I am well so I wear it. Yes, let’s keep talking on this site.
After 6 months i am still waiting to find out if i have stage 1 or stage 2 CMML. My next meeting with the Haematologist is on July 1 st.She was prepared to wait 6 months till my next blood test but i explained that to me if my bloods where the same this in effect was a positive.Fortunately the Mcmillan nurse present agreed .For me analysing blood tests quickly and as frequently as the patient and doctor deem necessary is a good thing.
Colin, oh, the anxiety around blood test time. How lovely to have a Mcmillan nurse in with you for your appointment, I have found them to be a great support. I agree stable blood tests and staying on watch and wait is great for me. Please keep posting how you are and feeling and tell us how you get on on 1July.
I hope you’re doing okay while you’re waiting for your appointment Colin, have you found anything that is helping during the wait?
I got called in early to see the Haematologist and McMillan nurse yesterday. Results confirm that i have CMML and also that i am at high risk of contracting the acute form.I am being referred to Newcastle for tests for a stem cell/bone marrow operation.Huge shock as i feel so fit.Can’t get my head round it yet.
Colin, thanks for letting us know, we are here to support you. Yes, you must feel in complete shock and don’t underestimate it the effect on your thoughts, feelings and emotions. I shouldn’t think you can get your head around it. It will take a long while for your body to come off high alert. Don’t forget that the Bloodwise support line is there for you and their details are 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at support@bloodwise.org.uk. Take lots of special care of yourself. Please keep us updated and take lots of care of yourself.
I can only imagine how you’re feeling Colin, have you got good support around you? Glad to hear the Macmillan nurse was there too, hopefully they can and will be a good form of support for you too. Have you been given any information about a stem cell transplant or when it might take place?
Had my first meeting with a member of the Stem Cell transplant team at the Freeman’s hospital this week.Been given the Bloodwise book on the OP and told the pro’s and cons.I think the fact that i still feel fit as a fiddle had lulled me into a false sense of security ,being told the seriousness of my illness by a specialist certainly brought me down to earth with a bang.I am seen as a pretty tough cookie amongst fiends and family but must say in the last couple of days i have broken down twice when telling friends about my health.I now find myself telling those that ask that i’m ok just in case i break down again when telling them the truth.I feel a bit guilty because family and friends are positive and all i seem to do is feel sorry for myself.
Hello Colin, I’m not surprised your feeling traumatised after meeting the transplant team, they have to give the worst case scenario so you can give informed consent, then they ask if you want it. In your case I suspect the answer will be yes. Don’t feel you have to be the big man, it’s ok to be overwhelmed by the experience and you need to take time to absorb the whole thing. I have ppcl myeloma but didn’t get my transplant due to heart problems but remember the sleepless nights trying to decide what to do. Remember transplants are more successful and safer than ever before, if you’ve got a good support network around you there is no reason you can’t cope. I meet people at my clinic every week who have recovered and are leading normal lives. This forum is a great place to let your real feelings out without worrying about upsetting anyone. Best wishes alfie female 55
Hi Colin. I am so glad to hear from you again, don’t forget you have probably had one of the greatest shocks of your life, my body does not deal with that and all the feelings it brings up. Ever since diagnosis, 15 yrs ago, I have been far more emotional and my emotions and ready to go onto high alert at the least thing. We are posting here about us but don’t forget your family and friends will be going through similar emotions. With hindsight I wish I had kept the lines of honest communication open more so we could all talk about the processes we were all going through emotionally and in our case physically as well. You say about feeling sorry for yourself, I think you are entitled to, it’s a natural part of our emotions. I have given you details of the Bloodwise support line above, they are there for you if you need them and we are all here for you, we are the ones that really understand what you are going through. Please keep posting as I have found that is the way to gain support. I have also found emotions I had been told were being weak (childhood messages) are actually seen as strengths when I talk about them. I also wish I had just given myself time to take in the shock of diagnosis and, for me, it took a long time. Take care.
Hi Colin, thanks for popping back and sharing your thoughts and worries. As Erica said, being diagnosed is a huge shock for anyone and especially if you’re feeling well it can seem a bit surreal can’t it. Don’t feel bad for feeling down or worried, it’s to be expected, it’s a big decision for you to make and face. Our support services are here, 0808 2080 888 or via support@bloodwise.org.uk if you ever want to talk. Take care.