I have been wondering how I would have liked people to be when I was diagnosed?
I now realise that this was a first and that we were all floundering and didn’t know what to say and how to be.
I also think that whatever some people did or said it would be wrong in my eyes at the time, I was hurting medically and emotionally, I was in shock and very scared.
I remember with work feeling that I was seen as ‘Erica with Leukaemia’ and not just ‘Erica’ for what seemed ages.
Some people made eye contact, some looked at me sideways and some avoided me.
Some said they were sorry,
I could not explain to them what I did not understand myself. I was put on ‘watch and wait’ and I, and they thought, that if I had cancer that I would have treatment, be cured and we would all go back to normal. (how wrong could we all be !!)
One friend had just been made redundant and had some money which she wanted to give me so I could go privately and get treatment. What a lovely thought.
I think I would just liked someone to ask me what I wanted, what could they do to help, like just to listen to me and all sorts of practical things like to cook a meal, do the washing, do the shopping, pick up my medication, give me a lift to hospital etc.
What I didn’t want was someone to try and fix me, or tell me everything will be fine.
My pet hate was people telling me ‘oh, you do look well’ when I felt absolutely terrible inside.
What do others think?
Hi @Erica. What a great conversation to start. I was thinking about this when I replied to somebody the other day.
‘You look well’ is my pet hate as well!!!
I agree with you that nothing would’ve been right at the time and I’m not really sure people knew what to do, what to ask, whether to ask or whether to just carry on as normal. If I’m honest I’m not actually sure I knew either!
Looking back now I’m able to reflect on what I would’ve liked.
I wanted to be strong and deal with it well (as so many off us do) I put on a brave face , worked through radiotherapy and after the initial tears, when people asked me how I was I said fine. When they asked if I was ok to be at work I said yes and when they asked of I needed help at home I said no. I was very convincing when I responded and probably made it difficult for people to know what to do for the best. Should they push me further, ask me again or just leave me alone? It must be a really hard situation to be in. I needed work to take the lead and perhaps take control of some decisions.
Now I would say I wish people hadn’t accepted my answer of ‘I’m fine’ or ‘I’m ok to be at work’ because off course I wouldn’t be fine and off course I shouldn’t have been at work but nobody knew what to do for the best. I also agree with you @Erica and wish that people hadn’t told me to be positive. That was quite detrimental and it made me feel like I didn’t have the right to feel sad and angry and have bad days. Sometimes I just wanted a rant and for somebody to listen and just give me a hug, not to try and make it better!
It was new ground for us all and there really was no right or wrong. We all learnt as we went along together. We reflected, we learnt and we made things better.
I’m looking forward to hearing others experiences X
Dear Erica and Nichola,
I must admit I was devastated when I was first diagnosed in November 2014.
I told my family of course, but not many other people as the comments I received were fatuous and made me angry.
“Be positive” “it could be worse””you look so well”
“We’ve all got to die” etc.
I have no confidence in any GP, the first one I saw immediately after my diagnosis said “ in my experience there’s no point in worrying about something you can’t do anything about”!!
I’ve been prescribed medication by other GPs at the practice I attend which I knew was dangerous to take, so I didn’t.
I’ve changed doctors 3 times since and it’s still happens.
My haematologist at the hospital who supervises my treatment is the only one I trust.
I don’t discuss my illness with anyone but the team involved in my treatment.
I’m now 77 and I have my pre chemo blood test on Thursday and unless there are any anomalies start my 87th cycle of Azacitidine on 16/7.
My haematologist refers to me as a record holder, as I’m the longest survivor with MDS she has treated.
I live alone and do have off days but refuse to let myself go.
I am aware my chemotherapy won’t cure me or work forever but will never give in.
My prognosis was bad but my self belief keeps me going.
I’ve outlived many patients with various forms of MDS and never ever think of myself as an invalid.
The most enlightening quote I’ve ever heard was by
Franklin D Roosevelt the American president in WW2,
“When you get to the end of your rope, tie a knot and hang on”
Works for me.
Best wishes to you both
Anthony
What an interesting topic to address and will probably be different for people but with common themes coming through. I only told family and close friends. The family were worried and then interested. I found that my husband and I alleviated their worries, as parents do and now we just run along. Covid has aggravated the situation as it makes seeing them extremely difficult as they have their lives to live and it, naturally, puts me at risk but we work around it.
The fact that I am on watch and wait helps but also dismisses the diagnosis. If you have cancer why aren’t you being treated? It became an oddity that needed answers and so they were curious and I believe that enabled everyone to avoid asking the obvious question of “ How are you really? You must be devastated,” with hindsight I wish people had asked me how I was with meaning, if that makes sense. I look a picture of health and certainly no different than before the diagnosis. However, I am changed, I know I am but I come across as just as I was before diagnosis (ignoring covid which doesn’t allow you to do very much at all). One set of friends told my husband that they wouldn’t ask me how I was, but asked him instead, as they didn’t want my condition to “ define me”! I was devastated at this reaction.
As time moves on and acceptance creeps in the status quo exists. I currently feel that I’m out of sight and out of mind because I can’t engage with people in the same way. I have certainly found out who my friends are! They are the ones who do ask after me not the ones who choose to believe I am alright!!!
Family are coping well and are brilliant, we have an open relationship which means that when they need to know anything I will tell them and as I am approaching treatment that is a conversation I may soon need to have.
My best friend, my husband, allowed me to just talk………and talk about the diagnosis, what it meant, how it made me feel and continues to do so, how safe we could engage with the world, very safely as it happened until the pandemic destroyed all that, etc etc .Maybe it would have been a good thing if some other people in your life would allow you to do that would have been the best thing. After all a fabulous holiday, the arrival of grandchildren etc allows that so why not illness???
Initially I kept the number of people I told about my ET to a bare minimum. I rang my parents from the hospital car park in tears and they were curious (it came completely out the blue) and supportive. I also told my closest friend who immediately got me round for a cuppa and a chance to talk it through, and she has been amazing, doesn’t treat me any different, but occasionally sends me links to news articles she’s seen about vaccines and blood cancer. My other half (who also has a chronic condition) had a reaction of “it is what it is”, which seriously annoyed me later but not at the time. At the time I thought it was a ‘remember the consultant said I should consider it a disorder, not cancer’ thing, but now I’m more irritated that he didn’t cry and hug me and propose upon hearing the C word, which bizarrely I also find funny 
My line manager just started telling me about all the people he knows who have had or have cancer, which was not helpful at all. “Thank you for making the conversation less about me and more about you” sprung to mind!
In the last couple of months I’ve started being more open about why I’ve been so vocal about not opening up too soon etc, and a couple of people have reached out to say they saw my news and hoped I was doing ok and to let them know if they could do anything.
This is by far my biggest issue with this diagnosis at present! There is nothing! I’m not even on treatment, I feel like a cancer fraud, so I don’t want to tell people because I don’t want their horrified reaction followed by me going ‘oh no, it’s fine, I’m not even on treatment’. It’s like I have a weird form of survivor guilt.
I’d love to say we need a public campaign to raise awareness that not all cancer is an immediate death sentence, but I’d rather the airtime be given to teaching about warning signs of the big bad Cs.
So I think in answer to the initial question, I think I would have wanted people to be like my friend: supportive, a little curious without pushing, then treating me no different to my face, but letting me know in little ways that she’s still thinking about me and what’s going round in my head.
Excellent thread Erica, thanks!
Thanks so much @Blackhat, @Nichola75 , @Lababe and @vicster I agree with every word you have all written.
What I did not say is I told my son, who must have been about 30 at the time, on the phone about my, out of the blue, diagnosis which I regret, it would have been so much better face to face.
In retrospect again I tended to blurt out my diagnosis to people as I felt it had been blurted out to me by my gynaecologist ‘I have never had to tell anyone this before but you have Chronic Lymphocytic Leukaemia go and see your GP’
My husband has his head in the sand and does not talk about ‘it’, that is just his make up. Friends give me the emotional support I need.
@Blackhat wonderful to hear from you, I had been very worried about you and I love the Roosevelt quote.
Hi Erica what a great topic! I went through all kinds of scenarios in my head about how people would react when I told them I had CLL. Firstly I found that there is very little understanding of blood cancers. Most people see that you get diagnosed with cancer have chemo, lose you hair get sick and hopefully recover. People couldn’t relate to the fact that I looked so well and I constantly got the “but you don’t look ill” it drove me mad. I had 2 years on watch and wait and I think in this time some “friends” were dubious if I actually did have an illness. The only real sign was the huge node in my neck, I wish they could of felt the sheer exhaustion I felt being kept awake by night sweats. When I had to have chemo in 2016 these people suddenly became sympathetic again. 10months after chemo I returned to work and was meet with the “oh your better now” and wow you look amazing! I am back on watch and wait again. People found it hard to understand when I was sent home to sheild as “but your cured” was the reaction. The Big problem with blood cancer is lack of understanding so people don’t react like they would with other more visible cancers. I would love people to just accept I have a long term illness and when I say I feel unwell then I actually
feel unwell regardless what I look like.
@Maria.G63 you worded your post far better than I ever could, thanks so much.
What does anyone else think?
Hi Erica
Thank you for sharing that and posing the question, so different for all of us.
I was diagnosed mid January 2021 with ET
the day is etched in my mind.
We had snow and it was very cold I live alone in NE Scotland and had been given an appointment with the Haemotologist at my local teaching hospital a 18 mile drive from my home. This after much blood sampling by my GP for unrelated condition.
Totally in the dark I am given the news and a book by Bloodwise in which significant areas had been annotated for easy reference. My only question was did I need to change my diet! No hint re support
or what to expect. I got up left and on finding my car sat and started to process what little I had been told.
It’s lockdown and I have no family or anyone nearby I can go to and debrief myself. So I phone my sister 60 miles away and dealing with her daughters recent breast cancer diagnoses so make light of it all and ask about my niece… then my oldest friend also supporting a daughter with terminal cancer and feel bad for even doing it! Then home to my dogs who are my resident therapists but generally I just tell folks when it’s appropriate and as few have any knowledge of the condition do my best to educate them and those interested.
Lockdown has eased but I am more of a recluse than ever taking comfort in living in the country and being able most days to go out and walk my dogs…
Hi @Lelly. It’s great to hear from you. That’s sounds like a tough journey and like you said, so different for us all.
From what you have said it sounds as though it was really difficult for you to find somebody to talk to, without feeling guilty for sharing your diagnosis - that’s really hard.
Is there any support nearby. It sounds as though this is something you would like but it’s just not able to happen? Have family been able to visit?
Where you live sounds beautiful and I can picture it now!
This can be a lonely journey. Please use this forum and the support line if you need to. Keep posting and letting us know how you are X
Oh @Lelly The shock, isolation and loneliness really come out of your post.
What a way to be told your diagnosis and with no support or what to expect.
You have brought straight back all the horrible feelings I had at my diagnosis.
You still managed to put on the mask and made light of it all with your sister, many of us do it.
Oh, I bet your dogs are the best therapists in all the world.
I expect it is too easy for you to become a recluse, but as @Nichola75 says you now have us and the support line there for you and you can be completely honest with us.
I look forward to hearing more about you.
Take lots of special care of yourself and spoil yourself.
Hi Lelly - your post touched me, I have ET too diagnosed 15 years ago and I appreciate all you say and the lack of information on diagnosis - just to point you also to MPN Voice wonderful charity and source of support for our condition. They hold forums too which can be lovely to touch base with others - in normal times these are held in person at locations around the UK which I found a treasure when I first started attending, for now the forums are done online via Zoom but equally supportive - to be with others in person or virtually helps a great deal, quite a few of those working for the charity also have an MPN too so their care has empathy too. Do hope it helps for you
Really great that you can share your experiences around the support groups etc. I hope you are keeping well? X
Yes I know I wished I had known of the charities when I was first diagnosed but it was some years back - it makes such a difference doesn’t it to be with ones who understand, have empathy and the right knowledge! I am ok thanks I take things one day at a time, these are definitely challenging times for any of us with blood cancers and our still uncertain situation as the rest of the community “goes back to normal” not that I think it is yet time to be remotely back to normal. In itself it is of help to be with others in our same situation currently and even family and friends don’t get it just yet!
Hi @Jilly20 great to hear from you and how you are getting on in these challenging times.
Yes, aren’t local support group meetings absolutely brilliant for meeting up with others with like conditions and there has been so much progress made in information and support in the 15 yrs since your diagnosis, I was diagnosed 17 yrs ago. It must have been a very isolated, lonely place for you back then.
Mind you I do also like Zoom webinars and support groups because people can get together from all over the UK, they can also be so topical.
Yes, you are so right family and friends sometimes just don’t get it.
Take care and please keep posting how you are.
Erica, initially when I was diagnosed with AML it came as a shock. I did not know what to expect and I was in denial for the first few days. When the chemotherapy started I started to learn more about the cancer and the treatment. Other patients on the ward which were well ahead of me in the treatment were a great help and I learned a lots from them. The all ward became a family to me from the janitors to the top consultant along with other patients and their relatives.
My partner was fantastic. She was my external contact to the outside world.
My partner, my wife now, and myself decided to minimised the numbers of visitors to avoid catching infection. Only close relatives and close friends.
The answers to friends and family that wanted to help were, give blood, give platelets and get onto a bone marrow donor list.
Although my wife was great at hospital I knew that she was an emotional wreck outside. This we’re friends came to help. She was needing emotional support which she got.
The same as you, friends and relatives look at you differently and they act differently but I was determined to not let this me down. I made no fuss about it. I was even make it fun and pleasant about it and that makes them relax and easy for me and my wife to get through the treatment.
It hadn’t been easy especially during the bone marrow transplant. I am now 25 years away from that but still feel it was yesterday.
Last year I was diagnosed with bladder and gone through chemotherapy and radiotherapy. I am currently on immunotherapy. I learned over the years to stay positive about cancer and enjoy each day as it comes.
I wished you well and my heart is with you as I understand what you going through.
@Normand_Howison you describe how it was for you so clearly, .but I was also very struck by your insight and appreciation of what your partner/wife was going through and it also seems that you have some very supportive friends.
Yes, a good philosophy ‘enjoy each day as it comes’ and look after yourselves and spoil yourselves.
Your summary sums up how I feel … I am alright, I do look the same however I do also worry about things that I rarely share. I have a fantastic husband, my kids are supportive and I have found out since that at least one of them went away and read up on follicular lymphoma … the survivor guilt is hard …we have 4 friends battling the big C and I feel bad about them all the time. Thank you for sharing
Hi @Boo13 I can really relate to your feelings of survivor guilt, they can be really haunting. All cancer diagnosis I hear about really hits me in the stomach, sort of like the feelings I had at diagnosis.
I have found I can share things on here about how it really is to be me and I know people will understand and not try to fix me, sometimes family and friends cannot understand, it is not their fault. I find it is better than me bottling things up, that is no good for me or my health.
How are you now?
I think in my case I didn’t know how to feel myself so I didn’t place any expectations on anyone else. I’d never heard of this disease that I’d got and had to spend some time getting to know my new “friend”. I never minded people asking me about my condition even when i went back to work, in fact I encouraged my boss to make what was wrong with me common knowledge to try and avoid as much awkwardness as possible and talking about it helped me too. I think what I would have liked when I was diagnosed was other people going through the same thing to talk to but my medical team didn’t tell what help and support was available so it took me some time to find it.