I was diagnosed with CLL in 2003 and, at that time, the medical profession did not think of referring patients to counselling at diagnosis or along their cancer journey. I think back and I realise I felt so lonely and I was in such shock that I really did need help. I was not brought up to share my thoughts and feelings, good little girls were seen and not heard. Subsequently I have had very positive experiences of counselling. Does anyone have any thoughts on this subject?
Hi Erica, I didn’t have any counselling after diagnosis, but did get referred for counselling after my bone marrow transplant. I found having the space to talk through some of my recent experiences, mixed emotions and concerns really useful. Since then, I’ve retrained as a counsellor myself, and in my placement I often worked with people with health issues.
Thanks Jo, I have also trained as a counsellor and supervisor, relationships, addiction, loss and bereavement are the areas I loved and worked and specialised in. I now only supervise one counsellor. That is why I believe so passionately in supporting, not only the person with blood cancer but also their family, friends, colleagues, carers etc. It is interesting to think about the losses around the diagnosis of a blood cancer diagnosis. Take lots of care.
This is a great topic thank you for starting it Erica.
I often encourage or suggest counselling as talking freely about the emotions diagnosis and an illness can bring up is so helpful. Was it through your hematologist you received it, or elsewhere? Just so others know where they can go, if needs be.
Hi Dawn, I received counselling through a project with trainee counsellors and my employer for a trauma in my life. When I received my CLL diagnosis I worked part-time in the counselling field and received counselling and support through them. My CLL medical team never suggested it, this was 14 yrs ago, I hope times have changed. Counselling has really helped me, but I think it has to be with a especially trained counsellor that feels right for you, that relationship is so important.
Would you recommend hospitals have some sort of materials ready just in case someone is seeking counselling after diagnosis?
Hi Josh, I think it would be really useful for hospitals to have a list of specialist counsellors available and for the medical staff to offer it, where and when appropriate. Professional posters offering counselling services would be useful in waiting rooms. I think the counsellors should have specialist training, at least, in relationships, cancer, anxiety, fear, trauma, bereavement and loss.
Erica I have bi polar, and anxiety, and I was under a psychotherapist while I was diagnosed so it helped me alot to get through the first few months.
You were fortunate to be under an appropriate psychotherapist at the time you were diagnosed, although it must have been an extra difficult and anxious time for you. I hope this community forum will also prove supportive for you. There is no pressure on you at all to do this but at some point you might wish to write a post and see if others also had other issues to cope with at diagnosis. Take care and thanks for being so honest.
Hi Erica. My childhood was abusive,and this is what they think caused my BP and anxiety. I’d had a therapist for yrs,after it got really bad. October 2015 i found a breast lump quite by accident,went to gp i was referred for an ultrasound scan,later that week i had an asthma check with my own gp whom i asked a second opinion he said it was probably hormonal imbalance changes and said he wouldn’t bother going,i told my husband he said no your going,thank god i did. I was sent to the breast clinic for a mammogram and they said they were clear and to come back in January, i had a core biopsy, pathologist didnt like what he saw i had it taken out and in feb 2016 i was officially diagnosed with mcl stage 4,its in different parts of my body. My therapist Sarah was amazing she even let my husband come to one session as he was finding it harder than me. I kinda knew way back in jan 16 it wasn’t something good,id sort of sorted it in my mind. I finished therapy about 3 mths ago,i miss it,i miss Sarah but i feel this is the next chapter of my life,im stronger than i have ever been,the only worry i have is my consultant has said chemo and stem cell will effect my medication im on,and hes concerned about that,determination wins through. If anyone ever wants to ask me anything about anything im always here.
Thank you so much for being so honest, I think that is why it will help so many others relate to it. It sounds as if your consultant is looking at you holistically, which is wonderful. I can really understand that you miss Sarah, she sounds brilliant. I agree determination wins through, but I really find it hard admitting I need help, childhood messages again. Thanks so much for offering to answer questions and you can always ask them as well.
Hi All. I always knew I needed counselling (or something) following my diagnosis. It was hard to share things with family and friends They wasn’t sure what to say, if it would help or if it would make me worse. Because of this I don’t always think their responses were honest and I wasn’t honest for the same reasons. Initially I saw it as a weakness - that ‘pull yourself together’ attitude. I spoke to a counsellor I had seen previously for something unrelated and this helped but we both agreed I needed something more specialised! I asked for a referral to a counsellor through the hospital and this has been so helpful. I found out about this through the McMillan Cancer Centre at the hospital which has so many useful booklets and information about workshops and support groups. I think you have to be really honest for it to help and that’s difficult. But they understand. She is specialised in working with cancer and trauma. I have talked about all those fears and anxieties that I felt were a weakness, she has given honest responses and really made me move on a little bit after each visit. It’s not right for everybody but for me it’s been invaluable X
Hi Nichola, thanks for your post, yes, I agree that admitting you need and going for counselling are definitely strengths. You also made a good point that sometimes you need specialist counselling with the right counsellor for you. Also counselling isn’t for everyone. I have also found McMillan Cancer Centres very helpful for information, support and leaflets.