Poll: Were you offered emotional support when you (or a loved one) were diagnosed?

Did you feel that you were offered emotional/psychological support at the time of your/your loved one’s diagnosis?

  • Yes
  • No

0 voters

Have a vote and feel free to share your experiences and expand on your answers below :+1:

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Perhaps my ‘No’ vote is slightly unfair as I was diagnosed 16 years ago. I hope times have changed?

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Again, like @Erica, I was diagnosed in 2007, and no support given on diagnosis. My haematologist did refer me in 2011 to the cancer psychology service, but it took 3 months before I was seen, by which time I had found other ways of coping. However my GPs really helped when I went into meltdown after my operation and original treatment, and I saw someone whenever I needed to. Just as well, as I went into multiple relapses a couple of months later, and had various complications (including permanent hearing loss) to contend with.

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I am a carer not a patient. Such support as we got on diagnosis- as my partner’s blood analysis showed a shift from “smouldering” to full-blown Myeloma- was directed (quite rightly) at the patient. So far as I was concerned, I handled things reasonably well until considerable pain and incompatibility between patient and specific chemo made our relationship tricky. She suffered and I couldn’t “reach” her and for the first time began to “rehearse” her death. I sought counselling at our local cancer support centre - The Bracken Trust, a great institution very like the brilliant Maggie’s centres- and was given a great deal of free support. I was allowed as many consultations as I needed and found after 3 helpful sessions that I was much stronger and have not needed more since that time.

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Hi, I am so glad you have found our community forum. You are just as entitled to be here as the patient, I expect you have gone through similar shock, fears, thoughts and feelings. In hindsight I really wish that I could have had honest, open communication with loved ones, but I was struggling because I could not make sense of what was happening to me, that was all I could cope with, let alone to ask others how they were feeling and go through this rollercoaster of a journey together. I was brought up to not show or talk about my feelings as that was seen as a weakness at the time and I am useless at honestly having open communication with loved ones sometimes and I need to practice communication skills and asking what’s going on for loved ones. I am so good at putting on the mask and retreating back into my own head and really let the fears, thoughts and feelings take over there. I think carers (family members) are the unsung heroes of this world. I am so glad you kept looking and found free support, you deserve it. We are here to support each other and if you would like to speak to someone the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. Please keep posting what’s going on for you.

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Welcome to the forum @dickielex. I am pleased that you managed to access some help for yourselves. Unfortunately many couples struggle through diagnosis, treatment and beyond, and many relationships break down. It is now recognised that carers need support (physical and emotional) too. Men especially are also afraid to admit when they are struggling with their fears. I hope that things improve for you and your partner, and that you both find other threads on the forum which are of interest…or maybe you may have a question to ask of other users. Best wishes

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I was diagnosed as having progressed from MGUS to Smouldering Myeloma in September 2017. I was told by the consultant the results of my bone marrow biopsy and then I was seen by my clinical nurse specialist who explained again that I had early stages of bone marrow cancer and that it would most likely progress and become active and treatment would then be started. He gave me some Myeloma UK leaflets to read and just said ring us if you need to with any queries and see you in 3 months. That was it. I saw a different CNS in November 2019 who seemed very surprised that I hadn’t been referred for counselling with the psychologist when I received my diagnosis. It’s now 2 years on so I have sort of got through it all mentally by myself. I would have appreciated some support to help come to terms with this diagnosis mentally but it’s too late now I think. I just got on with it but I admit I do still struggle at times.

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Yes, Yvonne, as you say we just got on with it, but in hindsight I think my diagnosis was like dropping a stone in a pond, there was a ripple effect of thoughts, emotions, feelings, medical issues, relationship issues and practicalities which I really would have benefited from help with.

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I was given a leaflet and a psychologist consultation was offered so my answer is yes. However, I was and am so desperate to put on a brave face to ease the impact my diagnosis and illness had and has on my family that I haven’t reached out and sought help. I think truth be told, everyone who receives a cancer diagnosis needs emotional support outside of their family and friends, some more than others and those that don’t probably didn’t feel able to or realise their own inner struggles.

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The total extent of my emotional support I was offered amounted to filling in a questionnaire with some very leading questions on it like “do you feel suicidal?”. If I’d answered yes to any of them they’d have tried to psychoanalyze me but that wasn’t the kind of emotional support I needed. I was looking for understanding and a bit of kindness both of which seemed to be in short supply amongst medical staff.

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I hope that you feel able to offload and share on the forum Sarah. Do have a look at topics on the forum, and if there is something you would like to ask, do feel free as someone else is probably thinking the same thing. The support line is also available if you would prefer to talk something through. Best wishes

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That does not sound like a very good experience, and talking through feelings and emotions would have been a more sympathetic way than a paper and pen exercise. I hope you find people that empathise with you on the forum, and realise that many of us have many things in common…fatigue, fear of relapse, panic before tests to name a few. Take care

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Diagnosed with AML 11 yrs ago, no emotional support for any of us, husband, 18yr old daughter & 21 yr old son, late 70s parents.
Think we could all have done with a shoulder to cry on & off-load.
However, having volunteered for Macmillan I know that this has changed dramatically at my local hospital.
A big step in the right direction.

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Hi, I was struck by your post because you outline so clearly a generational family unit. It also made me think that no matter what people’s ages are perhaps they all have ever changing emotional needs during and after life shattering news and I would actually say perhaps outside the family unit. Perhaps, in a family with really good honest, open communications that can be absolutely enough. However, in hindsight, I was really bad at instigating and actually having really good honest, open communications because we are not good at that as a family and I was struggling and couldn’t even explain the diagnosis, as I did not understand it, let alone even go to my emotions. Thanks so much for your post.

@Corfu80 makes a very good point about the different generations sometimes needing help. My youngest son used to talk with a teacher that he got on well with, and I would exchange emails with this teacher too. Some people were offended when my children and ourselves joked about my HL, but we are extremely proud of the care and support they gave us, and now offer others.
My parents were, and still are, a problem. I hate the way my mum talks about people with illness…“Poor Louise…”. My aunt told me (at my daughter’s wedding) that my Dad was angry about my illness. I knew that, but what was I supposed to do with someone who never listens anyway.
I hope that Maggie’s centres will expand. Perhaps there could be a family conference with a CNS a couple of months after diagnosis, where any family members could attend to ask questions and find out what is available to them.
Unfortunately all this costs money. Eek!

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Sadly not, I wasn’t and it was 4 years ago

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Hi all
I feel I was extremely lucky as I was offered emotional/psychological support when I was initially diagnosed with ALL, and was even given support to help limit the impact of my diagnosis on my child who was very young at the time.
Since then I’ve had access to psychological support through my treatment hospital but I have had to ask for a referral to access this.

I would like to see all patients in all hospitals having regular discussions about emotional well-being - perhaps every 6-12 months? as part of an holistic care check-up.
Often our clinical teams just focus on blood tests results and physical symptoms, and other aspects of our well-being tend to take a back seat.

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I should add to my last post & say that perhaps the frequency of a holistic care/ well-being assessment could be discussed and agreed between the patient and the clinical teams, as all patients are different & can have very different needs at different stages of their treatment & recovery.

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I was diagnosed in April last year, over the phone, and had to wait 3 weeks to see the hematologist. We felt totally lost. Luckily when we saw her the CNS was there too and took us into another room after to check we were okay and answer any questions.

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@GillM, you make some really good points and I also agree with @SP7 I have found and heard so many times that the consultant just looks at the bloods and symptoms and that it is the CNS that is there to answer questions and for the emotional and practical support. I think at that point I was in my fearful, dazed, isolated bubble and I would have wanted to be offered emotional support and not even thought of asking for it. It is lucky this forum is here for us to share our innermost fears, thoughts, feelings, symptoms and practicalities. Take care both of you and keep posting.