It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Please read the house rules and keep this community safe for yourself and others.

Emotional and psychological impact?

Hi everyone,

I saw yesterday's round up of a discussion on the Guardian website about the emotional and psychological impact of cancer. Although everyone's experience was different, the general consensus was that more needs to be done for health professionals to recognise the significance of patients' emotional and psychological concerns. There is also a need for psychological care and support to be a routine part of cancer care.


What do you think? What is your experience of emotional and psychological support?

Amy at Anthony Nolan


  • This is a hard one. The NHS only has so much money - and I, for one, want to see that going into clinical work; however, as the spouse of a post-SCT AML patient, I have also seen at first hand what the lack of psychological and emotional support is like. My husband's team at the hospital were very generous with their time but, necessarily, didn't have the time to spend discussing how we all felt about everything. They tried their best. My husband has recently been to see someone at our local Maggie's Centre (he is a year post-transplant and trying to come to terms with what the impacts on his life going forwards will be - he's about to lose his job, his role and place in our family and society at large has changed), and that looks as if that will really help. It's the first time he has approached anyone to talk to and is so far really positive about it. But by that very fact (that he approached them) it showed to me how much he really needed that help. Support for the family is harder to find. I was shocked by how little hospitals as a whole do to help keep families together. For example, we have a child, but there was nowhere to play with him when we visited my husband in hospital (no playground) and we made do with taking over a table in the Friends Café and playing snakes and ladders. Visiting hours were incredibly generous (there weren't any and you could go any time) which was fantastic. Leukaemia Care run support groups locally - but they are always during the day and for those of us that work they are impossible to get to. I'll be interested to see what other people post!
  • I can't fault the support provided, as a bereaved parent. Clic Sergent have been brilliant and have come out numerous times to see us. Issy wasn't in need of any psych support after her transplant- but neither was it offered as standard....
  • I next to no emotional and psychological support, but then I felt that there was only so much the consultants and nurses could take on- their jobs are so stressful and difficult as it is, and if they take on all the patients' emotional issues it could bring them down themselves. They empathised with me but didn't get too close or ask how I was doing emotionally very often. Luckily, I had my family for that side of things, and they were spectacular- couldn't have done it without them :)

    I am now having counselling to deal with everything that happened to me (I developed post transplant lymphoproliferative disease after my transplant) and ended up in intensive care for a period of time with much chemotherapy afterwards, so it's been quite a ride. I didn't feel like I could cope with counselling whilst I was still having treatment as I felt I had to focus on getting through the treatment and the physical aspects of what was going on. The counselling is really helping now though, and I feel much better :)
  • I didn't get any phycological support from the hospital until a few years later when I was put on ivig infusions and one of the Tct ward staff had me speak to a phycologist on the ward- tbh I really needed the support and my Clic social worker was fab at talking to be but loosing friends, my life and having my world turned on its head really did take it's toll- I've since revived some support but I wish there had been support in place from isolation onwards
  • I didn't have any 'routine' emotional or phsychological support throughout my treatment though I did reach a particularly low point early after my transplant which the nursing staff recognised and referred me to a phsychologist.

    This was just after being allowed home for the first time after my transplant which I saw as a major milestone. Unfortunately as I was discharged on the Friday, I was starting to get a sore tongue which worsened over the weekend. This turned out to be a fungal infection in my mouth and became really sore by the following Monday when I was due to return to hospital for a check-up. Needless to say I was readmitted to the transplant unit and found myself back in the room that I had only left on the Friday.My mouth and particularly my tongue became so sore it was nigh on impossible to eat, and difficult to speak.I waer a partial upper denture and had to remove this due to my mouth being so sore.

    I ended up on a series of four different mouthwashes, which had to be done about 4 times a day to clear the infection and it was several days before there was any improvement.

    During this time I became very low and the nursing staff, recognising my depression, asked if I'd like to see anyone. For the first few times I bounced them off, not regognising my own problems, but in the end I gave in and allowewd the phsychologist to be arranged. She visited a few days later by which time my mouth was starting to feel better and I was therefore feeling better in myself. It was still worth her visiting though as it was good to have someone to talk to. I should probably have done it earlier.

    If you have the need or opportunity to call on phsychological support, please do so. Having someone independent, who is not necessarily part of the medical team does help in my experience.
  • For me I think one of, if not the major hurdle that needed to be overcome was the acceptance that things will never be the same as they were before the chemo, transplant or whatever procedure took place. Since this was embedded with me I have been able to calibrate my expectations from life and view setbacks in the context of steps on the journey (HATE that saying) to my new normal. I tried to fit a few more buzz phrases in there - but I think that's all of them!
  • I agree very much with KW13, this is a hard one.
    I went in for transplant feeling the same as I had done for years with reasonable fitness levels, working and always being active and at this point facing an uncertain future. I was self employed and gave up work 2 weeks before transplant.
    I found the isolation particularly difficult I wasn't able to concentrate on TV, books or music. I had no shortage of visitors, my wife spent all day with me and my children visited usually in the evening.
    I became very emotional and down. I think for the first time in my life I wasn't in charge of things. I 'd always been the dependable one, the one with the answers and there I was useless.
    The transplant unit were very kind but the nursing staff don't have the time to sit and chat when the visitors have gone.
    I was offered psychological support and met an in house psychologist, she was very kind and we had a chat but I decided that what was on offer was not for me! At the time I made the decision to concentrate on recovery from transplant.
    I was still finding it very hard even when discharged to come to terms with what had happened. Then 4 months later I was readmitted with pneumonia, a week in critical care and 3 further weeks in isolation was a real set back.
    If I was honest I think maybe some support would have been useful and would urge anyone to consider it.

    Eventually with the support of my wife I went to a local cancer support centre, after weeks of saying it wasn't for me I have to say the experience turned me around. I met with amounts of kindness you could hardly measure, other people with cancer and experiences that you could not believe. All this took place in comfortable surroundings and offered 1 to 1 talk time, complementary therapies, group chats and relaxation time. We even had lunch and a glass of wine.
    It did really help to talk and compare notes as we all have a different story to tell.

    This particular centre is pretty unique and includes support for carers and there families, it has some funding from the local health trust but is mainly funded by charity donations and is based in Stockport.
    If any body lives in that area I can give more information.

  • Hi Peter is this Beechwood Centre ? I think my husband would benefit from this but he isn't really a " support group" kind of guy. He's 48 and had a bone marrow transplant 15 months ago and has had life changing GVHD .
  • Hi Christine, if your husband doesn't want to go to a support group meeting at this stage, he will be more than welcome on here. We've all been there and experienced the same difficulties. I've had skin GvHD and I know others have had other types, so he will find lots of support from the members here who have similar experiences.

    Perhaps if he shares his experiences and concerns with us on here initially he will become more confident in meeting others face to face?

  • Hi Christine,

    Yes, the Beechwood Cancer Care Centre, Stockport.

    You may gather from my post above that I never thought it would be the place for me. I could never imagine myself talking about my illness to anybody but I can honestly say that my experience there completely turned me around. I would recommend it to anyone.
    My wife was the driving force to get me there, she rang them without any other referral and they were most helpful, they sent us information,we sent some information back and were invited for an interview. They offered me a Programme which I joined. I was about 10 months post transplant, GvHD wasn't my main concern, I felt very low and emotional, I didn't think I was getting better quick enough.

    My experience was a day away from home completely chilled out and really just chatting with others most actually worse than me. There was counselling which was really just a chat and a chance to talk about the treatment or not, it was all very informal, there was a session of complimentary therapy which was optional and which I got to enjoy.

    The centre is there for carers too, we have kept in touch by going to events held through the year, especially at Christmas. We also keep in touch with friends we met there.

    I wish you could speak to my wife, she almost dragged me there but I am so glad that she did.

    I was 63 when I had my transplant in May 2012 and retired.

    If I can help further please get in touch, as Steve suggests,ask your husband to have a go on the forum here, we are here to help and offer support to each other.

  • Thanks Steve and Peter. I will suggest the forum however he can't see that well at the moment because of GVHD of the eyes !! I've emailed The Beechwood Centre so will see what happens.
  • Hope you get a helpful reply from them. Hope also your husband is getting the help he needs for his eyes, one thing about this whole process is patience because I'm sure things will get better.

    I have got flu at the moment, went to clinic last Friday for routine 4 month check up, had what I thought was a cold but was admitted with temp of 39! Had 4 days in while they identified a flu virus and sent me home with anti biotics and antivirals, check up again yesterday sent home with more anti virals, steroids and inhaler to help with cough. I'm assured it will clear up soon. It's just after transplant these things take a bit longer to get better.

    Looking outside at the garden I'm determined to get better and cut the grass before my wife suggests getting a gardener to do it.

    Best wishes
  • Going back to the original post.
    This is a real toughie for me personally
    I KNOW it is every bit as important as the medical care.
    I have had Hodgkins 5 times now inc my current relapse, ( 31 years ) each time before, the increasing emotional and psychological pressure has mounted. I suffered for years with deep depressions due to this illness from the highs of pretending it didn`t matter to to the days when i just wanted to kill myself. It is highly underestimated how important it is to help with these issues.
    Having survived 2 transplants simply to go back to work (which is harder all the time) simply to pay off the bills incurred whilst you cant work is seriously depressing and patients need all the help in this area at the SAME time as the medical care.
    The benefits system is useless in this area also and needs to be improved vastly.
    The last thing you need when having a transplant is to be lying in hospital worrying about if your partner can pay the **** rent !

    As i am now starting the transplant roller coaster for the 3rd time i am glad i have my previous experience to help me along as i know i will need it. The NHS simply does not understand how much of an impact waiting 1 and a half hours to get a parking space at the hospital has on some one`s mental stability when they are waiting to see the consultant who is going to tell them if they might die or not lol!
  • Hi Ajax,

    I think you make a good point there as financial security is probably one of the biggest worries whilst you're going through treatment and I'm not convinced there is enough support in this area. You should be able to concentrate on getting through and recovering without having to worry whether your bills, rent and mortgage are paid and whether your family can eat.

    I was really lucky as I was on full pay throughout my treatment and returned to work (albeit on light duties) within the 12 months period that I was covered for, but I know the majority will not be so fortunate. We don't choose to go through this and if the welfare system was in a better shape there might be better support for those that really need it. It results in people having to go back to work probably sooner than they should and that must affect their recovery in some way?

    Hospital parking is also a shambles at most hospitals and there's nothing worse than sitting in a car when you feel lousy, with a banging head and ready to throw up whilst you're trying to get into the car park. I was treated at Leicester Royal and I knew that every journey there would result in queuing all around the perimeter of the hospital to get into the car park. I couldn't fault the care I received but getting into the hospital was a nightmare and really debilitating.

  • Hi Ajax

    I completely agree that the psychological and financial impact of cancer and its treatment remains one of the big issues in oncology. This is a common theme raised by lost of patients that I have worked with over the years. Anthony Nolan are working very hard at raising the awareness of the psychological and financial impact of having a stem cell transplant and trying to initiate changes but as we all know this takes time and is not a quick fix.

    As you have said having the past experience equips you to know what to expect and need in terms of support to get you through. So being organised and ensuring that you are referred to the right people is essential. I am sure you already know what is available to you but you should have access to a welfare officer within the hospital that can advise you on benefits and you can also speak to citizens advice. Both Anthony Nolan and Macmillan offer grants to help whilst you are having treatment too. If you feel you need help emotionally again you should have a counselling service available at your transplant centre, but you can also ask your GP to refer you or contact Macmillan. On our website there is a list of charities and services that can also help https://www.anthonynolan.org/patients-and-families/resources-and-information/more-information and of course there is this forum.

    Best wishes
  • edited July 2016
    Thanks Hayley

    All stuff i did not know believe it or not and maybe help now exists that did not before ! Many thanks
Sign In or Register to comment.