EPISODE 3: PSYCHOLOGICAL SUPPORT FOR STEM CELL TRANSPLANT PATIENTS
In the latest episode we spoke to Haematology Counsellor Shelia Hegarty about her role supporting transplant patients at University College London Hospital. We discussed the huge emotional impact that a transplant can have, and how patients can manage their well being and when to ask for further support.
Full transcript (auto-generated)
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Welcome to the third episode of the patient services podcast at Anthony Nolan my name is Billy and I'm the patient
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communication and insight coordinator.
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This series of podcasts we hope to bring you insight and support into the experience of having a bone marrow or stem cell
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We'll be looking at what life before during and after transplant can be like talking to health professionals for tips and
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advice and patients have been there themselves will be sharing their stories and personal experiences with you.
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We hope you find them helpful and informative.
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today I'm joined by Sheila Hegarty a haematology councillor working as part of the haematology psychology and counselling
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team at University College London Hospital
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Having a stem cell transplant is a life-changing event and dealing with it impact on your everyday life can be a
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The emotional rollercoaster often described to us by patients to contact Anthony Nolan can be really hard to navigate
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without support and guidance.
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Today's Sheila will be talking to us about her experiences of supporting the specific patient group and giving us her
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expert insight into the psychological concerns experienced by transplant patients hello Sheila thank you for speaking with
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us today. It's very generous of you to give up your time for Anthony Nolan
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Can you start by telling me how you came to specialise in counselling for haematology patients?
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Sure and I'm very glad to be here to talk about this. Thank you for inviting me. I've been working at uch for 12 years and
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when I started I was the only.
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counsellor working in the department in haematology
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Part of my role, I was asked to come to develop the role within haematology across inpatients and outpatients and right
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through the journey. So that's happened to us. We have a much larger department we are four in the team. So we have three
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cancers one psychologist and a couple of trainees always there as well and I think that reflects the complexity of people
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are going through and the growing needs for the Liverpool yeah, yeah.
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Are there any common psychological issues or concerns you've noticed in those patients that you see who go through
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transplant I think.
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the most important thing to say first is that this is a huge and daunting experience for most people going through it
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absolutely it comes on the back of having had a diagnosis and and a lot of other treatment and then facing this is
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daunting and it's huge, so it's very natural and
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Normal to feel a lot of things of the feelings I T to feel worried to feel low have a range of emotions really.
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Which people experience and which are common to most people that people will experience them in different ways at
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different times across that that journey really from diagnosis right through treatment and a specific concerns about.
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the transplant process or elements of the transplant that you find that the patients you see
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I want to talk to you about
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Very very much from person to person which again is human really isn't it? But I think they range from people being very
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worried about the treatment itself and the impact of that and people are told by clearly. I know by by the medical team in
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advance that they are facing a lot and that there will be side effects so people are aware of that and worried about that.
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There are also often worried about family but partner's children.
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And so are very aware of trying to protect them as well.
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The people are mainly concerned about getting through this about knowing this is going to give them a chance of life of a
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cure and so they want to do it but also wearable.
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goes with it so I guess in the beginning is often a lot of
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Worry but also hope about this will be.
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And so I think that changes along the way.
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At different times and at different stages in the process.
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No worries will be different at different times.
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Is there a time in the process via pre during or post transplant that people tend to need the most support?
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I think that fairies again as I said from individual to individual but I think one of the things that can surprise people
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quite a lot is the post transplant we get a lot of referrals and that's open when people need most support ok because
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although the beginning of the process is shocking they've been through diagnosis tonight facing this extra treatment.
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they're kind of
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You're on a journey really that kind of told her they have to go through there weather going to be in hospital. So they
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hopefully make preparation for that answer his staff to clinical nurse specialist and someone will help them with that so
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that is its own challenges and then people are going through it getting through that.
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When they leave hospital after a long period in a can be weeks can be longer and going home when people.
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Relatives friends are very excited. I'm feeling coming through this is really good news and actually they're trying to
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readjust to pick up the pieces of their life 024 - 4 - life and I can be a very different experience often and I think
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that's one of the things that people aren't prepared for ok.
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I think it can be quite difficult to prepare people for that and so they come to you. So they can be quite ready for it.
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Anticipate impact it might have some kind of come to see the medical term for the clinic check-ups to and talk about those
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kind of things that are still going on maybe long-term fatigue may be feeling that just having the energy they used to
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have feeling still on well settling to perhaps a different way of life. Not maybe being at work exactly not being off work
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to look after their children themselves in the same way yet, so a long stage of recovery and I think a lot of a we can do
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that is really put that in perspective and help knowledge that this is really difficult but actually they can get through
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it and that it's new it's different and it will be a different kind of a new normal really as we call it. Yeah, so that
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would be when we
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A lot of people would come into our service and have some work done then, but we also see people in the beginning some
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people might be most anxious.
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Is very kind of coping mechanisms for anxiety coping skills, so that's one of the ways we be helping people prepare in
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We also see people on the ward when people might be ill.
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Worried about family or bored or stuck in there and feeling isolated in a room on their own so we be helping them through
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that stage as well and of course also see family.
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that was my next question actually, so do you see both patients and family and you know if you do see family members what
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kind of issues and concerns to find that they have in comparison to the
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We do see both we offer.
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We offer service to both sometimes we see people together with couples. We might see people with their family in their
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family set up with children and
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there's a kind of bit of mutual concern from the patient and the family for each other so
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The patient will also be that will often be very concerned and worried about their family members their children perhaps
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their partner as well as their own individual worries, but then also the relatives.
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You know the partner the parents the children will be very worried and will not want to.
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Put anything on the patient but also find it quite difficult often to express. What might be going on for them because
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they just want to be there for their loved one really so they'll be talking about their own.
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But also there their personal and the person who's the patient their worries and part of the work. We would do that would
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be kind of illicit from them have their own worries or how they see the future the impact on their life. What's the
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weather like on the patient because it does have a really far-reaching impact and that's something.
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You know with the work that we do with distance to try and prepare them to understand that the support network is
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incredibly important to a patient.
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And so do you routinely see patients pre transplant?
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Not routinely, I wouldn't say although I think it's something that increasingly becoming evident is quite important
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because although people are given a 4.
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What to expect I don't think they're quite given a full.
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Picture of understanding the psychological impact on the emotional impact on them you know of being isolated and I've how
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they can build on their own existing resources right to get into that. I thought I'd like to do we have done a survey with
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our patients in uch people were post-transplant and white post-transplant people at different stages and one of the today
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felt was really large. He said he hasn't been emotionally and psychologically prepared enough physically they felt they
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had but not psychologically they felt it would be helpful so it's something we're working with the team to try and see if
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we do half a day that would be very helpful very helpful and have a bit of running time to a transplant volume to do that
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and I think it could help people build on their own resources and
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Prepare themselves for what's ahead and take back a bit of control of it in that sort of preparation, so psychologically.
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I think some of the definitely something that didn't work we do with patients that people often to say as you just said
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that they didn't feel psychologically prepared and that's something people come to us with also.
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Because I think as you say that lack of control is something that very big and people will be out through that process and
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to just have some charge of something yeah is so helpful Foundation exactly.
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Can you tell me what kind of local support?
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You would refer your patients to.
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I think that's a good question because we
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I work in central London with a very well resource centre. We have patients coming from a long way away.
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And stay with us, they have a good service with lucky really off and people going back home.
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It is more difficult to have to say now we as a team carry on we will have to telephone sessions with people so we can
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offer that the other thing we look we look for people.
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Services and Resources locally there may be support groups in the local area. We would liaise with the GP if we felt that
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was important. So we will do that. Play some work. I look about the services for people. It's not always easy. We yes.
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We're on a support group for all haematology patients, so we don't specifically have.
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bone marrow transplant
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Support group but we have a general one which covers all haematological conditions and we meet once a month for a couple
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of hours and then the group themselves go off and have a meal afterwards which is it means for them. They have people who
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understand to talk to and then they go off and do something social but from within the resort you know connections are
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and people can really link up and
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Have very useful conversations and help each other with different resources that they have used themselves to get by and
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so how does it work having he say it covers the broad spectrum of haematology does it work quite well having tried some
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transplant patients. I'm not transport patients in that.
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In my experience, it works very well sometimes people want something more specific so we might have somebody in on that
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particular issue, but usually it works well and people mutually supportive facilitating at but it's very much about mutual
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support and so people have a more chronic condition.
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May be very helpful to people having more acute where they can kind of see each other's perspective and gain from each
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other. I'm certainly I would say.
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Friendships have built up out of that and a lot of respect for each other's position and the kind of greater understanding
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of the fact that they can be different difficulties but humanly people can each other.
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And do you think everyone having a transplant should have access to your kind of support?
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A lot of people don't need our support.
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But I think the fact I think people should all be aware of it.
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And I think the most important thing really is to let people know that it's as I said earlier on.
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It's very natural and normal to have.
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a lot of feelings of anxiety fear worry
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Etc going into the process like this.
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And so the people are ever so kind of becomes part of the conversation that that makes it acceptable to support. It's ok
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to ask for it. It's ok to say I'm feel this thing. I'd like to talk to somebody that becomes much more as natural really I
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seen the doctor yet as natural as having your nurse as natural having a temperature done if this is something that spot
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the process as well.
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Why do you think if you come across this is all? Why do you think that some patients or family members are reluctant to
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access psychological support is something we experience and I think.
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for a lot of people coming into this they would never
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Really good nearest psychologist or counsellor, so for them it may mean something like.
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What's wrong with me? I must have mental health problems and stigma.
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So we would often like to see people just too kind of in the beginning explained a bit of our service but saying initially
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a chat and people will often take to it is something people worried not going to be as a patient I want.
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Experiences once you get over that barrier people really do use the service very well and see as a talking coping
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definitely fancy. It is adding to their toolkit really of resources on their own.
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alarm going to be more autonomous and more independent cos I can build up their own resources and from the
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Relative for family point of view I think they're just so.
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Holding everything together for the patient and worried about if they start talking about Monday open up and will there be
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hope there's a lot of responsibility and onus on the person who is until you have to keep clearing definitely yeah, so I
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think we would be very aware of that working with people that we would you know want to support them and ignore them
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together and do a lot on their plates as well, but they have to take care of themselves in order to achieve that yeah,
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What advice would you give to patients who are about to go through or are going through a transplant about supporting
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I suppose for me the most important thing to do is say that this is your time and you really have to look after yourself
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for a lot of people.
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I would say I'm I'm being selfish.
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I need to be somebody who generally look after other people or I don't want to put this on my family and I would say this
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is important. You have to look after yourself right now and be kind of if you like selfish about that because that's the
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only way you're going to get through this and that's actually helpful for everyone and it's most helpful for friends and
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family to know how they can be helpful so the more you can let people know what helps me.
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Send them or other people like that and want to help I don't really know what to do. I think.
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I always work with people in terms of their own, but I called toolkit of resources so helping people whatever that maybe
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Don't come through adversity in the past it may be that they enjoy.
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I don't know gone for a walk reading music so any of the things they enjoy building on that offers enjoyable about that.
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What can you use from that to get yourself through this time?
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Being aware that they're going into a room for a period of time in hospital bring with you whatever might be comforting
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whatever might be.
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Supportive be very clear as well.
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Really you're going to be not well for a while and you need to look after yourself and let people know that.
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you can let them know but the
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Play demands of you so people can find it very difficult to do and I know for us we often come across people of any state
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Stewart transplant without has to be reiterated really and again have they got yeah? Well, I suppose you know when people
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have a diagnosis. It's a huge shock as you say and then often times they move into transplant quite quickly.
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Before any of that happen to them they had a life and they had responsibilities and they had a role within their family
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within the workplace and it must be so difficult so let go of all of that but as you say the focus needs to be on them
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getting better and there is an acknowledgement in that is what you said isn't there of the loss of that I hope you lot of
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that comes back. I'll be at maybe a different way. X
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But there is a loss.
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Change under some importance does a lot of important thing about acknowledging that.
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And helping them so that they can also get through this and they have a huge amount of resource.
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That can be that would be hugely vary from person to person, but there's no rule book for this.
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Is very much about what helps you what happened to you when it's difficult.
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Let's build on map.
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How essential is your role in post transplant recovery? I think a 2G sensual I mean I've certainly.
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Had a referral for example for a patient who was 6 years post-transplant local importers of was he was having someone
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going physical difficulty but that had also impacted on his life now broadly and on how he felt about himself and that was
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you to be important and we did some really valuable work together which he certainly has acknowledged so I think.
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It's almost as I said earlier. I think it's almost at that point that I feel worse most the most used yeah, because that's
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the huge adaptation to a different life and I think of someone diagnosed initially does the shop.
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when does getting through the treatment and supported in that by the medical and nursing staff and then is afterwards and
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1-hour what? What do I do now and it said that stage that mentally and emotionally people are beginning to process? What's
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happened and kind of moving from a shock to who what was that all about?
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I'm really being aware of the impact cause.
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cost of diagnosis and
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Discussions about treatment, it's all about getting through this and living but later on as well. How do I live and what
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What is minute I'm like and how do I manage that and just kind of I guess letting the plate settle after the earthquake
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really it feels to me after it was a bit more space for that. It's kind of like the mind has had a time to catch the body
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has gone through really yeah, I suppose there are some people who live with.
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chronic side effects such as chronic fatigue and he said physical symptoms and so there is a huge period of adjustment and
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you're suddenly away from the hospital and away from all of the set of support and
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People to talk to you, you haven't those earliest ages so I can really see how post-transplant is it's really essential to
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Babies people like yourself that they can access to begin to build up confidence again in the fact that my confidence in
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your body in your life in the new way and even with side effects.
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Graft versus host disease the different things people may experience even with that actually I can work this out and how
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do I do that?
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Thank you so much for speaking with us today. It's been really interesting to hear more about the work that you do. Thank
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you very much for inviting me. Thank you.
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Before we sign off. I just want to tell you about some of the ways Anthony Nolan provides other kinds of support the
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listeners who feel they might need some guidance managing their emotional well-being you can find more information and
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Resources available to order for free through our website www.org.
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Some patients find that connecting with others have been through transplant can improve how they feeling themselves for
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online support you can join our patients and families forum to talk to other people like you.
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We also offer a peer support telephone service where you can speak to a transplant recipient who's at least 2 years
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post-transplant by phone.
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Would you like to find out more about this and other ways we can support you and your family please contact the patient
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team at patient info at anthonynolan.org or call 03303030030 chat.
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Thank you for listening today.