Preparing for a transplant

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Welcome to the first Anthony Nolan patient experience team podcast my name is Billy and I am the patient and families

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officer.

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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.

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During and after transplant can be like and talking to health professionals.

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And patients have been themselves will be sharing their stories and personal experience.

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I hope you find them helpful and informative.

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I'm doing today by Hayley Leonard who is one of our Anthony Nolan specialist post-transplant nurse.

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working at the Royal Marsden Hospital

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Hayley now also works within the patient experience team at Anthony Nolan head office.

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3 days a week

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Supporting our work with patients and their.

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Today we're going to be looking at preparing for a bone marrow or stem cell transplant what people can do for themselves

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pre-transplant to aid recovery and what Hayley advises her patient?

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Hello hello welcome. Thank you for being our first guest on our first ever podcast. Thank you for inviting me. Can you

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first of all tell me a bit about how you came to be supporting Trump

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So I've worked the patients with blood cancer.

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qualified in 2002

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We worked in the world looking after patient when they're having their induction chemotherapy.

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As well as patients who are having a transplants.

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I did that for about 8 years and I worked my way up to senior staff.

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team as a transfer

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the patients head transplant

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This was a really.

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Good learning experience for me as I am.

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how much goes into

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Organising transport that we adequately prepare the patients before they go ahead with a transfer.

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I want to realise how much support they needed after the transfer.

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About 18 months ago.

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And for an auntie Nolan transport.

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He jumped at the time. I really have to reply yes, and I was really really fortunate to be success.

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Very lucky to have it so now my role is to provide information is.

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recovery

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not working

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all phases of the journey

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So, what are patients main concerns?

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When they understand that a bone marrow transplant, it's going to be part of their treatment and how do you help them to

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deal with?

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Well, it depends really for some.

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the weather been having a treat

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some point

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Those patients had a bit more time to go away and have a read.

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understanding

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The process of what's involved and get themselves ready for it.

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And then there are the patients who may be the decision.

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This is a bit more.

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a bit overwhelmed

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I think two of the main.

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initial concern

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the transplant procedure itself

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Because we don't find that there is no chance.

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Often conjures up thoughts of surgery and operations when you're fat.

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The procedure itself is very simple and it's just like having your medicine. You know that we have.

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address for blood transfusions, ok

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Why find the more difficult conversations are?

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When we talk about recovery, I think because the focus is on finding a donor.

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not all patients consider, what might happen after the

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They think that the recovery will be very similar to and I just have a chemotherapy alone.

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It's hard for you to sort of talk to them. They might not realise that it might be a more long-term exactly that tends to

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be the main the main issue. Is that they think they're in a few months after the transplant that can be back to normal.

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in fact it's going to take a little bit longer than

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Prepare them for the United for the post.

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And I think is a Healthcare professional we need to send.

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Especially the very recently been told they need a transport.

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To wear that we only giving people the right information at the right time otherwise you can get a bit of a welcoming and

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and model.

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So when you are talking to patients and their families, what do you feel is important to communicate?

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Because if I was to sit down and talk about everything that might have.

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It might happen in 9 x 6.

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You tend to focus on the main points like this infection the tea.

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Patricia

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of course graft-versus-host disease

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when talking about GBH

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This is an expected side effect and you know can be seen as a good thing.

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Just as long as we can control.

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otherwise after transplant when it does happen

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On patients can panic and think that this is a Bad Sign something has gone wrong.

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All things being born do we talk about the practice?

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the pizza on Spotify

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So we need to look at the kidney.

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Santander long as well just to make sure that they are functioning well.

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All the patients will need an alarm for in so we need to talk about the procedure of getting that.

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And it will send you lots and lots of blood.

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I think the practical side of also very.

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Harrod's address

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Think about the psychological.

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to do is try and sit down with the patience and

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Have a conversation with them about how they can cope so forward.

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Expectations are with the recovery and who they support network.

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To get to know it's going to be you know that person is going to take them home.

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It's a huge responsibility.

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Someone to look after a patient after transplant and often.

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The one that's doing it often feels very vulnerable so I think to build up a relationship with them.

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Have a good rapport with them.

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Whoever this is actually there for them at the other end of the line is really important.

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Them to know.

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What to expect when I get home?

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Finally one of the important things to talk about is you no goals and expectations.

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I think it's really really important.

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Families have something to strive for.

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Like going back to work.

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Burry Port

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They might want to plan a holiday or attend a family a big family occasion of a wedding or something.

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I've been I tried to spend some time with them talking about how we can.

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I'm trying to achieve.

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Realistic as well so we try and manage those expectation.

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That's a really nice thing to actually talk about something positive.

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It is positive not talking about all the things we're not letting them do it all things they can't do.

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Talk about right. This is what we're going to do know when you're better.

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Let's plan for that.

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Focus

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You mentioned that there's an awful lot of information to take in when it comes to having a bone marrow or stem cell

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transplant. Do you find that some patients?

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Don't want to know all the information.

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And we need to respect that.

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In some situations the patients don't want to know anything but the family members want to know everything ok and again.

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We need to respect that as well.

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Is part of my job to ensure patients understand what treatments are going to go into?

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Spectre side effects, but we do have to balance that.

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information overload

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Suggest that patients and their families don't try and take everything on.

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I think it's almost impossible to try and understand everything.

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suggest taking in stages

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Focusing on what's important to you at that time so looking at it in a more short-term and more manageable.

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Exactly, yes, you're right about it being manageable.

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Play Wetherby pre transplant.

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Or join the transplant or posting a 6 months postpartum.

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focus on that time

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I also suggest.

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Use the seven-step glitzy the 7th.

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Next Steps after the trial

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I think they were great resource.

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You can dip in and out of and you haven't got a read all.

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I know that a lot of patients are concerned about the search.

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So I wanted to ask our patients communicated with regularly throughout the search for a donor and how do you explain this

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complex process to?

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Yeah, I think they should be kept up today. I know that when I was the tripod coordinator. I wish I had to keep the

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I think the process is that uncertainty?

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Even if you have a patient with lots of potential.

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We still need to contact the donor.

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Ensure they are still willing to donate.

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Organise a day and then have passed medical.

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Obviously, we are very successful.

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Trying to communicate this process can be hard.

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Because ultimately patients just want to know that there's a donor out there.

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It can take several weeks.

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receiving treatments most of the time

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They have to be led by the owner's availability.

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I know we try and plan.

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Well ahead of time sometimes it is only made with a few weeks notice.

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I completely understand why this is so difficult for the patients and their.

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So tell me how can patients help themselves to prepare mentally and physically for their transplant. Do you have any tips

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or ways of managing that you share with your page?

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I have no idea how that must feel.

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Imagine that one of the hardest things is at the hospital.

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Tell you what to do.

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No longer allowed to do.

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I guess there's this huge.

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Loss of control for patients with must be a really difficult adjustment to make exactly I agree.

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Do trying to spend a lot of time with patients and their?

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Talking about how we can take the control back.

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Talk about taking responsibility for looking after their body and mind.

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Need to take control of their fitness and diet.

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84th

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I will make sure that I eat well.

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I'll make sure that I keep moving.

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Try to exercise for the transplant.

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if you can

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Will be having treatment so when I say exercise.

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Give me a 10-minute walk.

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Yeah, cos I know that some patients can be a bit overwhelming by the word.

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I guess it's cos they already coping with so much but so you're suggesting that even some gentle movement can be really

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beneficial anything really so even things like gardening more you know.

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If you're into that some housework, you know that sort of thing.

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Just that movement and moving yourself moving.

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And keep active is really important.

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Search the exercise of any kind of physical activity reduce.

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related fatigue post transplant

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before the transfer

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So I can't really episode enough how important.

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Exercise or just moving.

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Not just before 12 but also after.

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They look at the antenolla.

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excellent Resource and it's actually

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presented

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Patience and a lot of advice and there is directly from the page.

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can't get any better advice and

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He also mentioned a little bit about eating. So what do you mean? What is there a strict Diet before transplant or is it

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just a matter of trying to keep up your appetite during your treatment?

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You'll have some period of time we will be having any treatment so you won't have a neutropenic diet that that.

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Use that period to try and enjoy the eat the food that you enjoy and that's really important.

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Which might put a little bit of weight?

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Some point you will lose.

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So if you can manage to put a little bit of weight before you start and give yourself a little bit of leeway.

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post transplant

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a real problem for some

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I think just bear that in mind.

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Is your kind of leading up to the transport?

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And so then also.

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You talked a bit about mentally preparing with the support.

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people that might be around

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Tell me a bit more about that. Yeah, I think you know it's not just about.

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Physically I think we need to focus on.

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We also need to concentrate on.

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the psychological impact of a transplants

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Think about how your support will be afterwards, will it be?

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You know your spouse your family members friends.

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Probably all of them.

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Play will be a tough time. So you know you need to use the support.

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Support help you through.

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be mindful that

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You is going to affect your you know your loved ones those people that live with you.

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people that care about you

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For the person that's going to be caring for you the most make sure there's someone there for them as well. So you will

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come and look after each other.

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things that help you relax

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What things that you enjoy so?

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Massage therapy or art therapy.

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You can see if you can organise this either through the hospital.

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all ok if you can

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struggling

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You know that you might struggle.

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This is really normal and I completely.

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normal expected

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Effect of the transplant I would imagine if we speak to anyone postmaster at some point.

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I started talking to talk time.

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Consultant and nurse GP family or friend, but if you let someone know then we can refer you for support early on.

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This could be used to support you throughout your recovery period so I would imagine that if you didn't want to see like a

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mental health professional or something like that there might be some wait time.

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No, that is the case so whether it be.

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counsellor

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Relaxation therapy or whatever it is you feel that way.

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There is often some sort of waiting.

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So if you feel that your work, you know you are someone's going to be support.

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At some point you start feeling that you know you are struggling at.

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So much easier to just mention it earlier on.

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Can get the support for you early?

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That's better than feeling low and have it away.

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And also that if you do decide it that when your appointment comes around that you don't need.

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You so much easier to cancel it.

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I think finally you need to think about the practical things so things like finance.

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University

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Can you put this off until after the transplant that you might not feel up to?

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At least 6-months so you need to plan for that.

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University

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Fit note from doctor.

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Even ask your nurse to speak to HR department if you think that's necessary.

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Macmillan Lantern Nolan offer grants so if you think that you're going to benefit from that then.

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You can do an application.

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Can take time.

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So do it now.

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It's all organised when you're recovering.

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You don't have to worry too much about it after.

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If you're not sure what you're entitled to.

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help filling in form

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and as you mentioned you know people going through the transplant they have others that support them so maybe you a friend

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or a family member could also

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It sounds like it's just really a good idea to be prepared as you don't know what's going to come post exactly yeah, and

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then you can focus on you a focus on the diet and exercise.

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And looking after yourself mentally you know.

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You can focus on that work without having to worry about them.

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The things you know they cannot be in place and ready to go.

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What do you enjoy about your job?

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I genuinely feel very lucky to have a job that I love.

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Honestly never get up for work and dread the thought of going in.

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I've always enjoyed getting to know the patients and their families.

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Relationships with them and support them through their Transport journey.

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That was one of the main things that attracted me to oncology.

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the whole idea of

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someone

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The journey and I'm very lucky that I can do.

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Obviously, this is a very very serious subject and an anxious time.

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It's really important to smile.

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laugh

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Some very fine people.

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Very privileged for that.

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sound like a bit of a cliche but

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You realise that you should be grateful for the life that you have.

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And after that thing you was stressing about really work.

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I think I owe it to the Patience to think.

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Tell me about when you find it difficult as I'm sure it can be difficult at times. How do you take care?

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how to build good relationships with

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at the flip side to that is that

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Not going well.

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Really struggling to beat up.

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people or situation

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Sometimes we can't and I know that I really struggle with.

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You have to try and switch.

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There will always be that patient that you think about over the weekend.

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To try otherwise, it will start to affect your family.

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I have a very busy life outside of work. I have a 9-year old son and a very large.

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You both keep me on my toes.

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Family and great friends and who I always be known.

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on a regular base

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Is having a lot?

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but I also go down there quite a lot on my own and that's a bit of time out for me and

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space yeah

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Yeah, just to get a bit of headspace.

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So my final question today is if money were no object.

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What additional support would you like to see a transplant recipients receive?

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question and the two main things that immediately spring to mind

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I think every transplant centre should have a postcard.

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I think the last 30 months have been in this role.

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Feedback from the patients and their families have all been very positive.

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it's made a difference to the

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positive feedback

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I think the patients need a dedicated key worker.

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recovery

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Someone that is based within a team.

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troll

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Dedicated to the patient and their family.

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I'm talking about how hard is the recovery.

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Obvious to me exactly that you need someone.

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music

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Who is train?

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You can spend time with those patients and their families and help.

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and I have spoken to lots of patients who have echoed those things especially the taylored Cycles

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For patients and families it seems to be an area that needs some investing.

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thank you for speaking with us today Hayley I think what we

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That will be really helpful for patients and thank you for listening to our first podcast if you find it useful. Please

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share it on Facebook and Twitter and let us know what future topics. Do you like to hear this?

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You can contact us at patient info at anthonynolan.org with your ideas.

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And you can also speak to a member of the patient experience team at this address.

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If you need some support or have questions.

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We also have an online transplant community that you can join on our website which allows patients and family members to

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speak to each other and get advice from transplant recipients who have been through the process.

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This can be really helpful for pre-transplant questions.

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For more information on stem cell transplant and recovery as well as free resources that you can download an order you can

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visit our website.

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anthonynolan.org