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Here to support you the Cornwall Cancer Cafe podcast with me

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Matthew Clarke and also with me Emma Coombs. Thanks to the National Lottery Community Fund for supporting this podcast

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So we’re back with the Cornwall Cancer Cafe podcast and this week we are talking about

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blood cancers

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Well, we’re not actually talking about the blood cancers

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But the support group for lymphoma in Cornwall, which I’m a member of you had a question, didn’t you?

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Yeah, I don’t know an awful lot about lymphoma. So I wondered if you could educate me

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so lymphoma is a

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kind of blood cancer and

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I’ve had non Hodgkin’s lymphoma and there’s Hodgkin’s lymphoma. There’s 60 different types of lymphoma then there are other

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Blood cancers, which aren’t lymphoma such as myeloma. There’s also

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Well, there’s loads of different types. I’m not going to go into them all but

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This group which we’re going to talk about today is one that deals with mainly

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Lymphoma, which is Hodgkin’s lymphoma or non Hodgkin’s lymphoma and I’m not going to get into the difference in those either

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This is an important point where I say I’m no expert. I’m not a consultant. I’m not a doctor

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I’m not a psychologist and I’m not a counselor. Are you know none of those things? Okay, so

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if you have

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Lymphoma or any kind of cancer or you’ve been diagnosed or you’re in treatment

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Don’t ask us

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Always talk first of all to your consultant or your cancer nurse specialist

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Yeah, or your GP obviously or your GP obviously indeed. So

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We are going to meet Mick Howell

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he’s the chairman of the Cornwall lymphoma support group and

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So I first of all I got him to tell me how it became apparent that something was wrong my

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diagnosis

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Occurred in 2018. I was actually living in France at the time and

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Was taken ill long story short. I was

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examined

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tested

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various tests and

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The upshot of which was lymphoma was diagnosed. It came completely out the blue

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yes, I’d had symptoms, but only for about 24 hours where I had a blood loss and

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No previous history nothing like this in the family. I got in the system at Trilisk an excellent

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cancer treatment

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Center as I’m sure many of your listeners will already be aware of I had a round of treatment that lasted about six months

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I’ve been elected to go for a maintenance program of

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routine injections for about 12 months

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And then I lasted about a year and a half

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without any medication whatsoever

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then for

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Reasons unknown I relapsed

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So a second round of treatment started and that that went on until

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July of last year

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And then I got the all clear again CT scans and and so on up to now

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I’m still I’m still being monitored, but I’ve still got the all clear

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Okay, so many people won’t know what lymphoma is I mean when I was diagnosed

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I said you’ve got that my consultant said you’ve got lymphoma. I didn’t know what lymphoma was

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Well nor did I I mean I understand that I mean lymphoma is one of a number of different blood cancers

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There and there are two main types of lymphoma. There’s Hodgkin’s lymphoma, which is

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I’m not a medical person, but that’s more to do with red blood cells

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it’s a little bit more common, I believe in younger people when the

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Prognosis is seems to be quite quite good with Hodgkin’s depending on when it’s caught

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Non Hodgkin’s lymphoma has got quite a few variants and again depending on what stage it’s caught

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Determines, you know the level of treatment and its success a lot of people have heard of lymphoma

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Sorry of leukemia

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And lymphoma is kind of in the same category, but it is different and there’s myeloma is another

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Type of blood cancer and lymphoma is actually about the fifth most common

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Cancer in the uk he relapsed. I relapsed twice when I was on my first lot of

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Chemotherapy, it was called our chop chemotherapy. I went on a drugs trial

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which was meant to

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Provide a drug which would stop or prevent that relapsing

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And I relapsed

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And I was told I was actually on the active part of the drug trial. So

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It just shows how tricky

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Non Hodgkin’s lymphoma can be but there are so many new treatments now coming through and I was

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Well, we were talked fairly recently. We were talking about how the development of new treatments

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Is such a good mental health support for cancer patients to know that if

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One treatment doesn’t work

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Then there are lots more coming through and actually I I just recently saw

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about a new

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treatment being developed

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for pancreatic

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Cancer which was in the news very recently a tablet which

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Was a big breakthrough, but you know, obviously there’s a long way of developing it before people can have it

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So this it this really does help you get through life knowing that okay if I relapse

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There are so many different possibilities

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Yeah

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Cancer research they they’re just doing amazing work aren’t they and like you said knowing that

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If whatever’s whatever you’re on isn’t working for you

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Hopefully there’s something else that they will be able to offer you

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Be it a trial or an older treatment

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Everybody is is different. Everybody’s makeup is different. Everybody’s cancer is different

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So what works for one person’s cancer might not work for another person’s cancer

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So it is it’s just incredible to know that they they’re still working out there for us

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And I suppose one of the things about he’s running this support group which helps

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Lymphoma patients

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Uh talk amongst themselves about their experience

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I wanted to get his take on why it is important to have a support group

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Well, I felt lost to be perfectly honest. Um, you know, I I was diagnosed as I say in france

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I came back to the uk

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Um, you know, I I was initially put on watch and wait

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Um, because you know, my condition had been stabilized and it wasn’t felt necessary to start treatment and

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You know some people have a really tough time with treatment. So, you know, I can understand why

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My consultant said well, let’s not start treatment until we really have to

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um, but I you know that in some ways made it a little worse because then

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I’m watching i’m listening to my own body. I’m thinking is this right? Is this normal?

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and um

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It was really quite a tough time to begin with and I was diagnosed in january of 2018 and I didn’t join the group

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until july

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By which time i’d started treatment and you know virtually all the mysteries and all the fears and all the anxieties

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Were not instantly resolved but put into perspective and you know, I found it tremendously

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Motivating and and you know, I like to think of myself as a positive person

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But I found you know, I came away from that first

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One to one meeting with you know, about half a dozen other members of the group at that time

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Thinking i’m not alone

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What i’m going through both mentally and physically is normal

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And you know, there’s there’s people there to help. Yeah listening to that hearing mick talking about um

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Monitoring. Um, I was much the same as well. You become hyper aware of your body and you’re you’re listening out for your body

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So knowing that you can talk to other people about it and hearing them saying oh, yeah, i’m doing exactly the same thing

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um

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Having a support group is so so important, isn’t it matthew?

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Well, it is and and I I think also to hear people who

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Have been through treatment a while back as well

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And know that they’re still there to to have this conversation is a massive support

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Yeah, because you don’t always want to be running to your gp or your specialist

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I mean what how how great is it to be able to be part of a group and say to a group?

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Oh, i’m feeling like this or i’m i’ve got a bump here or a lump here or i’m feeling a bit coffee or

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You know if if you have any of you felt like that and someone might go back and say oh, yeah

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I felt like that as well and it was because of this or someone else might go back to them and say

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You need to go and speak to your doctor. So it’s just nice to have

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A group of people that aren’t you know, you’re not badgering your doctor all the time

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You do feel bad about it. I think I’ve thought i’m taking away some time from someone who is

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Currently in the middle of being diagnosed who needs that initial

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You know help right now. I feel like i’m getting in the way

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Yeah, there’s that guilt thing going on all the time, isn’t there?

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But if you’re part of a group if you’ve as someone that’s sort of like I suppose at the end of i’ve so i’ve

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Because i’ve finished my treatment now. I feel like i’m someone that there’s that’s at the end of treatment

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But i’m happy to give my time to talk to someone that’s that’s at the start of treatment

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So those little questions that they you know, they forgot to ask

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The ones that aren’t that you don’t have to talk to your doctor about the ones that are

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You know, can I do this at home? Can I do that at home?

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It’s great to have that group because you can say to them, you know

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Am I all right to do the washing up and someone might say well you are but don’t tell anybody

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Oh, yeah

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I had a lot of times when I was worried about doing things like gardening washing up anything

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where I was an infection risk

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and uh

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I’ve seen some people on the group who are in the middle of treatment and they’re worried about infection risk

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and

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It’s great to be able to come and say look i’m

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I’ve got through this and yes, you do have to be careful when you’re neutropenic

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However, your team are there to help you through that and to give you advice

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Many times because I play guitar and if you’ve got i’ve got guitars in here

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You can see the the strings at the the strings at the top there. They’re quite sharp

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Um, if you look where they go onto the the machine heads, you know

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And I remember when I was neutropenic

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I was tuning my guitar and I cut my thumb

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On one of those and I was absolutely petrified. I would go down with some sort of sepsis or something

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um, but

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You know, it’s good to have support whether from your team but also

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in your

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Support group to be able to say, you know, uh, i’ve been through that that’s that whole

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Load of worry share this podcast on your social media so others may benefit

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I

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want to now find out from mick about

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um that whole

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first

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Diagnosis he says that when he was first diagnosed

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He felt lost. Uh, can you sort of?

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Associate with that. I wonder if he felt lost because at that time he didn’t know what he knows now

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Well, let’s find out. I spent 34 years in the fire service and

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As I often say, you know, I considered myself to be, you know fairly

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Roughly tufty could deal with most things and you know, seeing a few horrible sights

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Uh, but when I was diagnosed I I really just didn’t have anywhere to go with um my feelings

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You know dealing with the actual condition understanding the treatment that I was going to go through

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Unfortunately the lymphoma support group in cornwall existed already

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And I I found them almost by accident, but this was pre-pandemic. So

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We used to meet in um in trilisk in a conference center once a month

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And just really share experiences and I found that so helpful

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Uh, I I I found it very difficult to talk about at the time because I just found myself getting quite emotional

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Uh, but once I you know became comfortable in that

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Environment, you know knowing that everybody else in the room and now we meet online everybody attends our meetings has experienced something similar

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But equally they’ve got their own

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story their own journey to share

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You know that is so helpful and what i’m trying to do now

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With other members of the group is to try and give something back

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So that my experience and and our shared experience

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helps new members and people going through really quite tough times and uh,

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You know knowing that you’re not alone. I think is vital and you know

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If you can learn from others experiences and we can

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You know help keep a bit of positivity going then you know, then the job’s done really

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I think there’s nothing more sobering than being confronted with your own mortality

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And that’s what happened. I mean I

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I don’t want to sound too macho

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But you know, I was in a fairly dangerous job for a long time and but I never thought of myself as in danger

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Or my life being threatened even though I faced some difficult situations on occasions

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But being told that you’ve got something that you know, that is basically a cancer and there is is no cure

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Even though as I say medication and treatments are really, you know quite good these days

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Was very sobering. I can’t think of another word for it and um

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It’s changed me in the sense that I don’t take anything for granted

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You know, I kind of seize the day. I like to think and and try to enjoy life. But as I said

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try to give back as well to

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help others that have gone through it as well and that’s kind of how I ended up being a regular member of the group and

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uh, and then when uh, jill has and my predecessor stood down

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um, I was asked if I would take over and that and that’s what I do and I try to bring us together and

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and share those experiences, but um, you know on a

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On a weak moment if I can call it that um, yeah

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I I still get a lump in my throat and I I cry cry over tv commercials now

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So when it comes to supporting other people through this group, what have you learned about giving support?

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Well, it’s very interesting. Um question insofar as

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You know, we’ve all got our own personal journey we’ve all got our own personal feelings

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understanding levels of fear

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Levels of concern and what i’ve learned is that you know, there is no broad brush

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But the the overall benefit, you know, it’s the sum of the parts and all of that

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What I find is what?

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What each member?

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Whether they’ve been in remission for you know, in some cases seven or ten years

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Those people what they can bring to help other people that are still going through treatment

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Or are still worried about their ongoing monitoring even though they may have may be in remission

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Everyone is different and

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You know what I take from it, you know

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We have a meeting for about an hour and a half and at the end of that meeting

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When we switch off soon, I feel really quite energized

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By the positivity

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And being able to help other people and it’s not it’s not for me personally. It’s from the the group as a whole

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And uh, one of our members did say that you you can’t get that from a piece of paper

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You know, you can only get that kind of support from interaction with fellow sufferers and uh

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That’s what makes the whole support group network

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Worthwhile

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And how does this sort of support fit in with the support offered by other organizations such as macmillan?

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well, I mean the um

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The the work of macmillan is is fantastic and well known

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I think that the difference is that uh macmillan, uh covers a whole range of different types of cancer

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What we try to do is you know, we’re very focused on the the the lymphoma side of things and although we have members

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With both types of lymphoma

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that’s really what we’re about because each cancer has its own unique treatments and

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Diagnose diagnosis, uh methodologies as well some of them are very common

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Uh, so what we try to do is because we are dealing with a specific type of blood cancer

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Not myeloma not light leukemia

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We’re actually dealing with

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specifically with lymphoma, you know, it means that

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Members come to us and learn from us from the experience of the condition that they have

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Rather than in a general way. So I think um what he was talking about giving back

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We’ve talked about that a lot to do with setting up this podcast

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Yeah, we’ve um because we’ve both been through experiences and we both want to give back. That’s why we’re doing it, isn’t it?

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In many ways, this is a sort of

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uh support group

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in a different way, but

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You’ve mentioned before you haven’t found a melanoma support group in Cornwall

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I’m not saying there isn’t one but you haven’t found one. Have you thought or perhaps, uh,

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It’s something I could help with there. Well, I did wonder about that

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Which is why on my final appointment with my oncologist and my cancer nurse specialist was there

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I did ask them about it and that’s why I said why haven’t I met anybody else with melanoma on my journey

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And they explained it’s because it’s mainly older gentlemen that get it and it’s they’ve they found that older gentlemen

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Don’t engage in support groups even though they’ve tried so

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um, I don’t think i’ve got the energy and resources to set up a melanoma support group, but also

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Having that bit of information from them. I just wonder it might be better for me to see if there’s

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A national one maybe where there’s more people. Um, and I know there’s lots of facebook groups

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because I was on one to begin with but I was advised to come off it because

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there were there were more bad news stories than good news stories on there because

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People tend to talk about when they’re going through a tough time

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But they talk less when they’re going through good times

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Which is sort of where this podcast is coming from because we’re both in a good place

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Um, and that’s why we want to share our time, isn’t it?

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I think at this stage there are two things. I want to say whether I will be able to keep in those in my head

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with chemo brain

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Is that uh, first of all, I know i’ve lost one of them already

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Are you going to say we’re not medical professionals and we’ve been through that one

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Um, i’m going to have to try and come back to this

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Because my brain I can’t hold things in my head for very long

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And uh, there you go. That’s one thing

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I think I was going to say about facebook groups

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Um, I have found a lot of non-hodgkin’s lymphoma and lymphoma facebook groups

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and you do I I do get worried by some of them in that

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you find people asking for medical advice on them and

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Uh, there are people who just reply back saying ask your consultant ask your doctor

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Yes. Yeah. Yeah. Yeah same

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But a lot of these groups, um, I was reading all these all these horror stories and also they’re putting up photos of what they’re having done

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It’s like yeah, we’ve all i’ve had it done. It wasn’t very nice

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Um, I have got my pictures of of my journey, but i’m not going to share them unless someone asks for them

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I don’t I wouldn’t want to just post them on facebook

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Um, it’s too too public a platform

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Um, once again, everyone is different. Some people might find that

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Helpful to find out but other people won’t I I think uh,

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Uh, I was quite pleased that no one had alerted me to uh,

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What a bone marrow biopsy was like visit our website

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Www.cancercafepodcast.org

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What I wanted to do now is just find out some tips from me

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You know is to listen to your body and if you’re you’re worried about symptoms is to make sure that you’re consulting the right people

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Initially, that would be a gp. I imagine

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Take the advice of consultants and uh cancer nurse specialists if that’s what’s diagnosed

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But i’d also say that you know

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Don’t go through your journey and your battle alone

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Because there is help out there. There’s help online. There’s help, you know help that

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Groups like ours that can provide this macmillan, of course, and there’s so many different

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support

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opportunities available particularly in this day in these days of uh,

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Technology and networking and that kind of thing. So there really is no need for anybody to

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Suffer in silence to coin a phrase, you know, there’s help out there. Okay, so another tip

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Well, I think the the other issue for me is is not to be complacent about

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Your condition

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What consultants will say to you particularly when you’ve finished around a treatment and you’re in remission?

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Is they say to you listen to your body let your body determine whether or not

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You’ve relapsed or you’ve got any worries

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So talk to your consultant

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Get that reassurance and if there is something wrong

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They’ll follow it up. They’ll do the necessary tests

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So that you know, if there is a relapse and it can happen

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Then they’ll pick it up sooner rather than later

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And the quicker you get treatment the better chance you’ve got of pushing it back into remission

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And for longer periods we’ve got some members that have been in remission for 10 years, which is fantastic

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Okay, so matthew I know that you’re part of this support group

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Um, I think I picked up earlier that mick mentioned zoom meetings

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And I just wondered whether all of the meetings were on zoom or whether you have any in-person meetings

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I think we have two in-person in-person. Yeah in-person meetings a year

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so there’s a

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Time in the summer when we all go to a pub and have a pub lunch

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and chat and just before christmas as well, but the rest of them are on zoom and some of the

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People who are members were treated in Cornwall and now have moved up country somewhere else

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And are still members of that group. Does everybody put their cameras on?

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Everyone does put their cameras on. Yes

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And obviously when someone else is talking you’ll mute your

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Your microphone so that so when the dog comes in it doesn’t disturb what someone else is saying

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It works. It really does work

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Yeah, so it makes it more inclusive and I have to also ask about cats because

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Having lots of teams meetings and zooms meetings. There’s always a cat isn’t there?

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And they like walking in front of the keyboard the camera with their tail up in the air

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They do. Yeah, so do you get cats involved as well? Oh, well cats have been involved

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Children all sorts of things. Yes

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Do you find people will take their will will attend the meetings even if they’re away on holiday or if they’re

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Yes. Yeah. Yes that sometimes happens as well

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there was a week or two a month or two when I

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Couldn’t be involved or or tired. I was getting really tired and I fell asleep and I woke up and thought oh goodness

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I’ve missed the meeting and

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00:25:07.190 –> 00:25:12.070
People came back and said are you okay? And that was really nice. Yeah, that is lovely

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00:25:12.070 –> 00:25:13.710
I have got another question as well

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actually are the meetings recorded so that if you do miss it you can play it back or

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Is it not recorded because of the privacy of the group? It’s a private group and they’re not recorded

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I think when we’ve had someone who’s done a presentation who come in to talk about a certain thing

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We’ve had a cancer nurse specialist who’s come in to answer questions and we’ve recorded that bit

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So that they can other people who couldn’t make that group do

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Have a chance to listen back or or maybe

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00:25:47.130 –> 00:25:54.770
Uh, you were there and you want to listen again to something because you didn’t quite catch it first time

334
00:25:54.770 –> 00:25:56.850
Yeah, it sounds like an interesting concept

335
00:25:56.850 –> 00:25:59.410
I do like the idea of the zoom meetings

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But I also like the idea of the in-person meetings because you can read body language a little bit better when you’re in person

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But the zoom thing makes it a lot more accessible to a lot more people

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I mean if if you were unfortunately in a relapse situation and you’re in hospital

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00:26:13.810 –> 00:26:16.070
You could still be part of the meeting couldn’t you?

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00:26:16.810 –> 00:26:17.430
I think

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I did go into a meeting when I was in hospital a meeting or two

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I think yes that did happen even if you can’t be a member of a support group

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It’s important to realize that there are other support services

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So there are cancer cafes around but not everyone will have

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the same type of cancer as you’ve been diagnosed with and also

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I did use sometimes the

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00:26:46.390 –> 00:26:54.530
There’s a macmillan online chat room where or where you can send a question in and you get some response back

348
00:26:54.530 –> 00:26:57.330
Oh, right. Okay. I didn’t know about that

349
00:26:57.330 –> 00:27:03.610
I did use macmillan when I very first started treatment because they offer help with financial situations

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And I did need help with that

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So yeah, it’s interesting to know that there’s there’s so many other options out there aren’t there?

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There’s no never a reason to

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Not find some support some help there

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There will always be some somewhere and even if you are out in the wilds and bobbing more or

355
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Somewhere like that. There will be a way

356
00:27:30.050 –> 00:27:32.650
That’s the whole point of this podcast as well

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00:27:32.650 –> 00:27:37.450
Yeah, yeah, I mean I wrote down as I was scribbling down about one of the things i’ve written down

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Sorry, this is taking a long time to say what i’ve written down. Well, that’s okay

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Do you want to spend any longer saying what you’ve written down? I’m going to say it once more

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What i’ve written down is have you written something down? Yes

361
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Is that you need to find the right support group for you?

362
00:27:52.610 –> 00:27:57.330
And there are lots of different support groups this one sounds amazing and very inclusive

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00:27:57.970 –> 00:28:01.290
But if you haven’t got lymphoma, obviously, you’re not going to join this one

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00:28:01.290 –> 00:28:06.090
But as as matthew said there are lots of different support groups out there go find them

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00:28:06.090 –> 00:28:08.890
Even if you think you don’t need them, you probably do

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Ask your consultant if there are any support groups ask macmillan if there are any support groups. Yeah

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Your nurse your cancer nurse specialist will also help

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And of course we access the cove because we live quite near it but

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00:28:23.510 –> 00:28:28.890
Yeah, macmillan that that on their website. I’m sure they sign posts to lots of different groups

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Well, that’s the end of this week’s

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Little chat about certain things support groups and we were talking about lymphoma

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And what I would like you to do is if you have the chance, you know

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If it’s a possibility

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And you’ve got the energy to chat to someone else about it

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Do tell them about this podcast as a way of getting that extra level of support and maybe a family member a friend

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Or someone who’s just been diagnosed or just out of treatment might benefit from what we’re doing here

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Yeah, please share the news share the news

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00:29:07.250 –> 00:29:11.630
Share like and subscribe. That’s what they’re meant to say, isn’t it?

379
00:29:11.630 –> 00:29:17.530
Oh, yeah, but we yeah, we we don’t get around saying things like that do we what we say is something about a hug

380
00:29:17.530 –> 00:29:21.890
A hug. Oh, yes, give everybody we we always offer a big hug, don’t we?

381
00:29:22.350 –> 00:29:25.490
And I always say when you give a hug you get a hug

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I sometimes feel like a telly tubby because that was something about hugs was past the telly tubby big hug big hugs

383
00:29:32.130 –> 00:29:34.290
Yeah, yeah, I remember that

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Okay, so see you next week ever. See you next week matthew

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You’re listening to the cornwall cancer cafe podcast. Thanks to the national lottery community fund for supporting this podcast