Participant stories

Vanessa’s story

Vanessa was diagnosed with Lymphoma in May 2016. She received treatment for two and a half years and spent over 8 months in hospital during this time. Treatment had a huge impact on every aspect of Vanessa’s life, but now 6 months post treatment, she is back at work and regaining her stamina. Here is what Vanessa told us about her experience:

How did your cancer impact you?

It had a huge big impact and it’s been very long. At the end of 8 months of chemo and radiotherapy I had a depleted immune system, so I was then on IG therapy for another 14 months. Every day you don’t know quite what to expect and by the end I was completely knackered. I stopped working and stopped caring for my mother. I worried about her and about it all really, the weight loss and everything else that goes with treatment. I couldn’t have any social life either. I used to spend hours and hours talking to people, but I couldn’t do that through treatment because I was so tired. At one point I had to get a wheelchair because I was so weak and I thought “this is really ridiculous”. Part of me still wanted to get out of house but then when I was out, I got so tired I just wanted to go home again. It does really limit you and it has a major impact on everything.

Can you tell us about your experience with Move More?

Post treatment, I went to a fatigue talk at St. Georges’. That’s where I met Beth! At that time I was suffering from fatigue and sleeping about 14 hours a day. Beth explained about Move More and I thought I’d give it a go. I didn’t know whether it would help or what to expect.

The consultation was an absolute inspiration for me. I felt guided, without being pushed or forced. I felt listened to as well as being given really great advice. Having someone to talk to that doesn’t judge you is so important. By the end you think, “right I can get back to that healthy me, with help and guidance”.

During the consultation we worked through the Move More pack which I’ve found useful. I was shown how to utilise the book and the DVD, which is important because let’s be honest, who takes home a leaflet and reads it?  During follow ups we look at what I have been doing and talked about my progress. It’s nice to have someone that’s just genuinely interested, not just “here’s a leaflet, here you go”.  The literature and DVD are brilliant but it’s because of the consultation that I’ve been able to put it all to good use. You need someone to guide and inspire people a bit. I don’t think I would have gotten as far as I have, without Move More. I think I’d still be struggling and just putting being active off.

Do you feel you’ve experienced any benefits because of Move More?

I have become fitter. I had a bit of a stumble recently, just because I was a little bit poorly. But that made me realise how much of a benefit this had become. With help from Move More, I’ve increased to a much higher level, but I didn’t realise it. Coming back for a follow up meeting has given me the motivation to get back up to that level, because I realised how strong I’d become. It’s helped me so much. I’m walking, doing the Move More DVD and some strengthening exercises. Building strength has been the main benefit, you don’t realise when you’re so ill, how weak you actually are.

I’ve been given the motivation to maintain this lifestyle. It’s really hard to get active again, it takes a lot of effort and there are always excuses. But once you’re physically better, if you’re feeling a little bit down, just getting little walks here and there does make you feel so much better.

I never imagined how much this would help me physically. It makes you realise “you can do this”, and it’s actually quite simple. Just by walking an extra 0.2 km a day you can improve. I think everyone who is going through treatment should be doing this, they need it. If this was more readily available, it would help a lot more people and their recovery would be a lot quicker.

My only wish is that I started it sooner, if I’d started while I was going through my radiotherapy, I think it would have been beneficial. The sooner you start it, the better. I think you need to clone the Move More Team, their know-how is great. If you could have it available in hospitals and other sights, it would benefit people so much.

We all go into our cancer thinking “I’m not going to let this affect my life” but it does! You are going to have to give up work, you’re still going to have to have crappy days. To have someone to motivate you through those bad days, to get you up and moving, it is so important!

Janet’s story

Janet was diagnosed invasive lobular breast cancer in February 2018. She had surgery in May 2018 and started chemotherapy in June. Janet joined Move More in July and has continued through her treatment. Here is what she told us about her experience. 

Could you describe how the cancer impacted you?

Before the diagnosis I had a really full on job working long hours in the city, commuting an hour each way every day. I took on advice and decided it wasn’t reasonable to continue that pattern through treatment, so I stopped work a couple of days before my surgery. Suddenly the world stops and the routine you had is gone.

I was exhausted, and I found it really hard to do the things I used to do, so I didn’t do anything for months. They fill you with steroids and I could just feel myself gaining weight, it was horrific.

Socially everything has stopped. After my surgery I could do the odd evening out, but now I am so tired it would wipe me out. I haven’t been out in the evening since my chemo started, I just haven’t wanted to, I haven’t got the energy. Things have really changed.

I used to go the gym twice a week and run around the park at weekends. But then everything stopped, I could feel my posture deteriorating and it was uncomfortable to eat and breath. I could feel myself losing control and I felt quite panicky about it, which is why I knew I had to do something.

Can you tell us about your experience with Move More?

Having initial consultation was absolutely helpful. I was really worried because I had done nothing for months, but it was good to talk to someone who understood that I hadn’t always been like this, that I had a different life before this.

I think one of the things that is quite difficult and different it is to recognise that the trajectory isn’t the same as exercising pre cancer. You expect that if you exercise every day you are going to get better but, in the background, I’m having some really debilitating chemotherapy.  I try to accept that last week I was quite buzzy and up for it but this week I’m all over the place. It is a very up and down trajectory and it can get you down to think your performance is down to what it was the week before.  That’s why it helps to understand this from the start. It makes the concept of a three month review different too. I might not be stronger or fitter, but I got out of the house, I survived treatment and I’m still on my feet and moving. Talking things through regularly has helped me get to this point.

My initial consultation helped get me started and I joined the Move More class which I am happy in. I also joined the walking group from the hospital and try to do little circuits of the common by myself.

To keep moving has helped give some structure to the week, because you’re suddenly off work and everyone you know works Monday to Friday. It has helped me through chemo, where would I have been if I hadn’t moved since May? It’s really helpful to have something pitched right, at a reasonable level. The fact that the service is flexible has been really beneficial for me too. I think if you’re in treatment you don’t know whether you’re going to be able to come on a particular day, when people are really sick after chemo its nice to have no pressure to turn up. That flexibility is really quite important.

Do you feel any benefits to your mental wellbeing?

If you’re in treatment and you feel very tired, it can make you feel quite low. This afternoon I probably won’t do much after 3pm but I won’t feel so low about it because I’ve done something physical.  I would be equally as tired if I had done nothing, so it helps you feel a bit more positive to keep moving. It’s nice to meet other participants, we usually have a chat and that keeps you going, its supportive.

What advice would you give to other people in your situation?

I would certainly say if they can find something like this, then to just give it a go. It gives a bit of structure, sometimes it just keeps you ticking over and stops deterioration. People say you shouldn’t say ‘somebody is battling cancer’, but the thing is I don’t feel like I’m fighting, I am the battle ground. I feel so passive sometimes, so many other people are sticking needles in you, doing things with you and you feel like ‘hello I’m here’ you just sit there and have things done to you. To actually do something for yourself is really positive and I would encourage people to do this sort of things.

Chris’s story

Chris started the Macmillan Move More after attending a Health & Wellbeing event at St George’s Hospital. Move More has enabled him to grow in confidence, thanks to the social interaction and exercise. He now feels able to get out and about again.

How has the cancer affected you?

I was diagnosed with prostate cancer 18 months ago and had a radical prostatectomy operation in 19th January 2017. Since then I have been recovering but the cancer is still present. I am now having hormone therapy and will soon have radiotherapy.

I’ve not been able to work since the operation because it’s disabled me. Having the prostate removed affects your bladder and it leaves you incontinent. I can get about walking, but I can’t climb a ladder or do everything vigorous.

My lifestyle has changed completely. I don’t go out and about as much, I still do things, but not as much. When you’re working you get out every morning. I was self-employed as a marble polisher, though I did other things like window cleaning, DIY, painting and decorating etc. I’ve retained a few jobs, but other people help me as I can’t do heavy lifting myself.

I stopped going to watch my football team as I couldn’t do the walk from the bus stop to the stadium. I also stopped going to concerts and the theatre, I was too anxious to go out because of my incontinence.

How did you join Move More programme?

I attended a Health and Wellbeing event at St Georges Hospital, Move More were there giving a demonstration. The instructor’s (Sonia) enthusiasm was amazing. I thought, ‘I’ve got to have a bit of this’. So, I signed up to Move More and arranged to have an appointment with Beth.

How did you feel about physical activity before your 1st appointment?

I was worried, my incontinence was bad at the time. I thought I wouldn’t be able to do anything and worried what people would think of me.

When I was interviewed by Beth she said, ‘You only do what you feel comfortable doing’, that stuck with me. I was reassured that this really might help me. I thought if I could maintain my strength, it would help me to get mentally and physical stronger. I thought, if I can get fit and get my mind in a better place, then I will be a happier person and nicer to the people around me. And I thought, ‘Right I need to get myself going again’. Over time I did get better and better and it got easier and easier.

I started by doing the Move More class once week, then I built up and started doing an Active Lifestyles class too. The second class pushes you even further.

Have you experienced any benefits from joining Move More?

It has taken a long time to recover from the initial operation. But the exercise has helped me, I’m fitter. The class has helped strengthen my core muscles which is very beneficial and has helped me an awful lot, especially strengthening my pelvic floor. It’s made a hell of a difference (to my incontinence).

I started feeling the positive affects to my confidence about 1-2 months from starting the classes. The classes helped a lot with the confidence because they push you to do things that you don’t know if you can do. Simple things like bending down to pick up weights, you think you can’t do it, but you can. I’ve never valued exercise before but now I realise what it can do it me, how it affects me.

It’s also good for your family to see that you’re doing something. They can see you’re making an effort. Your family feel happier for you because you’re doing something for yourself. Your family knowing you’re doing something rather than you saying, “to hell with it”, and giving up and feeling sorry for yourself, which is easy to do.

When you come to the classes you tend to forget about things. They make you feel good. It’s a sense of euphoria. They have become a social thing and I’ve made friends at the group, we have a chat and a laugh and feel good after. The first time you go you’re nervous, but gradually you start talking to people, you loosen up and then you feel like you’re a part of the gang by the end, we’re here together. It’s also good because we can talk about what is happening to us. That is very valuable. You meet people and realise they all have their own problems but here we can have a laugh. We do our exercise and then it’s easier to live your life. It makes you a happier person, just coming to classes like these.

Has anything changed since you started a year ago?

It is changed my mentality. It’s easy to think, ‘What am I here for, it’s useless’. But now I’m starting to get back to normal again. I’m starting to go to the football again and socialising more, meeting my mates and having the odd half. I feel more confident to be able to go to concerts and the theatre. I think, ‘Yeah, I’m going to go to there’. I still have to think about the timings and plan a lot more. But now I’ve got the confidence to know I can do that, I can get there, I can be in control, I’ll be all right. The exercise has helped me enormously. In particularly, it has given me confidence to actually go out and not be worried, to know how far you can go in a day. Cancer is a horrible bloody thing I’ll tell you, but exercise gives you confidence.

I’m very grateful to Enable and Macmillan, Move More is absolutely amazing. It’s a very important part of my life now, I can say that with 100% sincerity. I would feel very sad if it didn’t continue.

Ben’s story

Ben was referred to Move More by his Clinical Nurse Specialist at St George’s Hospital.

Ben has had health problems throughout his life, so when he was diagnosed with cancer 9 years ago, it was no surprise to him. But what has taken him aback is the positive impact that getting back into exercise has had on his life. From physical strength to a get up and go attitude, Ben is feeling more like himself again.

 Please can you describe your health background?

When I was young, I did every sport going; cricket, tennis, swimming, football, athletics. I was doing things 7 days a week. However, my endurance has never good, I was a very good 200m and 400m runner, but that was my limit. In 1971 (aged 14), I started having health problems, then in 1991, I discovered I had sarcoidosis (an inflammatory disease) on my lungs, kidneys, prostrate and bladder. This caused COPD and compromised my immune system.

In 2009 (aged 52) I was diagnosed with tonsillitis and throat cancer.  I had surgery to remove both my tonsils and part of my tongue. Following that I had chemotherapy and radiotherapy for a few months. The chemo was alright but the radio therapy had a lot of side effects. It made my skin peel and my taste buds and salvia were permanently damaged. In 4 weeks I went from 79 kilos to 42 kilos and lost a lot of muscle. I also suffer from postural hypertensions and black out when standing up or sitting down.

How did you join Move More?

I spent eight weeks in hospital for the postural hyper tension. My balance was very bad. I was all over the place. The hospital referred me to a 10-week balance class with the physiotherapists. Then my Macmillan Clinical Nurse Specialist showed me the Move More leaflet and said it would complement my balance class. I phoned up whilst I was with the nurse and was booked for an appointment straight away.

I attended an initial consultation first to discuss different option and then decided to try the Move More class in Tooting.

I didn’t think I would be able to stick out the classes, I very apprehensive. I wasn’t looking to build muscles, but I realised I needed strength to stand and walk around.

Have you benefited Move More?

My strength standing up and walking are much better. Before I started I needed to rest after 10 metres because of my lungs and legs and I needed to walk with a stick.  Exercise has made a lot of difference, on good days, I can do 100m easily. I don’t have much use of the stick since anymore.  My postbox is 100m away, I wouldn’t walk there before, I would get the car out of the garage and drive there. Now I walk. Yesterday I walked 5 flights of stairs down instead of waiting for the lift. And I thought, did I just do that? Before Move More, I wouldn’t even watch people exercising because it would make me tired. I thought exercise would make me tired, and I didn’t want to do anything that would make me tired. It hard because my conditions make me fatigued, but I really notice the difference and it makes me want to come back, the classes are brilliant. I look forward to exercising now.

I’m motivated because I can see what it does physically and mentally. Its increased my appetite and I’ve gained weight. My moods are much better too. It’s the endorphins you get. I’m cheerier, even when I’m by myself. I have more get up and go and I want to do things. Even if it’s just walking to the shop.

I’ve spent the last 7 years preferring not to leave home. I kept away from social situations, it’s as if I have agro phobia.  If you had said to me 3 months ago, that I would be getting out of the house twice a week, I would have said no way, there’s no way you’re getting me out the house. The way Move More encourages people to do a bit more is great.

I experienced benefits from the first session, it brought back memories of pre-cancer. Remembering how I felt back then gave me a goal. I didn’t think I could feel like this again, like there are possibilities. It’s amazing how just exercise can do this to. Even I don’t understand it, I don’t understand how it has made that much difference on the mental psychology.