Getting up and getting out – living with mobility issues and lymphedema after treatment for cancer 1

Author: The Christie NHS Foundation Trust

(Music plays) [Paula Williams]I think we all have a concept of what mobility is, but really it can mean so many different things. It isn’t just about walking around. It is about all the things you want to do every day. Getting back to work. Using all of your limbs. (music fades out) So you work primarily with sarcoma patients, don’t you, Maxine? So what major issues do you come across time and time again? [Maxine Cumbo] It’s a primary tumour of the soft tissue, so they tend to have a lot of the muscle removed when they have the surgery and they have a lot of weakness in the affected limb.

So, if it’s obviously happened in the leg then they’ll need walking aids such as elbow crutches, zimmer frame, and it’s about trying to get the other muscles to compensate and build up to allow them to get back to a good level of mobility and function. (music plays) [June Robson] My name is June. I was diagnosed with osteosarcoma in June 2013. Osteosarcoma is a type of bone cancer. Having had much of the left side of my pelvis removed, I knew that I was likely to have walking difficulties. In fact, before the operation, I wondered whether I would ever walk at all, in any way. In fact, I even wondered whether I’d be able to sit up because I knew so much was going to be removed By the time I left hospital in Birmingham I was walking on 2 crutches although occasionally, if I was tired, using a zimmer frame, able to get a very short distance on 2 crutches. [Maxine Cumbo] I’m working with a patient at the moment, Kathleen, who had an above-knee amputation.

[Kathleen Bentley] My name’s Kathleen and I was diagnosed with sarcoma in my upper thigh 10 years ago, which resulted in an amputation 5 years ago. We discussed amputation because the tumour was spreading so rapidly and we just took it for granted, didn’t we? [Frank Bentley] Yes, Yes. [Kathleen Bentley] It was a relief actually because I’d had so many operations that it was getting dangerous. I have a prosthetic leg but I can’t wear it because my, I don’t know what they call it, [Frank Bentley] Stump, probably. That’s a good word [Kathleen Bentley] No, it’s got a name [Frank Bentley] (laughs) [Kathleen Bentley] The remains of the amputation, it is only about 5 inches, 4 or 5 inches, so I have nothing to put in the top of the prosthetic leg and I cannot move it and the leg won’t stay on and they tried various methods of keeping it on but none have been successful. So I make do best I can in the wheelchair and the scooter and the crutches. (music fades out) [Paula Williams] We see lymphedema patients, don’t we, that’s sort of what we do the majority of the time and obviously it isn’t just around swelling of the limbs.

There are lots of other issues around it as well. (music plays) [Anne Parkes] I’m Anne and I had a melanoma that spread into my lymph glands in 2007. [Janet Macintosh] My name’s Janet and I was diagnosed with breast cancer in 2006.

Getting up and getting out – living with mobility issues and lymphedema after treatment for cancer 1

They’d taken 22 lymph glands out and found cancer in one of them. So chemotherapy was a treatment and then after chemotherapy I had to have 19 sessions of radiotherapy. There’s more of a chance of getting lymphedema after you have radiotherapy. This is a cream that I use but you can use any cream, any cream that’s recommended. I would normally apply this cream and it’s just in a rolling method that’s going up the arm and it helped to take the fluid from the bottom all the way up to help drain at the top [Julie Kenyon] You’re more reliant on things like compression garments, which is a big issue really, isn’t it, for all our patients because they’re not the nicest looking garments.

They can be a challenge to get on. [Paula Williams] They are getting better. There is, there are more alternatives. There’s some lovely colourful ones but they don’t suit everyone. [Julie Kenyon] People often say they feel like they’re being labelled because they might recover quite well from the treatment, get back to normal, get back to work. Do all the normal activities and then they’ve got this compression garment stuck on their arm or the leg that they feel really labels them as having had cancer and being different.

[Anne Parkes] The treatment was to wear a lymphedema stocking, which I knew, but I had really wanted to avoid. I kind of felt they were going to be ugly. That everyone was going to know I was wearing it under everything that I wore and that for me was something I’d not wanted obviously to happen. I was basically going to go skiing. Somebody had said to me, you know, 'will you be able to get your boots on with your leg so swollen'. Had a bit of a panic that I wouldn’t be able to and it was at that point that I actually realised that I’d been making quite a big meal about something that wasn’t so bad and that actually these things were wearable.

[Julie Kenyon] Sometimes it’s something simple like they want to be able to have a shower by themselves or a bath by themselves without needing assistance to get in and out or get dried afterwards or to be able to get their own clothes on or fasten their shirt buttons and things like that. [Paula Williams] Something we all take for granted… [Julie Kenyon] Yeah [Paula Williams] ..and don’t ever think about until we have a problem, yeah. [Julie Kenyon] Which they find really, really frustrating [Julie Kenyon] Yeah [Kathleen Bentley] Now I think the worst thing to adapt to is being in the bathroom. [Frank Bentley] Yes. [Kathleen Bentley] It’s so small that the wheelchair will hardly go in and we have the bath chair and the position of the taps and the bath make it very difficult to stand up and have a shower. [June Robson] To look at how I was when I first came out of hospital, I needed help for almost anything.

I had to use rails around the toilet even to get on and off the toilet. I needed help from my husband to get a shower. I didn’t do much domestically for quite a lot of months [Janet Macintosh] I think it’s harder to do lots of things that's repetitive.

Ironing tends to put a lot of pressure on your arm. Shopping, I find I do like shopping. I like to go shopping a lot but I find if I take one bag and fill it I know that I can’t take anymore, so, it doesn’t stop me from going. [Julie Kenyon] Sometimes it’s about getting them to accept some help in order to be able to do the things that they want to do.

[Paula Williams] and even temporarily… [Julie Kenyon] Yes. [Paula Williams] …as a stepping stone to [Julie Kenyon] Because it might be that if they start going swimming locally and strengthen everything up then they might come to a point where they can do it by themselves because they can get changed by themselves but unless they can get over the hurdle of needing assistance in the first place. [Kathleen Bentley] Well I still go out and about as I’ve always done by means of the crutches; I can hop into shops with the crutches and go from shop to shop with the scooter and we’ve had the car adapted, haven’t we? [Frank Bentley] We took the car to the local garage and had a hoist fitted into the back. [Kathleen Bentley] And also they adapted the driving so that I can drive and you can drive without having to alter anything. [Frank Bentley] Yes, hand control, yeah. [Kathleen Bentley] Yeah, I use hand controls. [June Robson] I’m always going to be living with a very altered body. These crutches, which are my friend, are going to be with me nearly all the time and I can take just a step or two around the house with no crutches.

It is, it is improving still slightly but I will never walk the way I used to. One of my hobbies used to be country dancing and I still joke about the fact that I would quite like to get back to country dancing. I think it’s pretty unlikely. [Maxine Cumbo] Why’s physical activity important for cancer patients? [Julie Kenyon] It has physical benefits, which is improving your cardiovascular fitness, keeping your weight down, increasing your muscle strength, flexibility. So also being physically active during your treatment helps to reduce the side effects and how long they last for. [June Robson] I have just steadily improved in physical fitness and I was very keen to work on it. Initially I had physiotherapists working with me at least once a week. I was having hydrotherapy.

But as that tailed off I was just keen that I keep going with the exercise and keep improving as much as I could. So I joined the gym. I’m usually at the gym 3 times a week. I do an aqua class in the water once a week. I do my own physiotherapy led exercises in the water on another occasion and then I do exercises, floor exercises, and exercises using the machine on a third occasion. Even on the days when I don’t go to the gym I have a sort of exercise routine, guided by physiotherapists, that I do and still do manage more than 18 months down the road to get fitter and more active. [Paula Williams] I think there used to be sort of some advice in the past where they were advised not to do too much because it might make things worse but that’s in the last few years been completely turned on its head really. [Julie Kenyon] Yeah, definitely in the lymphedema field.

They used to think it would make the swelling worse or actually cause it in the first place, but that’s definitely not the case. We now try and get all our lymphedema patients to exercise. [Anne Parkes] My kind of big hobby at the moment that I really enjoy is going out on my bike, my road bike. So I go out at least once a week if not 2 or 3 times a week. Just really enjoying getting out into the fresh air and around Cheshire. Doing exercise does really help to reduce the swellings and especially if you’re wearing the lymphedema stocking. To use it when you’re using your muscles so that they can work against the compression of the stocking and actually pump the liquid hopefully, kind of, more effectively out of your leg. [Julie Kenyon] I think the most important thing is it doesn’t really matter what you do or where you do it or how much of it you do it, at any one time, is to basically stay active, even if you’re sitting, even if you can’t get out of your house without help and you’re sitting in your chair in your living room.

You can move your arms around, move your feet around. [Maxine Cumbo] It’s knowing that there are things anyone can do no matter what treatment they’ve had, level of independence they have. Everything is sort of adaptable. [Paula Williams] And I think people need to know that they can ask for advice.

There are people there, even if it is years later and they’re still struggling with things, there’s no reason that we can’t look at that with them. It doesn’t mean just because they’re no longer coming to the hospital that they can’t access these services. [Anne Parkes] Try and remain positive. There can be positive endings. But in particular around lymphedema I would say take action. Don’t ignore it.

Take action as early as possible [Janet Macintosh] I’m living with lymphedema. I’ve lived with it for 7 years. At first you think it’s going to go and when you can get your mind into the fact that you’re going to have it, then your life changes in many different ways and the longer you have it you adapt. [June Robson] As soon as I was diagnosed my mind ran ahead to, well, it ran ahead to dying and it ran ahead to all sorts of awful scenarios and some of the bits along the way have been pretty tough. But, if you just take each bit as it happens and not try to deal with the things that may never happen, just those things that are happening. [Kathleen Bentley] Don’t be afraid. Life can go on as normal and there is a way around everything.

People will help and you’ve just to get on with it. (music ends).

Getting up and getting out – living with mobility issues and lymphedema…

(Music plays) [Paula Williams]I think we all have a concept of what mobility is, but really it can mean so many different things. It isn’t just about walking around. It is about all…

By: The Christie NHS Foundation Trust