Wednesday, 4 December 2013

Follow up with wife of Ledderhose patient, 18 months post RT

Last year I interviewed by wife, this was to give a story from the point of view of someone living with someone that has the condition. I felt that this perspective was important because I am sometimes contacted by patients partners or parents and their lives are being impacted as well. I felt that since so much has changed in the last year it was a good time to do a follow up interview.

1) Your husband had radiotherapy over a year ago, how long did his improvement take and what changes have you noticed? 

The improvement was pretty quick, from what I remember. By the time he went for the second round of radiotherapy he was already noticing a reduction in the size of the lump. Gradually over the months afterwards he was able to walk better and better until we got to the point, and I can't remember when this was, that he started to be able to walk without his stick. By May this year, when our daughter was born, he was able to start doing a small amount of running and just a few weekends ago we both managed to run 10Km for charity. This is a huge achievement for him and it's amazing how far he has come in just 1 year. 

2) When interview last time I asked you the following question---- What sort of things do you have to do / put up with? Your answers can be seen here (and text below) --- what are your feelings on what you wrote last time and how things have changed since? 


I no longer recognise the things I wrote as they are so unreal. On a day to day basis I don't think about his foot, I mostly forget about it because it doesn't need to be a consideration any more. we went from a point where he was needing so much looking after to a point where he had to look after me, a complete shift in roles. He was able to do everything we needed him to. Now he is the one doing all the badminton playing and the running and I'm trying to pick myself up and join in with him. I know that for him his foot is, of course, a consideration but now I can trust him to stop when he needs to. I feel like we're back to supporting each other and I'm glad his foot is no longer the start and end of a day. 


3) Is there anything else you would like to add? 

I'm glad that the charity was there for us when we needed them and that Gary is now so involved with them. If anyone isn't sure about radiotherapy, from our experience, I would say at the very least look into the option. For us we thought we'd give it a shot, we had nothing to lose. We never expected such amazing results. It was very emotional for both of us when Gary was able to not only complete but run a full 10Km. I'm so glad we weren't forced down the surgery route and we're encouraged to pursue radiotherapy and I'm so grateful to all those people that helped us raise the money for us treatment. Our life is drastically different to what is was during that time. 

Text from last interview:

I don't have to do anything but of course I want to, to try and minimise the pain he's in. If I can limit the amount of time he's on his feet then great, so I try and do all the manual housework before he can. We now park much closer to our venues; no matter whether we have to pay (I used to always find free parking further away). I have to consider whether he's up to going around the supermarket that evening and whether I need to drop him at the door. Sometimes it's so bad I have to go and get the car to pick him up even if it's not that far away. Since starting my new job I'm not able to pick him up and drop him off so much but I always try and consider whether it's an option to collect him.

I no longer play badminton, as he can't and it's not fair to rub that in his face. Even going running I feel guilty because I know he can't do it. I feel that I have to be strong and support him because otherwise it'll just make it worse for him. I try and make him feel positive and look to the good things in life. We have got a tall stool for him to sit on when doing a few tasks, a stick for him and a portable seat. I have to be stern with him and stop him doing things he enjoys so that he'll sit down as I know that it's better in the long run for him.


Recently I tried to turn my efforts to things positively and help raise money for his treatment and for the British Dupuytren's society. By doing this I feel like I'm achieving something positive and focusing my efforts somewhere where they are needed. Whilst he can't join in too we have to remind him that it's because of him that we're all there and he's running with us in Spirit. Next run I'll have a picture of him so he is running too!!


At the moment life revolves around his foot, it starts and ends every day and for him controls a lot in the middle. Whilst I've got spare time I'm at home updating the facebook group, looking up runs, training and trying to think of ways to raise money. Even when thinking of the future and long term where we want to settle, I'm conscious that we need to be somewhere accessible for him, somewhere that's not too far to walk or at least has a bus.


I don't feel that I do enough because ultimately I can never take the pain away or make him better. The best I can do is support him, encourage him to write to others and find out information, be positive and do everything I can do to make it better. That's not enough and never will be but I hope that it at least helps.