Living with lymphedema
Michelle's point of view

Observations from Michelle

After reading this article the biggest thing that struck me is how much Andy has underplayed the amount of frustration involved over the many years of attempting to deal with the problems his leg was giving him.  I know that there were days that his attitude was so low and caustic that I just wanted to reach over the ocean and give him a good solid thumping with the hope of beating some sense into him so he would fight for the help that he needed in this process.

I remember how afraid I was for him when he went into the hospital that first time before our first trip to Cornwall together. He was convinced that he lost his leg already and that he wouldn't have anything left to live for.  As his friend I hated the fact that I couldn't be there for him when he needed someone and tried to think of a way to give him some hope, something to strive for.  I knew that it was his dream to visit Cornwall at least one more time before he died (yes, that's how bleak his outlook was, and this was before things got really bad!) so I decided that whatever it took I would make that trip to Cornwall happen. I waited for the right moment to make the offer to Andy, you know, when he was really down in the dumps so that it the offer would have more of an impact on him and give him that little light he needed to make sure that he at least tried to follow the instructions the doctors and nurses were giving him.  I didn't realise how much such a simple offer impacted him, for my part it was a simple offer I would have made for any friend, for him it seemed to be so completely astonishing that he didn't know what to do with it.

I know that the planning for our vacation really helped him focus on something other than the problems he was having with his leg at the time.  However it didn't make the situation any easier for him to talk about.  I know that he tried to shelter me and everyone else from how scared he really was for a long time.  One thing he didn't count on was that when he is really tired late at night (well really around sunrise without any sleep for many nights in a row) and his defences were down, he would let things slip and I could get a better understanding of what was going on, not just with the treatments but with how he felt about it as well.  Of course, guys don't talk about stuff like that so we'll pretend I didn't say anything about it for a bit.

After our trip to Cornwall, things seemed to be going smoothly for him.  Sure I noticed that Andy was occasionally irritated with the compression sock rolling down but we could both live with that, after all he wouldn't be Andy without the occasional bout of surliness would he?  We fell into a routine again with the grumblings about the minor (or so he assured me over and over again) problems with the compression sock being just another one of those things that I was told about now and then, so I worry about him too much for a while.  When you live on the other side of the Atlantic and only have the very vague rumblings from a guy who is too tough to complain about "minor" ailments to go on, it's easy to underestimate the severity of a situation.

Since things went so well during our first trip to Cornwall, and since Andy's lymphedema seemed to be under control, we planned a second trip down to Cornwall, this one would be longer than the first trip.  We were both excited about the trip and before we knew it we were spending time on the beach together again. However, it wasn't quite as rosy as the last trip.  Oh we had a lot of fun, but I did notice that Andy wasn't able to do as much as the first trip we had and that he got tired (read irritated) easier and faster than before. So instead of going down to the beach each day, we would do more exploring.  However, in the back of my mind I was becoming increasingly worried. Oh, Andy never admitted that it was the lymphedema that was bothering him, but I'm not blind. 

Even after that trip, life went on as "normal" again that is until his fall at the Chippy.  This is when everything changed for the worse.  I can't imagine how it irritating it would be to be housebound for months at a time when he was in good health, but just needed a replacement leg.  I think that Andy could have handled it better if he was able to do more than just sit on his bed.  However, one of the things that he didn't emphasis was that the confinement to his room didn't only affect his mental wellbeing, but it affected his health as well.  Since lymphedema affects part of a circulatory system, being unable to move around as much as he used to greatly contributed to having his leg break down even faster than previously. It was a mistake to have him a virtual prisoner in his own house and I was and still am furious about how little care the people at Preston had for Andy.  As far as I can see, the medical system only sees him as a number to add to their stat's and not as a person in need of medical attention.  Having someone sit around for months at a time while they constantly messed up is inexcusable.  Having a patient's health rapidly deteriorate while under their supervision and not caring about it is equally inexcusable.  I could hear Andy's frustration with the system and to me  it seems day by day that he was giving up hope that he would ever leave the house again on his own. 

All I can say, is that I'm extremely grateful to the district nurse who was able to get Andy in to see a lymphedema specialist and the carers who are able to help Andy out on a day to day basis.  They have given hope where none existed before, not only to Andy but to me and those who care about him as well.

 I have to admit that I didn't know anything about lymphedema before.  I didn't know what caused it, how common it really is, or who it affects the most.  We hear a lot about cancer and the leaps and bounds science is making in it's fight against cancer.  However we barely hear anything about the side effects of it other than people's hair falling out during radiation treatment.  Knowing that many cancer patients and people who are involved in traumatic accidents suffer from lymphedema afterwards, you would think that more attention would be given to treatment for it.  Now that I know what it's like to care for someone who has lymphedema I realize that in a lot of ways it can be more exhausting than the initial accident or cancer that caused the problem to begin with, because this is a life long debilitating condition that can't be cured only managed and hope things don't take another turn for the worse.