Post Radiotherapy Pre Surgery - Not for the squeemish

I am currently in the recovery period after radiotherapy which finished almost 2 weeks ago now. During a recovery period, I'd imagine its best to kick back with the feet up taking in as much daytime telly as possible, but for me, I have continued working which cannot be helping the healing much.

That will have to stop this week, which means finishing work a short period before I intended. So I am planning to call it a day this Thursday and enjoy the Easter holidays with the family. There is also so much to sort out for myself and Emma in relation to our hospital stays, and both outcomes will be life changing. We are really excited about Arlo joining us soon. 

The pain on the back of the leg is getting worse. Surely this is now at its peak point? Not only has the skin gone from the back of the knee now, but it has also disappeared from the back of my thigh. Not a pretty sight. I have had to modify my Polymem dressings now to accommodate the larger area which needs covering. A delicate operation which involves the use of lots of electrical tape.

I was recently prescribed Zapain by my GP to try and ease the unpleasant pain, but that doesn't seem to be having much affect, so last night I stopped off at Clatterbridge to see Bev the Radiotherapy Support and Liaison Practitioner who arranged for me to collect some Oramorph which should do a better job. I'm a bit reluctant to start taking that until the weekend though. The side effects will be enough to stop me from driving, which is not going to help me see the week out at work. Bev also took a swab of the area on my leg to test for infection so I should hear about that in due course.

On Saturday I attended Clatterbridge to take part, with 11 others, in the Oncologist examinations. Trainee Oncologists/Registrars came from all over the world to carry out a practical segment of their examinations and of course, this is best done with real living patients. They were called in the room one at a time to assess the condition and to come up with a diagnosis and prognosis, and basically just looked at each patients symptoms and asked plenty of questions. It was clear that they were very clever people, although their nervousness was obvious.

Hopefully this is as bad as the side effects are going to get. It reminds me of the Terminators face

RT Side Effects

The knee pain is not getting any easier at the moment, every little movement is quite a struggle, but I feel sure it might have peaked now and can only get better. The back of the knee is not something I look at often, and I was quite surprised at how it looked when I took this photograph, which in itself was not easy to do. 

I now have appointments booked for the follow up MRI scan, a pre-op and the operation itself. Should be all done and dusted by the end of April.

  

Ouchy

Radiotherapy Finished

It was the last day of RT on Wednesday. A mixture of emotions. 

I was relieved to get the treatment finished because I didn't think I could take any more of the pain at the back of my knee. I have now been reduced to hobbling around and taking one stair at a time, every slight bend brings with it a lot of pain. The area around the knee and thigh is also very tender, but nothing compared to the knee pain. I think I have cracked the issue of holding the PolyMem bandage on the area and so far so good. Every now and again I need a little trip to the toilet cubicle to adjust it but other than that it is holding up well. 

The memories of final treatment day will stay with me forever. Emma and Alfie came along, as so did Bill and Joan (Emma's nan and gramps). It was really special to have some support with me. Initially I just though of it as another day at Clatterbridge, but having loved ones there with me made a real difference. It sunk in that the occasion wasn't just for me, but everyone else too. It reinforced the idea that everyone is feeling it as much as me, and that the "ringing of the bell" was also a milestone for them too.

Speaking of the "ringing of the bell", the thought of drawing attention to myself, right upto the moment of doing it, was not one I relished. That all changed on my little hobble over to the bell with our son Alfie. I was an honour to hold that little rope with his little hands and finally do it. I think he was taken aback by the reaction from others sat in the waiting room, like everyone was cheering him on for his excellent bell ringing skills. He was a hero for a minute or two, the best bell ringer in the world in his eyes. When offered a second go though, he shied away from it and hid behind me. Like I said, I was so proud to do it with Alfie, and that will be with me forever. I know he doesn't quite understand at the moment, but he will look back on the photos and realise what a special thing he did.

Emma, Bill and Joan also kept little Alfie entertained whilst I was in on the table getting zapped. Fishies and balloons, how to keep a two year old entertained.

I also mustered up the courage to ask the medical team to take a photo of me on the radiotherapy machine, something I have been meaning to do for a while.

After treatment I met Dr Alam again to look at how the leg has been reacting. She told me that I will be going for an MRI scan in a week or two to see how the tumour has reacted. Dr Alam also asked me a favour. They want me to spend half a day at Clatterbridge on a Saturday this month, to help with some kind of Junior Doctor training. Its not very often they get a Myoid Liposarcoma coming in and she feels I can be some kind of use. Of course I was happy to accept with all they have done for me, so that should be quite exciting.

Thanks again to Joan and Bill for coming along, and of course Emma and Alfie. We had a lovely meal afterwards to celebrate our little victory.

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Nearing the end of RT

I am now nearing the end of my radiotherapy treatment, only 3 more sessions to go of the 25. It seems to have flown by to be honest. Its at the point where it is going to feel strange not going to the hospital daily.

I can tell the tumour has shrunk in size. I'd imagine it wouldn't be too noticeable to everyone else, but when I am are stuck with it 24/7, having the odd feel as I'm driving, the change to me feels quite significant.

I was warned of the side effects of the radiotherapy prior to the treatment, and over the last week, the final week of treatment, one of the side effects has really started to rear its ugly head. The whole area which is being treated has become tender and quite uncomfortable to touch. This I can live with, its just like they said it would be, like sunburn. The one area which is causing a lot of discomfort though is the back of my knee. The pain when I try to bend my knee is quite excruciating. The skin has started to crack and the area has turned a dark, almost black colour. Because of this I have developed a bit of a limp in my walk, to try and keep my leg as straight as possible to avoid the pain which comes with every slight bend. Stairs are the biggest struggle, I have to tip-toe on my right leg to try and lift my left leg straight onto the next step.

The nurses at Clatterbridge Cancer Centre have given me a supply of PolyMem foam dressing to apply to the area. Its clever stuff which cleanses the skin, absorbs any leakages from the skin and does reduce the pain quite a bit. Unfortunately it would seem there is no clever way of keeping it in place on the back of a joint which moves a lot. The surrounding area is also undergoing treatment so there is no easy way to stick the foam in place. This I learnt the hard way when trying to remove a plaster which was holding it on the back of my knee. I won't be trying that again. The fish net stocking which is supposed to help hold it in place also rides up and down my leg so that doesn't to seem to help much either. I guess this stuff is designed to help people who are confined to a bed or sofa, and only get up now and again to make a cup of tea, it doesn't seem to help much when your job involves quite a bit of walking and moving around.

Still, no pain, no gain. It obviously means the RT is doing its job.

I have engineered a solution for today at least, the old faithful foldback clip.

Emma and I are like an old couple. Me limping around and Emma in the late stages of pregnancy. The wonderful things which come out of each of our situations though, are worth every second for us. I just do enough moaning for the two of us.