Pessimist?

I received an appointment letter yesterday saying that Mr Chandrasekar wanted to see me at 9am today. As far as I was concerned I didn’t need to see him until my next appointment in January so to say I panicked is an understatement! My night was spent wondering and thinking:- what if the grading was wrong? What if they didn’t get it all? What if it’s spread?

I braved John’s driving and we arrived at the Royal 10 minutes early despite the busy and annoying roads. What is it about the UK and merging three lanes to two? This almost resulted in us being squashed at least five times.

John dropped me off and went to the car park….which only opened at 9am…..how ridiculous is that??

My heart sank when I was called into the same room where they diagnosed me 😦 a second later a smiley Dr Chandrasekar walked in. He wanted to check on my knee and to make sure I’m not pushing myself. I need to continue with the crutches and be careful not to put too much pressure on my knee. I have two and a bit muscles left and only one fully functioning so I will be in deep trouble if I damage my knee and muscle.

I have to go back at the end of Jan where I will have a chest scan and get the results that day. That’s great as the wait for results are agonising.

Tomorrow I am back at The Royal to see the Radiotherapist Doctor so will post again then.

The support and service that I am receiving is amazing and I am so grateful to the Sarcoma Team. Without them, this journey would have been so much more harder. They are angels on earth.

One thing I have learned today, the glass isn’t always half empty!

p.s By the time John had arrived after parking the car, I was sat with no pants on with my leg being photographed! 😀

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Today at Broadgreen…

Next steps?
Went to my appointment today at Broadgreen with Dr Ali. He has discussed the possible next steps of treatment:

1. Chemotherapy – the sarcoma that I have is receptive to chemo. However there is little benefit to doing this treatment as the tumour has been removed. This would be 4/5 months treatment and would make me ill.
2. Radiotherapy – he feels that this should be considered due to the aggressiveness of the cancer. The side effects are tender skin and stiff joints. I don’t care as long as it helps to reduce the risk of this thing returning!

I am still continuing with my physio on a weekly basis and this is progressing really well. We hope to get to one crutch soon 🙂

Great fundraiser

Macmillan are hosting a gala evening of the Bodyguard in Londons West End….. looks fabulous!!

click to see their page

Well thats me folks, am off to Nando’s for tea with great friends. Have a great weekend everyone xx

Good things come to those who wait….

I have had a good week, I am off the pain relief and the diclofanec, so the only medication I am on is the daily injection to prevent blood clots.

I had physio this morning. It went really well and I managed to lift my leg up, not very high but it left the bed. It was strenuous but still, a great feeling! My physio (Joe) was really pleased with my progress.

Goal
My goal is to be able to drive at the end of this, so I asked Joe if I would be able to drive or if the damage would prevent this. He won’t commit, however he has said that the progress I have made is great and we can discuss in the future when my leg is stronger. He didn’t say never though!

Sara, the Sarcoma nurse, called me this afternoon and said that my surgeon doesn’t want me to overdo the bending of the knee. Last week I could only bend my knee 30 degrees whereas now I can do this to a 90 degree angle.

I also received a call from the radiotherapy department at Clatterbridge, I have an appointment to see the radiographer next Friday at Broadgreen, hopefully I will find out what the next stage of my treatment looks like.

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Challenges in public…

Had physio today at St Helens hospital. I did some gentle exercises and came away with a list to do myself at home. The trouble I have is that I have learned ‘work around’ techniques to move my leg, I.e using my heel to grip things, using hip to move leg, using my left leg to move my right one. I need to get myself out of these habits to ensure that I start to strengthen the remaining muscles. My leg is aching so it’s obviously working! On the way out I was struggling out of the disabled door when an rude and inconsiderate man (who was able bodied) barged through almost knocking me over. In his rush, he expected me to wait and struggle on while he, who is clearly important, got to his appointment on time.

John and I went to Blackpool tonight to have fish & chips and to see the lights. We had tea at a cute little chippy and on the way out we nipped to the loo. There was a huge queue for the ladies and the disabled loos were also engaged. I patiently waited until a woman with a young child emerged. It was evident that neither of them were disabled and I think the shame of having to face two people waiting for the loo who require this facility more than herself was enough to prevent her from doing this again.

After tea, we managed a cheeky sit down on the front….it’s great to get fresh air and I certainly appreciated it more than I would have in the past.

These examples of ignorance did not detract from the overall enjoyment of our date. We had a great night and we are now settled watching a bit of Keith Lemon.

Today’s events made me realise that the are people out there who think that they are above rules and lack morals. I hope that this doesn’t become a daily occurrence as I think I have enough to deal with…

I am back at the hospital on Monday where I will find out the next steps for treatment of my illness. I should hopefully find out the grading of the cancer and how much they managed to remove. Fingers crossed.

Goodnight and will update on Monday after my appointment xx

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