Returned from Germany with changes afoot….

My mission currently is to stay healthy and to get fitter. That is why I now go to a personal trainer for a few half hour sessions to motivate me and distract me on days like today. I have no reason not to feel chipper but I feel tired and sluggish which is probably due to treatment in Germany on Monday and Tuesday.

Fitness is the key. It keeps us well, it’s social and can make one believe anything is possible. Last Sunday Pete and I decided to have an exercise session to start the day then we went for a long walk (or climb as I like to call it!) to White Horse Hill. Boy that was steeper than I expected but it felt great to be up overlooking the fields and breathing in the fresh air. I am trying, really I am. I know it’s my head more than my body that stops me. But as I have been told, I have to allow days where I am not bouncing with energy.

Todays’ session was great. In half hour I did some tai chi moves to warm up, some pilates moves to work my core. I used one of those funny half ball things to balance and jump whilst doing squats and lungs, I twisted whilst using a medicine ball and some! I now feel great, satisfied and pleased I made the effort.

 I had treatment at Dr Nesselhuts’ clinic at the beginning of this week, but things are changing. It seems that the pharmaceutical companies are now taking control over the doctors. Nothing much to be said but there are changes to my treatments and the future is uncertain there. It’s the first time in a long while, I have come away without having booked my next appointment. Who knows what will happen?

The treatment I did have has sparked a response in my arm as usual, and is swollen and itchy and a little lumpy in places. It will probably be gone by tomorrow.

I have contacted the hospital to ensure I have my next CT and MRI at the end of April, making it three months since my last scans. Pete also felt it is now time to see Professor Dalgliesh again. It’s time to discuss what has been in the news regarding the breakthroughs and the genetic treatments available. I have also contacted the Dr who suggested genetic profiling a while ago to see if that something that would help me with potential bespoke treatments. As well as this I wondered if now I would be able to have laser treatment with Prof Rolle, a well know thoracic surgeon. I have contacted him and he wants me to send him details and scans so they can consider it.

This is all assuming the next step. I am not being pessimistic but I have to keep one step ahead. We know that Dr Nesslehuts’ treatment doesn’t cure me. Last year and a few years before I still had progression despite his immunotherapy but I do believe that his treatments keep me well and who is say it isn’t keeping the tumours stable as they have been for some time now, especially the brain.

We do know Prof Vogl’s treatments do have an impact on the tumour sizes but I am hoping that the ablation I had in January really is going to send the larger tumour in my right lung packing.

Not forgetting everything I do at home. It all counts. Pete and I were saying the other day, wouldn’t it be ironic if it was the DMSO injection that costs £25 that is doing the trick or what if the supplements I take now are the one thing that is working?

That, we don’t know, and that is why we have to keep searching and moving and staying alert. But bloody hell, just give us a break. That is what Dr Nesselhut said to us too. He said you need to live, so having a few months until the next scan and treatment is good. And it is good. I know that and I am not going to waste my time worrying as we all know worrying is wasted energy.

In the last few days my ribs are hurting more. That bloody cough still hasn’t gone. I feel I am doomed to harbour this annoyance forever more! (Dramatic enough??) It just proves the irritation from the ablation is still there. But laughable that I have to wait until July to go to the pain clinic to try to stop the pain in my ribs! That’s the only appointment date I could get for. Ho hum…..

Easter is around the corner and holidays, hopefully, to plan for. Time with my love and loved ones. Making memories.

Love and Light.

 

XX

 

 

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