You never know what tomorrow may bring…

The weekend was unexpectedly great. I knew we had a fun time ahead as our friends were coming to visit but sometimes it’s great to having any expectations and it turning out lovely.

It always surprises me that you never know what tomorrow may bring. The weather was gorgeous and we had plenty of time revelling in our back garden. Friends arrived and cooked us a tasty Chinese meal, then sang round the chiminea until about midnight. (Sorry neighbours!) It was so relaxing and probably one of the most memorable evenings in ages.

 

 

I had no particular plans for Sunday. Once our friends left all I thought was that it would be really nice to relax reading in the sun, hang out washing in the fresh air and take it all in. Pete had other plans and off we went to a big DIY store apparently to look at prices. We came home with a power jet wash and got to assembling it and then ‘trying’ it out. Oh my god… it is so satisfying watching each every patio slab and decking plank change from grotty black to bright natural sand and brown colour! Once I started there was no stopping me and by the end of the day I had completed the job. This had been on my list of to-dos for ages and I didn’t really ever expect to achieve especially I had no idea we would buy some decent kit to complete the job.

I felt a natural high and I can’t stop looking outside at the wonderful results… How funny that something so mundane to most seems so exciting to me!

But it all comes down to not knowing what each day brings and keeping an open mind and going with the flow.

I spoke to my friend yesterday who has been to see Professor Stebbing, a triple negative specialist in London. I have been recommended to him over a year ago but never went to see him. I recently felt the urge to get an appointment but hadn’t had any reply. As usual I thought this was just how it is as all other doctors don’t usually reply at any great pace or I get ignored completely.

Spurred on by my friend I made the decision to email him on a Sunday never expecting to get a reply. I did and his PA emailed me too. I have finally got an appointment. Yay!

I felt quite excited by it as I have been told he is very committed and caring. He believes that secondary cancer will be classed as chronic disease within two years. Well I best stay alive another two years at least then!

A delivery of books arrived at the weekend also and I started reading about having a charmed life. It’s a bit like, once you start looking for the positives and the little miracles, they start coming all the time. I guess that kind of happened this weekend in more ways than one. The more you look for them there they are. It has really perked me up and I feel like I am living much more in the present. I am back to feeling like I have drive and less afraid.

However, I still feel a bit unsure about what to do with regards to treatment but in the meantime I am pursuing GcMAF homecare. I have successfully injected myself and today I have used the nebuliser. (Actually feel a little light headed)

But I will proceed with booking for Germany. Saturday morning, the first day of the week that Pete gets a lie in we both strangely wake at 4am. We both got chatting and I felt it was a good time to discuss my worries about what to do treatment wise. We both agree that doing immunotherapy with Doc Nesselhut and then TACE with Prof Vogl is necessary… my reservations are whether I should simply stay here in the UK and have chemo on the NHS. Pete says that we should keep that as a back up and get going with Germany. So I have provisionally booked hotels but not flights yet. I am booked to see Prof Dalgliesh this week and I wonder if he might be able to shed some light, steer me in the right direction or something!

My friend counselled me at the weekend by saying that I should follow my gut. My gut isn’t totally sure at this stage. I think this one will take time to organise but I only have a few weeks. Eek!

All I know is right now at this moment in time I feel good and I have to hang onto these times. I must not take for granted feeling well and symptom free.

 

Day five…Taken up the Eiger.. Ooer Mrs!

Sleep! Last night I had an amazing sleep. But that was after having pain in my heart/chest. I’ve noticed the last two nights my heart racing. I am putting it down to having the amino acids that were prescribed by the clinic. They do advise not to have them close to bedtime. I took my last dose at 6pm. That’s hold be plenty of time. A little worrying but thankfully must have calmed down as I had one of the best nights since I got here.

My appointment went well. I think. I had my next round of treatment then I was scanned by the German doctor there. They feel the blood supply in my spleen looked really good therefore indicating the macrophages were doing their work. They weighed me and took all my measurements like the beginning of the week to see if my muscle mass had improved. No. In fact my weight changed three times on the scales in 30 seconds. I have in fact out on weight, lost muscle mass and increased my BMI. This doesn’t bode well. I am taking 30 amino acids a day… how is that possible? I am not sure that the scales were right.  My scans will be seen by Prof Marco and he will be sending me a report of how he feels things went and what to do next.

This afternoon Pete had a little surprise for me. We drove for about two hours into the mountains and we ended up in Grindelwald where many films have been made but

most importantly it is a ski destination. The sun was shining the mountains looked stunning too. Pete had been talking about taking me to the Eiger all week. The Eiger is featured in movies too. We had a blissful afternoon sunning ourselves and walking in the mountain air.

On the way home we stopped by the most amazing lake where there was a diving board to swim in it. Tempting but maybe a bit cold at this stage of the year.

We got home and had a little picnic in our room. Thank goodness for Aldi! Ha ha!