The fact is ‘things’ don’t make you happy…

My trip to Tooting was a doddle on the train last Thursday. I arrived nice and early and the lady who was meeting me had everything prepared. I packed my bag and got straight back on my way home again. Simplezzzz.

I started that evening with the first of three interleukin 2 jabs. I found a new little area on my tummy to inject and in it went. That night I started to feel headachy and flu like again. I didn’t sleep at all. I am so surprised that 3ml of the stuff has such an effect on me. I am not complaining!

The next day I did the second one and I thought I definitely won’t feel rough again… wrong! This time I took paracetemol to alleviate the symptoms and slept much better.

Since then I have also started on the scorpion venom… I know it sounds hilarious. I take 1ml under the tongue and hold it there for five minutes. Seems fine so far. It’s too early to know if it is actually doing anything. I am repeating it three times throughout the day.

Saturday was an exciting day… For the last fifteen years Peter has wanted to go to the Air Tattoo at RAF Fairford. I booked it for his birthday treat and invited some friends up from London. The weather forecast wasn’t great but we had everything crossed.

The day went like a dream. We watched the whole display in an enclosure with brunch included and the Pimms flowed. The sun shone and we were so happy we could see the aircrafts making their beautiful patterns in the sky. For us the Red Arrows are always the best… well they are British after all! Pete had a small tear… Bless him. We both said a big thank you to the Universe for the day being so lovely.

 

Yesterday we said goodbye to our friends and headed down to Brighton to our boat. Sadly we had to pack up our belongings on her as she is being sold. It isn’t complete yet but hopefully it will go through. Reluctantly we are selling because we need the funds for more treatment.  Pete was devastated and it was actually very emotional being there and seeing how wonderful she is. She has looked after us through some turbulent times and we have laughed, danced, sang, had barbeques, cuddled up and cried on her in the last four years. She has been there the whole time I have been diagnosed. It’s the only place Pete sleeps like a baby in her womb-like cabin. It’s like she has a soul and we felt like we were betraying her. I felt terrible. I have never adapted to boating like Pete so for me I thought it wouldn’t be so hard to let her go but actually I felt such sadness and guilt combined.  I hate the fact that Pete has to let go of something he loves so much. But he says he loves me more and will do anything for me.

The fact is ‘things’ don’t make you happy. We have many memories- good and bad of Waterloo Sunset but ultimately we have more freedom and more new experiences ahead of us. With great sadness we left her behind all ready for new adventures with someone who cares as much as we do, hopefully.

Last evening was the World Cup football final; Germany against Argentina. As you know we are huge German fans. I had crossed everything in the hope that they would win just so that Pete’s day would improve ever so slightly…. And they did! Yay! There was a least a little smile on the Bears face before bed.

 

 

Today is Bears birthday and I can’t wait for him to come home and open his presents and have a wonderful evening together. He may be older but he gets better with age and more loving and caring, if that is at all possible. Happy Birthday My One! XXX

The scab and goop stuck to my bed… Gross!

Didn’t really sleep last night mainly due to worrying about waking up early this morning. Why do we do that to ourselves? I got on the road to Tooting ultra early mainly because I know how long it took Pete to get there last week when he was visiting me.

I arrived by 8am and my appointment wasn’t until 10am. I guessed ghee time would fly catching up with Pete on the phone and having a cuppa at the cafe.

I checked into reception at 9.30am. It seemed like quite a small oncology department but was clean and new. I was greeted by a lovely nurse who seemed to know all the patients and was rushing around ensuring that the Prof had everything he needed. I was quite impressed. It’s very interesting seeing how different hospitals operate.

I was seen about half hour late but this isn’t anything compared to the Churchill in Oxford which has delays of up to two or three hours sometimes.

Prof Dalgleish asked how I was doing and discussed the vaccine site on my arm. It has been a week since I had it done and now it was hugely open and pusy. Last night I must have slept on it when it had a scab and was like a volcano. When I woke this morning all the scab and goop inside was stuck to my bed.. Gross. The volcano lump has gone and now I am left with a gaping hole like before. It’s really sore and I aim to keep it dry and untouched.

Prof explained about the injections I was there to pick up and start administering. He has provided me with three syringes containing interleukin 2. I have had this many a time at Dr Nesselhuts. The syringes contain a tiny amount and I am to inject myself in the tummy every night for three nights. I may experience flu like symptoms but they will pass very quickly like a light switch. I have never experienced flu like symptoms before but you never know? He also told me that the vaccination sites on my arm may be deactivated and become very pusy again. Oh well that’s the way it goes.. But he said that is great because it shows my immunity is really active.

He said he doesn’t really know what’s going to happen. This is a trial of sorts and he mainly deals with melanoma. So we just have to wait and see. I told him that I have a scan booked for the end of July so it will good to see what is going on since the ablation and all of the immunotherapy.

The idea is that the il2 stimulates my own natural killer cells. So that will enhance the ablation and the IMM101 vaccinations.

He told me that he had a melanoma patient who had some lesions ablated and that the imm101 and il2 combined made the other lesions in his body die. I am not sure if he has more than one success but here’s hoping so. He says he knows this works well in lung canSer patients too.

I don’t mind being a guinea pig. I have been for two years I just had it combined with conventional treatments too. But from what I know so far from my last scan is that having just these treatments the canSer isn’t progressing hugely and in fact some of the tumours were actually declining.

I left with an ice box containing the injections and set off on my way home. There was plenty of traffic because of the Wimbledon tennis tournament. Oh how I would like to be there watching a game.

It took me what felt like ages to get back. I felt pooped when I got in so I grabbed a blanket and sat in the back garden doing some homework.

This is where I am typing this blog from. It’s nice, clouds to break up the heat and a slight breeze.

I am making my second batch of Bravo Probiotic yoghurt or in the process of it. I started it yesterday and it is currently fermenting. I have run out of the last batch and I am getting used to its funky taste. My kitty loves the stuff. She has been licking my bowl clean every day. Pete has even tried it and says he doesn’t think it even needs sweetening of any kind. I definitely think it must be doing some good. I like to think my gut health and immunity are loving it.

I’m going to make some guacamole and a large mackerel salad for our tea then I’m not watching any football! I am putting my foot down! Ha ha! Oh who am I kidding.. I can’t say no to the Bear.. I’m going to have an early night.

Night all. X