Squeezing everything out of life….

I am so sorry for the lack of blog since my last one, which was quite an exciting one! I have been ultra busy since then.

Last Wednesday I went to London to collect more interleukin two injections and also had a quick chat with Professor Dalgliesh. He seemed very excited when I told him that Professor Harris had supported his work and said that he feels I should continue with his treatment. Professor Dalgliesh said he really respected Professor Harris. He wishes that it was the same for the doctors at the Royal Marsden. It seems crazy that all cancer doctors aren’t all supporting each other. This is why we are no further forward with a cure or a vaccine.

I started having the injections that evening and finished Friday evening. As before, I had fevers and very disrupted  sleep. I eased the pain and fever with paracetemol but it seems to have quite a bad effect on my stomach now too. I get stomach aches when having my green juice and supplements in the morning and over the weekend I even felt nauseas for a while. Pete says it seems to affect me worse than chemo did. I felt ill over the weekend, generally under par, emotional and grotty. I even went to bed last night feeling achy and off. I had diarrhoea for most of yesterday too.

I actually forget that I have been having the injections and start wondering what can be making me feel rough. But then I think back to the last round of injections and remember feeling pretty rough for that weekend too. I think maybe it is an accumulation of it. The lumps where I inject in my tummy are still raised and itchy. I hope they go away soon.

Thursday was an exciting day for me too. I hopped on a train to London yet again, this time to meet my friend who arrived from Ireland for a few days and to go to a photo shoot. Breakthrough Breast Cancer had contacted me and asked if I wanted to take part in a magazine feature. Prima Magazine as part of October Breast cancer Awareness Month wanted to tell the stories of five breast canSer survivors, me included. I arrived at a cool studio in East London and was greeted by Jo from the magazine and the photographer. There was lots going on with the other ladies choosing clothes and being made up behind a screen. I have to admit I had thought on the way there, ‘Why did I agree to this?’ As usual my nerves were kicking in and I am not great in front of a camera. My cheeks twitch and I feel a bit like Chandler from Friends in the episode where he has his photo taken with Monica celebrating their engagement. I knew it was going to be fun and it’s so lovely to be asked and to think that people may want to read about me.

I was shown a rail of clothing and met the stylist and her assistant, who said I looked trendy and that she hadn’t bought anything along for someone so trendy. That was really sweet of her. I did find something I wouldn’t normally wear but all the other ladies were wearing bright clothes so I decided to join in. Being made up was very relaxing (I especially liked the eyelash extensions. I looked like a cat from a Disney movie!) and talking to the other ladies was so interesting. We had so much to share about our own stories and they have all overcome so much.  The ages started from 34. Many of the ladies there are part of other campaigns for other charities such as the Look Good, Feel Good campaign and the Breast Cancer Care fashion show later this year at the Grosvenor Hotel. They are all so confident and brave and I thought they all seemed to love life. We discussed juicing and diets along with our experiences with chemotherapy. I was the only one there with secondary canSer I believe. I discussed with the stylist who is also a survivor, the treatments that I am currently undergoing. Everyone I spoke to seemed in awe and didn’t really know anything about the treatments such as immunotherapy.

When we finished there my friend and I hopped on the tube and met Peter and his colleagues who had been working in London all day for a cheeky little drink before our journey home.

Friday I spent with my friend showing her around Oxfordshire and having a lazy lunch and did a spot of shopping. Back home, I did her a shellac manicure, HD brows and teeth whitening. She was well and truly pampered. I loved making people feel happy. That evening we went out for drinks and a meal. All throughout these days I was trying to ignore the side effects of the injections. To be honest I struggled at times.

The weekend flew by and by yesterday I felt a mess. I wanted to do so much but I really needed to chill out. Pete looked after me as usual by rugging me up on the sofa and Kitty even joined me for Sunday afternoon cuddles. The first time in months.

Throughout this I have been trying to keep up to date with emails and have been contacting Dr Hembry in Bristol. I have enquired about having some infusions. I don’t want to become complacent with the treatment I am having and I believe keeping canSer on its toes is essential. The infusions I requested are; artemesinin, NaBic, B17 and salicinium. This is because my RGCC blood test showed I would be responsive to these. Sadly Dr Hembry can only help with one of them so has given me details of a doctor in London who I have today emailed. He has already replied and said he can help with salicinium and artemesinin. I have to get consent from my gp or consultant before proceeding but in the mean time I will get more information and the costs for it.

Today I am back to my usual rituals and I slept pretty well (I love fresh bed covers!). I did wake for a while, worrying about stupid things, not health related. It’s unlike me but apart from that I feel much better today. My stomach is aching less and I feel much brighter, so much so I could exercise this morning.

There is so much coming up in the next few months I think I am feeling a bit overwhelmed. Silly me. Letting my head take over again. I must take a deep breath and take it all in and enjoy life.

Here are some snaps of the photo shoot. I will be featured in Octobers’ issue of the Prima magazine which is out in September.

 

 

The lovely ladies organising the day….
Styling us…
A quick snap of a four of us….
A sneaky peek of the computer…..
Modelling skills come naturally to us…

Back from Germany, the first round of vaccinations for this year. So much to be happy for.

I am back from Germany for the first round of vaccinations for this year.

We left early Sunday morning and flew to Hanover then drove to Duderstadt where we stayed for the two nights during the treatment. Luckily all flights left on time and it was even snowier than here in Germany…-8 degrees. Ouch..

I love going to Germany. I have said it before- but it is like going to stay with an old friend. I love the hotel we stay in and we have all our evening meals there. Following the advice of Kelly the dietician I factored in eggs for breakfast and fish at my evening meal. I have to admit it was good to be eating those again. However as usual by this morning I was looking forward to my juice to start the day. My last day of chemo tablets was yesterday so today was also the first day where I didn’t have to eat something to go with the tablets. I love eating but for me juicing is sometimes all I need first thing.

The first day of treatment included a Newcastle disease virus injection as well as heat and air. We couldn’t do much that afternoon as the snow really came in and it was too dangerous to drive around but probably for the best as I started to feel ropey. A bit like I was coming down with something like the  flu. It didn’t last long as I was up and fine for my evening meal. That night I barely slept which was such a difference to the night before when we had 12 hours sleep!

The next day, Tuesday, I had more heat and air and this time my chest had been aching throughout the whole treatment. I almost wanted it to stop. But I didn’t of course as I want those little naughty cells to feel all confused and be gotten by the NDV and the vaccination.

Later that day we went back and saw Dr Nesselhut Senior. He is such a lovely man and so clever. He told us all about how he has partners in New York and Hong Kong. He has also a met a lady who works for a university researching cancer studies and they are going to be working together combining their work. Dr Nesselhut says it is very hard to be recognised in this country as he doesn’t work for a university however the lady who he is going to work with is also editor in chief of a well known publication and she has said that she will publish his papers on these studies and his work. This is great news for him. Let’s face it all he is trying to do is cure cancer. He told us of the success stories he has had in the past years and seems to really have a plan for me and what to treat me with. Depending on the research findings in March I could be having the treatment that they discover?! Crazy eh?!

In the meantime I had two injections by him. One under the skin which was my cells primed with NDV and something else, all I know is that a big lump came up on my arm and it hurt! (Baby!) Then he injected into my vein another vaccination that on the first beat went straight into my lungs.

He said he had another patient who had metastases of the bones, brain and lungs. The normal vaccinations had done a great job on her bones and brain but not her lungs so he injected the same into her vein and the lungs were also sorted! Blimey I have everything crossed. Of course on paper it all sounds so doable but the thing with us humans is that we are all different; different lifestyles, sizes, genetics and so on. I did confirm with him that I still have the P2X7 in the cells also. He said again that my dendritic cells were excellent and he can’t decide if that it is just me that isexcellent or the work his lab does! J I say it is clearly…… Me! Ha ha! I wish.

As soon as I had the jabs the aching in my lungs went. I’m hoping that’s not a coincidence.

We discussed the naltrexone that he prescribed me and he asked if I have been feeling happier. I said I thought so. I didn’t feel as down in the dumps for as long as I normally would after getting the news from the hospital in December. I also wake up in the early hours feeling really motivated and excited…I definitely feel optimistic. I sometimes have fleeting moments of being emotional but I have recognised that is when I am tired and hungry. I am like a baby!

He then went onto discuss prescribing me Metformin, a drug used for diabetes. Apparently research shows that it does some good in preventing and stopping cancer cells growing.

Metformin not only exerts a major protective effect against cancer development, but those who develop cancer exhibit a significantly higher survival rate, including those with malignant cancers of the lung, colon, and breast. Also when Metformin was initiated, the greater the preventive benefit.

There’s additional evidence that Metformin not only prevents cancer from developing, but also helps to improve the prognosis in patients who do develop tumours. In one study of breast cancer patients on chemotherapy, 24% of those who were also taking Metformin had a complete response rate, compared with just 8% for those not taking it.Numerous recent studies further support a close association between Metformin use and substantially reduced cancer incidence, along with improved survival.

Metformin operates at the molecular level by activating adenosine monophosphate-activated protein kinase or AMPK, a molecule essential to life. AMPK or its molecular analogs are present in virtually all living organisms. It also happens to be intimately involved in cellular processes whose dysregulation play a central role in both diabesity and cancer initiation.

Cancer results from disordered regulation of cell growth. AMPK is critical to normal regulation of both metabolism and cell growth, as a result of millions of years of evolutionary development.

As a fuel-sensor and metabolic master switch, AMPK recognizes and responds to changes in cellular energy levels, determining how fats and carbohydrates will be used in storing or utilizing energy. In metabolic terms, AMPK tells cells to conserve and generate new energy stores. In so doing, it lowers sugar output from the liver, increases glucose uptake from the blood, maintains insulin sensitivity, and ultimately lowers blood sugar.

AMPK exerts similar effects in terms of regulating cell growth and replication, instructing cells to conserve energy, slowing and often shutting down aberrant cell growth entirely. In essence, when AMPK is activated, incipient cancer cells starve themselves to death for lack of adequate energy supplies.

As well as this taking Metformin can prevent Alzheimer’s and Parkinson’s disease. Wow…. Needless to say I now have it! The only down side is that it can cause an upset stomach. I have never taken so many drugs. I would normally be against taking so much but I have to give it a go. Every little helps. And who knows I may be living till I am 150 at this rate!

The journey home was a doddle despite the weather and we arrived home at 9.30pm last night. On the way back I did have a hot flush and became feverish. It didn’t last for very long but it was very unusual. Then I noticed the lump on my arm had gone completely. This again is unusual as the last vaccination stayed as lump in my arm for about a week… I’m all a bit excited. I just hope this is working. I feel like it is but then I thought that last month.

Dr Nesselhut also confirmed that he has a friend with a brain tumour who had been having vaccinations. One month his tumour appeared to have grown a lot as the CT scan stated. So he had surgery to remove it and the histology of the tumour actually showed that most of the mass of the tumour was in fact denr8itic cells and not cancerous ones. That makes me feel a bit better. It’s such a tricky thing eh?

I just know that today I feel great. I got up and got on with my chores, exercised (I’m very aware that I need to increase this as Kelly said that chronic tiredness can be alleviated by exercise which causes acute tiredness by releasing endorphins. That’s a good enough reason for me to exercise if any) then did a spot of painting in my bathroom. I am feeling really positive and am looking forward to the future.

Today I was meant to have a CT scan booked by my hospital consultant to see how the chemo drugs have been doing but due to the vaccinations I have postponed them for three weeks. It gives me more time and hopefully there will be something to be happy about…..

I’m looking forward to my Bear coming home. He has to work so much harder when he has been away with me. We both have such a lovely time together but it makes life difficult, especially money. All these things cost and he is working and worrying I know. Bless him. An amazing man. I love spending all my time with him. I miss him when he is not here. ….. Not long till he comes home I hope. Looking forward to a vegan dinner!

Back to early nights in my bed… sigh……..