Oo this is a tricky one…

Ah, the bank holiday weekend wasn’t bad at all, especially the one day the sun came out. The garden was our retreat and after much work we sat on our decking and took it all in. We love the sun. Sadly it has gone again but we will take it when we can.

Pete spent quite a lot of time yesterday after work (despite it being a Bank holiday) reading about the vaccination trial I am on. He found some really interesting information about how the heat killed mycobacterium has been around for a very long time. Read this excerpt;

‘In the late 1800’s Dr Coley noticed that patients who got an infection after surgery had a better prognosis. He created infections known as Coley Toxins. Although he had success this became overshadowed by Chemotherapy. (Over 100 years ago)!

The ability of this type of infectious vaccine to create immune response was first shown with BCG that protects against tuberculosis and is also still used today in the treatment of lung cancer and melanoma.

Mycobacterium vaccae was used on the same principle to treat leprosy and TB. Unexpectedly this also showed improvements in patients suffering cancer. This led to the development of: IMM-101 or Mycobacterium Obuense. M. Obuense has been heat killed so it is not infectious but still produces the desired immune response.

It is proven that cancers grow due to a deficiency in immune response and IMM-101 has been shown to encourage the body’s immune response and current clinical trials are being undertaken to investigate how effective this response is.’

So because chemo came along someone decided to put it on the back burner and forget all about it!

Why am I not surprised?

The vaccination sites on my arm have been ‘interesting’ this weekend. They have been pusy, yucky, growing, and painful. The one that I had first seems to have reactivated and is also giving out lots of gross stuff. Pete has been brilliant cleaning it with antiseptic wipes and dressing it daily. I try to leave it to air as much as possible but need to avoid getting them infected. I don’t think I will be ready for my next week next week. There is too much stimulation. Of course this activity does show stimulation of the immunity.  Pete read up online and he found another canSer survivor who was having the same treatment a few years ago. She too had the same response and was advised that it is good. OK I’ll take that.

 

I had a pranic healing session today and as usual it was very relaxing. In fact so relaxing I dribbled. Bearing in mind I sat up throughout! Pahaha! I was slightly embarrassed and had no idea there was that much saliva! It even left a dribble mark on my top…Shameful…

 

I’ve been thinking today, uh-oh… that’s never a good thing! I have been trying to work out what would I do if I didn’t have canSer? I have been trying to visualise living my life as I want it to be. That’s what I have been advised and I completely understand that you need to project where you want to be because your thoughts become your every cell and the mind can’t tell what’s real and what’s not. The problem is that when you have been living a certain way for so long, and for me it’s nearly four years, how do you switch that off?

Most canSer survivors will tell you that every twinge or ache and pain immediately puts the fear of God into them.  In a way having canSer and knowing where it is makes you feel more secure. You can kind of contain it. I would much rather not have it, believe me, but this is what the mind does to you.

Some people like being ill for all the attention. I am not one of them. I would gladly let all this pass but then what would my life be like? What would I be thinking about and focussing on?

We are all told not to focus on material things, that they do not give happiness. I know that love is the answer and I guess for most they have families to invest all their time and effort into. Women of my age generally have plenty of unconditional love all around them from their children. I guess I would try for a baby if I didn’t have canSer but I think I would have a fear of canSer returning. There I go again, not letting go. This is a tricky one.

This all came about because Pete asked what is the point of life? He too struggles with it. It seems so pointless when the love of your life will at some point die. one of us will be left behind. Now or in thirt years. I suppose the real question is what is the meaning of life? To me….

I have been thinking long and hard and I always put things together such as working more hours in a trade I love. But surely there has to come some positives out of this ordeal. I don’t want kudos or to be patted on the back and told how inspirational I am. I am happy to blend into the background. I think for me making Pete happy is my top priority. He needs oodles of love and I am the girl for that job. I’d like more responsibility so if I cannot have a baby then a dog would suffice. I think I’d like to volunteer my time and energy but I am not clear on how I would do that yet.

I feel that I have a duty to help others. There must be something I can do to give my life purpose, to give it more meaning.  I intend on my life being a long one, but I think I should live by my motto and that’s to ‘keep it simple’. I am going to keep on pondering on this one and will let you know if anything arises. Life after canSer feels like a world away at times but yet so close. More than anything I want Pete not to have to worry about me every second of every day. Despite knowing that worrying does no good, how does one switch it off?

For anyone that’s worried, I am not feeling sad. I am just asking the question that we all should be asking….What is the meaning of your life?

I’ll leave you all with that thought….

Light and Love. XX

A whirlwind!

Days fly by and before I know it five days have passed since my last journal. I do mean to put pen to paper more often but I get so caught up with life and when away from my desk it’s almost impossible to keep up to date.

There’s quite a lot to tell.

Firstly the fun stuff. Friday I had a lovely evening with my fella in a classy restaurant in London and a night in a funky hotel. We decided having little treats like that kept us interested in our favourite city. We ate at Berners Tavern, I would highly recommend it. It is a beautiful restaurant.

Saturday brunch (yes darling, brunch!) was a real treat too. We met a lovely couple whom we have been in contact with these past few months. Having met by telephone originally we decided it was time to meet in the flesh. It was so lovely to catch up and make new friends.

I may have accidentally fallen into some show shops whilst in London so we made a hasty retreat back home and spent the afternoon in the garden. The weather has been gorgeous.

Bank holiday Monday was a lazy day for many but for Pete and I we got up before sunrise and made our way to Heathrow. We had a quick trip to Duderstadt to visit Doc Nesselhut to have blood tests and blood collection for my next dc therapy there.

It was eventful as usual and it is like the United Nations these days! In the waiting room we met fellow warriors and discussed treatments and options. It’s eye opening and also comforting to know we are on the right tracks… we hope.

I had the opportunity to discuss a treatment plan with Thomas Nesselhut. Pete was being ultra organised and got his MD head on and we made a flow chart, naturally, of the forthcoming months and even years we hope.

We asked Dr Nesselhut about ‘antisense’ which we had been told about by Dr Hembry in February. He looked through my file and noticed that I had shown positive for the Epstein Barr Virus, which Prof Dalgliesh says everyone carries, but Doc said it was active in my cells not just present in my serum. This he said we should treat as it is a very inflammatory disease and causes the liver much stress. Right, ok then. Off we went for more blood taking to be sent to Greece for them to create antisense to treat that. Sometimes everything is a bit of a whirlwind but at least you feel like you are doing something. He also decided it would be good to get a full reading of my bloods and see how the t regs and everything are getting on. So off my blood went to Berlin.

Doc Nesselhut told us that the last vaccine I had was Anti PDL1 and P2X7. I don’t know much about it other than it isn’t something you can have regularly. He has said though that I will be having it again once more… I will be researching first!

We told him that that I am hoping for ablation and he thought it was a great idea. We did discuss sending him samples of my tumour that is currently stored but he said it would be best to get samples of the tumours in my lungs if possible. OK, on my list of things to ask Prof.

We anticipate that we should go back for dc therapy in July a few weeks after ablation to mop up the cells that could be floating around after ablation.  Of course we would have to travel by car as I have been informed i cannot fly after ablation due to the air pressure damaging my lungs.

If for some reason the immunotherapy doesn’t work after ablation we have decided the next step would be TACE with Prof Vogl, then if that fails I go down the chemo route of using the most effective ones found in the RGCC test. If by any chance the lymph nodes clear up then I can opt for laser surgery with Prof Rolle in Germany also.

All along side this I am currently using GcMAF and I think I will be adventurous and try to make the bravo probiotics (well Pete can!)

I may also ask Dr Hembry her thoughts on complimentary infusions. And not forgetting supplements and diet, exercise and so on.

In between appointments, I had a call from the UK. It was Dr Gonsalves from St Georges who will be performing the ablation on me. He said that unfortunately the 12th June was not possible and that now I am booked for the 19th June. OK well at least it is booked but oh my, I am waiting longer all the time. This makes me so anxious and I am so aware of how things can get out of control. I just hope I am beating it off (with a stick!)

In a small way it is quite good it isn’t the 12th June because my birthday is the following weekend. So at least I get to celebrate before having ablation, the last of my thirties!

We have agreed that I should visit him in clinic before the end of this month to get all the details (and costs!) He seems such a nice man. I feel very comfortable with him so far. He just reiterated I must not book any flights for two months after the procedure.

So that’s the plan… Do I feel better? NO! Am I ever happy? Well, yes, but fear is an amazing thing and the way it manifests itself. I am of course happy to know things are going in the right direction but I am so nervous of what is happening inside of me right now.  Gut feeling everything is ok….

After our brief visit to Duderstadt we headed off to a place that Pete hasn’t been to since he was small child with his parents. It was lovely and idyllic and we ate fish for tea…

Home now and running around like a loon trying to get everything done. I don’t know what I would do without Pete. He is amazing and really sorts everything out… Bless him.

 

Spartans ready! Aroo Aroo!

Following the distant healing on Thursday at the time the picture of me was to be shown to john of god I mediated so that I can feel truly open to any sensations. I felt incredibly relaxed and the time went very quickly. During the meditation my hands became numb and after I had incredibly heat in my mid back area. I tried my best not to be creating things in my own mind and I am sure I felt that. I won’t know until after the weekend when I should receive an email stating which entity John of God said worked through him to heal me.  Only time can tell now…

Bank holiday weekend- the last until Christmas. To be honest I could have easily stayed at home. After having been in Germany and feeling poorly all week I felt time in my casa would have been perfect but it’s not all about what I want!

So we headed to not so sunny Brighton on Friday night, it was moody and wet and continued to be this way on and off throughout Saturday. I had a lingering headache and convinced it was from the zometa infusion. It finally went yesterday, thank goodness.

I noticed also my weight had dropped below my usual weight. I have been eating the same but clearly being ill had stripped me of some of my goodness! Pete heard this and has been feeding me up ever since.

During Saturday, as no boating was to be had, we mulled around The Lanes in Brighton and stumbled across a new juice bar. I was thrilled and immediately bought one of my own recipes; pear, mint, celery, cucumber and orange juice-Delicious!

Sunday was the long awaited Spartan race for charity. The boys, one girl and Pete all congregated amongst 1500 other contenders. There was a great hype and I felt excited for them but also pleased I hadn’t entered! What was thought to be a 5K obstacle race, turned into a 10K steep hill, dangerous obstacle course that took over two hours to complete. They all looked a state but were still smiling at the end. I was so proud of them and they are continuing to raise money even now. Anyone who wishes to donate please click the link; http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=makingtriplenegativeapositive

 

 

Unfortunately prior to the race Pete slipped on the boat pontoon and cracked his knee and shin. He battled on however today his leg looks like a kebab on a spit! We have cut the bank holiday short and headed home and hospital is the way forward. I’m sure he’ll mend. He’s being very brave- bless him.

I am hugely touched at how the team pulled together and helped each other out. I’m very proud and thank every one of them for doing it for charity. Big hugs all round.

I’m feeling better in myself right now I just need to get back to exercising every day and really get into my routine. I’m at hospital again tomorrow for blood tests then back on chemo tablets … Time flies….

A perfect bank holiday weekend….

Another bank holiday weekend gone in a flash but a very memorable one.

Saturday was fine weather so the Bear and I got to cleaning the car for the wedding the next day. Pete was the chauffeur for the bride and brides’ father. He felt they needed time on their own to discuss whether she wanted to change her mind at all! It’s the cleanest the car has been in a long time! We had a very early night as we had to be up at six am to get to the venue and start prepping the bride.

Sunday couldn’t have been any better than it was. I took my ivory umbrellas with me knowing full well that if I did the weather would turn out fine. Well it was an outstanding day weather wise, so much so that we all got a little tanned during the afternoon.

My best friend’s wedding was at 11am so at 8am I was doing her makeup, her hair dresser making up her  hair and her sister tending to all her other needs. She looked beautiful.

The venue was Dorton House, a school during the week and wedding venue at weekends. Absolutely gorgeous with huge grounds. It was lovely watching the bride and groom talking all the way through the ceremony. Nerves were getting the better of Liz. Bless her. Pete and I got quite fluffy as they said their vows and their marriage became official. We held hands and it took us back to our big day. That’s the great thing about wedding, you remember your own.

The lunch was delicious and the speeches very emotional. We were all in tears as Chris and his best man and brother spoke about their mum who has passed away this year. Tears were flowing but laughter soon filled the air.

After lunch there was a three hour break before the evening do so we made the moist of the sunshine basking in the sun on a blanket drinking Pimms whilst the boys played croquet and giant jenga. How time flies when you are having fun.

The evening guests arrived, all 100 of them! And the evening became a great celebration fo0 love and laughter. Hog roast, disco and much fooling around to be had.

Apart from injuring my foot… whichc I still don’t know what i ahve done to it, the day was just wonderful adn i’m sad it went so quickly. They are off on their honeymoon now… Not at all jealous!

Pete and I came home and pretty much did nothing but sit in the garden all day. Josh, Pete’s eldest turned 21 this week and he came over to spend the day with us, chatting and laughing… In the evening we went for a meal to finish off a perfect weekend.

I loved people watching this weekend. One lady approached me( I have to admit I can’t remember her name now) but she told me she follows me on faceboook and my posts always make her smile. She thought I might like to know but didn’t know if it helped knowing? I said of course it does. It fills me with joy knowing I am making even just a little bit of a difference.

I know people know about me and the illness I have when at those do’s.  I know I don’t look ill and thankfully don’t feel it. I just need to knock it fully on the head now so that I can really be successes…. kick it in the butt.

This morning I did not want to get up. Pete wrapped me up and left me in bed… Big mistake! I decided that I would meditate in bed instead this morning.. That counts right?! But once up on with my usual rituals and back to being me…. Time to focus on the last stretch of getting rid of teh little buggers inside me…I’m not convinced they are there. 🙂

 

I saw some interesting news yesterday of a lady who has been making heart shaped pillows for women who have had mastectomy and breast surgery. I love this idea.

Heidi Kilgariff, 35, from Bracknell, had the operation because she has the same mutated BRCA1 gene as Hollywood star Angelina Jolie.

She says resting with the cushions under her arms helped ease the pain and give support after surgery.

Ms Kilgariff has now signed up dozens of volunteers to make more cushions. They are being delivered to women across the UK about to undergo surgery and come with a hand-written inspirational message.

Ms Kilgariff delivers the cushions to her to her local hospital, Frimley Park Hospital in Surrey. Other volunteers have joined her campaign and deliver to other hospitals in the country.

She said: “It’s got a very deep V that goes under your arm.”It just takes the pressure off the wound and just gives that extra comfort underneath.”

The original design for the cushion came from a nurse in Denmark.

Ms Kilgariff said they were very simple and easy to make: “On the sewing machine it probably takes someone five minutes to run one of those up.

“There’s people doing sewing lessons for us, sewing groups are doing them, children’s groups are doing them, churches, it’s just gone mad.”

Dr Hannah Bridges, senior information officer at the Breakthrough Breast Cancer charity, said: “The fact that people will dedicate their own time to make these pillows, just to show someone they understand what they are going through at this difficult period when they are having this surgery, is a lovely thing to do.

“With the cushions the idea is that they make people feel more comfortable, it depends on how they want to use them though.

Here is a link on how to make them; http://www.heartpillow.dk/