Back home…..Waiting for a call from Dr Hembry…

Our last day in Switzerland was spent in Geneva. It is so beautiful and classy with lots of expensive shops. Lucky we didn’t go there sooner and have more time! Pete’s credit card may have taken a hit.

We got to the airport with loads of time and I was happy as usual to be going home. My own bed was calling me!

Sunday was just wonderful. For the first time in ages we had a sunny warm day here and I relished putting my washing out the line. (Sad I know…) But it’s the small things that make me happiest.

I have put the GcMAF I was given in the freezer and await instructions of when and what to do with it in the future. It is now Tuesday and I suspect they have been pretty busy at the clinic in with new attendees and finishing off with those that stayed over the weekend. I hate waiting (if you didn’t know that already!) and am eager to know what to do next….

Yesterday I had to catch up with clients that desperately needed some TLC and mostly their eyebrows tamed. I had to start the day with my rituals and catch up on homework as I am lagging behind the health coaching course. It’s amazing how much one can get done in a day. Ten clients later and finishing at 7.15pm Pete and I did a short stint of yoga to wind down before our evening meal…

Before I went to Switzerland I visited Dr Hembry and had blood taken for blood tests to show what my circulating cancer cells are sensitive to with things such as chemotherapy, complementary treatments and medicines and so on. It takes a while but I have just had the results. Looking at them it is gobbledygook. I am currently sitting waiting to speak with Dr Hembry so she can decipher them. On the first look there are some surprising results. It lists chemotherapies and how sensitive in percent. The first thing that caught my eye is Eribulin, which is the chemo the docs want me to go on next is 85%. It’s one of the highest on there. Capecitabine which we know was quite successful for about a year was only 75%.

I will wait till I have spoken fully to the doc then give a proper summary. I hope also to find out what my next move should be if any.

On returning I had a pile of post and in it was an appointment for another ct scan for yesterday. I called and found out that they wanted to get a baseline before I started chemo, which was due to start today. I have postponed it until the end of April or thereabouts. I want to go down different avenues before I leap into systemic chemotherapy again. Well at least wait and find out about the blood test results and what my options are.

As we speak the phone is ringing and it is Dr Hembry… so tomorrow I will give a huge update as to what happens next for me. Dun Dun Derrrrrr….. Dramatic enough? Ha ha!

What has changed since yesterday really?

So yesterday I had the results of my scan as you know if you read the guest blog by the Bear. I have to admit I had a heart flutter the moment I saw the email with the results in it. That rush of adrenalin that makes you shake and feel sick. I suppose part of me wasn’t surprised. I am ever hopeful that the results will be amazing but sometimes I am just living in a dream world.

Pete had prepared me for the worst as he expected things to look larger as they did last year when I had just started DC therapy. Starting GD therapy in August and then again in October was clearly going to have an effect. I suppose I just thought it would be smaller or gone. I guess I am hoping for that miracle to happen. Talking of miracles I also hoped that John of God may have done his thang. You never know he may have. There is no way of knowing if in fact it was larger or indeed spread more and this is in fact good news. But I guess I will never know that.

Today is like every other day. The results weren’t what I wanted to hear but other than that was has changed? I am still feeling as great as I always have. I exercised, meditated, did my usual morning rituals and got on with my day working and taking and collecting Pete from hospital (Yes it was my turn to take of someone for a change rather than be the one taken care of!) That’s what I need to remember. That it realistically is only a piece of paper that has some rather abstract detail on it that they presume is disease progression. Of course in the NHS’s eyes that is what is happening. They can’t differentiate between cancer cells and the gamma delta cells.

On the same day as my results I received a book in the post that I had ordered from Amazon. (They must love me. I spend so much money on Amazon!) It is called Mum’s not having chemo by Laura Bond who has a blog in the same name. It details all the research her and her mum did during her mum’s time having ovarian and uterine cancer. She went to every corner of the globe to find out the best alternative treatments. I have only read a few chapters but it has given me a spark to contact some of the doctors she has spoken to. Some of the doctors, for example, do blood tests to see what treatments will work on your kind of cancer as well knowing what herbs and alternative treatments can work for you. This is just the tip of the ice berg and I cannot wait to read the rest of the book. The problem is that I must read my current book first. We made a decision at the weekend that we are going to go to be a bit earlier than normal and read for half an hour. It is actually quite calming. Better than watching TV before sleep.

So how else have getting those results made me feel? I guess initially I cried and felt despair. It brings homes the stark reality every time that I actually have a terminal disease. The fear and worry of getting ill and dying comes flooding back. I try not to feel that way but lets’ face it I am human… I think.

Pete as usual was brilliant and kind of without making me feel bad, said ‘I told you so….’ well almost but not in so many words. And I have to admit I guess I was prepared for the worst in a way.

When you get news like that you can’t help but play over the last few months and wish if only I was better. Better at being ‘good’ with my diet and so on. But the fact that the tumours appear larger could be great news for me. It could mean that the tumours are being inundated with GD cells and like before they are going to killed and reduce in size. This time though I expect them to better, I expect the tumours to be gone completely.

So off I trot on my usual path but now with a steely determination that this is finally going to be it.

I won’t rest on my laurels though. I am already contacting doctors in Japan, Germany and America about possible directions to go down and ways of finding out what will help me. As well as this I am booking appointments with doctors here in the UK for consultations on things like mistletoe injections, high dose vitamin c treatment and of course I am booking to have hyperbaric oxygen treatment as soon as possible. So, that on top of what I am already doing will hopefully kick this disease in the butt.

I guess why I was so upset yesterday is that I honestly believe in my head that I am going to be free of canSer. And that is the only thing to think; to have a good life and to really love life there is no other option. But the cruel reality scares me and I hate thinking of what is a very likely outcome for most people in my position.

Thankfully life propels forward and I don’t get too much time to dwell on it. It’s not possible with a Bear snuffling down my neck looking at me with those big hazel eyes. Bless him. What would I do without him?

Three days of fun to take my mind off the wait for the results…

I had a lovely few days to end last week. My mum visited and we went to see a musical, Cabaret, in Oxford. During the day we had our hair cut and did some shopping then had a lovely meal before watching 2 hours 20 minutes of pure brilliance. I think it was the first show I have watched and haven’t got bored half way through! I’d highly recommend it.

The fun didn’t stop there. Friday, my mum, my good friend and I drove to Southampton to a charity event for Action Medical Research which was hosted by Davina McCall. As everyone knows I love Davina. She is so vibrant and bubbly. Luckily we all got to meet her and had photos taken. She was so lovely. I wanted to have a photo with her on my own so went back for a cheeky second image. She remembered me from all the other hundreds of people and asked if I was with my mum. She said Mum looked amazing in what she was wearing. I didn’t get to talk much to Davina and so wanted to talk to her about her exercise DVD’s and this blog. Still she was so inundated with other women it couldn’t be helped really.

The event went brilliantly and we have decided we would like to take part again next year. It is nice to think about things other than canSer.

As if that wasn’t enough there was more fun to come! Saturday Pete and I took our four good friends to Twickenham for the international rugby match against Argentina. The day was a bit sodden but it stopped raining in time for the match to start. Apart from being a bit chilly it was an awesome day. More so because we won! Yeha!

It was a whirlwind and almost like a holiday. It felt odd having so many days off but probably quite good to keep me occupied what with waiting for scan results.

I feel quite calm about it all. I have no idea at all as to how it is going… Pete says that looking back on past scans when we starting dendritic cell therapy the tumours appeared to grow quite quickly but we believed they may have been enlarged from good cells trying to kill the canSer. In the back of mind I wonder if I have done enough. I have been slack with diet and alcohol what with so many trips away and generally having a nice time. But I do think that I may need to have a good time without those things. I know it’s possible and I know I can do it. I just wish I knew what makes canSer change and grow.

I have looked into so many alternatives recently such as the fermented soy and the cannabinoids but I am not overly interested in them. I really want to believe that the DC therapy is the right thing for me. Whatever the outcome I still feel well. I have to hang onto that. .. We will find out soon….

Good news re gamma knife and now the next step…

I waited patiently Tuesday with no reply from Dr Oliveros regarding the result of the MDT in London. That was a first for me! By Wednesday I was getting a little worried but for once didn’t feel the need to hound the department.

My patience paid off as I got the call I was waiting for. Dr Oliveros said that Dr Plummer at St Bart’s had agreed to give me the gamma knife treatment under the NHS! Result!

She said that my notes were being sent over to him and I should hear from him within two weeks… Two weeks? Ok not to panic. I kinda thought I would be hearing sooner than that. She said if I hadn’t heard by then to contact her and she will chase up.

 

We discussed  the steroids I am taking and she said I could reduce right down after five days.. Good. I feel very bizarre on them. Or maybe it’s the concoction of codeine, paracetemol and steroids. The cough is my main annoyance at the moment.

She asked how my appointment went with Prof Harris and she could see that I had consented to chemo.

She seems like a really nice doctor.

What she doesn’t know is that in the meantime another canSer friend has emailed me and told me about nano knife. A private treatment available here in the UK. My friend had given me the contact details and I didn’t hesitate to call. The secretary adviced me to get a copy of my report and send to Professor Leen at the Princess Grace hospital so she could show him before he goes on holiday.

Last night I had a Skype chat with some friends from New Zealand who now live in Frankfurt. They gave me invaluable advice on treatments such as TACE as well as advising me on IPT with a Dr Seibenhuner. It seems quite intense but if I can coordinate everything it could be a really great way to ‘go hard’ combining all treatments including DC therapy with Dr Nesselhut. I feel very lucky but now have to try to coordinate as much as possible in the diary.They advised me that combining such things as radiation with other treatments releases antigens and can work synergistically.

Dr Nesselhut mentioned having PDT- photodynamic therapy and mentioned contacting Julian Kenyon here in the UK. I have done that today. It’s all worth investigating.

So now it’s back to waiting but also deciding our next step. I won’t rule out chemo as I am better off having something that I know could mop up the cells. I just want to consider the side effects such as numbness in my hands.

 

So so that the update for now….

I didn’t win the lottery…. No surprise there then!

I didn’t win the lottery….No surprise there then. My luck hasn’t changed. Or has it?

It has been a weekend of tears, and love and support and so many emotions I don’t no where to begin. Pete and I decided that we would have a weekend of not getting out of bed. That lasted all of about 2 minutes. As usual we couldn’t help ourselves especially as the weather ended up being really lovely and I always feel that we should at least get out in the day light whilst the weather permits. We did have plenty of time to relax and although sleep was a bit a hit and miss we both felt relaxed. I had one good night one bad but I was pleased that I got any. I have been walking around in a blur. Now this could be down to the fact I am on a cocktail of steroids and also codeine, in the hope that my headaches will pass as well as the cough. Interestingly the cough is annoying me more.

This morning Pete and I went to the hospital this time to collect my CT scan results. As Pete called it, Part Deux.

I don’t know how I thought it would go but I didn’t have any feelings either way about it. I think that I thought things couldn’t really get any worse. And they haven’t really.

The good news is there are no new ones in my bones or abdomen and that the ones that are in my lymph nodes and lungs are actually a mixed bag.

The ones that have been blasted with radiofrequency have actually got smaller and that seems to be looking good.

The ones in my left lung have stayed the same.

Then there are new ones appearing albeit very small in my lung. There is also pericardial effusion around my heart.

The right hilar lymph node is necrotic but they cannot tell if that is because it is growing quickly. In fact all of the ones in my lymph nodes are a bit bigger.

Prof Harris has suggested that I get the gamma knife treatment all sorted and then that should make that better. There is of course no way of knowing if that means they won’t come back but he suspects we can keep on top of it. He does think we should opt for a systemic treatment like chemo but he said is up to me. He suggested getting started on something like carboplatin and gemcetibine and we thought starting the consent forms was the best way to go especially as it will take about three weeks to organise and by then my brain treatment should be sorted.

 

In the meantime Pete and I already have a plan hatched to go to Frankfurt for TACE by Prof Vogl. Since getting home I have had a stream of emails from my Europeans friends and they have been advising me that timing it with treatments to Dr Nesselhut would be highly synergistic as well combining it with insulin potentiated therapy. I think this could be a really good route to take. We just need to organise that now too.

As expected I am still waiting for results from the MDT that occurred today at St Barts. We told Prof Harris that Dr Oliveros had said we can only have it done if there are three tumours of less. He couldn’t believe it. Prof Harris has changed and I believe it is because he has seen so many changes in the cancer world. He is so much more open and friendly now too.

As much as I don’t relish going on chemo it is definitely something I would do but I will lean for TACE first. I don’t want to spend any more money but I do want to try other things and I do want to give it my all.

I am bit disappointed that I haven’t yet had a call but I trust that Dr Oliveros will call when the time is right.

I suggested to Prof Harris about a trial that is happening at St Bart’s that my friend has told me about. It is using immunotherapy and has been raved about apparently. He thinks I won’t be able to get on it because I have already had immunotherapy but he said it is worth a try.

I think I will continue with the immunotherapy at the London Clinic. I still think that things are going well in that department. The thing is if these brain tumours hadn’t appeared it would still be going in the right direction… sort of…

I have been cancelling clients today and been making a plan for taking more time for myself… The thing is until I get an answer from Dr Oliveros I still feel aloof.

I felt really loved today at hospital. Pete was surprised at what staff in the pharmacy and the nurses who work with Prof Harris were all like with me. The thing is I have been going there a long time. They all bent backwards for me and made my life as easy as possible. I am feeling really loved.