The Bear is back…

Another five days have passed. Time flies when you are having fun! The week flew by actually and I have had more friends arrive and my step son leave. And at last the Bear is back! It’s been an interesting week. I am not the most confident person on the roads abroad and this last week I have been forced to drive, if I actually wanted to leave the villa. I would have been fine driving my little car that is parked outside my house in England but I have been driving Petes car. Parking has been an experience. I was happy for Pete to return yesterday to take over the driving role!

Our friends from Ireland are with us now for a few days. It’s so funny seeing them here. Obviously we don’t get to see them much but taking every opportunity to catch up is brilliant. We are so relaxed, chatting, laughing and loving. Their daughter Marsha is gorgeous and brings us so much happiness. I love her passion for shopping…. A true girly girl!

In the last few days I have abandoned having green juice. I am taking my meds and supps with lemon, bicarbonate of soda and olive oil water. This is much better and I am no longer nauseas. It is also funny how my diet really has changed. I am indulging in everything and anything I want. I am not being lazy. I am not feeling guilty. I am simply going with the flow. I do think it has having a slight adverse effect on my body such as diarrhoea and headaches but I love checking out the menu each evening and thinking, pasta… Yes why not. My friend Patricia said maybe my body is healing and letting it have what it craves is a good thing. I have spent so much time in the past few years doing the ‘right’ thing. I don’t think it will hurt doing what I feel for a while.

I am now going into my, wait for it, third week here in the South of France! I know! Three weeks! I may not be sleeping because of the heat, I may have mosquito bites itching me and I may be putting on some weight… But I feel so free. I have never stayed somewhere like this. I sometimes do my rituals such as enema, meditation and yoga and sometimes I don’t. Isn’t that great? Doing what ever I feel like doing.

What I do religiously is sit in the sun… I love the sun. In fact I have changed colour somewhat… I do love a tan. So I guess my vitamin d levels are quite high. It’s ok though.. I am preparing for the dark winter ahead.

I do have the odd thought about home. I am still planning treatment for my return. I text Carol the nurse from St George’s as I still haven’t had a reply about the next round of il2 injections. Carol, bless her, replied from her last day on holiday and said that if I didn’t hear from her on Thursday to contact her. I’ve text her again. I still have time to organise.

I still have the cough, although annoying, Pete says he doesn’t think it is getting any worse.

When Pete went home he picked up the recent copy of Prima magazine. Why? Because I am in it! I’ve attached a few pictures with the text. It’s so funny seeing myself in a magazine.. It was also very nice the other day to be mentioned in an interview with one of the lady’s from Nicola Jane mastectomy lingerie. My fifteen minutes of fame! Haha!

magazine
So what is happening today? Soulful Sunday.. Fresh foods, plenty of sunning myself and plenty of time to be grateful. The main theme of the day… Love.

Tunes are playing by the pool… I am  having lots of cuddles with my Bear (well I need to catch up on the last weeks worth that I missed!) and then tonight we are off to St Tropez…. Darhlink!

Hope you are all feeling the love today.. Happy Sunday!
Xx

What to report from my floating lilo?

It feel like it has been ages since I last blogged. I’m not ignoring everyone I am just simply having too much fun living and relaxing and being away from home and out of routine. I’m into my second week away and it already feels like I have been here an eternity. Friends have left and more friends and family have joined me.

Sadly Pete has gone home for five days. He has to work. I am so lucky to be able to be on holiday but it feels so weird that Pete is not here.

What is there to report?

I have been battling with my meds and supplements still. But think I am conquering my nausea by eating something with them. I have had a few days break from green juice.

Sleep is still really hard. The other night it was very very windy and it felt and sounded like the house was going to fall down. The heat is crazy here but I am soooo not complaining. It is now September and the sun is still shining and the heat is immense.

I wish I could sleep better but at least I do not have to anything much during the day. To be honest I could sleep all day if I wanted!

I am not writing this to make everyone jealous. This is a once in a life time for me. I have never stayed in one place for this long and it feels great. I will want to go home though. Just not yet.

I would like to feel healthier. I don’t like having stomach aches, head aches, nausea and more. A lot of how I feel is down to anxiety too I think. What have I got to. BE anxious about? Nothing really but old habits die hard.

Whilst here I am still doing my weekly module of the health coaching course. Funnily enough it has been focussing on the importance of sleep. Oh sleep… How I miss you. I miss cuddles with my Bear and I am counting down the days till he returns.

I have been getting really brave driving here and yesterday had the wing mirror replaced. For a short moment there it looked like it wasn’t going to happen but thankfully the lovely French mechanic sorted it for me. Phew. So now the car is as good as new but our credit card balance has been hit hard. Boo.

Today I am going to try and eat well, stay well hydrated and rest. I have been doing lengths of our little pool here. Although not as many as my friend. She did 140 lengths this morning!

Last night I had copies of letters emailed to me by Pete. They were letters from my oncologists sending update letters to my GP. It was quite nice to read that they think things could be going in the right direction but that my next scan in October will be one to confirm that.

Prof Harris also wrote to say that he couldn’t give me mebendazole but gives his consent for me to proceed and have that treatment if I can get it. He also said he doesn’t believe a PET scan will be any better than a CT scan but if that is what Professor Dalgliesh would like then he will happily organise that for me.

It seems that the oncologists are all very agreeable at the moment! I like it!

Lying here getting browner by the day ( I do love a tan) has given me time to think about the forthcoming months. There is a lot to look forward to. Social events, trips away, treatments and more. I am even going to a spa at a London hotel with my old school friend when I get back. Not that I need pampering.. But any excuse for a good old catch up and gossip.

I have emailed Professor Vogl informing him of my current status and asked his advice. He is also so quick to reply and his emails do make me laugh. They are so short but to the point. He is very keen to get me to go there and have a scan and then if I want and need have TACE immediately.

I am not sure about this as I am in Duderstadt the week after I return from France. I may try to tie in after my scan around October time if we can make time for it. I’m obviously hoping I don’t need to go there but I have to say I am quite intrigued about meeting the man himself.

So my iPad just overheated whilst I typed this outside. I have now taken my iPad out of the fridge to finish off!

I feel so grateful and so very lucky to have this life in every way. I am so very grateful that despite my annoying niggles of nausea, diarrhoea etc, that I actually do not have any canSer symptoms. I look up to the sky from the lilo I am floating on at the deep blue sky and think to myself, don’t ever let this end. This feeling of calm, happiness and serenity. Give me back my Bear and then I will be complete.

Xx

A tense journey but we can finally relax….

It’s been a busy few days for Bear and I. Friday we took our friends at 5am and drove to the Eurotunnel. We had a little euro tour planned again but not for treatment this time. For the next 3 weeks I am on vacation. I know 3 weeks right?! How lucky am I?

As I couldn’t fly due to having had ablation less than two months ago we decided to drive to the south of France stopping en route. France is so beautiful and the changes of scenery are breathtaking.
Sadly our journey down here was more than we bargained for.

I stupidly forgot our passports and left them in the first hotel we stayed in. We stopped in a place called Beaune. It was so traditional and beautiful. We got up nice and early to get to our final destination in plenty of time to be able to settle in then I got a call to say I had left them behind! Doh! That added on a couple of hours to our five hour journey. Oops…. Then the whole of France must have decided to descend onto the motorway we were on. The long and short of it was that throughout the journey the estimated rival time extended to 11 hours and to top it off a large holiday caravan type vehicle decided to drive at us. Yes at us, taking our whole wing mirror off! It made such a loud noise we all thought something must have gone through our windscreen or taken the side of the car off!

Driving on the opposite side of the road is hard enough in a foreign country but driving without the wing mirror you so depend on is well, driving with a death wish! But we had no other choice. We have found a garage and in our broken French spoke to the mechanic who has sourced the mirror but we have to wait five days before it can be fitted. And the cost, well, it’s sickening!

We have tried to not get too upset by this and have ploughed on at having fun.

The weather is changeable but lovely and I have been doing what I love the most-sunbathing.

It has been quite a topsy turvy time for my bear and I. Having people with us means we don’t cuddle quite as much and the heat at night has meant we sleep at a distance. We miss each other and tempers have been flaring. I have been told that I am more agressive than normal and even though I don’t think I have I can only put it down to feeling under par.

I have continued to struggle with drinking green juice and taking my meds and supplements without the want to vomit. I have had stomach aches and upset tummies. Today though I feel much better. Maybe it’s because I am calmer and happier or maybe I have just got over myself and letting my mind dominate.

Where we are staying is very relaxing and yesterday I got to meditate and do a spot of yoga, I hope to get into a routine whilst here. Pete has to return to work so I will be here with my mum and some friends. I have already been losing sleep about driving here! But I am sure I will get myself sorted out eventually.

Yesterday we spent some time lazing by the pool and I got to read some really interesting documents that kind followers have been sending me.

I am hearing and reading a lot about mebendazole still.  I think I will need to book to go to the clinic in London that uses it.

Mebendazole disrupts the glycolic pathway while at the same time it can cause the cell membranes of mitochondria to rupture and cytochrome C, which leads to apoptosis.

I read though that not only that but other things like NSAIDS such as Ibuprofen (not sure it is the type you can buy in the chemist) are very helpful for treating cancer.

NSAID’s formulated in lipids which would be preferentially taken up by cancer cells, due to elevated levels of LDL receptors on cancer cells. Such a form of ibuprofen exists. The dose would be 400mg three times a day.

Ibuprofen binds COX1 and 2 and PPAR Gamma receptors in cells. Activation of these receptors in cancers cells particularly invokes apoptosis of those cells.

In addition the benefit of ibuprofen would be to treat inflammation induced by cancer, the ascites that sometimes results and the attends pain.

This seems quite exciting because these things should be easily added to my protocol if they are effective and if they are useful are relatively cheap to take.

I am definitely going to pursue this when I get back and in the mean time book an appointment.

My cough has been pretty bad since I have been away but today, touch wood, it seems to be much better. I hope it is what Pete says, that it is only the lymph nodes effected by the dying tumours. I don’t feel ill other than that and the fact it comes and goes is a good thing. I am hoping by the end of this break I will be as good as new.

I have continued to take scorpion venom along with reishi and more. The boot of our car was full of everything I need to do on a daily basis.. Lucky we drove really.

So today I am going to rest by the pool, listen to some music and maybe take a stroll along the beach later. Then I think I will do the same the next day, then the next and well, you see a pattern forming here.

Au revoir!

Side effects again dominating….

Last night I had the second il2 injection of round five. I tell you, the side effects get worse. By 8pm I had full shivers and felt rubbish. I gobbled up paracetamol again but they didn’t have the same soothing effect. I went to bed in a pickle.

Thankfully though I did kind of sleep. I slept on my back all night so I know I didn’t properly sleep but at least I felt rested this morning.

The cat was very happy though. She snuck in before we shut our bedroom door and she slept on or right up close to me all night. At one point I heard her drinking from my glass of water on my bed side table! Lucky I didn’t need any then! It must have been a cold night, that’s all I can say, because the temperature I was kicking out must have been up there. I got out of bed this morning very red faced and felt urgh…

It took me hours to sort myself out this morning. I have also been struggling taking my supplements and medications. I am not sure if it is a mental block but I really am off green juice and supps combined. It’s so weird how things change. Only a few weeks ago I really felt that taking my supplements whilst drinking my juice was a great combination. I felt energised and at ease. Now I regurgitate every time I try to take them. Even my reishi powder and oil made me vomit. It’s so unlike me. Thinking about it now is making me get all watery in my mouth. That’s a bit of a pain as its time to have my evening round of meds and juice.

Today I have been organising for going away. I have been trying to get last bits of washing done and cleaning the house so it’s nice for our return. I have also been emailing doctors and organising appointments for when I get back.
I emailed Prof D regarding getting a prescription for mebendazole. He has referred me to another clinic that uses it and says they should be able to sort me out. I contacted them and they say they would be able to help. Yay! But I need to have a consultation and then a follow up appointment costing £400 and £200… Boo!

I feel quite excited about being away. I want to spend some time thinking about the next quarter of our year. I am nearly finished with the health coaching course and I have plans to get in order. I want to have some new goals and feel fired up and ready to go.

One of the lads that did the Colour Run with me at the weekend has made a video. This really cheered me up today… I hope you like it…

Side effects of il2.. where’s the paracetamol?

It was the first day of the injection yesterday. I collected my il2 injections as usual from St George’s. This time it was different. The lady that was giving them to me happened to ask a research nurse for some alcoholic wipes for me. The nurse objected to the lady giving me the injections as they had to be handed over by a qualified nurse. That led us to trekking across the hospital to the oncology ward to an unsuspecting nurse there that had no idea what to do. I asserted myself and said all you need to do is ensure I am that person stating on the package. Luckily I blagged it and get out of the sharpish. I am sure the research nurse meant well but come on… I have done it five times already!

I did the injection earlier than normal and started to feel the effects at about 8pm. I tanked up on paracetamol and then hoped I would sleep. I awoke about midnight and felt a bit iffy and waited a while before taking more paracetamol. I slept quite well and woke surrounded by fur; the cat and teddy bears that Pete had put in his place. It was lovely.

I dragged myself from bed and got on with my day as usual. I have a busy one today as we leave on Friday for a little road trip. We will be away a while on vacation in France. I am sort of looking forward to it but I find preparing everything a strain on my brain! And I am starting to worry about leaving the kitty behind.

I read up again on the side effects of il2 and why I feel like I do. It says that whilst taking it I could have lower blood cells than normal making me susceptible to infection. The ailments I feel such as aching, fever and generally crappy, are all perfectly normal. I also had a racing heart and on reading, notice that is also a side effect. I think like everything it is accumulating and the side effects come quicker and last longer. Prof D did say that I could reduce the dose myself but part of me thinks it must be working so stick with it.

What I would really like to do over the next few days is…nothing. I want to lie down and watch TV and then read some magazines. I know I will be able to do that soon but I don’t want to spend my holiday lying down the whole time. I like to be active and sight see.

I have been using the nebuliser today again with a combination of distilled water and bicarbonate of soda. It kind of tastes odd and sometimes takes my breath away but I want to keep going with it. In fact I am going to have another hit of it now to finish of today’s dose.

After Thursday I won’t be having any further injections for about a month, due to being away and timings. I feel a bit apprehensive but hope that some time away with family and friends will be enough medicine for me.

As we are driving I am taking everything that will benefit me such as my juicer, nebuliser, yoga mat and more. I hope it all fits in the car!

I can’t wait to spend time with my Bear… Happy thoughts. X

I asked the Universe for a gift…

The last few days have been glorious and as I sit here now I keep looking into the garden thinking just ten more minutes till there is no more sun left…

I have been trying to take things steady since Sunday and have laid off exercising properly. I have done some stretches and a little plank here or there with some squats thrown in for good measure.

I have been busily getting my house in order and preparing for trip… But this time it is a trip for fun not treatment. I’m a little bit excited. The Easter weekend is here and I am spending it with my man. My favourite person…

But even though things have been ticking along steadily there have been things nagging at me.

The pain in my side, I thought was healing. It is only by the time I go to bed that it really plays up. But yesterday I was in agony from about 6pm. It’s so debilitating and if this is a muscular injury, boy, I don’t want it again thank you very much! I don’t take pain relief usually as I would rather feel the pain and let it go naturally but last night I took 1000mg of paracetemol, 600mg of ibuprofen and 20mg of codeine. And even then the pain didn’t go fully. I did sleep though but awoke in pain again. Every deep breath and cough makes it hurt.

I noticed today though that the pain is directly under my mastectomy scar and it does feel tender to touch now, like it is muscle pain. But weird that it is right where the scar tissue is. Pete still thinks stress is a major factor. Its funny where we hold tension and he should know as his back goes almost every time we are due to go away.

But I guess that’s how the body manifests ‘stuff’. It’s trying to tell me something and I know what it is… patience! And that the Universe will guide me once it is good and ready…

Well I have been patient but I wasn’t going to wait for the Universe to present things to me so, in my impatience I decided that I would call Prof Dalgliesh. I had emailed loads and it seemed that I wasn’t getting heard. On calling I was met by Prof D’s secretary. She is very short with me on the phone and said, ‘Oh, you have been accepted’. What?! Yes, they have accepted you for the vaccination trial. Oh right, well thanks for informing me.

She proceeded to give me a few details of when it would start but I asked her to let me know as much as possible as I know nothing about it. She said I may be starting on the 1st may. She did try to get it on the 24th but they are too busy.  She said that even though it’s a trial and should be free because it is administered at eth London Clinic they would be charging me for every visit. She wasn’t sure of costs but would find out. She do you know anything about the trial? No! Oh, haven’t you had a patient brochure sent? Well who was going to send it to me? Anyway that has now arrived.

I asked about ablation. She said flatly that she doesn’t deal with that. Well who does? She said they should be contacting me. How? By email, letter, phone? And who would be contacting me? I again explained that I have no idea what’s going on and someone needs to help.

Once I received the patient brochure I emailed her to thank her for her time and explained that my brain was going to pop with anxiety and stress if someone didn’t help me. I got a reply saying she would email the consultant. I then got a further email to say that the consultant is away until the 22nd April… FFS. Well at least I know.

So good news I think! Well at least we are getting there. i still feel uneasy and lots of loose ends but surely this is good right?

Apparently the vaccinations will be every two weeks, then if I tolerate that well every month and so on. I will post the information regarding the vaccine once I have digested the information.

It’s funny because I am reading Pam Grouts book, E Squared and in it the first exercise is to ask the Universe for a gift within 48 hours. This is to prove that the Field of Potentiality, Source, God or whatever, exists.  I asked yesterday at 12.55pm. OK, so I had to chase the gift but I got it didn’t I? So just over 24hours isn’t bad at all eh?

One more thing… I actually have a bit of a sun tan…. I love the sun!