Passion…..

 Tempers flare and frustration sets in when we should be able to get onto trials and “experimental” or non-accepted drugs in the UK that we are otherwise “allowed” to pay for and receive. That’s what’s happened to Pete right now. Probably at the end of his tether having to spend over a week with me and not being able to give his business his undivided attention too. Anyone that knows him, knows how ‘passionate’ he can get. I don’t blame him but it can be upsetting to see him feeling like that.

We left home over a week ago for treatment but also to spend time together over the Easter break. To have some special time and to make treatment trips more fun and memorable. That’s what he does. He tries so hard to make things good, fun, loving and most of all special. He spends all his time thinking of others, putting their needs first. The thing is, things never really go to plan.

We travelled through France to Switzerland and then arrived in Austria. Pete had worked out that we could slip in a ski break between appointments, he had meticulously planned everything. This time of year you hope/expect to have sunshine and those gorgeous blue sky days skiing. Our thoughts were, ‘Will there be any snow left?’ That would be sad if there wasn’t. Hahahahahaha. How funny that thought is now. We arrived and a storm set in. The resort had over four metres of snow in a few days! It was so bad some days we actually couldn’t ski and when the sun finally did come out they decided not to let us up the mountain for fear of avalanches!

How frustrating and disappointing life can be at times, more so for someone like my Pete. He just wants everything to be perfect. He just wants people, and especially me to be happy. (I am by the way, no matter what he does.)We then had a 7 hour trip (stopover in Munich) and are now in Germany and I am having treatment. The weather is better now, but it snowed all the way here. We hope that it stays dry for our long drive home to ‘The Shire’ tomorrow afternoon (11 hours). I don’t hold out much hope though….

Pete’s frustration this morning is due to the screwed up medical society. Where to start. The waste of money on treatments that are proven not to work, the administrational shambles, the obvious control of the Pharma, it goes on and on and people are dying. We are not talking about gastric bands and boob adjustments. Pete was in tears over an Alzheimer sufferer this morning, diabetes, heart disease and of course cancer – these are challenges that we are facing at the speed of a striking sea slug and still people are dying.

We have been talking over new developments such as targeted DC therapy, Nivolumab and Ipilimumab and its so frustrating when researching to find they have been trialling these drugs and treatments for nearly four years. The sticking point of them is the cost NOT the efficacy.

Isn’t is sick that we live in a world where they hold cancer patients (and other terminally ill) to ransom? I’m being told once again that I may not be able to get onto a trial because my recent scans show that I have had improvement on the treatments that I have had. So because I paid for TACE, saving the NHS around £100,000.00 in treatment costs and it has been working, they could decline me from getting on their trial. BUT I CAN HAVE IT IF I PAY FOR IT! This to me makes no sense.

I have been having treatment abroad, paying for it, and because that shows it is working, they would turn me down on an NHS trial in the UK. It’s so short sighted. Can’t they see if the trial works on me, with the other treatments I have been paying for, then I am not only helping myself but helping the Company (In this case Bristol Squibb Meyers) and other patients get a treatment that could be the cure, the answer, or at the very least the treatment that will be a winner for most?!

No point on dwelling on it… but so corrupt, mismanaged and such hindrance in progressing for a cure. This just reminds me how hard all of this is on our loved ones, our nearest and dearest. I’m so lucky to have someone who cares so much, but no one really realises how hard it is for them.

Pete has devoted his life to me, his family and friends and his business, with all the responsibility that brings. When he is there, he works such long hours and never mentions his home life or troubles, he says his job is to be “positive”. That’s what people see.

What they don’t see are the sleepless nights, the worry, the guilt at not being there whilst taking me, his sick wife, for treatment once again. Social media is amazing but it does only show the good times. People have even said to Pete “have a nice holiday” and think we are living it up abroad. He just smiles and nods and continues to post himself smiling in ‘happy times’ photos.

But money doesn’t grow on trees. Pete has to be an innovator, motivator and different in outlook, always thinking of ways to grow and differentiate the business, but most of all ensuring that it doesn’t fail. He has many staff to care for and they have their lives. It’s a constant juggling act.

But we still try to maintain a normal life. As normal as it can be. We both long to be at home. To have routine. To be part of things we have built up for years. We don’t want things to slip through our fingers after all the hard work we have put into it. It’s hard keeping abreast of everything and heartbreaking when things don’t go to plan.
If I could say one thing to my younger self or close friends and of course you as you are reading this, it would be – Never take your lives for granted.

Being at home can be monotonous but there is nothing like home when you are forced to be away so much. Right now I’m sat waiting for treatment. I have no idea if it’s working, but I do know it takes a lot of time, money and effort for me to even be here. This is something I’m eternally grateful for and I will never take for granted either.
When you are bored, tired and wish your life was more exciting… think of all the survivors out there and ‘put the shoe on the other foot’. I only hope everyone has at least one ‘Pete’ (my Bear) in their life. It would make your life better in every way…. My kuschelige Eheman.

P.S. Pete and I have laughed so much on this trip. It’s not all doom and gloom as I always say…

Light and Love

XXX

Booked but no confirmation as yet….

I received an email from a lady working at the gamma knife centre at St Barts yesterday, just past 5pm, saying that Dr Plowman wanted me to book in for another outpatients appointment and then he would let her know the next step. She asked that I call his secretary the following day to book it in.

I replied immediately asking why Dr Plowman would want another outpatients appointment seeing as I had just had one last week? Of course I didn’t get a reply. It must have been home time.

This put me in somewhat of a bad mood for most of last night. I tried not to let it bother me but I couldn’t help worrying. What did Dr Plowman want to see me for? He had said that I would be getting an appointment for the procedure. I could only think the worst and different scenarios were going through my head like what I would say on the phone to the secretary and how I would need to argue it out. I tried calling there and then but of course being after 5pm there wasn’t any answer.

Luckily, having a bath then getting an early night meant I slept really well. It’s not hard when you have a big Bear snuffling beside you. The best sleep ever.

I got up and as soon as 9am came I called. No answer. Then I had to go to the doctors. I have had enough of the skin issue on my chin and around my nose. I have tried everything from Sudafed, to tea tree, to natural products and more. Nothing has been working and it has slowly got worse. I had my suspicions of what it could be and it was confirmed by the doctor. I have a form of dermatitis that affects the areas on the face like mine. I have been prescribed some cream which has already started to work. Bonus!

I got back and immediately got on the phone again and this time had an answer. The secretary was lovely and very helpful. I explained my situation and the fact I live in Oxford and so on. She went and spoke to the doctor who said let’s bypass the outpatient appointment and book me for the gamma knife procedure! Argh! Result. I have been pencilled in for late April and will get an email and letter to confirm.

I have been told to call again tomorrow if I don’t receive anything by ten am tomorrow. So far nothing….Seriously, I know I am a lady of leisure right now but chasing doctors isn’t up there on my list. However, this is really nothing to complain about in the scheme of things is it?

My energy is feeling all floopy today. I don’t feel driven like I did last week. It’s weird how our moods change. I’m aching quite a bit since I started a new exercise regime and I think that’s making me more tired than normal.
It’s cold again here and we awoke to a foggy garden. This afternoon has been bright and sunshiny.
I love it that I can get out in the back garden and have a cup of tea in the warm rays. The summer is going to be great and the garden is going to get full use! I am not wishing my life away but it’s right up there on the things I am looking forward to!

Until tomorrow when I hope I have confirmation…..

This is Bear…..

Hi this is Bear,

I started writing this as an email to Tom, whose loved one is a survivor, but as Claire is feeling a bit under the weather I thought I would step in and make it a blog for all the Bears. Husbands, lovers, brothers, sisters, children and friends who are helping a brave lady through this terrible time in their lives.

And there it is. The first thing to point out,  we always say “terrible time”, but the most important thing is to make it the greatest time, none of us know how long we may be given on the earth and we are all, after all “terminal”. So Claire and I have tried in everything, to make the demands of canSer fun and exciting but I feel that the best advice I could give, is to look at life within simple elements.

The most important thing is to have a plan. We created the ten point plan on day 3 of diagnosis and so far although the components have changed the plan is still the same (https://www.triplenegative.co.uk/tenpointplan.aspx ). Having a plan gives you strength and helps to adjust as better treatments evolve.

Then you have to LIVE. It can be easy for canSer to consume. For every thought and action to be related to the disease. Whilst you are fighting, you have life and the opportunity to do what you can to make sure that you drain every drop from that life. Leave no regrets and live with canSer as a perceived issue don’t live a life of canSer.

Live in gratitude for all things. I know that platitudes are painful, but we both truly believe that life is not measured by the breaths you take but the moments that take your breath away. We have been so blessed, in love and friendship, in the opportunities we have had and the life we have been able to live. Things that for many who live until 90 will never be achievable. Every breath of wind on a sunny day, the kindness we see around us, all of these things help us to face every day with love and light.

And finally – don’t compare. Never look at statistics they mean nothing. If 1 person out of 100 survives then that is 100% survival for that person. Be that person. canSer is the disease, which we try and classify, but we should be looking at every patient and as far as I know everyone is different -so never compare.

I hope that in some small way this helps. I wish you all love and never forget that we are million strong and that the medical world is changing quickly. In as little as two years we could have a cure – let’s all make sure we are here to see that day.

Bear

Flying visit to Duderstadt….

Side effects have really been getting me down the last week. At least that’s what I hope they are. A constant headache and that bloody nagging cough.

I have completed the il2 round 6 and the new imm101 jab has been gradually getting bigger and had now decided to get oozy.

The weekend was lovely with friends visiting but prior to their arrival I just felt rubbish. I whined and moaned and despite wanting to do some gardening jobs I got myself on the sofa under the Bears orders.

The problem with ailments is never knowing for real what is causing them. As with all canSer patients their minds will run away with them. I have now decided to be logical and really think back as to when all these annoying side effects started. I think they could be an accumulation of things over the last few months. I also thought that the nausea I had been experiencing could be down to them too. I think I feel a bit better with the knowledge that although I feel sore throated and tired that it could all just a sign of things working.

We got up at 4am today to get to the airport for our morning flight to Hannover. It’s been about ten weeks since we saw Dr Nesselhut last and I am ready for this round. I do know that tonight could be another night of fevers. My body has been going through it with all these infections and immune stimulating things going on.

So today I have had zometa, il2, hyperthermia, Newcastle disease virus and air. A well as this I asked for my bloods to be taken for my next visit. I feel fine right now, if a little tired but I am ready for tomorrow’s stint too.

Pete is here with me, as usual and I am so pleased he is. The roads were horrific getting down here with traffic and roadworks. I aim to have an early snuffly night in the ultra comfortable beds at the Zum Lowen plus we have been given a room with a mahoosive bath! Whoop… A big soak in the tub! Falala!

We finish tomorrow at about lunchtime but our flight back isn’t til 9pm…..

Until Wednesday…. Xx

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!

A weekend donated by The Willow Foundation.. heavenly…

 Bear and I have had yet another amazing time away together. This time it was the two of us in rural Cornwall. We stayed at Forest location in a wooden cabin just for the two of us. It feels like we are away a lot at the moment but we are simply trying to get the best out of life and at a normally dreary time of year. I simply can’t believe we only got back from Antigua about a week or so ago! It’s all a blur!

The reason this weekend was so good and memorable was that it was donated to me and Pete by The Willow Foundation. I was informed of this amazing charity by one of the ladies that did the Prima magazine shoot with me in the summer. She told me that I could get a ‘special day’ because I was between the age of 16 and 40 and have a life threatening illness. I was surprised that I could get something nice so I applied and the ladies at the foundation were brilliant. I had to verify my illness so the foundation contacted Prof Harris and it went from there.

My special day was chosen by me and I could have had pretty much anything I wanted to a degree. But I really felt that I wanted something low key and earthy. I booked it for January as I felt there wouldn’t be much on but how wrong I was! But it was definitely the right time to go.

Cornwall is so beautiful but at this time of year when it is crisp with blue skies yet cold… Pete and I just loved it. We thought it was a good opportunity to get started with my exercise and walking.

I have been feeling better and gradually doing away with the sickness and getting myself into taking supps and meds again. Since seeing the consultant last week who pretty much said it is probably my brain causing the nausea I thought, Heck it is! I have felt and allowed myself to feel nausea. I believed it was me being neurotic.
Since then I have been eating… a lot and have now got a formula that works for me to get most of my usual supps and meds inside me. I’m not doing all of them but I am doing what I think are the important ones. I will increase as I go along. I have been having the GcMAF yoghurt with blueberries and having a green juice, even though the last few days it has been a bought one so has some fruit in it. But the way I see it is its fresh, it should be building my iron levels and making me stronger.

I am unfit and it was proven at the weekend. We did some serious amounts of walking and where we had so much rain the coastal paths were very difficult to contend with. Luckily we were prepared with our clothes as we got covered in mud! it was a good start though and I don’t think it will take too long to build my fitness back again.
It was really refreshing not having communications either. There was little 3G and no Wi-Fi until we got to pubs nearby! I didn’t miss it at all.

The cabin was just lovely, as it had its own hot tub and stove fire. When we returned each day we jumped in the hot tub usually with very little on but a woolly hat! It was so relaxing and we took all our own food so ate what we wanted and chilled into the evening.

We discovered the local areas and did more walking and to be honest the long weekend flew by. Pete and I just felt so much love and happiness. It was just what we needed. I would highly recommend Forest Holidays. http://www.forestholidays.co.uk

So we are back and I am having a great day! I reluctantly left my wonderful bed, which is even more wonderful since I changed our duvet to a 13.5 tog! Oh my… it is now on par with the Zum Lowen’s beds! I decided it was time to have a good exercise and popped on Davina McCall’s new 7 minute DVD. 21 minutes later I felt good and pleased with myself. The day hasn’t stopped being productive since then… Apart from other chores I have started ticking off some really annoying chores such as sorting out cupboards…I hope I feel like this tomorrow as I have so many more jobs that could be getting done!

There has been a lot of research coming recently about new developments with TNBC. It is so frustrating as it all seems so far away for us humans to be using. Pete is still soldiering on getting more info and hope for us. I hope that my next scan shows things are still going in the right direction.

I am nailing the bones now I am taking Denosumab. I hopefully have nailed the brain mets by having radiotherapy and continuing to have supps etc. I am nailing the lungs and lymph with continued treatment in Germany; another one booked next week and then I will start Eribulin. Best to keep it on its toes and hopefully the stronger I get the easier it will be to manage.

I know the importance of exercise and now the days are getting longer I think this will get easier. It’s certainly easier to wake up with a little bit of daylight coming through the shutters. Poor Ol’ Pete though doesn’t have that luxury.. 5am starts are hard… And bless him he brings me hot lemon and an apple every morning. It’s paying off though as I have put on four pounds this week.

Thoughts are going to my 40th which is later this year. I don’t want to over think it and although initially I said I wanted to celebrate on a yacht in the South of France, me, being a woman, has changed her mind! I want fun but I don’t necessarily want to spend a fortune and put people under so much pressure. So any thoughts for a memorable birthday please message me on fb! Ha ha!

Here are some lovely photos of our weekend away supplied by The Willow Foundation. I can’t thank them enough and urge anyone within the criteria to contact them.

XX

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This is Bear…..

Hi this is Bear, 
 
I started writing this as an email to Tom, whose loved one is a survivor, but as Claire is feeling a bit under the weather I thought I would step in and make it a blog for all the Bears. Husbands, lovers, brothers, sisters, children and friends who are helping a brave lady through this terrible time in their lives. 
 
And there it is. The first thing to point out,  we always say “terrible time”, but the most important thing is to make it the greatest time, none of us know how long we may be given on the earth and we are all, after all “terminal”. So Claire and I have tried in everything, to make the demands of canSer fun and exciting but I feel that the best advice I could give, is to look at life within simple elements. 
 
The most important thing is to have a plan. We created the ten point plan on day 3 of diagnosis and so far although the components have changed the plan is still the same (http://www.triplenegative.co.uk/tenpointplan.aspx ). Having a plan gives you strength and helps to adjust as better treatments evolve. 
 
Then you have to LIVE. It can be easy for canSer to consume. For every thought and action to be related to the disease. Whilst you are fighting, you have life and the opportunity to do what you can to make sure that you drain every drop from that life. Leave no regrets and live with canSer as a perceived issue don’t live a life of canSer. 
 
Live in gratitude for all things. I know that platitudes are painful, but we both truly believe that life is not measured by the breaths you take but the moments that take your breath away. We have been so blessed, in love and friendship, in the opportunities we have had and the life we have been able to live. Things that for many who live until 90 will never be achievable. Every breath of wind on a sunny day, the kindness we see around us, all of these things help us to face every day with love and light. 
 
And finally – don’t compare. Never look at statistics they mean nothing. If 1 person out of 100 survives then that is 100% survival for that person. Be that person. canSer is the disease, which we try and classify, but we should be looking at every patient and as far as I know everyone is different -so never compare. 
 
I hope that in some small way this helps. I wish you all love and never forget that we are million strong and that the medical world is changing quickly. In as little as two years we could have a cure – let’s all make sure we are here to see that day. 
 
Bear 

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!

 

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