I’m damned if I do, damned if I don’t…..

It’s been a long week and as usual we are glad to be home especially as it’s only a week until Christmas!
Pete thinks it has been the hardest trip we had in Germany primarily because I was unwell for most of it. Nothing specific really other than suffering diarrhoea, nausea some days, totally unexplained. I think maybe due to anticipation and anxiety of what was lying ahead of me. I also had trouble taking my tablets, again due to my head stopping me. My appetite suffered some days and then I started treatment at Dr Seibunhuners which entailed infusions of artemesinin, DMSO, B17, and incorporating insulin using the insulin potentiated therapy.

Firstly my veins in my left arm are suffering and I feel every prick of the needle so much so at the moment. The DMSO stinks and I immediately wanted to throw up. Not very nice for anyone there. I calmed myself down and got on with it but to be honest that stuff does my head. It’s supposed to enhance the intake of treatment but boy, I really hate it. Pete isn’t a fan either as I smell of rotten cabbages for days. It’s like when you eat garlic it lingers for days and washing, spraying perfume doesn’t disguise it. I oozed cabbages.. Brilliant.

Whilst having the infusions and IPT I also had oncothermia like that at Dr Nesselhuts. It took much longer this particular day than it did the first time I visited.  I don’t like change and I was getting frustrated with the lack of consistency. Every clinic and hospital does things differently. It takes a lot of getting used to.

Prior to this we had spent a lovely weekend in Cologne, and although we have been to the Christmas markets there before, we believe they are the best in Germany. So classy, have so much to offer and a real delight. The food is immense and the atmosphere is second to none. I would highly recommend going.

Yesterday we got up early for the first appointment available with Professor Vogl for TACE. Guessing I was first on the list I assumed I would be finished earlier than normal and we could be driving back to the Eurotunnel to catch a late train to get home. Although we love it there Pete really needs to get back for the business and to earn money to pay for this treatment.

Because we wanted it to happen it didn’t. I waited for hours in a bed before they took me into theatre. They then got me ready for Prof Vogl and left me there on the table on my own with no one in sight for about twenty minutes. Despite knowing I am English and all speaking perfect English and having met me three times now almost all members of staff kept talking to me in German! It was driving me insane! This time the procedure really hurt. I felt the cut in my skin and the tube being pushed but no flub dub in my heart. So strange. The drugs they gave me made my head spin… Again it felt so inconsistent to the time before. Once I had rested for three hours had to have my CT scan before seeing the Prof and getting on our way. Well it’s the law of attraction isn’t it? We were sat there for hours and despite me asking to be seen so we could go home they just left us there. The CT scan took 1 minute. Speaking to the Prof took five minutes. Seriously, I was so frustrated. No matter whether you are a private patient spending thousands on every visit, it doesn’t seem to matter. I am still treated just the same. I expect more. That’s just me.
On looking at the site where the procedure was done I do have more cuts and bruising and discomfort this time. I don’t know why or what was different. I do know the Prof is very pleased with the results so far and has suggested one more TACE then we ablate or use LITT which is a laser version to get rid of the largest tumour in my right lung. Pete and I told him that it had already been ablated. He said it didn’t work…

Whilst at Dr Seibunhuners the day before in my head spinney state after having no sugar or food since the night before I got a call from Dr Lim at St Barts. I was told that my tumour sample had returned negative and also due to the positive results of my recent CT and MRI scans that I was no longer accepted on the trial for PDL1. I hate being put on the spot and in my state I didn’t really have much to respond with so once I gathered my thoughts I sent Dr Lim an email.

I basically expressed my confusion as that I simply couldn’t have waited two months to start treatment and had to have radiotherapy and something to reduce the cough and the growth in my lungs. I wondered why I wasn’t accepted based at the time I went to see them? I wanted to know what was I meant to do? The reply I got was could I go and see them… Seriously? I replied telling her my time and money was precious to me and it would so nice to be able to receive treatment in the UK without having to pay for it like we are at the moment. I reluctantly agreed to visit her and Prof Schmid today.

Following that I waited to see Dr Seibunhuiner who wasn’t free so we decided to leave. We met with friends in Frankfurt and it was just so lovely. But I started to feel flu like and aching in my hips and lower back. I had gone a funny colour of white and felt freezing cold. Pete took me home and got my rugged up in bed. I eventually warmed up then became really feverish. Now I always believe that these could be good signs that something is working, or at least happening inside me! The next morning I felt much better before going to see Prof Vogl.

So we belted it all the way to the Eurotunnel hoping to arrive by the skin of our teeth. We don’t make things for ourselves! We would have been fine had a car not set on fire closing our motorway! Argh… being calm we just sat there whilst the road was closed and then got back on our way. We somehow did make it to the train and then got back to Blighty. The journey in England was worse than the journey in Europe. Motorway slip roads were closed, there was so much traffic and this was at 11pm! Finally arriving in the early hours we got to bed and felt thankful to be home.

Pete got up early as usual eager to get things sorted in the office and I got up and got myself on a train to London. I did see Prof Schmid quite quickly but as I expected it was to tell me that I wasn’t going to be accepted on the trial. Pete thought they would be accepting me because surely they wouldn’t get me to go all the way there when they could have emailed me this information?! Don’t be silly. They just added insult to injury.
Pete and I are sure that immunotherapy and PDL1 and PD1 are really something that could be a game changer for triple negative. There have been great results on the studies and things are really looking up. The problem is to get it privately we are looking at £150,000!

Prof Schmid as lovely as he is, said that he believes that PDL1 could be more harmful to me than my current treatment, although he did seem very negative about TACE. He just believes in chemo and all the other pharma type stuff. It’s to be expected really. I can keep in touch and there may be something that will come up for me in the end. But it was made clear that the current treatment I am on will one day stop working like all other treatments. He also said I can’t keep having radiotherapy so if the brain tumours grow I would be put on medication. BUT to stay on the positive side as things are currently working.

I may sound a bit down. This is due to a bit of tiredness and mixed feelings. Female hormones don’t help either. I’m feeling very hormonal. I actually cried when I came out of the theatre yesterday. I felt like a second class citizen. No one really cares. They treat me like a lump of meat. They don’t care about the outcome or my life or the impact it has. I felt all the effort all the people like me are going to, to extend their lives and to be the miracle they hope they can be, and no one really cares. Prof Vogl barely makes eye contact and doesn’t give much time. But that’s him. To be honest I feel that’s what most cancer doctors are like. They forget you in a flash, they want your money and what they say goes. The only one I think that does actually care about me currently is Professor Harris. He genuinely seems interested in me and my plans for future treatment. I still have trouble convincing people to help me with further treatment if it isn’t simply chemo and I really get the feeling that time is running out and treatment is limited. They don’t want to hurt my feelings but I can see it.

A saying came to mind whilst away and I emailed it to Dr Lim, ‘I’m damned if I do and damned if I don’t’. I just don’t seem to get the luck. If I waited to progress and get worse then I could be in a very sickly state, near death maybe. So I proceed with getting better and then I am told I can’t have treatment because I am doing well. I am over the moon that I am doing well. But we just needed a bit of help and some time away from travelling abroad and costing us so much in finances and upheaval. Also making changes to treatment really keeps canSer on it’s toes. But I am grateful that I can go abroad. I thank my blessings every day that I can. I just wish it was better for Pete. He didn’t sign up for this. I do sometimes wish things could be different.

This blog isn’t currently full of Christmas cheer but it will be! It’s not like I am sleep deprived so I apologise… We had a lot of brilliant sleep. I will give that to Germany. Their beds and duvets are the best! 😀

It’s good to be home even if it is brief. We need to organise next month’s travel but right now I have a kitty on my lap purring whilst I type. I intend on getting festive watching old Christmas movies and just want to plan for 2015 which is going to be equally good if not better than the previous 4 years!

I am going to make some tasty vegetarian food, I am sure Pete could do with avoiding sausages and pork for a few days; he must have the meat sweats! Tomorrow is another day and if we get to see it then we are blessed.

Light and love. X

Just being happy….

The weekend was as expected; fun filled and full of laughter and maybe too much fun! Is that possible? It always is leading up to Christmas. So many people to see and try to spend time with before the big day.

As usual I pushed it to the limit and felt absolutely ‘cream crackered’ Saturday but Sunday we had a big lie in and did lots of things around the house; cooking a tasty Jamie Oliver meal and doing chores and watching all the reality TV shows… It’s mindless rubbish to some but I love watching how much it means to the participants. It seems that everyone’s emotions are so full to the brim and close to the surface. I thought it was only me that wanted to cry at everything! Apparently not!

Despite having a restful day yesterday with Pete neither him or I could sleep last night. I think I kept Pete awake to be honest, although I think he has so much on his mind. As much as we think things are going well for me the looming results of the scans are coming.

We think things must be pretty good for me at the moment as I am barely on any steroids and I do not have headaches, migraines or neck aches. Plus there is no cough, touching everything wood.

Our trip to Germany is also imminent. I am not being ungrateful and we will have fun in between having treatments but I really would rather stay at home. I know once I get there though the call of the Christmas markets will keep me entertained.

Pete tries so hard at making everything a lovely memorable occasion.

So back to last night and lying there awake. I wasn’t even thinking about the scan results, but actually dictating a blog/journal.

As mentioned many times before I am finding it hard with the nutritional side of things recently. There are so many do’s and don’ts. What is best to eat and drink and to avoid and so on. But as we know canSer is different for everyone. What if for me, right now, I just need to be happy. And to be happy I need to accept myself for whom I am. Throughout my life I have always battled with what is best and having to exercise every day and having to meditate daily makes me a better person. But what if right now I just need to listen to my heart? What if right now being me and eating whatever comforts me and nourishes me enriches every cell in my body and doesn’t actually feed canSer?
We know the importance of happiness and less stress on our bodies. We know that the mind cannot distinguish between reality and imagination. I am certain that stress and anxiety is a major factor of canSer in my life. I have noticed even the other day having the contrast injected into my arm for the scan how shaky I became. I am so sensitive now to stress and anxiety and I truly believe that is what fuels the canSer inside me. If that is the case then I need to ensure I do things that make me feel calm and happy.

If eating certain foods and drinking juices make me feel nauseas then I shouldn’t do it. I am not suggesting I am going to sit and eat a plate full of biscuits but hey, if that’s what I choose to do then that’s what I will do and not beat myself up about it. As it stands my body’s cries out for what it really wants and so I cooked a kale and spinach soup today. It’s hugely alkalising and tastes really good!

So this got me thinking last night that I have to continue just ‘being’. I have to accept this moment and to just ‘be’. Once one accepts this, life is so much more fun.

The only thing I do continue doing despite not really liking it, is taking the handful of medication and supplements every day. I still battle with swallowing them down and keeping them down, but I do have a way of disguising this challenge by eating with them, which I never did before. It will be interesting to see if my change of diet and decision to be happy really has had an effect on this disease that plaques me.

I am still hopeful that one day I will be in remission. I still have a dream of having a baby despite our ages.  With all the  news coming in presently about big developments with immunotherapy and PDL1 I truly believe that within 5 years treatment for triple negative will be more targeted more than for positive breast cancers. I just need to keep going. And it is a constant battle. I want to do this so much for Pete too. I really want him to have a good life and to know that all the effort, work, money and commitment to me that he has succeeded. He deserves success.

For now I am going to enjoy all the Christmassy things occurring around me and look forward to a bright future being canSer free. There is so much to live for; maybe I have more to live for than most… I’m a lucky girl. Til tomorrow when hopefully good news comes in.

For now I want to thank all my lovely clients that have supported me this year…Here’s looking forward to 2015!

X

8

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.

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

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

It’s all about me!

Had a late night last night with a friend visiting. It was lovely to catch up and have some laughs but I do miss my sleep. I struggled to get up today but still persisted with my exercise and yoga as usual. I worked my triceps today….. I don’t think I have ever used them before. Ouch!

My new exercise DVD has arrived and I’m excited to start that on Monday. I have decided to have a few days off over the weekend. Both Pete and I are looking forward to having a lie in and not doing exercise tomorrow. I am looking forward to having a different brekkie rather than juice. Seeing as it will be my birthday I am going to have a day off from everything! Yay!

Sadly one of the trees in our garden has died and we may need to cut it down.  This time of the year everything looks so healthy and green (except the tree of course!) I love wandering around and checking on my little growers. I still have a tiny bit of bamboo growing under the decking. I see it like canSer for the garden. Not much seems to kill it but I am staving it off and the garden is doing fine. A bit like me really. I can’t help but want to believe that the canSer has left my body… Elvis style. I know that I shouldn’t just focus on that as I am well anyway but I really want it all! I want to be a complete success. It is so very surreal telling people I have canSer. They look at me like I am joking. It must be how people feel when they say they have ME. It’s invisible. I count my blessings I am so well and I also have so much gratitude for the life that I have. I am really happy. We, Pete and I, are really happy with each other and our friends and family.

I think this year could be another big year of change. It’s funny when you don’t force things you wanted to happen, just happen on their own eventually. I really believe if you put it out there in the Universe it will come to you when the time is right. If it doesn’t then something else evolves and it all makes so much sense.  Patience is what I need to practise……….. Hmmm…

I’m going to sign off for a few days and revel in being spoilt rotten. Have I told you it’s my birthday tomorrow?! Ha ha! It’s all about me!

Ciao! X

Meeting old friends and making new ones…..

I’m sat here in sunny Ibiza. It hasn’t been for a few days but thankfully now it is. It’s weird how the weather changes everything.

For the first few days we met some amazing people whilst basking in the sun. Our life stories unfolding. I find it incredible that such strong bonds and friendships can happen in such a short space of time.

But from experience and previous visits here, the friendships we make are life long ones. Every time I come here I go home richer, blessed and so grateful. You wouldn’t think that of such a place where it’s thought to be chaotic and hedonistic.

We have had the pleasure of meeting our good friends who we only met a year ago. They are also incredible people having adopted a blind/deaf child from an orphanage in Russia. I feel humbled and amazed at their strength and unity and above all love.  To be honest it’s been an honour to have their company. And their daughter Marsha has been through so much but seems so switched on and astute and has a hunger for living. Marsha gave me a gorgeous gift including a little glass angel and handmade pot with candle. These have pride of place on my meditation station.

My feelings on arriving in Ibiza were those of nervousness and fear. I wasn’t sure what to expect but I’ve realised that all fear is created by me. I put too much pressure on myself. No one expects anything of me but I do of myself. I don’t want to let myself down by drinking too much and not getting enough sleep for example. I have actually done both of those things and I feel fine about it. Pete says it about balance. Wait till I get home and everything is back to normal. I do worry that I will be ‘punished’. Silly really. I make my own choices and I’m to blame if the outcome isn’t what I want. It’s hard feeling well but knowing you have an illness.

We did toy with this being our last visit to Ibiza for at least a few years but now being here in company of friends, because that’s what the staff here have become, I find it hard to not come back again. The reason for making this decision was that we have so many other places to explore but the magnetic pull of this place is immense. My only wish was that I had will power to stick to water and have early nights!

Met a friend who I haven’t seen for over 20 years. I’m not old enough!

Well it has been a few days since I have written my journal/blog. It’s been fun filled and entertaining as usual.

Friday was Rays’ (the fella we care for) 90th birthday! I have to admit I am surprised he has made it this far since he has been in hospital so much over the past few years but boy, he is alive and kicking and looking forward to life. I’ll give Ray his due he doesn’t stop thinking about the future and what more he can get out of life. I do think though he is a bit old and sometimes crazy in his thoughts. Such as thinking he can simply go out and start driving again and go off on trips when he can’t walk and doesn’t have a driving license but at least he has gumption. I like that word. He doesn’t stop dreaming and maybe that is why he is still here today. I personally would want to be more involved with other people to have friends. Ray doesn’t have any one but us but at least he has us right?

We bought him a cake (without 90 candles that would have been silly really!) then took him out for lunch. We actually had a lovely afternoon and bless him he was really pleased.

Then on into the weekend. Saturday was a special day for me. It had been in my diary for some months and although I was excited I didn’t have any expectations of what the weekend would be like.  Pete and I drove to Brighton to meet a friend I haven’t seen for more than 20 years! I know I simply am not old enough to have friends that long ago but sadly at nearly 38 years old I do! My friend Clare (another one- Clare’s were popular in my year!) and I used to go to school together. In fact in the last year leading to our gcses her parents moved to Wiltshire from Weymouth. So that Clare wouldn’t have to re sit her whole last year in a new school my parents said she could live with us. For six months Clare and I shared a bedroom. We had to laugh. My parents had a huge house which was a bed and breakfast yet Clare and I had the smallest room in the house. Clare’s bed pulled out from under my bed and I used to have to step over her to get up. We had a great time and it was bizarre what clare could remember from that era. My memory is terrible for certain things. Clare could remember dinners we would eat. My mum made things simple for us by always having the same dinners on certain days each week. Monday fry up night, Thursday was pasty, jacket potato and beans night ( except for Clare she hates baked beans and had spaghetti!) then Fridays was fish and chip night, Saturdays chilli con carne and Sunday of course a roast. Apparently Clare remembers Wednesday we would try something different each week. I can’t remember what Tuesdays were! I found that the fact that Clare could remember this amazing! Oh how we laughed. She remembers how mum would tell us off for having two showers each day! Sometimes three! Well at least we were clean. We did of course get up to mischief and luckily for Clare only got in trouble with my –parents for being a tad naughty every now and then. But saying that we always got our homework done first then went out to ‘play’! Clare was academically amazing, had big brown eyes and long gorgeous hair and a great figure. Sickening! I turned up at her front door on Saturday and there she was with three beautiful children looking as gorgeous and fit as ever. Yuk! We squealed for a while with all the excitement and woke the baby! Oops! Five hours flew by and we had didn’t stop chatting. We have so much in common. I definitely won’t be leaving it so long and can see a new friendship with her and her husband to come.

Saturday evening we met one of our friends from home who now lives in Brighton. We went to a vegetarian restaurant (much to Pete’s disgust initially!) which was amazing! Terra a Terre is a must for anyone. http://www.terreaterre.co.uk/  We all loved our food and Pete had a veggie version of fish and chips with haloumi. He thought it tasted better than real fish and chips! We then went and partied to old 90’s tunes. Such a great night. We spent our night at the grand hotel overlooking the sea. First thing the next morning I opened the curtains and the door to see bright sunshine and listen to the seagulls going about their way. After a hearty breakfast we walked and sat in the cold spring sunshine watching everyone making the most of the weather. I simply cannot remember such a chilled out and happy weekend.

On our drive home I felt amazed at how I feel so lucky to have such great friends. I have known so many people over the years but never made the effort to keep in touch. Thinking I didn’t need them and not realising how important they are to me.

I have in the last year rekindled many friendships all of which were in my life 37 years, 23 years, 15 years, and 9 years ago. I know we will now keep in touch and spend lots of time together. I’ve never had this many friends at once. Happy girl.

To top the weekend, Pete has been extra specially lovely. If that’s at all possible? We had so much love and cuddles and he is generous and kind with my friends. He is so easy to with everyone and what’s funny is everyone thinks they kind of know him already from having read my blog. My big wonderful Bear.

So the excitement doesn’t stop there. This weekend coming is a bank holiday. As a surprise Pete has said we are going away and to pack for somewhere cosmopolitan. In a conversation though he accidentally told me we are going to Rome! Bless him. He was gutted he let it out. But I don’t mind! So exciting. It is on my mood board of destinations I’d like to travel to and I have always wanted to go there!! Whoop!

 It’s funny being so busy at the weekend in a relaxed kind of way I felt less tired than I had all week. And today I woke up with a song in my head and feeling very cheery. I don’t feel sluggish and I certainly don’t want to sleep.  I’m almost half way through this cycle of chemo and I don’t really have any side effects except dry hands. But nothing that cream won’t sort out.

All the years I have always wanted to make sure I look after myself, moisturise my body after showering, body brushing, exercising, eating well, reading and more. And now I do them all the time. Ok so it’s because I have been prescribed them or need them for well being but inadvertently I am being the person I always wanted to be but was too lazy to be. My hands and feet are being moisturised every day. It’s crazy that I needed to wait for this to be ‘good’.

 Research has been coming in thick and fast recently. It seems triple negative is really quite a focus for many researchers. This of course pleases me! Apparently copper depletion has been found to ensure triple negative doesn’t spread or reoccur.

Researchers studied 40 women with tumours that were likely to recur. When given a copper-depleting drug, known as TM, patients had a reduction in cells that promote tumour growth.

“For the vast majority of them, their tumor didn’t come back. Even in those that we would really 100-percent expect their tumours to come back,” Dr. Linda Vahdat, Director of the Breast Cancer Research Program at Weill Cornell Medical College said.


Two patients with stage four triple-negative breast cancer are disease-free at four and five years.  Most triple-negative patients with advanced cancer die within ten months and 85 percent of patients with stage three or four breast cancers were disease-free at ten months.

Martha is one of them. Her cancer is still in remission and she’s hoping it will stay that way!

An evolving understanding of how tumour cells spread and set up shop in other organs led to the study of TM to prevent relapse in high-risk patients.

In order for a breast tumour to spread, it needs help. Tumour cells can migrate freely in the blood, but they need a specialized group of bone-marrow-derived cells called endothelial progenitor cells, or EPCs, to grow the blood vessels that feed a new tumour.

“If a breast cancer cell decides to go to the liver or lung or bone, these EPC cells help with establishment of those tumours,” said Baar.

Copper is a trace element we all need in small amounts for the formation of red blood cells and bone, as well as the absorption of iron. It’s also critical to mobilizing EPCs — when there isn’t enough copper available, the level of EPCs in the blood drops significantly.

TM is a copper chelation compound used to treat patients with Wilson’s disease, a rare genetic metabolism disorder that leads to excess copper in the blood. TM binds the excess copper and is then excreted as waste.

In the Cornell study, about 75 percent of the patients achieved the copper-depletion target using TM after one month of therapy, and in these patients there was a significant reduction in EPCs.


Whoa! This is amazing news. I think I need to know more about this copper depletion…..

I must be doing something right?!

Mondays… don’t you just love them? I do. It’s the day that you get everything all back to normal from the weekend and get ready for the week ahead. The house is cleaned from top to bottom, the washing done and bits and bobs all organised. It’s very cathartic and de-cluttering for the mind.

I have done all of the above today and I must admit I feel a bit pooped. I have a stinker of a cold now too. Friday I had a sore throat and thought that I wouldn’t let it get me but by yesterday the nose started to run and I was sneezing like a goodun’! I did the usual panic moment and had to ask Pete if everything would be ok. I always dread getting any illness whilst having canSer as I can’t help but suspect it could be more sinister. Pete said he thinks it could be a good thing. Gettting the immunity to have a response could be the thing that helps rid me of canSer.  I have to admit in my gut I think it isn’t anything to worry about. I don’t feel that ill. It’s simply a head cold. Picture me with a streaming nose and eyes! It’s not going to stop me from working tomorrow or going to my hospital appointment either. In fact I feel well enough that I did some light exercise this morning and yoga too. I believe that when exercising the body releases good hormones and I think that can only help my body recover from this cold quicker.

The cold has probably been brewing for a while but thankfully I didn’t really feel it too much over the weekend as we had our new friends visit. We met them whilst skiing in Austria in February and this is the first time since we got back that we have seen them. We had such a laugh and felt very relaxed with them. Some people are no effort at all and being around them is so very relaxing. That’s how it was this weekend. We had so many laughs (being complete goons!) I am sure our neighbours must love us ringing a fire bell at midnight! I know, I know why have we got a fire bell? It’s a long story but let’s just say our house is full of fun and surprises! I am sure the late night on Friday didn’t help my cold but life is for living. I am kind to myself as much as possible but sometimes I simply cannot miss out on all the fun!

I have been chatting today with a friend about canSer and how it affects the individual. We both agreed and believe that canSer is about ‘letting go’. Of course there are the physical elements and factors to be taken into consideration but letting go of the old stuff, the old you, the old habits, is the only way to evolve and the biggest part of healing is on the inside and in the mind. It’s funny because I have been thinking this a lot recently. I feel like a different person that I was 9 months ago. I can honestly say life is great. I know there are things we would all rather not have to endure and to put up with and always think things could be better, but actually my life is just peachy. Yesterday afternoon when our friends had gone and Pete and I were having our afternoon TV snuffle, I couldn’t help but tell him how very happy and grateful I am to have such a wonderful man in my life. I said that when we are old and grey we would still be tucked into the corner of the sofa holding hands and snuffling closely. Pete interjected and said that he is already old and grey! Ha ha! But I corrected him by saying old is when he is 95 years old. I honestly believe that we could both live to that ripe old age and if we get that opportunity to be together for that many years then boy, life has been wonderful. I hope that the Universe lets that happen and we live healthily for many many decades yet.

Just think by the time I am 95 years old there will definitely be a cure for every canSer going. It’s inevitable. Its right under our noses I think. Drugs and treatments aside I believe the cure is right under our noses anyway. Unlocking the mess we hold inside is the first step to our future health…

Tomorrow I am at the hospital for my next clinic appointment. I received a letter last week for my next ct scan which was booked for Monday 22nd April, but as I am going to be having treatment in Germany I have now postponed it until the 8th May. I am sure Prof Harris won’t be too pleased as he has wanted the scan done of the past five weeks but the radiology department must be busy. I don’t mind waiting. It gives me almost a month of hard work, focussed visualising and really being good with my diet. Pete and I have both decided that being vegan for a while is good way of cleansing ourselves and almost like a bit of a detox. By the time I have the scan it will be about 12 weeks since my last one.

The last few months have been really great. We haven’t been away on any little trips other than Germany and instead we have been spending lots of time with friends. I never realised how important they are in my life until now. The rest of April is the same and I am really looking forward to catching up with friends old and new. I feel blessed that they like spending time with me and my Bear.  One of the most important things for canSer patients is support and to live a normal life. I think I have the balance down to a tee. I simply do not let canSer rule me anymore.

Thankfully, as with the last 6 cycles of chemo, this cycle has been pretty much the same. I have felt great and I haven’t had any side effects. Phew…. I must be doing something right!

There are more Bears out there…

I don’t know what is wrong with me but I only slept for 3 hours last night. I am at this moment a bit jaded. Although, first thing this morning I was wide awake and raring to go… Don’t ya just hate it when that happens? I don’t think I am preoccupied but I must have thought about absolutely everything last night…. such a shame. I feel cheated. The night before however was a completely different story. I had to go to bed at 8pm. I was falling asleep trying to watch a TV show. I just didn’t feel right. Every day is so different. I think I am very sensitive to what my body needs and when I need to sleep I just have to listen to it and go for it. I had such a good day though with my clients. A whole afternoon of working and I loved every minute of it. I really do look forward to my next day of working.

I definitely feel that I am eating too much at the moment too. I’m not sure if I am doing it out of boredom or what? But I don’t like it. I like eating only when I am hungry and I don’t want to let my head take over and get the better of me. It’s my head that got me into this whole mess in the first place!

Yesterday was a good day, after seeing Ray for a visit I had my reflexology session. It was amazing as usual… I simply can’t get enough of it. She really feels things are working well and that my lungs are good. That’s what I like to hear. Needless to say still no appointment for the CT scan but that’s ok as I am in no hurry to have one!

It dawned on me today that all I ever wanted was control and the more I tried to control things and my life the less I had. In fact all I had was anxiety and would rush around like a looney. Now I am trying to control everything in my life less and I think I have more of a handle on it… weird how things go…… A good example is my kitty. I tried to make her a lap cat for so long and would grab her for cuddles and she hated it, and me! Now every morning she leaps on top of me in bed and sits facing me with a big smile on her face. All the years I have had her and all I wanted was to have a lap cat. I stopped trying and there I go getting what I want. There’s a lesson in there.

You know it has made me think would it really matter if the canSer didn’t go fully? I will still have to have a CT scan regularly and as long as I am well I will be fine. I am starting to understand that canSer is a chronic illness not necessarily a life threatening disease. That’s a real thought…..

 

Today we have friends visiting from Nottingham. They are staying with us for the weekend. If the weather looks good tomorrow then there is nothing better than punting and swigging champagne out of the bottle but I fear we may need to take a brolly or do something more suited to the weather. It’s been raining here all night long. I don’t mind as my garden needed it but I could do with some bright warmth. I feel like a wilting flower. I am striving to go into full bloom but without the rays it ain’t gonna happen!

I saw this link today and thought I was the only lucky girl in the world to have a bear but it seems there is another lucky triple negative survivor with a Bear.

This article featured on American news is really heart warming…

‘Pandora’s Josh Huffman was one of five people honoured Wednesday in Columbus as one of Stefanie’s Champions.

The program annually honours those whose dedication and strength were powerful influences in the lives of cancer survivors. Huffman was nominated by his wife, Laura, a breast cancer survivor.

This is not the first time Huffman has been honoured. In August 2007, he was recognized for saving a woman and child from a van submerged in a flooding river near their home.

“I felt his strength and calmness … it went straight to my soul during a time when my strength and sense of peace was nonexistent,” Laura Huffman said about Josh. She did not tell her husband she was nominating him for the award.

“If she would have, I would not have let her enter my name. I like to stay in the background,” Josh Huffman said. He learned about being selected as one of the champions on Valentine’s Day. “She gave me a card telling me about the award.”

Laura said she learned about the award while reading a book by Stefanie Spielman. Speilman wrote about how her husband, Chris, went above and beyond his role as husband to care for her throughout her battle with cancer.

“It embodied everything Josh was for me,” Laura said. “Josh didn’t skip a beat. He learned everything about breast cancer including the terminology and treatment plan. He always was able to tell me what to expect and what was next.”

At age 31 with a husband and three small children, Laura was diagnosed with advanced triple negative breast cancer. Laura said Josh was at every appointment, making the drive from Pandora to Columbus, regardless of work commitments or how big or small the appointment was.

He rallied Laura through 16 weeks of dense dose chemotherapy, bilateral mastectomies, 38 radiation treatments and two stages of reconstruction. He started a binder, filling it with notes, asking questions and researching everything possible.

Josh Huffman said the hardest part about being a caregiver is seeing your spouse going through the treatments, pain and challenges of having cancer.

“The blessings we received though are all the help we had from our family, friends and church,” he said. “The good part of people around you shines through when you’re struggling.”

Prior to the banquet at Ohio State University’s Archie M. Griffin Grand Ballroom, the couple were interviewed for several hours to allow the “Stefanie’s Champions” staff to prepare a video on their story. The video was shown at the banquet.

Josh Huffman was presented a glass plaque during the awards ceremony. Accompanying the Huffman’s to the banquet were their three children; Laura’s mother, Kathy Green; Josh’s parents, Charles and Jayne Huffman; and his sister-in-law Amber Huffman. Laura’s father, Don, was out of town and unable to attend.

“We had the opportunity to meet Urban and Shelley Meyer, who were the honorary chairs during the ceremony,” Josh Huffman said. “We really enjoyed that. Especially our children.”

The couple said they will continue to advocate for cancer research and urge their friends to get screened for early detection.’

 

Awww she is a lucky girl as am I. Bless our Bears. Light and Love. X