Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel?

Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel? Ha ha…Oh well…. I did! Last night was an epic nights sleep….  So much so that I woke up with the puffiest face and eyes that I have ever had! My first appointment at Dr Nesselhuts clinic was at 10am when  I was told that my bloods were fine from the lab tests. Phew…  That’s good news. I had many, many vials of blood taken so that they can be frozen  by the lab and used for future dc vaccinations.

Then I had hyperthermia followed by a Newcastle disease virus jab.
In between appointments Pete and I killed some time then returned for the vaccination.  We saw Thomas’ son Jan this time.  He is just as lovely as his dad and seems to really know his stuff too.
He was pleased with my recent scan results and proceeded to discuss nivolumab.  He explained that unlike other antibodies and vaccinations which tend  to leave the body within about two weeks,  nivolumab has a half life of about four weeks,  so when I have my next infusion of nivolumab there  will still be a residue in my body therefore making it accumulative.This is classed as a good thing. He also said I had about 1mg per kg of weight.  The usual amount would be 3mg but they like to wean you onto it to ensure you don’t get too many side effects.

Plus, it would cost a fortune if we had 3mg per weight!  Then Jan dropped the bombshell… He said that because nivolumab affects the immune system I could get an auto immune disease.  That means any organ or system in the body could be affected. If affected then  I could of course die from that auto immune disease.  Er….. Brilliant. But it’s ok because if I get any symptoms or illness then I could be put on strong steroids like cortisone or prednisone to stop the disease. So yesterday when I was pleased that there wasn’t any side effects and how nice it would be to actually receive treatment without any pain or misery…  I was wrong. Life is so full of Yin and Yang! I wish he hadn’t told me.  I don’t want to think about the possibility of getting arthritis, failed organs, or anything really!  I just want to be healthy and happy- CanSer free! Well as I type this sipping on my mint and lemon hot water I just think to myself, ‘what’s the worst that could happen?’
Right now I have a choice. I’m already taking a leap of faith. I am to try out this combination of nivolumab and dc therapy for three months and then scan to see if it’s working.  The worst outcome is that the canSer grows and spreads.  The other baddy is that I get sick from the side effects and get too ill and die.

For melanoma, nivolumab really is a game changer so let’s hope it works just as well for us TNBCers. I must point out that the trials for nivolumab in the UK are totally different to  what I am receiving as I am having immunotherapy as well. The other choice is I go straight back to Prof Vogl and have TACE and do what has been working recently. I never know what’s for the best. I can only react to symptoms. That’s the best way forward.  So I am going to be alert, live healthily and just plough onwards and upwards.  I will ask for another scan in about two to three months and continue to have my bloods done every few weeks. I am still having denosumab for my bones and will continue with my supplements and medication.  We left the clinic with plenty of time for our flight. As usual the weather turned nasty.  We had a torrential downpour of hailstones.. It’s actually getting funny now. We arrived with plenty of time for our flight though… Four hours to be precise!  Shame there wasn’t any earlier flights we could have slipped onto.

Looking forward to my own bed. Let’s hope I sleep as well as I did last night..
Xx

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

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

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

Never felt so grateful and thankful.. and I did it!

It’s been a week already and I cannot believe how much has happened and how I have felt. As I mentioned before we were going on a skiing holiday and I was very nervous as I hadn’t been on top form, to say the least.
Well I needn’t have worried. The day we travelled to our Austrian Alp destination everything went swimmingly. Flights on time, luggage came out first, taxi waiting for us and the weather was gorgeous, therefore the traffic was brilliant. Our hotel welcomed us and we immediately got our room. Then we organised our skis and sat admiring the sunshine and view. We couldn’t wait to get skiing the following day.

This wasn’t to last…. a blizzard arrived over night. The temperatures plummeted and the winds were blasting. But we were on holiday, we had to ski. I must be mad. But we went out in extreme conditions for two days on the trot. Our faces were whipped with the wind and I couldn’t see a thing. One by one the chairlifts were being closed and skiing became near on impossible. But I didn’t moan, believe it or not! I just thought it will be fine. Pete is an amazing skier and I knew he would take care of me. We had a few falls but nothing major. Bizarrely enough I didn’t have any sickness and my appetite was good. Pete was a bit disappointed as he so wanted to have a good skiing holiday. I tried to keep his mood buoyant by bursting into song throughout the day. My song of choice, ‘Do you wanna build a snowman!?’ from the movie Frozen. It stuck for the whole week. It was ok though, we had a spa in our hotel which had a really cool outdoor pool surrounded by snow…. We used the facilities to the max.

Tuesday everything changed. We were promised better temperatures, lighter winds and even some sunshine. And then every day got better. We ended up having four days of glorious sunshine and perfect ski conditions. I can’t remember being so happy. The resort was lovely and we skied up to 30kms some days. I was out of breath but mainly through exercise, altitude and the adrenalin pumping around my body. I cannot believe I could actually do it. I didn’t think I was fit enough and I certainly cannot believe that only the week before I was light headed and feeling sick. I laughed continuously for the whole week, mainly when I was following Pete down a mountain and he accelerated so fast! It was brilliant. With weather like that we got to sunbathe on deckchairs and take in the view too.

On the last day Pete decided we would tick off all the pistes on the map that we hadn’t done this meant doing the hardest runs. I’m capable of doing the black runs, which are the hardest, I just don’t have the confidence or guts usually. I did them with some difficulty but then came a run that wasn’t technically a run and before I could change my mind I was screaming my way down the mountain and scaring another skier to death almost. Once I reached the bottom I was shaking all over! I never want to do that again… Pete just said he knew I could do it….Hmmmm.
The very last day and the very last piste I cried….I’m such a softy but I really felt so emotional. I couldn’t have been more grateful and thankful for having had such a wonderful week with the love of my life.

Being back is a bit strange although I do love it here. We slept like logs on our first night back. That was one thing we didn’t manage very well whilst away. Both of us hardly slept. We would wake in the middle of the night thinking and having weird dreams. I have always believed that the mountains give off a strange energy and I have always had trouble sleeping there. Now we are home I feel great at night…haha. I love my bed, I love my bed, I love my bed!
In my sleepless state my mind was rushing all over the place. I thought a lot about setting up a charity called the Grant Foundation, as Pete’s father died of cancer and both Pete and I have had cancer. We discussed trying to set up a clinic where others could obtain some of the treatments I currently have abroad. Of course this needs a lot of work and research. We also discussed raising more funds and thought maybe a ski challenge would be apt. Maybe skiing across the Austrian Alps within a time frame….Gulp… This needs some thought!

The fact I have been so well it did make me wonder if I should return to work seeing as I am hugely capable of getting on with things as I showed in Austria, but  having spoken to Pete I have decided to really try to recuperate. It was only a few weeks ago that I was feeling dreadful. I still don’t know if my bloods have improved and this could take time.

So what’s in the pipeline?
Today I am off to hospital for an MRI and CT scan. It’s only been about 10 weeks since my last but I need to know what’s going on before I can start any other treatment as well as wait for my bloods and immunity to improve. I don’t get the results until next week.

I have messaged Prof Vogl and advised that I will need to wait for this to happen until I go back to him again. He has urged me to go back but then he would.
Good news is my weight has increased, from eating so much Austrian hearty food. This is essential for me and I have to keep eating!

I have decided also that I want to start having therapies again. I had stopped for a long time but I just didn’t feel like receiving any treatments. But now I am ready to be balanced and strengthened and pampered just a little too. Tomorrow I am going for reflexology. I cannot wait.
Here a few snaps of our Austrian adventure…

XX

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What a difference a day makes…. From no visibility to pure sunshine.

17 18

A week of treatment, bad weather and chaos!

Gosh I didn’t realise how long it has been since I blogged last. In my head I am journaling and blogging all the time as I have so many thoughts. It seems getting it down on ‘paper’ as it were, is not like it used to be.

I have had quite a good few weeks on and off. Ever since the weekend in Cornwall I have felt stronger and have been really putting on weight and exercising. Things were going well until I went to Germany last week.

It was a mixed week of treatment and chaotic events. We decided to drive to Germany as we figured we were going down to Frankfurt and then to East Germany. Not having really thought it through we set off Monday morning. It took us 9 hours to get there! As well as this poor Pete had come down with a fever and felt terrible. Within a day he had a massive cold sore on his face and then a really weird ankle pain had appeared. Since then his ankle is swollen and very sore. It’s a mystery but like a trouper he plodded on.

This was ok, as the next morning we didn’t have a really early start for Dr Seibunhuners except were given a room which couldn’t sleep in… It sounded like the lift was in the room with us. The next day we changed rooms…
I don’t look forward to Seibhuners. I don’t really like how it feels a bit unorganised. You’d think I would be used to this by now but I find it very disrupting. I had the usual hyperthermia, infusions of DMSO, B17 and artemesinin with IPT. This time my blood glucose went as low as 40. I could tell too as it had quite an effect on my bowels and I felt awful that night- flu like as before.

We chatted to Seibenhuner who is very hard to understand. He seems a bit crazy too…. We wanted to know about PDT and options for brain mets. We hit a brick wall really. I haven’t booked my next visit yet.
The next day after sleeping well in our new room we headed to see Prof Vogl at 8am. I got to see him first but as usual it was all very rushed. However the rest of the day wasn’t. I must have spent about 5 hours in total waiting around and that is not including the 3 hours of recovery time.

I sat freezing in a gown after an MRI for my procedure. I asked the Prof for lots of pain relief as it really hurt last time. He obliged but then it seemed he really did use all of his pressure and I have been left quite bruised this time. It’s that or I am sensitive at the moment.

After recovery where I felt off my head on the drugs they had given me I had to have a CT scan to check to see if I was ok and not bleeding. I sat for almost 3 hours waiting for a scan that took only minutes. I simply can’t stand it. I then saw the Prof again very briefly to tell me that the largest tumour has reduced again by about 10 per cent. Despite asking, he never gives me more information on the other tumours and the scan provided, I can’t do anything with. I asked about the brain mets and he said he could do TACE in the brain. Uh? How? But given very little info. He simply has given me another appointment to the same thing next time. I am feeling in the dark, despite asking the questions. How many treatments? My body has more than one tumour that needs to be treated. It’s a bloody mystery.

I have since getting back emailed many questions in the hope I will get some sense.
We left for Duderstadt to see Dr Nesselhut the next day. Arriving in the afternoon I had oncothermia, blood taking for testing before having more bloods taken for future visits and il2.

The next day I had the same thing except I couldn’t have the bloods taken as the results showed my haemoglobin is down to 8.9! I can only assume this is due the chemo in TACE. I saw Dr Nesselhut after and he was lovely as always. At least I get a conversation and compassion from him.

He told me of a new protocol combined with DC therapy that in the few people he has vaccinated has had remissions. He said he negotiated good prices and wants to use it on me next time.
I am currently trying to find out more about the drug he mentioned and will update you once I know more about it. I felt an instant rush of gratitude and felt quite overwhelmed. It was hard not to cry. Maybe this could be the hope and the change I need and then for all other TNBCers?

Having had a week away, Pete had said to book a few nights in Paris to have some fun after the gruelling week which had left me in pieces. I was not feeling well and really felt quite broken. Leaving Duderstadt quite late, the weather had become nasty, snowing heavily. Little did we know we were heading into traffic carnage. The motorway we headed onto had miles of stationary traffic and we luckily came off before we were stuck… Luckily is not the word I used when I saw the state of the untreated rural roads! Oh my goodness. It was horrendous. Both Pete and I were so scared especially when our car skidded all over the icy roads. In total there were 53 accidents in that area. The traffic on that motorway was more than 30 kms long and they were there almost all night. Poor things.
We spent hours getting only a few miles and realised we wouldn’t arrive in Paris until about 4am. Neither of us could do that. I called the hotel and pleaded with them to let the charge for that night go because of the extreme circumstances. The French guy said that he would and that we couldn’t check in until 3pm the next day. I thought it was a bit off but said fine. We then made our way to Metz and arrived late in the evening and found a hotel there for the night.

Pete at this point was wishing he hadn’t suggested the Paris addition to our trip. The next day we got up and headed to Paris, this time we were met with fog and snow and very icy roads…. Boo…
Arriving at the hotel we were informed that they kept the room for us all night and that we had to pay the full two nights stay. Honestly we just attract chaos and misery into our lives! This didn’t go down well with either of us and demanded to see the manager. I won’t go into detail at this point as to what happened but let’s just say I am still waiting for an email from the manager with a credit note for an extra nights stay as they wouldn’t give us a refund.
Hey ho… Moving on. We had a great time in the end in Paris. The Eiffel Tower is magical and the love and happiness overcame the events of the previous days.

Sunday we drove to Calais and got the train home. The weather was again very challenging but when we arrived home we were so relieved. I have since felt very nauseas and have been vomiting. I am gutted. I can only assume that it is the chemo and hope to overcome my light-headedness soon.

I have been emailing all the doctors giving them updates and asking advice. I am still booked for Eribulin later in February but really need to sort these bloods out and start to feel better first. I am doing what I can. I am eating the right foods (mostly) and have done some meditation and yoga and introduced green powders and a green juice into my day too. Let’s hope I recover soon! Please…..

Completely immersed in living….

Well… I’m back! It’s been more than a week since I have blogged and I can say I have missed it but I also didn’t have time to miss it. (Does that make sense?) I have been completely absorbed in Pete, my friends and the awesomeness of skiing and the views. Every single day I counted my blessings, couldn’t believe my luck with everything I was witnessing and experiencing and generally feeling very chuffed with myself.  That’s what holidays are for right? Completely immersing oneself into their surroundings and being present. That’s what I was… completely present. No worrying about home, work, kitty or anything.

But… as usual I m always so happy to be home. Maybe for the first time I have a little amount of holiday blues. However I couldn’t have skied any more. My poor little legs couldn’t hack it!

Getting home was an ‘interesting’ experience to say the least. What with all the storms and high winds we have been having the takeoff and landing tested my faith. I closed my eyes and prayed to whoever would listen that we would make it home in one piece. I kindly ask that I do not experience that again please?!

Now I am home I have a lot to catch up on. Washing firstly… there is a mountain of it and coursework. I missed a week of the health coaching course. I am ploughing through it today though in-between housework and clients.

Yesterday Pete and I spent a lot of the day eating healthy food and watching the Winter Olympics. We lacked a lot of foods that I love abroad, mainly as I simply wanted to indulge. (The cold weather makes me want to eats carbs!) The first Olympic medal for Great Britain was achieved yesterday and I felt so happy and overwhelmed. I love seeing people achieve great things.

Now we are home there is much to be done and much to look forward to. I try to live in the moment and not look too far forward but it does keep me focussed.

I am happy to have returned to my rituals and immediately did a coffee enema yesterday. I have to say whilst away I took the chemo drugs as usual. I felt very anxious about it but thankfully I really didn’t experience any side effects.

The only down side to the trip away was the lack of sleep. I am convinced it is a combination of food, drink and the mountain energy. Of course being back in my bed for two nights already, has meant I am feeling nicely rested.

So what’s next? There has been plenty of alerts on triple negative research all of which I post on facebook as and when it arrives. And tomorrow the scan results are in. I am trying not to think about it as I naturally get myself worked up and fear the worst. But I am trying to take my own advice and not think about what may not be and just keep thinking about how I feel today. I can’t change it I just have to deal with it. It is a pretty cruel situation to be in every 3 months though. The tension mounts and I feel like exhaling deeply over and over. Poor old’ Pete has to go through it too and it would be just amazing if all this hard work from both of us could pay off.  I feel great so if that’s anything to go by then we should be fine.

Till tomorrow… X

I’ll leave you with a little picture of me on top of the world.

The tree comes down tomorrow… Come on 2014..Lets be having ya!

It’s still technically the festive holidays and how fast time goes when you are not in a routine. I am looking forward to going back to ‘normal’ but also loving having time off doing things out of my usual daily rituals. The last couple of days we have been starting the year off on the right foot by visiting family and friends that we didn’t get to see over Christmas and before our year flies away with us we decided to make some long road journeys to make sure we saw those that are important to us.

The weather has been Godly to say the least and our world seems so very wet at the moment. There is more scary weather coming tonight and it seems sad that most of the UK hasn’t had the chance to really spend any time outside in the last few weeks. I am certainly feeling like I am missing vitamin D.

The list of things we would like to do this year is increasing and I am starting to get excited and a little bit impatient. Monday it seems I have the longest to do list ever but the most important thing is to get back to organising and researching my treatment plan.

I simply do not feel like I have canSer and to be honest I am fully ready for it not to be part of my life anymore. If only life were that simple. I have been reading a lot about people that have had full recoveries even in stage four and I am convinced it is possible.

Still patience is something I have to deal with and as I keep being reminded by Pete someone that looks and feels as well as I do isn’t going to die. However we all know how life can change at the flip of a coin and I simply will not take life for granted.

Tomorrow is the last day of our holiday and we return to our lives on Monday. Our Christmas tree has been beautiful and has barely dropped a needle so we will be sad to take all the decorations down tomorrow and chop the tree up for fire wood. I cannot believe I have to wait a whole year to do it again.

Still that’s one thing we can all be sure of.. That time stands still for no man and you can always guarantee that things will change. My aim is not to be afraid or fear for the future. It has been and will remain to be the biggest obstacle for me to overcome. I let life flow. I say this to myself daily as a ritual.

I welcome in 2014 with open arms and live each day as fully and happily surrounded by love as much as physically possible. After all love is all you need… Right?!

C x

Back to reality with a bump!

Well it’s been a while and I thought as I was on holiday that I would take time off from everything. At first I thought time was going really quickly but as the week drew on I was actually feeling like I had been there forever! We had mornings when we got up and got our trainers on and walked with all the locals along the esplanade for about an hour. It seems they are a healthy nation and power walking and running are done frequently.

There were days we over indulged at night partying till the early hours then the next day just stayed by the pool to rest it off. We walked for hours and ate great food and loved each other.

I was ready for home but it’s always sad when a holiday comes to an end. The reality of life starts to kick in and the all that holiday romance goes away. Work and life reminds you that you can’t live in that bubble forever. I don’t really get the holiday blues I get the feeling of panic or dread that I have got canSer. Even though I talk about it to people that I meet it isn’t the same as the realisation that everything could change in a flash. And for me that’s so true as today I am going for my CT scan. It’s been three months already and I have to say I haven’t had any thoughts about it for the last week and I am bit worried that I haven’t made a big enough effort to become as strong as I could do to really get rid of the little suckers inside.

We had some exciting days out with friends and we also made new ones. I met two lovely guys by the pool one day. I thought I recognised one but couldn’t place it until they introduced themselves. Nate James was a contestant on The Voice Uk this year but has previously been a singer for many years with successful albums and Mobo awards. A little snippet of who he is; http://www.youtube.com/watch?v=4G7Jo9Fh4ic

I was obviously very excited to have met him and his guitarist Dan. We spent hours together chatting and evenings drinking at the Port. They are such nice guys. Dan Rennie Wood has just cycled form London to Paris on a Boris Bike for Macmillan and raised over £10,000. For such a great cause and doing such a hard trial on a bike that isn’t really equipped for that distance.

Today I went to the hospital for my clinic appointment, blood tests and the 3 monthly CT scan. I was there all day. I took my Zest magazine and bided my time with tips and news on health and fitness. I don’t relish having my ct scan but was also not prepared for the oncologist to tell me to come immediately back after having the CT scan to give my results! I normally wait for two weeks but as she wanted to know what to prescribe regarding chemo she felt that we ought to know today.

I discussed with her about the chemo and she said that it really is beneficial to have the same dose of chemo as long as I am tolerating it. I understand that not rocking the boat is definitely the way forward.  So off I trotted had my scan then waited for another hour for my results? It was a simply remark, ‘stable’. I was initially very pleased with that but then the oncologist said that there had been a tiny increase in the lung nodules of 1mm so she felt it was so insignificant that there was definitely nothing to change. Me being me came away with my mind whirring. I am pleased with it but decided to print out all reports I had received in the last year. There are six in total. I now realise that I have five nodules; two in the left lung and three in the right lung. It is the right lung they have compared sizes to this time and say that the increase is from 8mm to 9mm in one of the nodules. That’s it. No other information. There is a positive though….. They say there has been no change in the left lung since the last time. Now looking at the last scan report from May it says that the nodules are too small to assess! I am getting so confused. What one radiologist says the other doesn’t remark on. I am not complaining. I am just trying to understand. The fact is that the nodules that are there are bigger than they were when I was first told about them in July last year by about double, although incredibly tiny. The good news too is there is no spread and there still isn’t any in my lymph nodes. So all is not lost… I just want good news! More of it! I am greedy! I know I shouldn’t focus on getting rid of them; just keeping them stable would be good enough. I think about Kris Carr all the time and she is living over ten years on with the tumours staying the same. I just really wonder though is she doing it all without conventional treatment? It comes back to knowing what is actually working and what isn’t. I am in a place where I am happy to continue with everything that I am doing but part of me still wonders should I eliminate some things to see what happens?

I do wonder if it’s because I have been less kind to my body of late. Many birthdays, anniversaries and holidays have meant more acidity in the form of alcohol and less sleep.  Have I been lacking in the visualisation front? I don’t think so but I always have a feeling it has gone. Am I in denial?

All I know is that when the Bear comes home tonight he will give me a pep talk and then get back to it stronger than before. It just scares me that life is going to be like this forever. Ignorance is bliss. I get tired if knowing about it. I just wish it was a lazy slacking kind of canSer that would take thirty years to ever have any major affect on me and do any harm. That’s the thing with triple negative. In its nature it’s very aggressive. I have to give myself credit then because if that’s the case I am batting it back rather well. Ok it is bigger in some respects but less of it in others. This time last year the naughty little suckers were in my lymph nodes. Now there is none. This is all progress. But it goes to show how it changes all the time!

So it’s Gods and the Universes way of tapping me on my shoulder and saying,’ Come on You… stop slacking.’ I now wonder whether I should go for some major dietary changes. I have been really getting into following Polly Noble and Tanya Alekseeva, better known as Better Raw, recently. They are such advocates for healthy raw, vegan food and there is so much sense in it as it provides all the necessary nutrient rich foods needed to heal a body. I guess I always wonder if I go to all that effort and things don’t improve could I have been living easier… Silly way to think really. What I need to think is that it will do me good. No doubt about it. And wouldn’t I rather feel good than sluggish and tired a lot?

Well we are already stating on the right footing as Pete has decided to do a juice fast for health reasons for two weeks starting yesterday. I am going to go as raw as possible during this time and see how much I benefit from it. Maybe it’s something we can continue forever?

That means no alcohol during this time also. I think it’s a great idea as it is an incentive for me not to drink anything or be tempted to. I have really considered having therapy to give up completely. My problem is that I feel like I am missing out if I am not included in the party. It’s silly really as I was reading about Zoe Ball today who has become tee-total and is loving life. I wonder if I will be boring by constantly saying ‘No’ to a glass of champagne. I always want to be part of the fun and drinking has always been a major part of my fun. Time to rethink me thinks!

Right so the Bear has returned from work and now time for my pep talk… I’ll be back with my plan of action shortly I am sure. All fired up and ready for the next three months…….