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

New beginnings…..

I’m sat in my room at the Zum Lowen in Duderstadt. We are once again living life to the full after a weekend being joined by our good friends from Ireland. Feeling tired but happy we got here late last night. We flew to Hannover and then drove to Duderstadt. We are so unlucky with the weather. It rained then snowed then blew a gale all the way here. Poor Pete hated the drive here especially with over 14km of roadworks! Apparently in two weeks it will be about 18 degrees and sunny. Typical. Let’s hope the next time we visit it is better.
After a brilliant nights sleep in one of my favourite beds I had a hearty Zum Lowen breakfast then headed to the clinic. Today I thought I was having the usual oncothermia, Newcastle disease virus, and an  interleukin 2 shot. Instead I had an infusion of nivolumab.

I knew I was having nivolumab on this particular visit but had no idea how it would be administered. It took about an hour and half to complete and there isn’t any side effects expected as it isn’t a chemo, it is a monoclonal antibody.
Now this is where it gets a bit technical. I don’t really understand it all and if you asked me I couldn’t explain it to you as I have a memory like a fish but the explanation is below of how it works and what it does.
Nivolumab works by blocking a protein called programmed cell death 1 (PD-1). Drugs which inhibit PD-1 may be able to treat a variety of cancers.

PD-1 is a protein on the surface of activated T cells. If another molecule, called programmed cell death 1 ligand 1 (PD-L1), binds to PD-1, the T cell dies or becomes docile. This is a way that the body regulates the immune system, to avoid an overreaction. Since many cancer cells make PD-L1, the cancer cells can disarm the T cells and inhibit them from attacking the tumor. Nivolumab blocks PD-L1 from binding to PD-1.
PD-1 blockers appear to free up the immune system only around the tumor, rather than more generally, which could mean they can have fewer side effects as well.[3]

Currently nivolumab is being made by Bristol Squibb Myers. I called them recently and asked them if they would provide me with nivolumab so that Prof Dalgliesh could administer it for me. They said no. Then Prof Dalgliesh contacted them and they said it wasn’t licensed forbreast CanSer. Oh well it was worth a try and would certainly have been much cheaper than us obtaining it here in Germany. However, when asking all the doctors I have seen in the UK what their thoughts were on nivolumab . I was pleased and surprised to be told go and have it and to put other treatments on hold. I have never been told this by an NHS doctor. I was worried about postponing starting eribulin as I know it should be effective treatment for me but Prof Harris said why put more toxicity in me especially when my bloods have been so low recently.

I had some bloods taken this morning and the lab here will check to see if my haemoglobin has improved enough for them to take plenty for my next few visits.

I have everything crossed that it’s good. It hopefully will be better than my last bloods that I had done ten days ago. They had already risen from 8.9 to 10.9 so fingers crossed once again.
For more info on nivolumab click the link. It will also give a link to current trials available.
http://www.cancer.gov/drugdictionary?cdrid=539733

What else is new? Other than eating my body weight in food I am keen to get back to exercising regularly when we get back and I think I am going to mix it up including rebounding, weights, yoga and more.
My skin has really been odd recently too. I have a rash like area of spots on my chin and round my nose that is itchy. I have great skin normally. I associate the chin region with hormonal issues so I am unsure what is going on…
My hair is slowly growing back and is so soft and fluffy. I am very impatient and really want it back now. The problem is the stripe down the middle of my head is still bald! I have a reverse Mohican that looks more obvious by the day! Haha…

Mum went home Saturday and it was really sad to see her go. The week flew by and we had such a laugh. She taught me to knit and we really got stuck in. The good thing is that the repetitive strain injury has now healed…haha. I’m good to start knitting again!

I have today emailed the secretary at the NHS. I am chasing up the gamma knife treatment at St Barts. I am very aware that Dr Plowman only has one MDT a month and I want to be featured so that I can have the procedure soon. I have re read a letter that his consultant sent to my hospital and it says that once I have had whole brain radiotherapy and there are no new metastasis and the current ones have improved and are stable that he would happily do the procedure on me. Well, based on last weeks scan he should be happy to proceed. As with the NHS and any other doctors you have to push for these things.

It’s weird. The last few months have been pretty up and down and the results so far have been really good. I get the feeling that for any kind of success it has to be hard and painful. Wouldn’t it be lovely that if this nivolumab, which apparently gives no side effects combined with dc therapy, actually works? Painless and effective…. Please please please…..

Now for an afternoon of chilling and reading….

Light and love. X

2015 Bring it on!

Todays’ New Year’s Eve.and thoughts go to.. Will I be here next year?

Will you?

Does that sound negative?  Depends on your frame of mind.
I have just spent the day on holiday in Antigua with my man and strangers. I laughed, contemplated, was just pain lazy, and looked dreamily at my bear hoping for many ,ore days, years like this.

I don’t feel sad. I feel over overwhelmed. I’m not scared of dying. I’m not sad if I died and had no more. But I be sad not spending every waking hour with the love of my life and the opportunity of what could be. Wouldn’t you?
We chatted over our extensive Caribbean lunch about what I am afraid of. I’m afraid of pain and not having quality of life. Pete pointed out that as long as I felt the most love and that as long as I wasn’t really struggling for breathe for example that every single living moment was worth it even if I was bloated on steroids and riddled with tumours.
It doesn’t matter any way. I keep having dreams or even lucid dreams of someone with powers looking at me and seeing inside me and seeing the cells of cancer like those sea particles that light up like luminous fireflies. They can see them leaving my body.

I have to be honest, as usual. I haven’t felt well. I’ve experienced sickness and giddiness every day. I’ve been sick most days and I’ve been off my food. It’s boring really. It’s upsetting not knowing why. But today has been good. I haven’t been sick. I have felt giddy but not too bad. I have been good not drinking alcohol and eating healthily, as I can.

So today is the final day of 2014. I’m not the sort to dwell or to plan huge for the future. I always have to lot to reflect on and be grateful for and I love planning for the future.

I’m sat here on our balcony, welling up with tears again. Goodness knows I’ve been doing it for days.. Tears of happiness actually. I have had a few secret cries through despair but I didn’t want to stress Pete anymore than I have . He already worries and loses sleep every time my head hurts and sickness occurs. We try to turn a positive spin on it but fear creeps in and the impending doom lingers over our heads. But todayI feel better again. I have stopped the supplements again. I can’t stomach them. I feel rank. Full stop.

Right now the sun has set and I’m hoping the little Mosquitos bugger off long enough to enjoy my time listening to Joni Mitchell and dancing with my Bear in his arms.

We’ve had a great afternoon shaking our booties to some dodgy tunes, swimming in the sea, bouncing on a sea trampoline and eating in the best restaurant on the island. The kindness, happiest people are here. I’m filled with love and in fact we spent the afternoon on Jacqui O’s Love Beach. Couldn’t have been named better.
So what does tonight bring? Australia are in 2015 and the UK are not far off it.
We are hours away and as usual I could easily go to bed.. Sleep and me are still best friends.

We will spend it on our own. No need for anyone else. No frills, spills or gimmicks. I only ever want to be near my favourite people. My favourite Bear. The rock, my love and my one who will continue to carry me through the tough times ahead. We still believe I will be NED.  We still think our own baby is possible and we will carry on living like there is no tomorrow.

Let’s face it do you know what you would do with you last day on this earth?
Today could be it. I’m not sorry. I never will be. I cry a lot.

I cry because I can’t believe I’m so lucky. I cry because I will miss it all. I cry because I have so much to give. I cry because no one knows how good life is if they haven’t lived in my shoes.
So what’s next?

The usual. Continue doing what I’m doing. I may have been off the radar a lot but I don’t feel like journaling when I’m ill. I don’t like to draw attention to illness. I don’t want you to have to feel sorry for me. I’m not asking for attention. And I know it can be boring and depressing dragging on about my minor ailments.
My biggest hope for 2015 is to feel happy, healthy and full of beans! I turn 40 in 2015… Not older but much wiser!
We have lots of things we want to do and I’ll reveal them once we have mapped them out over our bottle of champers later tonight.

But right now, I want to say 2014 has been immense. Better than expected. Despite the brain tumours, the surgery, the numerous vaccinations, the disappointments and let downs,  the highs, the lows. What stands out? My support.
My wonderful friends, my supporters from all over the world that give me strength to keep going, my family who are in pain too and my ultimate, 100% Rock of a husband, Peter, Bear….. Life doesn’t get better than this.
I’m never alone. And I can’t thank you enough for that.

Life doesn’t get any better than this. But if it can please God please make 2015 our year! Triple negative gals need a bloody life line.  And if 2015 isn’t the year this happens just know that I’m not going anywhere without a fight!

2015- bring it on!!!!!

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

PDL1 negative….

The weekend is looking exciting with German Christmas markets to enjoy. The only issue is a storm heading in to cologne.. Boo…
I have received confimration from St Barts that my tumour sample does not express the protein for pdl1, however they are still interested in me going to see them next Thursday as I may be able to get on the trial anyway.
I can’t decide if I feel sad or happy? I looked at the info online and it isn’t necessary a bad thing that I may not express the protein. It’s so complicated it makes my brain burst but all I know is that it is still potentially a really good option. What bothers me a bit though is that if I get all the way to St Barts next week to be told no. I don’t relish in the thought of getting up at the crack of dawn, fighting for a seat on the commuter train, if it arrives on time, waiting for ages to be seen at the hospital to then be told no. They may not find quite such a happy go lucky girl if that doesn’t happen. But I guess if I do make the effort I can plead with them and try to change their mind.
They have asked for copies of my scans and reports which the Churchill have done for them.
I hope they don’t just read the summary of the reports which never really summarises what the prof tells me.
Who knows? This one is on the lap of the gods… What will be will be and then I will make my plan based on the outcome.
For now I know I have a few days of intense treatment and hope that my scan after this will be even better than last weeks.
Let’s hope if they are down by 50% then we can be down by another 25% or more. The largest tumour in my lung is now less than 3cm and the lymph nodes are less than a 1cm as are the ones in my brain. Tiny…. Tiny, tiny,tiny.
Today we hope to dodge a storm that is descending on Germany and make our way to Cologne.
We have also been sent some really interesting information from our friend in Australia regarding timings of treatments and immunotherapy. He has suggested I have a certain blood test three times per week prior to the trial drug being administered. I will have to speak to all the doctors regarding this but mostly the ones at St Barts as this could really assist their studies.
I am intrigued to know if success is due not to just the treatment but when a person responds to it.. It could solve the questions as to why a year ago I was practically clear of canSer but despite all the efforts this year it has increased and spread?
Yesterday I got a bit down and was questioning my body.
I don’t understand the why my body is anaemic and why my my platelets are so high making my blood sticky and therefore a risk of thrombosis?
I had a chat with a doctor from the care oncology clinic and they’re not too concerned as to the levels and said they are not that bad… Ok that’s good.
Regarding the anaemia though; I looked at when the levels started changing and it was around the time I stopped juicing. In my juices I always had a high level of vitamin C and green powders. This could be one reason why my blood is less oxygenated and also why I am losing iron. Or could it be the enemas? It’s time to start monitoring now I introduce these elements and changes into my life.

I am also intrigued as to why the tumour markers are dropping.. I mean this is great isn’t it? But what am I doing to make this happen? And if I get below the normal point does that mean that canSer will stop growing and spreading?

Sometimes having too much knowledge is a hindrance. It is for me anyway. Ignorance is bliss!

Today my face looks puffy again. I think so anyway. My appetite has changed and I feel full and fat. My weight however was the same as normal when I went to hospital on Tuesday. It’s so strange the effects of treatment and medication on my body.

Anyway happy Friday everyone and keep warm and stay safe in the crazy weather we are all having.

Xx

Results.. the quick version or the long?

 Today was the day that was looming. Despite being calm and brave I did feel sick to my stomach again getting ready for the hospital. I simply can’t help it. Pete was the same although he probably wouldn’t admit it.
Prof Harris was on form as usual and asked about my henna head and seemed really tickled by it.
He immediately said its good news…. It’s so good that he knows us now.
The suspense kills us!

He said it was a bit complicated to explain but he sort of stammered his way through it. Nothing is ever black and white is it?

What I would love to hear is you have no cancer Mrs Grant.. You are in remission!
But sadly life isn’t quite as cut and dry as that and I am not one of those miracle remissions that you read online… Don’t know why.. That’s triple negative for you.
BUT! There is loads of amazing news.

The lesion in the lower right lobe has reduced from 33 x 27mm to 27 x 15mm.
The lesion in the right upper lung now measures 38 x27mm which was previously 40x39mm.
The small bilateral nodules have also reduced in size.
The left lung looks stable except the lower nodule apparently has increased by 1mm.. Hmm really?
There were areas of lymphangitis carcinomatosa!? And pleural thickening… These have all now been resolved.
The pericardial effusion/ fluid around my heart, has all now gone too! Woo!
The lymph nodes, a huge area of concern for me, has all now halved in size!

Earlier this year they picked up on an ovarian mass and told me it wasn’t cancerous from the way it looks. They now are unsure if it is cancerous or not, however, this has reduced in size too so they do not feel it is necessary to do anything about at this stage.

They did find the following though;
A broken rib on the right side of my body! Pete was right! I knew I was in agony when I coughed and sneezed a few weeks ago. I felt such a drama queen rolling around the floor in pain and not being able to cough properly. Well now I know I had due cause for it! A bloody broken rib! That explains why sitting and lying down having scans at Prof Vogl’s and Dr Seibenhuners was such a challenge…
The other thing they have detected is a bit confusing;

A new 21mm mixed sclerotic and lytic lesion in the left side of the body of t8 and a similar lesion on t9… So canSer had spread to my bones… Bugger…HOWEVER, Prof says that it actually means that the CanSer started to grow but now it looks like it is repairing and that the bones are hardening.. So it is getting better.
This obviously disturbs me but does make me think back to October time. I was lying in bed many a time and had a feeling of there being a hole in my back. I remember saying that I feel like my energy was pouring out of this hole. The discomfort and pain kept me awake quite a few nights and now I know it was that. I don’t have the pain or discomfort any more… Bizarre but brilliant!

So Prof says carry on as I am and the only new introduction is that he wants me to start a new drug for the bones. It is not to stop canSer but assist the bones is staying strong. It is called denosumab. I am to have it injected and it will be organised by hospital at home. I am happy to inject myself. I will also need to have calcium and vitamin d. Well I have vitamin d already. However I had reduced it since I was tested and told it was seriously high.
The MRI scan results were equally as good. All tumours have reduced by 50% and should continue to reduce in size. I am to continue on the low dose of steroids for now.

As well as this news Prof gave me a chart of my blood results over the last few months.
It shows that my platelet count has increased above a normal level. He says it could be due to the chemo treatment I am having. It increased from about August so this doesn’t correlate with that but maybe with other treatments.
It showed my haemoglobin levels have dropped at the same time. He says there is now a risk of thrombosis and I should be careful when flying.

The other thing he pointed out was the CA -15-3 in my blood. This is actually the amount of cancer cells actively circulating. A normal person’s level is about 30 iu/ml.
At the beginning of July time mine was really high at 60iu/ml. It has gradually decreased to 45iu/ml…. This is so exciting! It’s reducing.. If I can get it low enough canSer may actually stop growing and leave my body!

Pete and I are over the moon, but we have such a long way to go and it does drive me on to really blast it at my next visit in Germany, then hopefully the trial with the pdl1 in London will be the thing that blasts it.
We have been receiving so much info through email and Google alerts about immunotherapy and timings. It seems things work better when administered every two weeks.
We are still gathering information but once we do we will post on here all the details.

I can’t say initially I was jumping with joy because it’s a lot to take in and nothing is ever simple, then Pete came home work and we decided that a celebration was due and cracked open a bottle of champagne. It felt fitting that we should enjoy ourselves and give ourselves a boost for the next chapter, 50% left to go…..

Today we leave for our road trip to Germany… It’s going to be a long few days but worth it. Plus I get to chat to my Bear for hours if I can stay awake! Haha….

Xx

9

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

Henna Crown fit for a Kitty princess……

It’s officially the festive season… Now its December we have got our Christmas tree up and the house is feeling fully festive! I am actually quite excited! I’ve had a few days at my mums and conquered the Christmas shopping and have now completed the wrapping of all the presents. What a mission. But it’s now completed. The cards have been written and posted…. Phew…

Health wise I have been plodding on doing all the rituals and taking a handful of pills and potions every single day. Things are getting easier in that area. I know it’s all a mental thing. It’s the thought of taking them that makes me want to be sick.

Dietary wise I am still eating what makes me happy. I figure that forcing myself to eat what is apparently best for me isn’t currently doing me any good. I am putting on weight which is a good sign.

Yesterday I had an MRI and CT scan. It’s been two months since I was diagnosed with brain mets and I haven’t had any headaches and I don’t have any chest symptoms such as that pesky cough. Even after having had the MRI and slept last night, I didn’t experience any headaches, which the MRI can cause. My head was throbbing quite a lot whilst having the scan but the lack of headaches has to be good news! I have been taking my concoction of drugs and supplements and my regime is quite extreme when I am at home. Pete did say to me my only job these days is to get better. Right oh! Results, I hope, are going to be given to me next Tuesday when I see Prof Harris in clinic.

I am still waiting for the results of my tumour which has been sent to St Barts and now to the U.S to see if my tumour expresses the protein blah blah blah… whatever it is, it still hasn’t arrived, HOWEVER, I did receive a message from the lovely lady at St Barts saying I may be able to get on the trial even if I am negative.. Hmmmm, interesting…. I still hope obviously that my tumour is positive. That would be a great outcome and the trial should be successful for me. I was asked to go to London and have ECG, bloods, and more scans done in preparation for me starting the trial.

Despite me having scans here in Oxford I still have to go there. I explained that I am pretty hectic the next few weeks and over Christmas so it has been agreed that I will go down and do all that in a few weeks then aim to start the trial in January. Let’s face it; I am yet to see what Prof Harris has to say. You never know, all the stuff I am currently doing could be working, plus I am due back in Germany for more treatment in a week or so with a little sneaky trip to the Christmas markets. Well you can’t expect a German bear to miss out on a bratwurst and gluhwein!

Today has been an exciting day. I went to Selfridges in London and met with Pavan, a henna artist. Actually she is the world record holder for being the fastest henna artist! She did a henna crown on my bald head… I was a bit nervous as it was being done at her henna bar in the middle of Selfridges and I wasn’t sure if I would like it or not. But seeing how confident Pavan was and how friendly she is, I totally trusted her. She said she would make it pretty and use glitter and gems.. I was totally sold. I love being glammed up and I really want to learn how to do henna crowns so that I can do them for other ladies in my position, hopefully at the Oxford Maggie’s Centre and at home here.

It didn’t take long at all and I also had a bindhi applied. I am thrilled with it and so were the spectators that had gathered round. On the train home an elderly lady asked if I was going to a photo shoot. When I said no she said that I looked amazing and should have a photo shoot! Bless her.

The henna crown lasts about 10 days and then fades off. I can’t wait to give it a go myself sometime. For more information on Pavan and her work please go to her website; http://www.pavanonline.com/

Here are some pictures :

5 6 7

With Christmas coming there are so many people to see and many celebrations to be had. This weekend is crammed with fun with friends, starting on Friday. I can show my head off with pride.

Hoping everyone else is feeling the love, light and Christmas cheer…. XX

Progress for radiotherapy…

I have had some progress. Yesterday I was booked to see Prof Harris for my usual clinic appointment. On Monday, eager as ever I emailed all the doctors secretaries and asked about when I would be seen for radiotherapy. I was told to call the radiotherapy department. You don’t have to ask me twice. I got straight through to the lovely lady who said she had found my paper work and asked how long I had been waiting. I told her a month, true and a little bit untrue. She called me and asked if I could go in the very next day, so yesterday. Yes! It worked out perfectly combining it with Prof Harris; Two birds, one stone.

I told reception on my arrival that I was going to radiotherapy after seeing the Prof. They saw me almost immediately.

Prof was lovely. As usual. He actually said he thought going to Prof Vogl was a great idea. This surprised me a bit as I got the feeling he didn’t approve. We advised him that Prof Vogl had advised me to take capecitabine again on a very lose. He said that I should taking it immediately especially as I am going to be on radiotherapy because it can affect the results. Really? He also said it is pointless taking it when I had responded on it then it stopped working. Blimey…That was lucky then. I have stopped taking it.

He asked about me cough and I told him that I was full of snot (too much information?) and stuff. He said it was difficult to tell if they lymph nodes were improving. I also told him that my side was in agony and he remembered how it was six months ago.

We went straight from there to radiotherapy. The male nurse was nice albeit a little bit of a jobs worth and when he told us the dates for having ten days worth of treatment our hearts sank.The dates overlapped the dates for Germany to see Prof Vogl and Dr Nesselhut. Bugger…

We told the nurse and he insisted on calling Dr Oliveros. We tried to explain that it wouldn’t matter we would move the Germany dates but he said he felt he should tell her anyway! How irritating..The nurse then started saying it might mean we can’t proceed with doing the mask making and ct scan if we have to put it off! Argh!!! Seriously how annoying was this man?

We waited and decided whatever the outcome we wouldn’t be going home without the mask being made.
The nurse walked in and said that Dr Oliveros had decided giving me twice the dose over a period of five days would be just as good. What? Wow! This was even better than I expected. I didn’t want to go hospital for ten days anyway being trapped under the mask.. This was a right bonus!

Whoop! So, on we got with making the mask. This is where the male nurse actually ended up being lovely. He didn’t mean to stress us out and actually was such a kind a gentle man (Pete thinks a bit creepy! Haha). He explained what he was going to do and how the mask would feel; hot then cold and I would be in it for about 8 minutes. I was very concerned with feeling like I wanted to move and also wanting to cough. He put on calming spa like music and then stroked the contours of my face and spoke really calmly. Now as a beauty therapist this was brilliant. It was highly relaxing and I really appreciated his concern and care. What a lovely guy. He kept reassuring me and saying I was doing really well.

And that was it! The mask was made. I then had to go and have a ct scan with the mask on. This time the mask was a bit tighter and I was worried again that I would feel the urge to cough. But I held it together. Thankfully.

doctor
Overall it was a really good day. I have dates starting from tomorrow for radiotherapy and then I can go to Germany for treatment.

I have been advised about the side effects of radiotherapy; such as hair loss and dry skin, headaches and tiredness. Prof Harris said I would stay on steroids for a short while then the radiotherapy should work over a six week period. I will be scanned in December.

I am not sure how quickly hair falls out with radiotherapy but I guess I will find out soon enough! If at all…
So tomorrow it starts… I feel quite high spirited. I am feeling pretty well.

Let’s keep that going…

X

This is Bear…..

Hi this is Bear,

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

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

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

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

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

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

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

Bear