Gamma Knife an option?

Friday morning Bear and I went to London to see the consultant regarding gamma knife. I’ve been there before and in typical St Bart’s style my MRI images had not been received. We did however see the consultant who I really like. He, much like the rest of the medical profession, seemed to be in a rush and we were ushered out within five minutes after waiting for nearly two hours and travelling two hours to get there!?

Luckily I had the written summary of my brain scans on my phone. He seemed happy that there had been substantial reduction and that there had not been any further tumours pop up and that I was no longer on steroids and didn’t show any symptoms. He said ‘they’ would discuss me at their next MDT then if I were to have gamma knife then it would be an early start, like I care?!

I got home and looked up emails I had been sent and noticed one from the secretary at the gamma knife centre. She had said there is an MDT on the first and third Monday of every month. That’s today! I hope they have sorted all my images out now and that was discussed today. I really want to have those tumours blasted! I am not loving the process involved, but then who does? Pete sent me the details of how it all works. Sometimes ignorance is bliss. Knowing exactly how they do it doesn’t fill me with joy!

I had an email this morning to say I will be informed when the consultant has made a decision. Okay……
Whilst in London we wandered down to St Paul’s cathedral to be met with road closures and many people on the side of the road… and the Queens car! Then we spotted her going into the cathedral! Eek! I saw the Queen! Haha…
This weekend we headed to the coast to visit my mum. We spoiled her rotten for Mothering Sunday. We took a long walk on the beach, spent time laughing and breathing in the fresh sea air. We made mum an afternoon tea en par with the Ritz, if not better!

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I had cupcakes made with MUM on them and a bag full of presents that I had made for her including a photo album of our memories in the past seven years. Sunday, we went for a lovely breakfast at a beach restaurant and then sadly had to say good bye. It’s never long enough….

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Back to the week ahead and there’s not much going on except the usual routine and exercise and more household clear outs. I am loving clearing out the house, although it still feels like every cupboard is bursting at the seams! We have way too much …stuff.

Mum helped me cast on yesterday so I am on my way to knitting another something special for someone special, although without my mum’s help, it could take a long while!
There’s a lot to look forward to in the next few months and time is flying. I am feeling good and hope it continues. My hair still looks odd with a bald patch but that’s the least of my worries. As is the red, itchy rash like thing on my chin and round my nose.

My blood results arrived today and it seems that my haemoglobin, platelets, red cells, and white cells, well almost everything, is low. Prof Harris says it isn’t anything diet, tablets or any treatment can change right now and it’s not bad enough for a transfusion to be required. I have sent a copy to Nesselhut for him to tell me what he thinks. Well if it’s all low I am not feeling out of breath or light headed, so that’s good.

Here’s hoping I hear from St Barts tomorrow about the gamma knife treatment. Fingers crossed….

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

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Deflated and unsure…

Pete and I went to bed early last night. So early we had about 11 hours sleep! Boom! I love the Zum Lowen’s beds. Dragging myself out of the warm and comfy slumber this morning I scooted to the clinic to have my bloods drawn ready for up and coming visits. I was due to return at 11am for the next hour long treatment but as they had time I had it all done at once.

I had a chat with the nurse whilst lying there. She was telling me how much easier things are now.e asked if I remembered last summer with all the Portuguese patients. Do I? Boy yes. It was so busy and many mistakes were being made.

I asked why it wasn’t as busy now. She said it had calmed down since people had started abiding by their appointments. She said that for a shirt while people would stand there at the counter demanding an appointment. They had travelled from Portugal without having an appointment and cry until the doctor saw them. It’s amazing what desperation does to one. The staff would start at 8am and finish at 8pm. I guess that’s busy over there.
Thankfully peace had been restored.

An hour or so later we met with Dr Nesselhut who was lovely as usual and this time had a doctor from Amsterdam sitting in with us.

We explained again the scan results and he seemed concerned by the necrotic ones that were active in my lymph nodes. He said that he would like/expect no changes so if the next scan still showed a lot of change then we need to let him know so that he can change our protocol. Pete mentioned the fact that I’d had head/neck ache for sometime and Nesselhut insisted on getting it checked out by way of bone scan. He said it is probably nothing but better to be sure… Not what I wanted to hear.

Pete also mentioned my cough and explained Prof Harris’s thoughts on it. Nesselhut was less concerned but suggested codeine at night… Not sure why.

A lot of conversation was banded about things that could be done and what was inbound. He talked a lot about anti pdl1, pd1 and more. We said we thought I had already had that. He said in the vaccination, yes, but not injected directly into me. He said the quantity required would result in the cost of £100,000! He suggests it works better because when administered in the vaccine we are just training the dc cells, whereas administering it into the body, it attacks the protein cloaking the canSer and therefore has a much better response. They have high hopes for this.
Pete not knowing the price asked when we could start that treatment. Nesselhut said not yet then told him the price….. Jaws dropped. Let’s hope I don’t need that then!

Whilst chatting about triple negative Nesselhut said that they had amazing results for those who had not waited till they metastasised for dc treatment.

He says the success rate for those who have the treatment is 100% over 5 years. If only I knew about his work before the canSer had metastasised.

For someone like me he said there was a 30-40% success rate over 5 years… Well I guess that’s me in that 30-40% then!

This is great news for any TNBCers out there. It isn’t the worst thing ever to have that diagnosis and despite needing funds if you can obtain them, then go for it. It’ll save your life.

I had my vaccination intradermally and intravenously. My arm is currently as big as a balloon. The biggest reaction yet. I feel fine. I am longing to be at home but then who doesn’t when you are sat at an airport.

Thoughts have worried me this afternoon. I guess if I am being ever alert then I know in my gut that I should get my headaches checked out. If I am being less cautious then I want to wait.  I have neck ache. It feels like I need a bloody good massage. The thought of having an MRI scan fills me with dread.

Whilst having a green tea this morning I suddenly felt sick and had to rush to the loo where sadly I vomited. What caused that? Don’t know….

Last night I spent a little while trawling through FB, as you do. I saw a post on The Huffington Post. I’m not one to follow blogs, bizarrely enough on other canSer survivors, but this one caught my eye. I read it to Pete and we both cried. Not wanting to ruin it for you, the outcome isn’t all happiness and joy but the power of the internet has meant her post has gone viral and her husband has written to thank everyone now that she is gone. I’m reading far too many posts of late of women dying before they are 40, not just of breast cancer but bowel cancer and more.

Here’s a link to Charlotte Kitleys’ final blog that she wrote before she died : HUFFINGTON POST

Followed by her husbands reply; Well, it’s not quite the end…

I don’t think Charlottes’ post was all doom and gloom but full of love, hope and happiness. I will take her advice and run with it.. I advise you to do the same.

Night all. Hopefully I’ll be home soon tucked up in my favourite place with my favourite person plus the little furry one.

Xx

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…..

A weekend donated by The Willow Foundation.. heavenly…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

XX

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Note to self- read my own blog! Happiness helps immunity….

I’m back! It feels like ages that I have been away and have written a blog. I felt relaxed, chillaxed and completely calm but then I let my head get involved and start wanting to control my life again. I keep forgetting that I can only do so much but relaxing and living is the most important thing. Note to self.. read my own blog! Ha ha!

Holidays are great at reminding you what life is about. The good times, expanding your mind, rekindling or reinforcing the love you have for your nearest and dearest and your better half. It’s also a time when most people get sick!

How many times have you heard of someone that gets the flu or a cold as soon as they go on holidays and they asume that they are winding down their body has succumbed to the illness? This is infact entirely wrong and Dr Steven Ray has conducted research which shows that it  is the stress caused by preparing to go on holidays that weakens the immune system so that you then succmb to illness. He did this research by testing the immune response of his unwitting students. Half of the class performed the usual syllabus which although testing was was within the bands of their ability and throughout their immunity remained around 90 on a 0-100 scale.

The other half of the students started on a normal syllasbus with consistnet immunity but in week 4 unexpected by cadaver work and autopsy was introduced as a subject and they were told that 2 weeks later they would be visiting the mortuary for real body work. Over this period of 2 weeks as the stress increased their immunity was constantly measured and dropped steadily to a low of 10, on the actual day.

To put this in context, the immunity of someone suffering from HIV is around 65. Needless to say just after this half of the class called in sick and it took them weeks for their immunities to improve and return to normal.

This proves being happy keeps you healthy. Happiness is the cure to all ills! I need this tattooed on my forehead!

Back to reality today and marching forward with more appointments and planning the next route to my treatment.