I am not dramatic at all… am I?

Our journey back to the UK was as expected, fractious. I always knew it was going to be hard. It always is when you are up against time. I thought I had given us plenty of time to get to the Eurotunnel but sadly there was a glitch at the clinic.

As we were leaving and preparing dates for our next visit they informed me I would need more blood taking. More blood?! I only had that done on my last visit and they were clear when they said I didn’t need to have that done this time. Of course I let slip…. I trusted them. Now I am not complaining but this is a lesson for everyone. You have to be on top of things and constantly asking. Pete asked them why they hadn’t taken it during my appointments this time. The lady said she didn’t know. Pete asked who was responsible for it. She said she didn’t know. Right…..
I nearly burst a blood vessel in panic and frustration but luckily they agreed to take my blood before I left. The problem was they had delayed us for almost an hour and then made me wait a further 45 minutes. So that meant we left two hours later than expected to get home.

We desperately wanted to get past the tricky rush traffic in Central Germany. Oh we wish…
We got stuck and some. Then we were in every traffic queue going, due to accidents. But Pete ploughed on and got us to Calais about two hours before our booked train. I always book with time to spare and normally we hop on an earlier train, as you can do in normal circumstances but not this time! They made us wait until 22.50pm! Then I looked at the board and they had shunted us back to an even later train! I had a little spat with the train staff and they got us back on the earlier original train. Apparently because of holidays it was much busier than normal. Well maybe getting there later than expected was actually a god send. If we had got there four hours earlier we may have had to wait until 22.50pm! Hmmmm.. Every cloud and all that.

Once we got back into Blighty we had a good two to three hour drive home. You would think that at that time of night it should be fine but there was so many road works, traffic jams and crazy drivers! I was so pleased to get home and slip into our own bed. In total we were driving for 11 hours.

So treatment went well, apart from their lack of organisation for future visits. This is my advice to anyone in this situation. Keep in control. No one else will do it for you and the staff really do not consider your location, costs or time.

Since we got back I have been catching up washing and enjoying being home again. I have felt reasonably well all except a throbbing in my head. I am sure all canSer survivors feel fear when they have new ‘things’ going on inside of them. For a while I had a blind spot getting in the way of my vision. I was worried but stuck it out and now it has gone. Well this throbbing in my head has worried me. It’s something I have never felt before. Pete pointed out it only came on when I had my treatment and it could be a good sign. I agree, it is likely to be nothing. I hope.

So I went to bed with an open mind and just thought to keep an eye on it. I had no trouble sleeping and the throbbing went away during my slumber. It returned but less than yesterday. I thought this is good… But then I got visuals and have had a migraine this afternoon. I used to get migraines a lot previous to being diagnosed with brain tumours but this does worry me.

I awoke in the night and had a feeling of extreme panic, a rushing of adrenalin and blood. What if things had progressed dramatically? What if I was having an aneurism?! I am not dramatic at all, am I? But you know living like this is hard. All the years I used to have niggles and ignored them and they went away. This disease has made me paranoid! The thought of gremlins in my head, does my head in!

When the symptoms completely passed and when I stopped taking steroids and there were still no symptoms I felt great. When my results showed that the tumours were tiny I just hoped that they would continue to get smaller. And then these annoying things start happening…. Oh well, I have an MRI scan booked for Monday. I guess it’s come at good time.

I had a knock at the door yesterday. It was another bunch of flowers sent by Pete, as he knows I may be down on my first day without him. Bless. They are lovely. I’m a lucky girl.
The weekend is here and there is plenty to do and to enjoy. X

Passion…..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Light and Love

XXX

Learn the art of patience…..

‘Learn the art of patience. Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure. Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success.’

I have been trying so very hard to be patient. But last week I thought I was so very close to getting an appointment for the gamma knife procedure at St Bart’s hospital on the NHS.

As you know from my last blog I was given a date over the phone for this procedure. The next thing I was waiting for was confirmation of the appointment which the secretary had said she would email. The following day by lunchtime I still hadn’t received it so I called. The secretary said she had sent it. This started the whole palava of her realising that she hadn’t received any emails for a few days. Seriously? She hadn’t thought to check why she hadn’t received any emails?!  Then she noticed emails I had sent her had gone into her junk box. Frustrating isn’t the word. To be honest I feel like a nuisance constantly calling and emailing but it makes me realise that I have just cause to!
Then I discover the letter that has been emailed to me is another outpatient’s appointment letter not a confirmation of the gamma knife procedure. I call her back again. She starts rambling saying that she needed to ask someone to call and that it wasn’t as simple as changing the letter. Eh?

In the meantime I had been also emailing a lady at the gamma knife centre. She said I requested the outpatient appointment so that Dr Plowman could look at my MRI images and be discussed at their MDT. I said that they had already done that. She replied and said as far as she knew my last appointment was a complete waste of time. I argued my point and asked why I was then given an appointment by his secretary? The gamma knife lady said his secretary couldn’t have done that as she doesn’t have the ability or authority to do that! Oh my goodness… how hard is it?

I then emailed both parties and was quite frank with them both. I got a call from Dr Plowman’s secretary telling me a consultant was going to call me. That never happened.
Then I got a really nice email from the gamma knife lady who said she was awaiting for Dr Plowman to reply and that all matters were in her hands with a clear and robust plan of action. That was Friday.

I emailed today and she replied to say that she has now passed it onto the gamma knife CNS. (By the way I don’t know what all the abbreviations are- I don’t know why they think it’s appropriate to confuse patients further?!) I have replied and asked why and what’s going on… but had no reply.

It’s actually quite boring. And I don’t want to get upset and impatient but I do believe that I could have organised this with my eyes shut.

There are so many issues here that I cannot even be bothered to detail them now.
I am hopeful still but I also have that sinking feeling. What bothered me the most is when I asked Dr Plowman’s secretary, ‘How do you not know the process of booking in gamma knife patients?’ She answered by saying that Dr Plowman doesn’t do many on the NHS. He does more privately. Great….That is disgusting.
So I am trying to be patient. But I got fed up and decided to email my lovely ladies at the Churchill. I told them the synopsis of this farce and also how great they are as well as the consultants. I may have had a few issues in the beginning but they have always replied promptly, appointments booked and everything has been clear and simple.
As expected my lovely lady at the Churchill replied almost immediately and says she is going to try and find out what is going on.

I guess one of the problems with gamma knife at St Barts is this… The lady at the gamma knife centre doesn’t work for the consultant Dr Plowman and isn’t employed by the NHS. So her systems and procedures are separate from the NHS. So Dr Plowman’s secretary really cannot do much for me.

I say keep it simple! There would be fewer issues and maybe when I go for an appointment my images may be there if it’s being dealt by one person?!

So I’m still waiting…..I’m practicing using my energy by focusing on good things and being ever hopeful… but let’s face it. If I haven’t heard anything by end of day tomorrow I will be finding Dr Plowman’s email and phone number and contacting directly!

Booked but no confirmation as yet….

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

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

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

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

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

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

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

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

Until tomorrow when I hope I have confirmation…..

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!

1

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….

0

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….

Letting go of the niggling thoughts…

Things are going really well on a day to day basis. It’s unreal that only last week I was having treatment in Germany. Thursday and Friday we got back into routine and began a new regime. Pete and I desperately need to feel better and that means making lifestyle changes. Pete wants weight loss and to be fit and healthy. I need to feel strong and balanced and improve my bloods. With being away so much it’s hard unless you put your mind to it. It’s all about planning.

The weekend was brilliant. We had lots of sleep, cuddles, love, laughter and the sun shone. We worked hard in the garden and cleaned the cars. Our godchildren visited and ran round the garden. Then yesterday we had a family dinner. These are the simple things that make me feel complete. I feel like I achieved something. It’s cathartic.

We didn’t drink any alcohol and I feel great. Pete doesn’t notice changes as much as I do. He had withdrawal headaches from stopping eating sugar and having caffeine. If nothing else I want Pete to feel healthier. The foods and drinks that go inside him now will be more nourishing.

I’m taking more supplements now. Nausea and vomiting has definitely passed and I’ve decided to stop taking the steroids. I was on such a low dose that my body makes that much anyway. So far so good. I’ve introduced reishi spore oil again. I really think mushrooms are great for the blood.

I’m on a mission to really get into exercising again. I need my body to feel stronger.
So with all these positive changes and improvements why do I still have niggling thoughts?

It’s been a tough four and half years. The last five months in particular. But I know that they’ve been rough because I’ve combined many treatments that take a toll. Now I’m on nivolumab with dc therapy mainly, apart from a few other bits and bobs. The thing is I’m worried. I’m worried that it’s not enough.

Three months of it and then I’ll have a scan. When I was having TACE and infusions with IPT I kind of new it was working. Symptoms were going and I could feel my body improving. Having a scan didn’t worry me massively because I knew things were improving. Now I’m a bit like- argh!

I hope to God and the Universe that I’m doing the right thing.

Every little physical change I’m really aware of. Last night I had a tickly cough and thought ‘Oh no, not my lymph nodes again?!’ Then I went to bed, thought positive thoughts and feel tip top this morning. So panic over.
I don’t want to be like a scare-dy cat for the next three months. I want to feel confident and enjoy now…

Life is such a gamble. I would love assurances but no one has that do they?

Today I have been to the hospital to0 have my bloods done again in preparation for administering the denosumab injection tomorrow.
I also had a pleasant surprise today by receiving an appointment letter to see Dr Plowman this Friday regarding gamma knife treatment. That happened quickly. Let’s hope we have a better experience this time. Once I can get the brain tumours gone completely I will be really confident about beating this thing.
So for now I want to continue getting stronger and feeling fitter and more cleansed and treating this body and mind with the utmost respect. X

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