One small one still in there…..

Monday morning I had a call from Liz the CNS at St Barts. She said that they had checked out my images and that they can confirm there is a small tumour that requires blasting. She then paused…. I told her I wasn’t surprised because I saw Doc Plowman on Friday and he suspected something but couldn’t be sure. She said the date I was pencilled in for, Friday 27th, for gamma knife now couldn’t be done because the doc had other arrangements. Fine. She said that someone would be in touch in a few days to give me a new date.

I told her of dates I wasn’t available later in May but she said she believes they will want to do the procedure earlier than that. Right… all systems go. So far I haven’t heard anything so i will wait until Friday and then email Liz to get her to chase it.

I am obviously pleased that I am going to get the treatment necessary and that it will finally be gone but I am of course disappointed that there is one there and that I have to go through the treatment. The whole thought of having my head clamped with some sort of frame and them having to inject anaesthetic into my head doesn’t fill me with joy. But it is a day treatment and I should be able to go home that day and be absolutely fine. I hope.
I have been loving the warm sunny weather a little too much. I don’t want to make everyone, especially Pete, feel bad, that when he is at work I am basking in the sun. I have done some chores in the garden but I have really enjoyed lying in the heat of the sun. It’s so warm and yummy. It’s so sad though that the forecast always changes at the weekend when Pete has time to get out there but can’t. It’s sod’s law.
What else is happening?

I have got a CT scan booked in a few weeks and then I hope to get the results quickly so that I can let Nesselhut know of my status so he can decide what to treat me with next.
Research

Pete spotted lots of info on rosehip extract recently for triple negative breast cancer. On reading the research it does look promising and can’t do any harm in taking so I have ordered some. It is doubly helpful because it is meant to be great for bones and joints. That could help my ribs and back and also Pete could take it for his joints too.

With the nights getting longer it really makes me want to do more. The problem is I get so tired at night! I put it down to exercising quite hard in the mornings and also lazing around! Ha ha!
Over the last month or so I have been helping Pete make some lifestyle changes to feel healthier. It’s really motivating to me and so great to be able to help him. So far he has lost 16lbs in weight and seems to sleep better and is much brighter. Our bodies are our temples… it’s just we forget this. Even I do.

So I’m off to the garden for the last few rays. It’s windy and clouding over, maybe this is the last of it?! Argh!

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!

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

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

Good news re gamma knife and now the next step…

I waited patiently Tuesday with no reply from Dr Oliveros regarding the result of the MDT in London. That was a first for me! By Wednesday I was getting a little worried but for once didn’t feel the need to hound the department.
My patience paid off as I got the call I was waiting for. Dr Oliveros said that Dr Plummer at St Bart’s had agreed to give me the gamma knife treatment under the NHS! Result!

She said that my notes were being sent over to him and I should hear from him within two weeks… Two weeks? Ok not to panic. I kinda thought I would be hearing sooner than that. She said if I hadn’t heard by then to contact her and she will chase up.

We discussed  the steroids I am taking and she said I could reduce right down after five days.. Good. I feel very bizarre on them. Or maybe it’s the concoction of codeine, paracetemol and steroids. The cough is my main annoyance at the moment.

She asked how my appointment went with Prof Harris and she could see that I had consented to chemo.
She seems like a really nice doctor.

What she doesn’t know is that in the meantime another canSer friend has emailed me and told me about nano knife. A private treatment available here in the UK. My friend had given me the contact details and I didn’t hesitate to call. The secretary adviced me to get a copy of my report and send to Professor Leen at the Princess Grace hospital so she could show him before he goes on holiday.

Last night I had a Skype chat with some friends from New Zealand who now live in Frankfurt. They gave me invaluable advice on treatments such as TACE as well as advising me on IPT with a Dr Seibenhuner. It seems quite intense but if I can coordinate everything it could be a really great way to ‘go hard’ combining all treatments including DC therapy with Dr Nesselhut. I feel very lucky but now have to try to coordinate as much as possible in the diary.They advised me that combining such things as radiation with other treatments releases antigens and can work synergistically.

Dr Nesselhut mentioned having PDT- photodynamic therapy and mentioned contacting Julian Kenyon here in the UK. I have done that today. It’s all worth investigating.

So now it’s back to waiting but also deciding our next step. I won’t rule out chemo as I am better off having something that I know could mop up the cells. I just want to consider the side effects such as numbness in my hands.

So that’s the update for now….

It keeps life exciting, eh?

I honestly don’t know where the time goes. I was thinking the day before we left the villa that I was going to leave a lovely parting message and my thoughts on the three weeks that had passed.

But before I knew it we were on the road travelling hundreds of miles to get back home. It is now Thursday and we returned on Sunday. I have been thrown back into work (my doing-I booked up straight away) and the domesticities of life.

Despite having a washing machine there I still had many loads of washing and have now cracked the pile of ironing.
Then I was off to London yesterday to firstly visit St George’s hospital to collect il2 injections then hopped on the tube to the London Clinic to receive the IMM101 jab.

It is the last of the il2 injections and part of me isn’t sad about it. I performed the injection as instructed and this time took lots of paracetemol to avoid any side effects. It worked to a degree… Although in the middle of the night I felt hot and very uncomfortable. I decided to take more paracetemol but it didn’t really help. I had an unusual sensation on my arm further down from the jab that I’d had that day. I had a little rub of it and it was an old vaccination site from when I visited Dr Nesselhut. Not thinking at the time I ignored it but now I am conscious I recall my heart rate being elevated and I was having slight trouble breathing… Um, alarm bells!? I think I might have been having an allergic reaction to either or both of the injections I’d had that day. It was very similar to how I felt at Dr Nesselhuts that time I became allergic to the gamma delta cells, but on a lesser scale. Thankfully.

I remember my kitty jumping on me at what I thought was about 3am. I thought, ‘How did she get in here?’, and then looking to the other side of the bed saw that Pete was already up. I was so confused.

I feel pretty drained right now and like I am fighting something. Working today is helping take my mind off of it. I have another injection to do tonight of the il2 and just need to get a cup of ‘man up’ and stop moaning.

I feel all I do at the moment is moan about how under par I feel. I have to admit I haven’t felt 100% in ages. What with nausea and stomach aches, flu like symptoms and this blood cough which is driving me mad!

It’s hard not to think anything of the cough. It is still there and makes me feel rotten. Only because it catches me out. And it’s a non-cough. It’ not producing anything and it really doesn’t feel like an infection. Well I hope. I have been chatting to a virtual friend who says she has been experiencing aches and pains. It is so hard living with canSer and not think the worst of every niggle, cough and ache.

What else has happened this week?

I have been in touch with the London Care Oncology Clinic this week trying to firm up an appointment to see someone so I can have mebendazole prescribed. I have to get a referral letter from Prof Dalgliesh who is on holiday at the moment.

I have also been in contact with a doctor in Wimbledon who offers intravenous treatments such as sodium bicarbonate and salicinum. I had to send a letter of consent from my oncologist, which I have done. I have asked a few more questions before I book an appointment but I don’t seem to be getting a reply.

I sent Prof Vogl another message as he always seems so keen for me to go there and crack on with his TACE treatment. I asked if I should wait until my next scan. Typically he says that I should get there ASAP… Hmmmmm
Monday, Pete and I fly to Germany for my next round of treatments. It has been about 10 weeks since I was last there so I am quite keen on getting some sort of boost. I also need more scorpion venom and Nesselhut is the man I buy it from.

So as usual a lot on….. But it keeps life exciting eh?

Drugs are being removed from funding, Gulp……

Well it’s the middle of January already… time feels like it has dragged but also flown by which I guess is a good start to 2015. I have been settling in to my home life again since we got back from holiday only last week! It feels like weeks ago. So much has happened.

We spent much of our time away arguing with BA to get extra leg room seats for me because of the risk of thrombosis. In true annoying airline style they reluctantly gave me a seat but said that either side of me had to be saved for mothers and babies. Fine… But the insult came when a normal family with a teenage son say next to me. They then asked a random fella if he wanted to change ?! I nearly blew a gasket. Luckily for me the guy was so nice and offered to change seats with Pete who was sat about 5 rows behind and was hugely embarrassed by now. Look its principles to me. Why did BA lie to me and why do they make it so hard for people to buy, book or whatever their seats. A complaint is inbound.

Anyway flight home was OK all bar not sleeping but once we got home we slept and got unpacked. I would like to say I got back into the swing of things really quickly but all good intentions are just that at the moment.
Davina’s new DVD is waiting for me to start. We have had quite an exciting time since w got back. Pete of course has gone straight back to work but squeezing into that time we have been to see Cats in the London’s West End, visited our friends in Nottingham for a 40th birthday AND had a meal at TV chef Tom Kerridges restaurant.
Amongst all this I have been taking things slowly. I look brown, tanned and healthy and have lost a few pounds, so those Christmas indulgences are far behind me. Sorry to those who are still trying. Mine has been by accident really though. My appetite has been flaky and I have been feeling off.

I had got myself in a bit of a worry but have been chatting with Pete, my friend and today at the hospital. It could be my brain causing issues, however, i am not having any headaches, migraines or tingling or lack of cognitive behaviour. I am having light headedness, nausea and trouble getting back into my food. So we think it could my bloods /anaemia causing it. I was borderline anaemic.

The hungrier I get the sicklier I feel. I have avoided my supplements and meds now for some time and I am concerned that i cutting out some of the success I have had of late by not taking them, but yesterday was a prime example. I got up started my day in the usual rituals and threw it all up. I can’t decide if I am an anxious, neurotic or what… I am just hoping it is my weirdness and not anything physical.

I do know though that I have lost a few kilos, as they weighed me at hospital today.
I went to see the Prof who sadly wasn’t there today. Never mind I had a list of questions and was very prepared when I saw Nicky the other consultant.

I also had my first denosumab injection today. This I am to take every 4 weeks and a calcium and vitamin d3 tablet twice daily. The injection is a monoclonal antibody which is an anticancer drug and should help strengthen my bones. Great… I’ll have some of those apples. It does mean I do not need to have Zometa now.
Whilst seeing the consultant, we discussed the fact that Eribulin, a drug which has some great success for triple negative BC, is going to have its funding withdrawn… in March.

My eyes lit up a bit. I explained that I have been having TACE in Germany and that I had thought that since I was offered Eribulin last year could I may be get stuck into that if needed? She said, yes without hesitation. This is a relief. When I had heard the news yesterday that Eribulin was being removed my heart did sink. I thought, ‘Bugger’, I was offered this a year ago and had turned it down as I thought my current plan of action was a good option. I thought it would be just my luck that I wouldn’t be able to get it. Well, well, well. It seems luck is on my side.  I aim to start on the 17th February. It will be done day 1 and day 8 and it doesn’t take long at all. I was also told I could use my right arm for injections seeing as I only had three lymph nodes removed and have never suffered lymphodema.

I did ask about my head and whether I could have gamma knife now? I have to have a scan in February and if this looks like there has been some changes, new ones etc, then the next option will be discussed. This oncologist seems to think that as I have had Whole brain radiotherapy I will never be able to have that again. This is not what we were told. However, we will cross that bridge when we come to it.

I drilled down about feeling sickly and we agreed that trying me on anti sickness drugs would be a really good option and that i could mix and match or do as I pleased…I couldn’t be bothered to wait for the pharmacy so in the meantime I am going to try to overcome this stupid hang up and nausea on my own. I have started well. I was hungry and have eaten lunch. I definitely feel better once eating. It’s overcoming these tablets. I showed the consultant a list of my meds and supps and she agreed that some of them would make me feel a little unwell so go back onto them gradually. I agree.

I will get my self back to feeling energetic. Something so simple really does slow me down and me feel low. Silly really. I am also going to eat plenty of iron rich foods and see if that helps with the anaemia. It’s a bloody minefield… the body is such a mystery!

Anyway lots to look forward to again and so many jobs to be done. I will get there but in my own time. To anyone that i have promised to do something for, I haven’t forgotten (I don’t think!) I am just on go slow….
At the end of the month I have another visit to Germany booked. Of course I am not looking forward to it but I have to do it. I have to beat this bloody cancer.

Anyway my friend said to me the other night, he will buy me a dog when I am in remission. Martin, I haven’t forgotten…..

It’s all about the money…

I have been having such a lovely week. Slowly clawing my life back together again, I think.
I have exercised these past few days and boy do I feel it. I mean, I am doing light exercise; 20 minutes of yoga and then some boxercise. I am aching all over! I didn’t realise how unfit I had become! But it’s good. I need to get stronger and fighting fit.

I still look pretty scary. When at home I don’t wear make up and with my very pale head which is lovely and shiny since Pete shaved it for me, I have huge bags under my eyes… Thankfully I am still decreasing in the puffiness. I am now only taking half a steroid daily which amounts to 1mg.

I had an email yesterday from Prof Harris’s secretary telling me he will book CT scans for me prior me seeing him in December. Actually I had a really nice surprise. I am quite demanding and do really keep on chasing things when I want something. The secretaries do get bombarded with all my emails and requests. Yesterday this particular secretary said that she thought I was really sassy and inspirational… How nice?! I replied and said, ‘Not really. I am simply trying to stay alive and have the best life possible.’  It bought a smile to my face though.

The trial secretary at St Barts has emailed me to say that she has had contact with Oxford and hopefully my tumour sample is being sent down today. It then need to go to US to be tested. Boy, these things take forever….All this to find out if I am eligible.

I’ve been having a little dance today around the kitchen. Pete is an avid listener of music and at the office he plays all genres depending on his mood. He has started sending me playlists to play every day whilst at home. I love it! I have been having a good old shimmy. It’s funny as I was feeling a little rough then the music came on and my booty shook and the sickly feeling went away.Tongue outI’d highly recommend it!

When we got back from Germany last week, I was met with a letter on my doormat from a debt collection agency. They had been instructed by St George’s Hospital in London?! Apparently an invoice had been sent to me on the 24th June for the ablation that I had and I hadn’t paid. I have until the end of the week to pay. I immediately felt stressed. I know what these debt collectors are like. Dogs with bones!

There are two things that are wrong with this situation. Firstly I have never received an invoice from St George’s and secondly, I paid the invoice over a week before the ablation which was on the 19th June. I felt aggrieved that they hadn’t called me asking for payment and they had simply passed my details over to a debt agency. I now have a black mark on my credit rating. Not only that we all know that stress is major factor when it comes to canSer.  Pete said not to worry but I do. It did play on my mind for one night and then I got on the phone the very next morning.
The debt agency couldn’t even be bothered to answer the phone so I called the hospital. They looked at the records and it sounded like pennies dropping. Yes, they could see I had already paid and then they looked for the invoice that I had apparently had sent to me. Ah, they couldn’t see it actually going out. They hadn’t allocated my payment. I did express my concern to the fact that they hadn’t even called me before instructing the debt agency. All the lady could say was don’t worry I will get it sorted and make sure the debt agency are contacted and this is resolved. She promised to call me back. Well she didn’t. I called back the next day and she said she had been busy…. Really… I very much doubt she will get it dealt with and I certain I will be hearing from the debt agency again. I actually look forward to them taking me to court.

With canSer it’s all about the money…. It’s a disgrace.

Whilst in Germany I bought some new supplements from Dr Nesselhut. Boswellia serrata- otherwise known as African Frankincense. Its main benefit is reducing swelling in oedema in the brain and it also has anti carcinogenic properties.

Today, I have been making more of my charity wish bracelets in preparation for the charity ball on Friday evening….It’s getting ever closer and I am really excited to be getting dressed up and having a party with all my almost all my friends! I cannot wait! I am unsure what to do with my head at this stage. Wigs are so annoying and I fidget… Going to have my nails done tomorrow…..Eek!

Hair No More… Third Time Lucky….

Monday already! The weekend was good… I went to watch England play rugby with my Bear and two of our friends. It was full of banter and laughter. Just what we both needed after a challenging week. To honest I didn’t think I would be well enough as I felt pretty rubbish Friday. I suppose everything had caught up with me.

My hair has been driving me mad. Every time I move I can feel it fluffing my face as it slowly fell out. My pillow was hairy and when I had a little cat nap on the snug sofa I was surprised as to how much hair was on the cushion…. Been there before but it is so annoyingly itchy. I didn’t want to get rid of my hair too soon though because if I was going to the rugby I wanted to have hair. Luckily I felt fine and looked ok too.

Sunday we got on with Sunday things and got to see our friend on her birthday. I felt pretty organised getting things done and not being under any pressure. Then Bear and I had hours in front of the box. TV is great leading up to Christmas with all the reality shows. I know it’s not great intellectual viewing but it’s great to take our minds off things.

The problem was as the day wore I started feel rough again. I was shaky… Again. I just don’t know why. My appetite isn’t right either. To be honest we both feel a bit under nourished at the moment. When I don’t really feel like eating a full meal we just make do, so I am definitely not getting as much green veg inside of me. I figure I have to just chill out and go with the flow. Everything will work itself out and forcing things just makes me feel like I am not achieving what I should. But being calm and happy at the moment is more important than having spirulina and juices.

I suppose the main event of the day was that Bear shaved my hair off me.
Third time lucky. I don’t think it gets any easier for him but as he says he would rather shave my hair off than not have me around. My scalp is still a bit itchy as it has some bumps and spots on probably from the radiotherapy sensitivity. I have been using cream on it ever since to soothe and repair it.

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This week we have made a decision to cleanse our systems and try to be kind to ourselves. This means plenty of water, green tea, homemade soups and things that don’t aggravate us. Fresh fish and spinach, and hearty tangibles etc…We shall see how well that goes!

Today I had a Skype session with a spiritual guide who was recommended to me by my friend. I really felt I needed someone to talk to and perhaps lead back to connecting with my emotional and spiritual side. He was great; really friendly, and I felt so calm afterwards. He did some exercises with such as; letting go, God / universe is everything, and choosing five people I look up to and their qualities I admire. I won’t go into detail how those exercises went but I did feel better…

I have also been catching up on the Deepak Chopra meditation challenge and have meditated 3 times today. For the first this morning I actually felt like I really meditated and didn’t just think all the way through. That’s been a while. Actually deep breathing can be quite painful for me still as my ribs are very sore, but I think they are slowly getting better.

It’s so weird that I am typing this and its 5pm. I am not ready for it. It isn’t cold so doesn’t feel like November… Christmas is round the corner and I need to organised!

I have a relatively relaxing week ahead… I’m looking forward to it. I am going to introduce exercise in some form. I have to. I am so unfit and I can’t allow myself to get sicker. Any kind of exercise, even light, will actually help tiredness from chemo and radiotherapy. I’ll start tomorrow. 🙂

For now I have Friends on the TV and I am going to have a green tea…..