20. January 2015 15:15
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.
13. January 2015 13:58
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.....
31. December 2014 22:01
Todays' New Year's Eve.and thoughts go to.. Will I be here next year?
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!!!!!
17. December 2014 17:44
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
12. December 2014 09:53
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.
10. December 2014 13:52
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....
8. December 2014 17:43
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!
3. December 2014 17:41
It’s officially the festive season... Now its December we have got our Christmas tree up and the house is feeling fully festive! I am actually quite excited! I’ve had a few days at my mums and conquered the Christmas shopping and have now completed the wrapping of all the presents. What a mission. But it’s now completed. The cards have been written and posted.... Phew...
Health wise I have been plodding on doing all the rituals and taking a handful of pills and potions every single day. Things are getting easier in that area. I know it’s all a mental thing. It’s the thought of taking them that makes me want to be sick.
Dietary wise I am still eating what makes me happy. I figure that forcing myself to eat what is apparently best for me isn’t currently doing me any good. I am putting on weight which is a good sign.
Yesterday I had an MRI and CT scan. It’s been two months since I was diagnosed with brain mets and I haven’t had any headaches and I don’t have any chest symptoms such as that pesky cough. Even after having had the MRI and slept last night, I didn’t experience any headaches, which the MRI can cause. My head was throbbing quite a lot whilst having the scan but the lack of headaches has to be good news! I have been taking my concoction of drugs and supplements and my regime is quite extreme when I am at home. Pete did say to me my only job these days is to get better. Right oh! Results, I hope, are going to be given to me next Tuesday when I see Prof Harris in clinic.
I am still waiting for the results of my tumour which has been sent to St Barts and now to the U.S to see if my tumour expresses the protein blah blah blah... whatever it is, it still hasn't arrived, HOWEVER, I did receive a message from the lovely lady at St Barts saying I may be able to get on the trial even if I am negative.. Hmmmm, interesting.... I still hope obviously that my tumour is positive. That would be a great outcome and the trial should be successful for me. I was asked to go to London and have ECG, bloods, and more scans done in preparation for me starting the trial.
Despite me having scans here in Oxford I still have to go there. I explained that I am pretty hectic the next few weeks and over Christmas so it has been agreed that I will go down and do all that in a few weeks then aim to start the trial in January. Let’s face it; I am yet to see what Prof Harris has to say. You never know, all the stuff I am currently doing could be working, plus I am due back in Germany for more treatment in a week or so with a little sneaky trip to the Christmas markets. Well you can’t expect a German bear to miss out on a bratwurst and gluhwein!
Today has been an exciting day. I went to Selfridges in London and met with Pavan, a henna artist. Actually she is the world record holder for being the fastest henna artist! She did a henna crown on my bald head... I was a bit nervous as it was being done at her henna bar in the middle of Selfridges and I wasn’t sure if I would like it or not. But seeing how confident Pavan was and how friendly she is, I totally trusted her. She said she would make it pretty and use glitter and gems.. I was totally sold. I love being glammed up and I really want to learn how to do henna crowns so that I can do them for other ladies in my position, hopefully at the Oxford Maggie’s Centre and at home here.
It didn’t take long at all and I also had a bindhi applied. I am thrilled with it and so were the spectators that had gathered round. On the train home an elderly lady asked if I was going to a photo shoot. When I said no she said that I looked amazing and should have a photo shoot! Bless her.
The henna crown lasts about 10 days and then fades off. I can’t wait to give it a go myself sometime. For more information on Pavan and her work please go to her website; http://www.pavanonline.com/
Here are some pictures;
With Christmas coming there are so many people to see and many celebrations to be had. This weekend is crammed with fun with friends, starting on Friday. I can show my head off with pride.
Hoping everyone else is feeling the love, light and Christmas cheer.... XX
26. November 2014 14:19
I've been a bit lazy these last few days. I've been meaning to write and give an update but the weekend was manic to a degree and as usual I needed to catch up on things.
The big highlight of the weekend and well I guess for the end of this year was the Venetian Masquerade Charity Ball that my friends suggested to raise money for our favourite charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute.
Pete and I had quite a lot of input and helped out quite a bit by obtaining auction prizes and selling tickets and so on, so we felt quite nervous and hoped it would raise lots of money. Of course as a typical women, the other big thing was what to wear... Argh! For me I hoped that I would have hair but of course that wasn't to be so my thoughts were, do I go bald or wear a wig or...?
The ball was being held at Caswell House, and the food and drinks and everything supplied from lighting, to the fun photo booth, to the dj, band, photographer and table centre pieces and everything were donated or provided at cost! My friends even paid for an additional photographer for me as a surprise! (Thank you ladies!)
As yet I haven't seen any official photos but there are lots of snaps from friends...
We arrived to a wonderful champagne reception with everyone fully glammed up and wearing masks.. I arrived in a red dress, red shoes, red and gold feathery mask and... A red sparkly bob wig! It was funny because some people didn't recognise me! For me it was a big thing.. I didn't want to look silly but thought it was a great opportunity to really be a bit extreme...
I have to say everyone excelled themselves. Every single man and woman looked awesome, so dapper and beautiful.
I simply cannot believe how quickly the night went. We arrived at 7.30pm and left at 1am! I wasn't ready to leave! The food was simply divine, the auctioneer/MC was so funny and handled the night brilliantly.
A highlight of the night was how much the auction prizes went for! I cannot believe the generosity of everyone and it was so exciting!
The stand out moment was Pete’s speech..Everyone was left teary eyed and it really focused our minds as to why we were there. I couldn't look at him for fear of really blubbing and ruining my make up! I think his message got home though. His main point was how much love there was in the room... The circle of love. I really believe that everyone felt it.
On the night I was being updated as to how much we were making.. I couldn't believe that £2000 was made on raffle tickets alone! My numbers were called out.. I won a lovely Christmas wreath.. It's on my front door now.
Yesterday I got an email from Kate at Caswell House to say after all costs that the total raised was £20,560.00! Oh my goodness!!!!!! This is an outstanding amount to have raised..
I want to thank everyone who came, who donated, who supplied and contributed in every way. I know the money doesn't directly help me but I hope that it helps so many ladies and their families and I hope that they will never be in my shoes... Bring on a cure.. Please.
The following morning we headed over to Witney to see our friends and my mum for breakfast then I think we all started to feel very jaded. Pete and I and our lovely friends Alex and Lee spent the afternoon watching rugby and eating! We chilled and laughed and generally felt very grateful. Sunday was very much the same for us when our friends went home. It may seem like we spend a lot of time doing very little but that's exactly what we need sometimes... It's so nice to wind down and be wrapped up in a soft blanket and have my feet rubbed by my Bear... I love him so much.
This week has been going well. I have nothing much booked in so it's brilliant. I have been getting admin done, doing my daily rituals and really trying to get on a roll.
I've been exercising, doing yoga and eating very well. I still look very pale and have very puffy eyes. Nothing a bit of make up won't cure or a holiday..... He he... Which we have booked!
In true Pete fashion, he said that we have to keep living like we normally do. So despite having to travel abroad and go to hospital we should still book our trips away like we always do. We didn't want to hang around over the new year holiday period so have booked to go to warmer climes and get some vitamin d and bliss out. I was a bit
nervous booking a holiday but now I have done it I'm really excited! Whoop!
I have had confirmation from St Barts that they finally received my tumour sample and they have sent it to be tested. Hopefully this Friday or next Monday I should know if I'm eligible for the trial... Watch this space.
I have also had confirmation from the Churchill hospital in Oxford that I have an MRI and CT scan booked for next week, so the results should be with Prof Harris the following week when I see him. So that's good, I will at least know in detail what is going on and if the radiotherapy has worked. I have everything crossed. I have to say I feel better in myself. Still no cough, no headaches and now no shaking. That's got to be good news?!
I am definitely getting in the Christmas spirit. I have been doing all my shopping online...Sorry Mr Postman! This weekend I am going to drag Pete to buy a Christmas tree and then we can have our ritual of singing Christmas carols around the advent candle.... Bring on the mulled wine and sparkly lights! I have started writing our Christmas cards and I have drawn some Christmassy pictures... He he...
All in all this is a lovely week.
Bear and I are getting lots of sleep, eating really well and generally looking forward and loving to the max! We are spreading the love and feeling the love from all our friends and supporters... #circleoflove
Tomorrow I am being picked up by my sister, then spending a few days with my mum! We are going to finish the Christmas shopping and I get to be spoiled down in lovely Dorset by my mum....
Fun packed, love filled and generally looking forward to what’s coming next...
A massive light and love... XX
I would like to officially thank the following for their contributions and donations to making the charity ball a massive
My good friend Samantha, one of the Kitty's Climbers, who thought this idea up and grafted over the last 6 months,
To Kate and Steph at Caswell House for all your hard work and making it happen so smoothly.
To Amanda and Richard for letting us host the ball at your stunning venue.. Caswell House is gorgeous and I can't wait to be there again sometime!
To Jason and Nick from the Es Vive Hotel and Chic Villas in Ibiza for your generous auction prizes.
To Ivan and Harvey Nichols London for donating a wonderful cocktail masterclass
To the anonymous person who donated a signed arsenal shirt
To Nilam Patel for donating a spa day at her Dermaspa
To Marianna and Francesca at Soru Jewellery for donating the stunning rose quartz necklace
To Sarah Pooler and Ocean Beach Club Ibiza for donating a day/bed with cocktails
To all those who donated prizes they are featured on the ball programme attached...
Thank you to you all! You’re all amazing!
19. November 2014 17:07
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.I'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!