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.
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.
I haven’t been ignoring you but I have been having fun… again. Even amidst all the drama we have plans and I aim to keep hold of those for as long as I can.
Pete and I had planned to visit friends in Ireland this weekend and the booking had been in place for months. I was worried that things would clash but even if they did i would’ve moved them in order to visit our dear friends.
Pete and I had a long weekend in Cork and were treated like royalty. We laughed, danced, ate (a lot) and drank…Each day was different and on Sunday we drove to the beautiful Inchydoney beach and stayed at the beautiful spa there. Oh it was blissful. Yesterday we flew home and as ever reluctantly said goodbye to our wonderful friends.
Friday morning whilst at the airport over breakfast Pete and I got chatting about what to do next. I had already been in contact with Professor Vogl in Frankfurt regarding having TACE. It had been pencilled in for Wednesday 15th, tomorrow. I wanted Pete to email as he is German and to tell him it wouldn’t be feasible because of timings etc, but having spoken to my friends last week and also because I am acutely aware that I really need to get some treatment started Pete said we must go.
He checked with his work diary and made so many changes and that was it I started booking the Eurotunnel and hotels. Emails exchanged between Pete and Prof Vogl and we have agreed that I will be there tomorrow morning at 7am to see him and have treatment that same day.
Right… it’s all a whirlwind and whilst I have an hour before we leave I decided to update the blog.
I feel really weird right now. I have been contacting many clinics and having many email exchanges and I believe that whilst I can I should. The worry of logistics and money are always there and the upset this is causing Pete really worries me. I wish it was different but I have to try. Things will fall into place.
So this is how it stands. Today we leave and drive to Frankfurt. Tomorrow morning I have TACE then we drive to Belgium for an overnight before driving back to the Eurotunnel to get back to the UK.
Friday I have booked to see Dr Julian Kenyon on the referral of Dr Nesselhut to discuss Photodynamic therapy. We have heard a lot about and my pal Peter Trayhurn had good results in his lungs with this treatment. I think it is definitely worth a consultation. Julian actually said to get an appointment for Friday, on his day off to get this sorted. I called this morning and have booked for 11am in Twyford.
Next Monday I have an appointment at the Churchill hospital to have glomerular filtration rate which is apparently to see the functioning of my kidneys. Eh? I contacted the secretaries at the hospital who told me this in preparation for having the carboplatin chemo on the NHS. OK right. Well I will go for that even if I won’t be starting that imminently. I am booked and have signed the consent for carboplatin and gemcetibine chemo but I may postpone for a few weeks.
At the beginning of November I have DC therapy booked at Doc Nesselhuts and may also squeeze in more TACE with Prof Vogl AND even have insulin potentiation therapy with Dr Seibenhuner. I have emailed Dr Seibenhuners clinic to find out more but as yet haven’t had a reply.
Next Wednesday i am booked for the immunotherapy vaccine at the London Clinic and think it could be good to still give that a go.. Another hole in my arm but what the heck. On that same day I am also booked at another clinic in London to have a discussion about having Mebendazole prescribed.
It all sounds mad but maybe this combination could be good.
I am still waiting for a reply from St Barts but just now had an email from the secretary at the Churchill hospital who says she had a contact at the gamma knife department at St Barts who says they will be in contact soon. Not soon enough for my liking… get these buggers out of my head!
I feel actually a lot better in many ways but worse in others. Over the weekend my cough was annoying to say the least but then it turned into an actual infection on Sunday night. I actually feel better coughing up phlegm than I do just having a dry cough.
I feel less sketchy than in my head. I definitely felt like I had cognitive difficulties the week before but now I have clarity and can think of what I want to say. I am a little dazed with the steroids I take but I am managing them well. I will soon change the dose again as suggested by Dr Oliveros.
So that’s where we are. By the end of this week Pete and I will need to catch up on Strictly Come Dancing and The X factor and hopefully normality will resume… sort of. For Pete this is a nightmare. We are creatures of habit and nothing feels right. All we have is each other but with me having symptoms and feeling constantly emotional it is the hardest thing for him to deal.
Tempers flare and emotions pour… I find it hard not feel guilty and wish that every day could be different. I can’t and I refuse now to try to change that. I have to do this and try. I can still be canSer free and I just want to prove that.
I have taken the big job of contacting all my current clients that are booked in my diary and have told them honestly that i will not be working. My job is to get better and when I get more time at home I will return to exercise and more meditation. I long to feel well and eat better and live cleanly. I am not moaning about the food I have been eating recently. I feel nourished and actually have a huge appetite which I think is great. I put on 3 pounds over the weekend and I don’t care!
I have tried to balance my diet this morning by having a veggie smoothie, an alkalising lemon drink and bravo probiotics yoghurt with fruits. A good start I think!
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….
Better when I am not thinking about it….
It’s been an up and downy few days. Ever since I got back I have continued to have head aches and whilst I don’t think there is anything serious to worry about I had to mention them to my oncologist.
I also mentioned this cough of mine. Prof Harris doesn’t think there is anything sinister in the cough but as expected says I have to bring my CT scan forward AND have an MRI scan. Boo!
I absolutely hate having MRI scans, mainly because I feel claustrophobic in the noisy tube. I know it’s not rational but then maybe it isn’t the fact that i am having a scan that scares me.
I completely understand why i have to have an MRI, I just don’t relish it. Best to be sure though.
Saturday was a lovely day. I spent the day in London with my old school friend. We relaxed, had spa treatments and then went for a lovely lunch. Plans are already being made for the next trip…All the while I was there Pete slaved in the kitchen making foods that I can snack on and that are full of antioxidants. Love him.
I am struggling at the moment with letting you know how I am feeling. I feel confused. I feel so up and down that I don’t know myself. One moment I am feeling great, the next I feel rubbish, mostly I am feeling rubbish. I hate having nothing to report because I am so self involved and all consumed with myself. I want to be full of energy and loving life. And I do to some extent but when you have niggly little ailments such as headaches, they can really bring you down.
I go to bed with a headache, and then I wake up having visuals, the start of a migraine. I cannot explain it. I have back pain where I feel the headache is resonating from. It could be absolutely anything that’s causing it. Who knows what I am having pumped into my body? All I know is that once I have the scan results if it’s not the worst, then it can only get better.
I am better when I am not thinking about things. I am still struggling taking my meds and supps and I am really finding it hard to focus on the big things. They are more important to me than anything else. I just need to remember that.
I’ve had a lovely morning so far… I’ve done my morning rituals best I can whilst being away from home. Coffee enema, nebuliser, taken all meds and supps and more.
I am feeling pretty good. I am still avoiding green juices however the last few days I had an epiphany. In the place of juice I had been having bicarbonate of soda, lemon and olive oil water. Then one evening in St Tropez I felt overcome with nausea. Not very classy running to the toilets and throwing up!
Then I realised I bought a bottle of apple cider vinegar with me and had barely used it. Knowing the amazing benefits of Apple cider vinegar I have been having that with my meds and supps instead. So far so good. I don’t feel nauseas and I don’t have stomach upset… Maybe that’s what I needed. Apple cider vinegar is very alkalising and calming on the digestion.
I have continued however to have migraines. Now the neurotic part of me thinks, Oh God, could this be something more sinister. Then I think of all the triggers that could be setting them off and the list is extensive, caffeine, red wine, heat, sunshine, eye tiredness, stiff neck, lack of sleep, dairy products and more.. I can tick off all of those as possible factors to my head aches. So telling the neurotic me to back down then once I get home and realign my life then we shall see.
I made another batch of GcMAF yoghurt yesterday. Because of the heat here it’s process is complete much sooner than at home. This morning it looked like set yoghurt and smelt amazing. I am really loving this stuff. It’s in the fridge now and I will test it later with some berries.
Yesterday Pete and I decided to try something I had always wanted to do.. Paddle boarding. I was really nervous.. Lets face it I’m nervous about anything new. I wasn’t given any tips or assistance by the French guy renting out the boards and was pushed on my knees off into the sea.. Argh! It wasn’t great because he said be careful not to fall onto the rocks below! With that fact and the very wavy sea I was a bag of nerves. I whined and moaned as I tried to control the paddle board with my oar. Being panicky I failed to listen to Pete’s instructions and whilst drifting into a moored boat decided I would go back to shore. Poor old Pete was trying to help but I just didn’t get it. I watched a while from the shore then Pete came and got me. I had another go and this time I actually got up onto my feet and… Paddle boarded! Yay! However I wouldn’t say I was entirely happy. I really wanted to be able to jump off and on the board but because of the rocks was petrified…. Not ideal. I need a lake with no waves, tides or current. I need a shallow pool to jump off into….Where will I find that? I’m pleased I tried but now really want to master it.
This morning I had a message from a friend who has asked me to speak on a night her friend is hosting. She will be launching a calendar ‘inspirational women’ and wondered if I would like to say a few words. I will be announced as one of the inspiration speakers.. The calendar has been promoted on the Lorraine Kelly TV programme and Anne Diamond’s radio show. Gulp….. I know I should but I am such a wreck at speaking in front of anyone! I have been assured that it isn’t a big affair and my friend said I have a story to share…..
Thoughts have started to go back to home. I am already thinking about packing and the journey ahead of us. I have to say I am going to miss this place…it has been the longest three weeks of my life! It feels like so much has happened. When mum left on Tuesday it felt so quiet here. She was such a great support. I know I couldn’t have driven that beast of a car without her. She helped me clean, do washing and organise lots. (Yes I did cleaning and washing because I had friends arriving- a girl has to have standards you know!) it’s the first time I have spent two weeks away with her. It was lovely.
I am so pleased we invited many of our friends and family to stay. It would’ve been too big with just us here. It’s been so lovely having such happiness, laughter and joy surrounding us. There have been times when I felt frustrated and a bit lost but then spending all your time with people can be suffocating.. But how quickly that changes when they are gone.
I am looking forward to the autumn and the rest of the year ahead.
How is it looking for you?
The Venetian Masquerade Ball was a huuuge success!
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…?
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!
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.
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….
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.
Thank you to you all! You’re all amazing!
Dining with Davina and my favourite ladies….
I had a brilliant ending to my week. Friday ten of us; me, my mum, my sister and some of my nearest and dearest friends went to a charity event hosted by my all time favourite person (other than my Bear of course) Davina McCall! I went to it last year and decided it would be much better surrounded by a table full of loved ones. There were 400 people attending, all women, so you can well imagine the energy in the room!
As part of the event we all got to have photos taken with Davina and she is so friendly and wonderful. It’s like you have known her for years and that you are personal friends. I showed her the card she had sent me and thanked her for brightening my otherwise crappy day following my visit to St Barts re gamma knife. I’m always a little lost for words and I don’t want to be really needy but I would love to have time to really talk to her. I love the fact my friends say that I remind them of Davina with my mannerisms. I’ll take that huge compliment- thank you!
We had a wonderful 3 course meal and then I bought the photos that had been taken. Sitting at the table admiring them (well actually criticising my hair! I look like Mr Tumnus from Narnia with horns! I’m not complaining really I feel blessed at the moment that I have hair, it could be gone in a few weeks from radiotherapy) I felt two hands land on my shoulder, and a voice say; ‘Ah that’s a lovely picture!’ Turning, it was Davina looking over my shoulder. I was thrilled! I hopped up and she gave me a big hug and my friend took a quick snap on her phone.
I don’t know about you but Pete and I have a list on our board at home of people we would love to invite to the ultimate dinner party. My number one guest is Davina McCall. Naturally. I bet it would be a great night.
The fact is everyone on the table at the event on Friday love Davina and they all loved spending time together. I would love it to be our annual event. Any excuse to get dressed up and have a good girly catch up. We laughed, talked, danced and cried…. We are girls. They cry a lot!
I suffered for it yesterday. I would love to say it was probably from drinking alcohol, which I did indulge in but I simply didn’t sleep Friday night.
Of course I missed Pete. I chatted with my friend until 1.30am tucked up in bed but then a few hours later was awake with pains in my knees. This is new… What is going on? I took pain relief, a lot of it. And it didn’t touch the nagging aches. It’s so weird. One thing goes and another begins. I feel like a bloody hypochondriac.
We all stayed at the hotel and for breakfast bleary eyed faces appeared as we gathered for a right royal breakfast. I took advantage of it all! It’s odd though because I don’t taste things properly. I don’t have the same urges of what I really want to eat. I don’t have an on/off button. Days can be really exciting and full of clarity and others I can feel a mess. Take today. I woke up at 4am having had a day on the sofa yesterday. (Thank you Louise for getting me home and delivering me to my husband! Sorry for not spending time with you and your better half last night! I simply couldn’t manage moving let alone being any kind of decent company! Ha-ha!) I slept well up until then and then my mind was racing; in a good way.
I got up checked in online for our flights tomorrow and packed my suitcase. Then it all went wrong. I had the shakes, felt hugely emotional and can’t make out what I am meant to be doing?
I have halved the steroids and hope the things I am feeling will subside quickly! I want ‘me’ back. Luckily for me I was on pretty good form on Friday. I chatted for England, danced and laughed and stored those memories with my ladies in a big gold memory box in my mind. That’s a keeper I will cherish.
We have a big week ahead starting with an early morning flight to Frankfurt tomorrow morning. We are off to Dr Seibunhuner to see what infusions he may recommend then Prof Vogl on Tuesday for TACE number two. Then Day three off to Duderstadt for more bits and bobs then drive back to Frankfurt for our evening flight home on Thursday.
I have to say I am not hugely looking forward to it but needs must. If I was on better form then it would be all ok but it’s a struggle. I am in danger of forgetting things and I don’t want to keep moaning about feeling under the weather to Pete. This is so hard on him.
Look on the bright side. I do not have a cough, and at the moment no headaches or tingling! Yeha!
This morning it is beautiful outside. The sun is shining. It isn’t raining and nature was calling us. We went out to a Remembrance Sunday service and said the Lords prayer and sang the national anthem. It felt good. I feel blessed for the many amazing things in my life. I mustn’t lose sight of that.
Pete is cooking in the kitchen…although we have just had a disaster. We decided to have a hugely anti inflammatory juice to give us both a kick start. Turmeric, garlic, ginger and chilli were the ingredients or ammo! Sadly it ended in tears. Literally. We both vomited! Ha-ha. And now I stink of garlic and maybe a little bit of sick! Urgh!
Life’s about trying… and God knows Bear and I are doing a lot of that!
Today was a real treat. For a long time I have been in contact with a lovely lady who contacted me through the blog. She is kind and helpful and up until now just hasn’t found time to meet. We don’t live a million miles from each other so for the first time we met over lunch. A friend of friend came too and it was so refreshing to talk openly about canSer. We are all on the same path, slightly different circumstances and stages and canSers but we are the same. We are driven, we are doing similar treatments and going to lengths many others do but thousands don’t. We have all been to see Doctor Nesselhut, are experiencing different drugs and have all had horrible stories to tell about how awful doctors have spoken to us because we don’t conform to their ideas. But then became amazed at results and the extension of life.
I felt inspired to keep trying. I was given advice on my trip to Switzerland for GcMAF and what to expect. It’s very helpful speaking to someone who has already been.
I have been ensured the Professor at GcMAF is great and could even help with looking at my scans. Well that would be nice!
We were gassing for hours before I knew it three hours had passed. How time flies!
Once back I had to get ready to travel to Switzerland. Kitty knows something is up. She plopped herself on my lap for a cuddle. Bless her. Luckily for me Kitty has a kind ‘aunty’ who takes care of her….