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I made it to forty! Woohoo!

It’s been and gone already! Can you believe I made it to forty? I have to admit I doubted I would actually make this birthday when I was told almost three years ago that I had a limited life expectancy. I put my fortieth birthday as a goal and when the brain tumours arrived at the end of last year I have to admit I had a sinking feeling. But that’s life and all the excitement it gives.. You never know what’s going to happen next and for me things have so far turned out fine. Milking the celebrations we were surrounded by close friends at the weekend and we partied the day and night away at home having a BBQ. Despite the aftermath of cleaning and washing it was worth it all…. absolutely hilarious. Monday was my actual birthday and my Bear took the day off work and we mooched in London.

Never forgetting about having a terminal disease I also coordinated visiting the Biolab in London for some bloods to be taken. Since I saw Dr Nesselhut last he has had a meeting with the head guy from RGCC, the company does that all the blood tests for chemosensitvity. Both men decided that they think they may be able to create an antigen to use on me for the specific canSer that I have. This means completely personalised treatment. I don’t really know much else. As expected I have been kept in the dark despite asking over and over by telephone and email what is happening, what do I need to do and when can I have it done? Luckily I did find out that I needed to have blood drawn to be sent to their lab in Greece. So this is why I thought I would get it done on Monday, my birthday. The blood is now winging its way to Greece and I await some sort of confirmation what is going to happen next, however I feel that I will calling for the umpteenth time next week. I am concerned I am not having enough treatment and fear that my next scan results may not be brilliant.

I am aware I have had some indulgence recently but life should be lived and I am not about to shy away from a good party when I know I bloody well deserve it! I have dates for my next MRI and CT scans- the end of July… can you believe that will be three months from my gamma knife procedure? Back to my birthday, (well it is all about me!)Pete and I had a lovely day walking in the park, eating tasty food, shopping (naturally!) and then headed home for some cuddles and much needed good night’s sleep. This forty lark isn’t so bad. I don’t feel forty. I hopefully don’t look forty and I certainly don’t feel I am coming to the end. It’s so bizarre how the head rules.

I know I can conquer this…. So right now I am at my mum’s in not so sunny Poole, continuing the celebrations further. I miss my Bear but he has to work, so instead us girls; me, mum and my sister will make the most of it. They have something up their sleeves for me over the next few days. How exciting! I have never felt so loved and spoilt from all the lovely gifts and good wishes as I have done this week. I really cannot be happier that I am still here to see this age. And as much as I know my Bear will say, he never had any doubts about it. I did not. I now know I can do anything I just have to believe it. Research and trials are moving fast and we just have to keep going until they can keep us alive indefinitely. I bid you all a ‘speak later ‘until I am settled back at home next week. Life is going to settle down just briefly before the next birthday celebration in a few weekends time…This is one birthday that I will never forget.

Thank you one and all… (Bear I’m missing you… Mwah!) A big fortieth Light and Love. Claire XX

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A proper update….

I haven’t been ignoring you. I usually say it’s because I have been having too much fun but the truth be known these past days have been hard and I meant to let you know what I have been doing but I just haven’t felt up to it.

Most days I am walking around in haze. The headaches have been hurting; the cognitive loss has been hard but today is a good day. I seem to have all my faculties and I am right now feeling good. Well sort of…

So what’s been happening over the past few weeks?

I think I will work backwards. I finally had a meeting at St Bart’s where I was told I had been accepted for gamma knife. But then on Thursday I was called by Doctor Oliveros to be told that she had received a letter from Dr Plummer and he had suggested that right now I should have whole brain radiation. I was confused. I said I had received an appointment to go down the very next day. She said to go to would proceed with the whole brain radiation. Right… I hate being messed about.

We headed to London in pursuit of gamma knife. We waited and the registrar we saw had no notes on my ‘story’. The problem is when asked any questions I am getting to the point of not being able to answer. It sounds so weird but I am losing all ability to answer questions. It makes me anxious and I need Pete by my side. I have good and bad days. That day was a bad day.

Luckily Pete did what he could and we pleaded with them to give us the gamma knife. The reason Dr Plummer suggested that I have whole brain radiation is because there are more than likely going to be more than four tumours. I guess I was hoping I could have it all in one go and it would simple, one visit all done. Pete had suggested that having whole brain would be better. I guess the down side is that I have had to wait for so long. Can you believe they only have one multidisciplinary meeting a month?

The other good thing was that I got to meet Dr Plummer and he now knows who I am. The registrar got him into the room and he discussed my case with me. Pete was very patient and really tried to express his concern but it was ok. I took it on the chin. I was gutted, mainly to have waited for so long. I had the MRI on the 1st and it was now the 24th every day the headaches getting worse.

The day before I went down to the Care Oncology Clinic in Harley Street. There I discussed details of being on Metformin, Mebendazole and Atorvastatin. It was a bit weird. I have been accepted onto their plan and will be given the prescription. I am going to take it in the hope it helps me further. They actually work with Professor Dalgliesh and Professor Stebbing so they are in good company.The problem is that when I returned home I couldn’t tell Pete what I had happened. I just knew it was good!

I have also been to the hospital for five hours of treatment. I had to have globemular filtration rate. This is preparation for having carboplatin, that I intend on having possibly. I had to have my bloods taken every hour for five hours….. Oh dear god.

Before this it’s all a bit of blur. I have spent almost every day on the sofa, wandering around the house and watching my house get dustier. I’ve been lost and sad but every night Pete comes home to cheer me up. That’s the only time I am really happy. Until now. I’m having a good day.

The weekends have been great. I had my best friend Lizzy and her hubby turn up for Sunday lunch. Sadly that was a bad day and I wasn’t feeling my best but being my best friend she sat with me until I felt better.

This weekend was amazing. It was Pete’s business 25th birthday celebrations. We had planned it for months so I had no intention of not going. It was being held on a boat on the Embankment in a posh venue. I wasn’t feeling hundred per cent but having people around me helps. Plus I also find a spot of retail therapy really makes me happy! Nothing new there except I make decisions quicker. I really know what I want now!

I was a bit anxious about being left on my own without Pete as I didn’t want to trip over my words or forget something I wanted to say but thank fully I held my own and did ok.

It was an emotional night and we invited some of our friends and old staff and new staff and clients. We had a blast. Everyone was concerned about me but I wanted it to be about Pete and his achievement. It was nice seeing everyone and having plenty of cuddles.

 

 

So I have today been trying to get hold of the hospital here and thankfully have got through. It pays off to be nice to people. I am going to see Professor Harris tomorrow for a clinic appointment but have also been told that I can go to have my mask fitted in radiotherapy. I have to wear a mask over my face. Luckily the treatment is only ever about 3 minutes long so I won’t feel claustraphobic.

 

On Friday I was lucky enough to come home to a card from Davina McCall! I know who organised it for me but what a day to get it…. It really perked me up.

 

A few weeks ago on the day that I was going for my MRI I had to do my final test for the health coaching course I had been doing all year. I sadly failed by one point… I couldn’t believe it and was so gutted. I decided to not worry about it but felt absolutely mortified that I had done the course and failed it. Well they let me do it again…. and I passed! Yeha!

I said I had an appointment with Dr Kenyon from The Dove Clinic recently well I had to cancel it. I couldn’t drive, obviously and I just have to put things on the wayside. I will deal with it when my head is clearer…

My chesty cough is still there. I have got a cold though and without too much detail I am bringing a lot of yellow stuff out of my nostrils. It’s hard to wonder if that what is causing my cough. Prof Vogl said that it would clear up in two weeks. That’s about now… The thing is I coughed so hard yesterday that I have started having those pains where I can’t move my side, just like before. It’s not what I need right now, and I hope it goes by tomorrow… Please…

So in one sense I feel like I am getting somewhere and the next I am not. It’s been a long month.
I really thought I would be into the treatment by now. Thank fully Prof Vogl has been done. I am returning in a few weeks for my next visit. I will also be having treatment from Dr Nesselhut and I may be seeing Dr Seibenhuner. Let’s get charged up with whatever I can have!

I am so pleased I cancelled my clients. This time I don’t feel guilty about having had to. I just needed to.

I just want Pete to know how thankful I am to have him. He has been doing everything for me. I am like a lost sheep right now but he gives me all the love I can ever need. Give me my brain back and I will fine. I can then deal with my chest and lungs.

I want to thank everyone for the support they have been giving me. I feel overwhelmed every day.

Thank you will never be enough…….XX

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The fact is ‘things’ don’t make you happy…

My trip to Tooting was a doddle on the train last Thursday. I arrived nice and early and the lady who was meeting me had everything prepared. I packed my bag and got straight back on my way home again. Simplezzzz.

I started that evening with the first of three interleukin 2 jabs. I found a new little area on my tummy to inject and in it went. That night I started to feel headachy and flu like again. I didn’t sleep at all. I am so surprised that 3ml of the stuff has such an effect on me. I am not complaining!

The next day I did the second one and I thought I definitely won’t feel rough again… wrong! This time I took paracetemol to alleviate the symptoms and slept much better.

Since then I have also started on the scorpion venom… I know it sounds hilarious. I take 1ml under the tongue and hold it there for five minutes. Seems fine so far. It’s too early to know if it is actually doing anything. I am repeating it three times throughout the day.

Saturday was an exciting day… For the last fifteen years Peter has wanted to go to the Air Tattoo at RAF Fairford. I booked it for his birthday treat and invited some friends up from London. The weather forecast wasn’t great but we had everything crossed.

The day went like a dream. We watched the whole display in an enclosure with brunch included and the Pimms flowed. The sun shone and we were so happy we could see the aircrafts making their beautiful patterns in the sky. For us the Red Arrows are always the best… well they are British after all! Pete had a small tear… Bless him. We both said a big thank you to the Universe for the day being so lovely.

 

Yesterday we said goodbye to our friends and headed down to Brighton to our boat. Sadly we had to pack up our belongings on her as she is being sold. It isn’t complete yet but hopefully it will go through. Reluctantly we are selling because we need the funds for more treatment.  Pete was devastated and it was actually very emotional being there and seeing how wonderful she is. She has looked after us through some turbulent times and we have laughed, danced, sang, had barbeques, cuddled up and cried on her in the last four years. She has been there the whole time I have been diagnosed. It’s the only place Pete sleeps like a baby in her womb-like cabin. It’s like she has a soul and we felt like we were betraying her. I felt terrible. I have never adapted to boating like Pete so for me I thought it wouldn’t be so hard to let her go but actually I felt such sadness and guilt combined.  I hate the fact that Pete has to let go of something he loves so much. But he says he loves me more and will do anything for me.

The fact is ‘things’ don’t make you happy. We have many memories- good and bad of Waterloo Sunset but ultimately we have more freedom and more new experiences ahead of us. With great sadness we left her behind all ready for new adventures with someone who cares as much as we do, hopefully.

Last evening was the World Cup football final; Germany against Argentina. As you know we are huge German fans. I had crossed everything in the hope that they would win just so that Pete’s day would improve ever so slightly…. And they did! Yay! There was a least a little smile on the Bears face before bed.

 

 

Today is Bears birthday and I can’t wait for him to come home and open his presents and have a wonderful evening together. He may be older but he gets better with age and more loving and caring, if that is at all possible. Happy Birthday My One! XXX

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Seriously, it was the best birthday ever!

I know I say I have had the most love filled awesome time ever, probably almost every Monday after every weekend. And I am blessed with having so many great experiences and times with my hubby and friends and family BUT this weekend was the best of the best… The best one ever! (oh, oh, oh…One Direction song springs to mind!)

It was my official birthday weekend and we spent two nights in Mawgan Porth, Cornwall at an exclusive hotel called The Scarlet Hotel. http://www.scarlethotel.co.uk/

There aren’t enough words to describe the utter beauty, the views, the service, and how we were totally blessed with the weather. England is the best place to be in the world when we have great weather.

Our room overlooked the bay where the surf was crashing on the shore and we watched dogs and their owners, surfer’s bobbing out in the waves and children running and screaming with joy.  We joined them in the screaming and the running and tested the water temperature… Cold but invigorating.

From the moment we arrived we just felt like we must be in heaven. We were full to the brim with happiness and love and gratefulness. We ate at top celebrity chef restaurants and mooched about all day. Everyone was friendly and seemed to be so very happy too….

We slept with our door open at night to hear the waves crashing and it took me a night to realise that that’s just how loud waves are and that there wasn’t a storm.

Every morning we were woken by a knock at the door and greeted with a fresh pot of green tea. Seriously I cannot express just how brilliant it was. Pete and I laughed so much and looked at the scenery in awe. We played like children with our new purchase, a boogie board, and squealed with laughter when the waves caught us and we skimmed to shore (losing shorts and biking bottoms on the way!)

 

Leaving yesterday was sad but we still had a lot to see. On our way, we went to another beautiful surfing bay and then to Port Isaac where the well known programme Doc Martin is filmed. This tiny fishing village was buzzing. We sought after Cornish delights then climbed the steep hills to start our journey home.

God really was looking out for us as we came across two accidents on our route which we just missed each time. Thank you, thank you, thank you!

Once home and unpacked and tucked up in our soft comfy clothes we tucked into our tasty delights; Cornish pasty followed by Saffron cake with Cornish clotted cream and a bottle of pink fizz bought for me by my lovely client. A brilliant end to my 39th birthday. I feel my 40th may be hard to beat but I sure know that I am going to be fighting fit to get there in a years’ time… I have a big week ahead of me.

 

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Another year older….

So I’m a year older… I’m officially 38 years old. And I feel it. I am getting too old for partying! Ha ha.

Friday evening I felt a little unsure as to what the weekend would hold for me. I knew my friend was coming to stay as we celebrate our birthdays together, being that her birthday is two days after mine. I had left the organising of the weekend in Pete’s hands but as nothing had been said figured that we would just be having a ‘quiet one’. Pete had said that he would be surprising me… I thought the surprise would be there was no surprise!

Saturday morning came and I had a lovely little brekkie of boiled eggs and dipping soldiers. I had decided that my juicing could go a miss for a few days whilst I enjoyed my birthday.

Around mid morn8ing my friends arrived then some other friends to watch the Lions play rugby. Then….. more people started arriving…. Friends who I didn’t know would be coming all the way from Brighton and some I haven’t seen for a while! It was lovely… not taking much notice of what they were wearing I hadn’t considered why they were all dressed scruffily. I thought that’s just how they dressed. The day had plenty of banter then we were told that we would be doing some activities and would get dirty… Uh oh. I wondered if Pete knew me at all! I hate being embarrassed, put under pressure to do things and generally be involved in group activities. I did grumble quite a bit but that’s just nerves. The afternoon was filled with archery, shooting and pilot racing! 12 of us all had a go and despite the weather trying to make it terrible it was actually a good afternoon and yet another surprise for us all! We got home and changed to party the night away. Pete and his sous chef made paella which was delicious and then birthday cake…another surprise!

A long and very funny day… I didn’t get to bed til 4am!

Yesterday was a bit of a struggle and I slept for a lot of it as soon as I had cleaned the house and made bacon butties for the masses. I have a smile on my face even if today I am still not feeling myself. All the excitement and birthday drinks me thinks! (3 magnums of champagne and cocktails!) I was spoilt rotten and bought some lovely thoughtful gifts by everyone. J

I can’t wait for bed yet again… ha ha! But what a wonderful birthday and so much trouble Pete went to keep it a secret from me. He’s a good man.

I’m working today and on my penultimate day of chemo. All has been going swimmingly…..Clinic tomorrow to discuss my next move.