Almost at the end of my birthday celebrations.. Just one more weekend.

I’m sitting here in what feels like summer heat but no sunshine. To be expected in England. But I don’t mind. I have the last of my birthday celebrations this weekend when I am being taken to Cornwall by my hubby, back to The Scarlet hotel. I am really excited!

To be honest I am all ‘birthdayed’ out and am looking forward to normality… Hmmm if that exists!

I have been trying to get back to a routine and have to admit sleep is returning back to normal.. Ye-ha! I love my bed!

I am a little frustrated as I am still waiting to hear back from the lab in Greece and Dr Nesselhut to book an appointment for my next visit. I am trying to stay positive and not let fear get the better of me. My next scans are confirmed for the end of July. I keep thinking maybe I should go and have a TACE session with Prof Vogl soon just so I am having something that I know works for me. But I am reminded again that one maybe not be very helpful.

When will I ever learn patience? I am not sure that is something a canSer survivor has. If I sat waiting around then I am sure I would not be here.

Yesterday I had training on how to edit my new website. It isn’t quite ready to launch yet but hopefully once I have updated all the information then people will find it really helpful. Lots of work to be done……that and knitting. I have abandoned the knitting recently but babies are going to be born soon and I haven’t made them a blanket! Ha ha!

Keep an eye out for some lovely pictures of this weekend in Cornwall… I’ll post them next week.

Cya!

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

The pursuit of happiness….

I’m in the month of turning forty. I have always been a greedy girl and have stretched my birthday celebrations out for as a long as possible, usually a week, but as this year is a milestone and one that I was doubtful I’d achieve, I have made it extra long. So celebrations started last week on holiday. My birthday isn’t for another week and I will be continuing the celebrations right until the end of this month!

We have just returned from a week holiday with special friends in Ibiza. We bid on an auction prize at our charity ball to stay in a stunning villa overlooking San Antonio bay, Ibiza. Not just any old villa. This villa had an infinity pool, with modern facilities including a projector room and DJ decks so we could have own party. Lucky for us- we also had our very own resident DJ! Thanks Brendan!

We knew it was going to memorable and my special birthday treat. The friends that came also thoroughly enjoyed it and the week was filled with belly laughter, love, sunsets, more love and stunning views all wrapped up in a week of relaxation in the sun and partying until all hours of the morning. I am as brown as can be and so tired! But as content as a kitten. We met with friends that had organised and donated the prize and couldn’t feel any more gratitude than we did and still do.

Sometimes it’s so overwhelming with the generosity of others. We are so touched but so very thankful. I’m such a lucky girl. And I never forget it.

Having a week away does mean I tend to forgo my usual routine of taking tablets and doing my rituals. But I believe it’s good to mix things up and keep the body guessing. Right now though I am wishing I had had more sleep as I am struggling. I don’t know how my friends are coping as they are all back at work. Pete was up at 5am and off to the gym to continue on his quest for wellness too.

I don’t have regrets, well maybe a few, but I am dealing with those on my own and that’s a whole other healing journey. But it was so good not to have to think about canSer every second of the day. I didn’t have time to, amongst all the laughter and jokes. It is so important to be surrounded by the right people. People that support you on so many levels and have respect for each and every one of us.

Since coming home, the love and support from that group hasn’t ceased. We are missing each other terribly and the puns and jokes continue. I looked in the mirror yesterday and despite my skin looking old, dehydrated and creased from too much sun (and almost being forty!) I spotted a new laughter line around my mouth. This made me smile. How much smiling must have I been doing for this to be so apparent in just one week?

I don’t ever really get the holiday blues as I love being home so much and this was no different. On our return my kitty cat was actually quite welcoming, running to the gate and crying out as soon as we reversed on the driveway. Then we scanned the garden to see how much had bloomed in just seven days. I relished in unpacking and watering the plants whilst Pete washed the cars and I begun to do many loads of clothes washing. I put clean sheets on our heavenly bed and knew it was going to be the best night’s sleep EVER!

Yesterday the sun shone and we decided the holiday hadn’t yet ended and we spent the afternoon sunbathing and chilling to music. My gratitude levels have gone through the roof and we had a little dance in the garden as if we were still by the pool at the villa with our friends. It’s not hard to understand why I love my life so much.

As I said the fortieth birthday celebrations continue and the forthcoming weeks I have a lot planned and lots of friends and family to celebrate with. I am feeling a little overwhelmed and right now think I may have over egged it! But I am sure things will settle shortly.

Whilst away I checked emails and waited to receive an email from Dr Nesselhut regarding my next treatment round. I did get an email but as expected I am now trying to drill down and actually book dates and proceed. This always distracts me but it is essential.

I think I must be worried. I have been having very vivid dreams and they have been featuring new tumours in random places and not being able to treat them. I am very concerned about not making it to my fortieth birthday, which is only a week away. I have had it in my head that I somehow wouldn’t make and everything seems so surreal. I don’t know why, but as I am feeling so well surely this is unlikely. I guess in the back of my mind is, do I have confidence in nivolumab yet? That last scan really bothered me and with all the positive that was in it, I felt it was tainted with new tumours in my right lung. Bloody canSer….

So this morning I am back to it; meditation, yoga, not so much exercise sadly, (I didn’t feel like it) heat and air and more… I’d like to say I feel energised but I wonder if I am actually missing my Bear. I feel a bit low and extremely tired which is mad when I slept for more than 9 hours last night!

On the night of our return we decided to watch a movie called ‘Hector and his pursuit of happiness’. If you haven’t seen it I’d highly recommend it. It’s very thought provoking and humorous and had us asking the question what makes you happy? It felt quite apt because we had just returned from a place of beauty surrounded with happiness and laughter and we felt quite scared of the future- of what is around the corner. The biggest thing for me is fear stops me from being happy. As Pete pointed out we are all going to die one day, it’s just a matter of when, but I haven’t come to terms with the fear of dying…not really. And that makes me afraid. It stops me from being happy.

Then weirdly enough we awoke on Sunday and watched the news on BBC 1. They had a feature about a guy who written a book on happiness. I mean what are chances of that? We both looked at each other and thought, is the Universe or God trying to tell us something? Teach us?

We have both been laid heavy with worries prior to the holiday and those feelings will inevitably creep back in once life returns to ‘normal’. It really struck a chord with us and now we are on the pursuit of finding out what makes us and others happy. Not a bad subject to study and research…

I am rambling now and I feel a little light headed. There is so much to think about but I don’t want to get embroiled in meaningless thoughts… I have too much fun and happiness to have.

It’s good to be back…

May the gratitude continue…..Light and Love. X

I’m a brave little soldier, my Mum told me so…..

How do I start?

Tuesday I went to St Barts and was given the low down on the gamma knife treatment that I was having the following day, Wednesday. I was given in full details of what to expect. I think it is to ensure you prepare for the worst. All it did for me was make me cry and want to run for the hills!

The extremes of how bad things were going to feel, such as injections, the head frame and so on. Seeing the machine and where my head would be screwed to the bed did nothing but fill me with fear. Fear of what? They weren’t going to hurt me.. Well this is typical ‘me’. Fear of not being able to move for up to two hours! Argh!

I did my usual of coming home and off loading onto Pete and spent the whole evening in bits. We were going to be getting up at 4am because they wanted to start treatment at hospital at 7.30am. Ok we don’t live that far away but if we aren’t sleeping and we are worried about getting there on time then it’s best just to get on with it. Well we both woke up at about 2am… standard worrying time.

Pete had prepared a bag of things I would need for the day plus some food and drink and a sick bag in the car… I am not sure if he thought I would need it for the journey home because the aftercare advice mentioned nausea and vomiting. Well it didn’t get used on the way home. It got used on the way there. So much anxiety meant that last night’s dinner came up (weird that it hadn’t digested after ten hours but that’s another discussion) I was fine after I had relieved myself of all the wretching.

On arriving at St Barts we met the lovely clinical nurse Liz, who had been taking care of me from the start. I think in a very clever tactic they got me straight in at 7.30am. I was first, between me and one other lady. I walked into a room with five other people all waiting for me and a chair. Gulp. I sat down and was introduced. I have no idea of their names… I was too busy having a quiet nervous breakdown. One lady put the head frame on my head and stood and held it there whilst a doctor went round and gave me four injections of local anaesthetic of where the ‘pins’ were going to enter my head to keep the frame still and secure.

I was warned the injections would feel like bee stings. Yes they hurt but only for a few seconds. I didn’t expect them to bleed but I was being dabbed all the while. Then came the screw drivers! Yes screw drivers.. Pins, my foot.. They screwed the head frame on and what I felt was pressure as they got tighter. Liz, the nurse held my hand and stroked me the whole time. Apparently that was the worst bit over I was asked continually if I was ok. I think it was because I physically shaking and my jaw was chattering. Not a good look. ..Then they took me straight in for the MRI scan to get really clear images so that they could plan the gamma knife treatment. I was given 3 batches of contrast dye. This is so they could see absolutely everything, so if there was any other tumour trying to make its way they would notice it. Luckily, they advised me there was only one tiny tumour in the left frontal lobe. No extra surprises… that’s what I like.

I hate MRI’s at the best of times but this time I had a head frame on as well some plastic attachments. It was only for twenty minutes and all I kept thinking is this is going to be a doddle compared to the gamma knife. Never will MRI’s be scary. So that’s one positive so far.

So far so good. Of the things I had been advised already I had completed two of the major events and all was fine and dandy. I didn’t experience any pain in my head from the frame as I was well and truly numbed.

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Then we were transferred to the gamma knife centre where I sat for about four hours waiting for Dr Plowman to come down and see the plan his staff had worked out for me. That was ok as I had Pete with me and I was given plenty of tea and yummy snacks. Time flies by really when you are in a daze and everything seems so surreal. Having so much adrenalin running around the body and also feeling so tired from lack of sleep can also make one feel bizarre.

Eventually I saw the jolly doctor who I really like, mainly because he calls me, ‘young lady’. Haha.

Pete spent the day cracking jokes.. I am not sure if the staff found them funny or if they heard them all before but I thought it was hilarious. He didn’t think Liz the nurse liked him because when I was taken into the MRI room when I was having the contrast injected he stood outside the door taking my photo and doing little dances and smiling. She told him to sit down a number of times. Haha. Then he accidentally started playing rap music in the waiting area! Haha… Oh I am laughing right now.

Here’s a few jokes to wet your whistle;

‘She’s not in the right ‘frame’ of mind’

‘She won’t be bolting anywhere!’

Tehehehe….

Once the doc left I was taken into the gamma knife room and laid on the table where they screwed my head to it so I really couldn’t move. They said I was allowed to scratch my face and cough but to be really careful because if I touched the machine it would take several hours for it to be corrected and ready to use. Great. Being told stuff like that just makes it worse! I was not going to cough or scratch my face no matter what! The good thing about the gamma knife machine is that it is larger than the MRI. It isn’t right in your face so I felt less claustrophic and they don’t put you in it very far either. Luckily for me also the treatment time was reduced to about 45 minutes as Ii only had the one tumour and it was easy to get to. I was delighted with this news. They also asked me if I wanted to play my own CD. I listened to chilled out Ibiza tunes and worked out how long each track should be so kind of knew when I was going to be finished. It totally chilled me out and I actually dozed off for a short while. That part of the treatment was the easiest. I didn’t feel a thing. I didn’t get stiff or achy luckily and I was so happy that it was all over. As soon as they got me up they removed the head frame. This was really weird. The screw drivers came out again and the noise as they undid them was horrendous! Little oozing holes dripped, which is to be expected and it felt really odd as the pressure increased not decreased as they released the frame.

This is when the pain starts. I rested for a few hours and they gave me pain relief, whilst the head sorted itself out.

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I was discharged not long after having lunch and then came home with my Bear. My head is sore where the entry wounds are and I have been advised not to get my head wet for a few days. I have two little plasters on my forehead( which makes me think I have little horns growing!) and they left the ones at the back of my head open. They are all oozing ‘stuff’ and blood. The back one has bled the most and it’s a tad uncomfortable to sleep on them.

I have been warned I could get black eyes and may have tingly from nerve damage on the head along with a whole host of other side effects that radiation can cause. Anything goes really. For now I am trying not to express myself too much as raising my eyebrows really hurts! Haha! I’m expressionless….

I am so proud of myself. I didn’t cry once whilst there. I wanted to run away that morning but I am so pleased it was no way near as bad as the nurse had prepared me for. It must be hard giving advice to patients when you have never felt it yourself.

Apart from the dramas in the beginning this whole experience has been amazing. From what I can gather not many people get it done on the NHS. I am thrilled to have had it done and they have advised me that if I get any more tumours I can have it done over and over again unlike whole brain radiotherapy. They seem to think metastases go completely when having gamma knife. Other kinds of tumours can return.
I reckon this brain has got it sorted, but what a thrill to have met such lovely staff. (Pete was chuffed to bits to meet an actual bonafide neurosurgeon yesterday- he was doing my treatment for me!)

Mum messaged me the night before and told me I am a ‘brave little soldier’…. I believe I was.

Today I am under strict instructions from Pete not to do anything and just relax, because even though I can’t see any wounds or scars it doesn’t mean I am not healing after having had surgery. I have tried but I feel pretty good apart from a bit of a sore head. I have been out for a short walk, done the hoovering, and floor steaming, a bit of washing, hanging it on the line and written this.. Oh and have been having a little window shop online too. Ooops. I’ll lay of the exercise for today and do a bit of reading and knitting…

I cannot believe the support I have received from my friends, family and followers. Thank you so much, it really helps. I even received some beautiful flowers by post this morning… I am being spoiled.

Light and Love. X