12 Months, 4 Seasons, 3 Losses, 1 Transplant and 1,000 Reasons to Smile...

12 Months, 4 Seasons, 3 Losses, 1 Transplant and 1,000 Reasons to Smile

Well hello old friends. It has been over a year since I posted on this blog. This was generally due to IT problems as well as medical intervention.
So where do I start? It's been a hell of a year. I've had ups and downs, turnarounds and complete stops.
Let's start at the beginning.....
The last time I posted I was waiting to be ferried to London for what I thought was a last shot at trying to beat this complex and confusing disease.
It was a time of hope, fear and acceptance.
I left my gorgeous family not knowing if I'd see them again, to be honest I almost didn't. The treatment was gruelling and I was surprised by the impacts both physically and mentally. After months of recuperation I started to feel more human.
By this time both of my eyes were suffering with severe cataracts so I found myself, once again, unable to drive and frustrated that I couldn't see.
Just prior to the transplant I was medically retired. It was one week before the transplant and allowed me to enter the process with a clear mind.
It was also a time of changes around my home so I had mini projects to keep me occupied. My garden was completely transformed to a wooden delight that I can enjoy without fear of injury. It completed our summer being able to enjoy the outside as well as Jake and his friends having somewhere to chat, eat pizza and watch the night sky.
I watched both children graduate from their schools. Jake into college and Boo into secondary school. They make me so proud. The life they live has made them kind considerate and loving. Don't get me wrong, they both have their moments but the good times shine bright through what can be a medical fog.

Summer soon turned to Autumn and me and my girls, Roxy and Tika, watched the leaves turn then fall. My treatment continued and I unfortunately had complications which meant I was, again, in and out of hospital.
During this time my hair started to grow back, my cheekbones reappeared and probably looked healthier than I did before I fell ill. The truth was I'd started chemotherapy which recently turned to daily treatment of the drug. I've kept my hair but my eyebrows have given up the ghost. In an effort to keep motivated I rejoined my local slimming world and dyed my hair white, yes white.....

Autumn gave way or should I say laid down for winter and the house was brightly decorated for Christmas.  During this time I lost two wonderful women in my life.  The first was a friend who was a total inspiration, full of warmth, humour and love. The other was my grandmother. A key figure in my life and I miss her and her influence in my world. At this point, surrounded by glitter and fairy lights, I hit rock bottom. It was then that I heard of another loss to HUVS which left me shocked to the core.
I needed help to get through this and had to admit defeat in order to get it.  My new Dr was amazing and she has supported me from that moment.
Christmas charged in and was gone without even a wave and before we knew it the New Year had passed.
2016 started as it continued and I was thrust into appointment after appointment. To the point that I recently told the Professor I was 'appointment fatigued.'
My eyes, by this time, had been surgically fixed and I could drive again...freedom!!!!!!! It was amazing to be able to just get in my car and go.
As we career to Easter at breakneck speed I've once gain be asked to consider a new treatment to sit alongside the chemo.
It's now that I find myself with a more positive view of things. We know the days are getting longer, warmer and carefree. The promise of spring moving into summer allows me to consider rose-tinted days enjoying the company of family and friends.
With this in mind I told my mum to do something last week as I drove her down a country road in the speckled sun filtering through the trees. She placed her outstretched hand into the open air and "caught the breeze". She laughed and smiled at me. She understood.....
For all we've been through we still have hope and clasp the sun's rays.
Til next time

Trees, Tears, Tenacity, Trafford Ward and the 2015 Transplant.



It's been a hell of a long since I last posted on the blog.
Tonight I find myself sitting on my hospital bed looking out at the dark shadows from behind my mobile phone's brightly lit screen like a timid night creature.

Tonight is my third one in with two more to go. The time slips by in here where hours and days blur and shade into one. Forget clocks, you separate your day into mealtime segments. So here I am in the middle of the night listening to Ed Sheeran lighting up the corner Bay 3 like a little beacon.
It is exactly 8 sleeps til the man in his red suit appears and delivers all the childrens wishes. Laying here I reflect on my own childhood Christmases. With my eyes closed it is like watching an old reel movie, slightly faded, full of seventies fashion, smiles, family and love. The extended holidays when shops didnt open until 2nd January after closing at midday on Christmas Eve. The enforced break meant all of my memories have at least 15 people round the table. On this ward there will be lonely individuals who will spend Christmas here. These patients, in fact, probably see more people than they've seen for years over the festive period. I know all the staff to make their day as enjoyable as they can. This got me thinking, never good I know. If you know a person who will be on their own why not knock on their door or even leave a note to remind them they're not forgotten.
So what's been going on in our tops turvy world.....gosh so much. Autumn dawdled in, seemed to overstay it's welcome before unconvincingly shuffling off to the sidelines. Winter made itself known with a lacklustre couple of cold days then it too decided to hovver in the wings deciding what to do. During this time Jake and Boo seemed to grow beyond belief. They've exited the "I want to kill you 24/7"stage to the "I want to kill 8/24" stage...because we are facing an uncertain future I let Boo choose the xmas decorations this year....holy moly it is like having TOWIE in my own lounge. We did opt for a real tree this year....it's beautiful and fragran, just drowned in white feathers and glittery birds.

Okay..it's now the day after Boxing Day.....so much has happened since I started this post.
The family and I have been pacing for weeks after the transplant funding request has reached. It went to the fifth panel but they have at long last said yes. It's unbelievable, we are in shock still. The prognosis without the treatment was less than 2 years. We now have a chance which we are grabbing like a pair of Jimmy Choos going for a tenner.
It's the best Christmas present we could have wished for but it left our emotions all.over the shop. You'd think we'd have been grinning from ear to ear but the realisation we have a shot left us spinning. Think of the feeling of losing sight of one of the children, you have the frightened sick feeling then when you find them five minutes later what do you do? Yep, rather than smile in relief you cry, scream and grab all at the same time....we'll it's like that lol.
We found out only 6 days ago so now getting used to it and let's be frank, Xmas was a brilliant distraction. We have the best time ever. From our traditional visit to the local pub on Christmas Eve to.spending the actual day at my Bro's house with all the family. A few times I caught myself idly tapping my wrapped presents whilst drinking in the warmth in the room, all of us crammed into a cottage lounge drowning in shiny paper, occasionally screaming "watch the tree".

We all build up the expectation of having a brilliant festive season but I have to confess this year was really good. After eating to the point of bursting the 'boys slumped on the sofa to watch frozen in 3D...honestly it was pathetic...no staying power!
So we now hurtle towards 2015 at break neck speed. Who knows what it has to offer. 2015 will be what we make it. We know we'll all face days that we just want to hide under the duvet. That's cool, it's just a "life's not fair" day. But for everyone of those days 2015 will give you the perfect day in return.
I hope you have the best ride and get to hold your arms in the air whilst screaming at each bend and corner.
As for us, we'll be a little more sedate. Boo and I will continue to catch the wind, pushing our outstretched hands through the air whilst I drive in the sunshine. Mark and Jake will, no doubt, continue to be Norman Wisdom replicas making us laugh. The girls will benefit from a healthier lifestyle, getting the scooter out with them. I will spend time with my face, eyes closed, up towards the sun or staring at the night stars in wonder. I want to dance in the kitchen with my girls and lie in the grass with Boo shaping clouds. I want to have "date nights" with Mr. Hill and mimick films with Jake. I, in reality, want 2015 and all it brings.
We all know the fight my family face in this coming year but guess what? What will be will be. Why worry about tomorrow today? Carpe Diem!!!
Here's to a brilliant 12 months. Live, love and laugh..
See you in the new year xxx

Footnote: Since writing this just two days ago we have been given the dates for treatment. It is this month.....very quick and no time to hide in the corner and panic. Luckily I have loads of shawls and hats....once again we reach the stomach churning climb on our Roller-coaster. All we can do is hold our breath, close our eyes and wait for the feeling of flying at breakneck speed as we tip over the edge into infinity and beyond.....
Xxxx

Black Eyes, Blue Days, Bi-Centenary Celebrations and 34,944 Hours

Changing Faces

Goodness where do I begin today?

I would say as in the infamous line “let’s start at the very beginning, a very good place to start” but that doesn’t seem appropriate. My life is a constant journey of twists and turns and this post will probably follow suit.

Today I have assumed the position in the back of the house in my kitchen room/conservatory where the morning light is bright and the sound and freshly laundered smells coming from the tumble dryer envelope me in all thoughts of home. I am bruised, battered and tired from another prolonged attack yesterday but after 4 hours sleep I am in mum mode cajoling, screaming and pushing Mark and the children out of the door for the day.

My girls are asleep beside me making the odd movement as they chase rabbits in their dreams. The day has a slight ash colouring to it heralding colder weather will soon be here.

The weather was exactly the same this time 4 years ago when I fell ill. I remember it well as I first started to feel off colour as I was enjoying lunch on the local seafront with Mark and my Dad. It seems a world away that happened yesterday.  The sun beating down, a soft breeze and laughter.

Overnight something happened that changed our world forever. Our normality became completely abnormal and our safe zone was one of panic for others. It has been said that you do not know your own strength until facing real adversity. Little did I know that I would be facing mine every day. That was 34,944 hours…not to many if you say it really quickly.

So here I am, four years, almost to the day, later with the biggest battle yet to come.  We have fought bureaucratic minefields, red tape that has tied us up in loops and medical barriers. Mark and I have challenged all decisions, goods and bad, to ensure that the best possible outcome is achieved.  It is extremely tiring and I look over at my once fresh faced husband who looks tired, worried and worn. But is you look closer he still has the warmth, the twinkle of humour, fight and love holding us all together. I thank my stars for him every day. Lesser men would have walked away but this amazing bloke has been by my side all the way and ensures that I have a fighting chance.

At the moment we are waiting for the phone to trill with news of the stem cell bone marrow transplant (which from this moment I shall call the autologous graft, it’s easier to type). Whilst waiting, due to a frustrating change in the funding process, we have realised what a risky procedure it is and that even a black eye can make all the difference ( I will come on to that later). The delay meant that I got to spend the summer holidays with my two ruffians, watching them chill out, break bones, laze away the days and general keep me on my toes.

During my time I have been very fortunate to have been supported even during the most difficult of circumstances.  My parents have been amazing, event to the point of taking the Rugrats on their summer holiday abroad…..twice….suckers for punishment!!!! My Dad is constantly up at Resus with me passing he time playing “Eye Spy” and other  inane games to pass the time and stop our brains registering the severity of what is going on. This is the man who once made me run out of hospital after a tonsillectomy, flowers bouncing behind me, because he hated hospitals…..how things have changed Dad?

My constant buddies. Caz, Philly, Lisa, Pip, Debs  and Tons instinctively know what to say to me.

Boo’s second family, Berta, Becky and Aimless who wrap her up in their arms when ever needed. I’ve mentioned Caz but she also needs recognition for taking Jake under her wing as well as her and Philly grabbing Boo at the last minute and having her sleep at theirs. All to try and keep my kids sane and in a routine.

There are many other who have helped over the years. It wouldn’t be right if I didn’t mention those who were there for me in the early days. I have to say thank you to Jax Gates who gave up her time and supported me in the early confusion.

To “celebrate” the 200^th admission to A&E I took up the promised cakes and card to the team. Then Boo and I did the same for the local Paramedics. I thanked them for their patience and care and explained without them I am not sure if I would have made it this far. They have all, and I mean all, been involved and are as much a part of the journey as anyone else.

Then we come on the my FB buddies, there are so many of you I am afraid to miss anyone but there are a couple who make me laugh out loud even in the darkest  hours.  Sadie you do it every time as well as you “prove it man”. Kath , you make this Kim cackle at regular intervals. Everyone at VUK have and continue to support me so I thank them too. I cannot miss off my very own neon pink bus wanker, Grimesy!!!!

3 weeks later

I’ve been joined in the fight by friends, some have fallen, breaking my heart in the process and others continue to fight their private battles in the overall war. They have left a mark on my soul, as well as on my finger ….KTF x

Right, black eye!!!!  I said it would come back to it. It’s one of those stories that seem impossible. On a passing whim, always dangerous, Boo and I decided to pop into a well know home improvement store. We were having a nice time pottering about when I had the “bright” idea to have a look at some carpet tiles. All was going well when “CRACK”!!!!!! one fell from the top shelf and the hit my cheek bone.  “Its only a carpet” tile I hear you think. Yep that is what I thought until I saw the reaction of both Boo and Staff…….to put this way it was a close call on whether she had broken my cheek bone….. I was not a pretty picture.  The poor duty manager looked like he was going to faint, even more so when I went back the next day with my eye and cheek the colour of squid ink…..4 weeks later I still look like I’ve done 4 rounds with Mike Tyson. Poor old Mark has been getting funny sideways looks wherever we go….another line for his brow I think.

While I sit here in the calm of the house laughing at the memories I am typing it is hard to imagine that I get blue days, or as my Dad calls them the “why me?” days.  I am looking around the room at my ramshackle house that would never win any “show room” title and see that it is not held together with bricks and mortar but love and resilience.  I am seated at the computer table sandwiched between the fridge and the bookcase. The latter filled with DVDs and books but topped with sports trophies that the children have won. Cycle helmets lay nearby from all three of my ruffians. Little trinkets the children have made over the years. The fridge is adorned with hand written letters, photos, paintings and a recent addition of a get well card from Holland. The dogs sofa is behind me with both dogs wound up like little coils, noses tucked in, snoring.  Even through the shouting, eyebrow raising and general teenage/youth angst this house is one of love.  I left it to get married, hobbled over the threshold to have both my children then bounced back with them in my arms. It was my haven when I fell ill, and optimises the word “Home”.

I will be leaving it soon for treatment and not returning for some time. I also face the risk of not returning. It is during the blue days that this pops into my thoughts. I have a quick grizzle then brush myself down and move on.  I strongly believe that half the battle is attitude. I have always been extremely stubborn and this had really helped me over the past 4 years.

With up and coming events my posts maybe short or even missing. I hope to resume the video blogs to bring awareness to autologous grafts for people who have auto-immune diseases. It won’t be pretty but fingers crossed it will raise the profile.
Being very “Chemille” like and dramatic, with a slight swoon, if this is the last post then all I can say is that I have had a blast. I have probably laughed and packed more into the last four years than most people. I have found an inner strength that I didn’t know I had and hope I have passed the “never give in” attitude to Boo and Jake. I have learnt to walk away from the incidental and not focus on things that bring me down.  I have found new friends, reunited with others, let friends go and realised what is truly important.

The future??? Who knows??? It won’t be boring or mundane.  It will be a fight but even then I foresee funny moments and times of tears. I will continue to flit between my two personas, Sarah and Gracie-Lou. I hope to grow old completely ungracefully, maybe some more ink Mr Gilbert?

 One thing is for sure…… I will be adorned with glorious handbags and fabulous shoes x

Until next time fellow HUVS facebookers

Signing out for now……xxxxxx

memories, mirth and milestones

I know it's been a while since I last posted on this blog and time has escaped me once again.
The summer holidays are all but over. Our minds are turning to jumpers, school uniforms and nights closing with the fire whispering in the corner. I love this time of year.  Mentally  i start planning Halloween and Guy Fawkes night. Both are an exclude for a party with close friends and family. My mind is turning to it even earlier than usual with the stem cell ttransplant looming. It looks like I may miss both of these dates as well as the possibility of being in hospital for Christmas. This is really hard for me as it has always been a big celebration.
Unfortunately the transplant was delayed due to a change in the funding criteria....another bureaucratic nightmare, it seems if you have a rare condition funding for extreme treatment is difficult to get......dont get me started on this as I have loudly backed the ALS challenges for that precise reason. The transplant team are confident the funding will beforthcoming as I am their first for my condition.
So here I am bags packed ready to go but in the meantime my kitchen looks like it out of a Nanny McPhee scene.....I have s!ow cookers bubbling, cake mixers whisking, soupmakers chopping whilst reading cake decoration books. Don't get me wrong, I am a terrible cook and even worse at icing cakes. I find any kitchen activity difficult and tiring hence all my super duper machines. It doesn't stop me reminiscing about the steamed up kitchens of my childhood. One whiff of cottage pie and I am back there hanging off my Mum's or Nan's shoulder asking how much longer for the umpteenth time. I'm sure some of you have a similar memory. Droplets of water running down the window pane , this is before double glazing, and the kitchen being the warmest room with a hub of conversation and activity, again before central heating.
I seem to be dipping into many memories from my childhood at the moment. Only yesterday I was telling Jake about how I used to liein bed listening to the re order player booming out Blondie downstairs or how Sunday evenings were a bath with the "top 40" followed by steaming hot crumpets with butter running down your fingers watching the "Holiday" programme......family times that seem to be missing from today's world.

Health wise I am deteriorating but still fighting. My attacks are still every 3-5 days but have strengthened in intensity. I don't have much energy so sleep a lot whilst trying to maintain normality for Jake and Boo. They have had a brilliant summer at the beach, skate park, with friends, camping, parties and to top it they are off to Gran Canaria with my parents next week. It is been delightful to see them having a normal summer.
Jake was 15 last week and is 5ft 10 so is grown up. This means we tend to laugh more and boy does he make me laugh.....both he and boo are natural born comics. They share the same sense of humour as me and Mark.
I'm still not a!lowed to work but luckily I have my Mum, Philly and Caz who keep me entertained. I have missed some important events this Summer I apologize to Lisa and Lucy for missing your weddings. Yesterday I made it to the beautiful Amelia's christening. Unfortunately my friends in green were needed. A big high 5 to Philly for keeping calm and administering my emergency drugs...you're a star...
So what next.......I have several appointments in the next fortnight. Some scary, some routine..all essential. I will continue to keep sane and try to remain up beat and I am going to buy 3 huge celebration cakes....one for the Hove paramedic base, one for RSCH resus and A&E majors team and one for my family and friends....why you ask?????? well sometime this week we will celebrate my 200th visit to the A&E. I say visit but really mean a rush bathed in blue flashing lights with lots of laughter cutting through the worry...
 I say celebrate because to reach 200 means I am still here.....without the kindness, patience and most of all humour of all of those involved I don't think I would have coped....I consider myself to be extreme!y lucky.
On that note I'm signing off
Until next time
Sxxx/x

Some Journeys Do Not Have An Ending But A Beginning

Well it's been sometime since I posted and I am really sorry but things have taken a rather speedy turn in the past weeks.
Firstly I must apologise up front or the numerous typos that will no doubtoururn up in this post. I am using a tablet from my hospital bed, swapping my glasses every 2 minutes as my eyes continually relax and retract due to my current medications....I am probably posting this on someone else's blog entirely.

I have pondered on what to base this post on but to be honest so much has happened recently that I think it could well be an eclectic group of thoughts put together and thrown around in Tom Cruise's cocktail shaker, for those who are older enough to remember.

So here I am on the renal ward at my local hospital watching the nurses and doctors whizz past as if gliding on petrol powered roller skates. We all know about the cuts to our wonderful NHS but it is not until you see the repercussions on a regular basis that you see how devasting it is...And understand why these fabulous role models who have dedicated their working lives to help others are leaving the profession. Take it from me, as someone who has lived in countries without the likes of the NHS, we are so incredibly lucky. I have never understood those who feel the need to say bad things about the establishment....try paying £40 just for a Drs appt and that was back in the 80's.

Anyway back to what's been going on....well firstly as previously said I am in hospital having my 6th stay on the ward for plasma exchange therapy. Due to bed shortages I am quite late coming in and unfortunately the impacts were quite severe with my health being effected. Typically, as per usual, the weather has decided to change. It has more Mediterranean feel to it. I am not lying when I say that every time I come in the weather is absolutely glorious. This time is made worse due to the fact the person next to me is too poorly to have her curtains drawn back so I am imagining the blue skies, the Brighton wheel you can see from the window and the wonderful pink sunsets that appear to blend from pink to purple to blue then grip to the very last fragments of daylight before giving into dark skies glittered by stars, fishing boats and promenade lamps.

I suppose I will need to get used to using my imagination over the next few months being the fact that in will be locked into an isolation room for several weeks waving at people through a glass divide. In think Mark is hoping it is sound proof too. I am a little nervous about it all. The treatment not only carries significantly risks but is a back breaking procedure that is and quote "is really quite pants"....the whole aesthetic part of it doesn't really bother me as I am reconciled with that part and actually find it exciting that I can take it as a chance to try out new things....actually thinking of doing an Annie Lennox if my hair grows back....trying new fashions etc....when you get to the stage I am at your thought process is " why then hell not?". The thing that I am really concerned about is internet shopping....holy cow!!!! It's like go into overdrive when I am on the wards...it is so bad that a new A&E Dr asked me what I was doing 4 hours into an attack the other night....you should have seen his face when I said shopping... I was on eBay lol....he said how strong i was and walked off laughing....this is the sort of thing that gets me through...highs and lows again. I think Mark will have to block everything when I go into for the transplant.  I do consider myself to be incredibly fortunate that i have such a good support system there, the other night the A&E Consultant drew up in a wheelchair to shoot the breeze with me and my dad for half an hour.
Thank goodness we have things like skype so I can continue to bore my nearest and dearest. Boo has already set up the tablets and PCs at home. When did the Barbie's get replaced with phones, tablets and blooming loom bands???????

I haven't been in to work for a while. Unusually for me I took the news about the stem cell transplant quite badly and for the first time in four years hit a brick wall, literally. I just couldn't move forward. It's not that you stay constant, it's a very up and down. To the outside world you appear OK but inside your emotions are like an very tiny boat on a huge sea bobbing up and down clinging to the side hoping to make it to calmer waters.....well that is my life at the moment. Only today a fellow patient moved on leaving her children behind. Hearing them cry for their mummy (they were in their twenties and still called her this made it even more heartbreaking) brings home the enormity of what's around the corner. Because of this I have learnt to be honest, take time out and focus on what brings a smile. Last week I was driving Boo home when I told her to put her hand out of the window and the catch the breeze whilst we sang along to Taylor Swifts "22".  When Jake walks into the kitchen I grab him for a cuddle, he hates it being a teenager but I love it. And that's what I mean....taking time to feel good.  Continue to nag Mark or he would think there is something seriously wrong. He knows he is my rock and I couldn't even have started this journey without him.

So what happens over the next few weeks......well I'm now back at work, not today obviously, but feel well enough to partake in a few hours. Only with numerous coffee breaks thrown in of course. Apart from the usual trips to my second home I am trying to book in and arrange days and evenings with those who are important to me. I'm not saying that I am going to drift of this mortal coil but know it is an time to make sure that everyone I love knows it. Today has reiterated how important that is.
It will be a time of constant appointments, tests and the preparation phase before removal and harvesting and no Caz I do not need a tin of veg to take!!!! Then, as they say, the leap of faith. I tried to explain to Mark, it's like standing on the ledge of a building and once you've stepped off you can't go back. You must know you'll never going to fall upwards. Well its like that, once he bone marrow is gone there is only one direction you are going......a bit like giving birth lol....

On another note entirely my dad and I have been having some stonking eye spy competitions in resus....had him going for hours on the letters ahgd...antibacterial hand gel dispenser.....brilliant, even had the rest of the patients joining in....I like to think we are the entertainment. Boo recently did an collage of selfies with the nurses...

Both the children are coping in their own way...Jake looks at it like an opportunity, for instance tonight is the beginning of the World Cup so his mates are round the house, obviously Mum won't be there to police them all but Dad is there to join in.

Right for the serious stuff....I've had a lot of people ask me about the transplant and it is confusing. I'm having an autologous stem cell bone marrow transplant. I am only the second ever person to be given this treatment for my condition so percentages are shown do not reflect my situation but wikipedia have a really good page on it

http://en.m.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation

Give it a read, it is sort of makes sense.

So my friends into the battle we go again. I know I have many standing next to me both in flesh and the shadows......we will conquer what ever is thrown at us and as in the movie Braveheart raise our arms strongly in to the sky as one, throwing our stunning stilettoes to land delicately where they fall screaming at the top our voices "VENI, VIDI, VICI" (I came, I saw, I conquered)

Until next time my fellow fighters

Xxxxxxx

Camille at the Crossroads

I remember posting on the blog a while ago about decisions and how every so often we have find ourselves at a crossroads. Do we go forward even though frightened by the prospects, stand still and wait or look to our left and right to see if there is anything on the horizon.

Last week I found myself at my own crossroad. But at mine there was no left or right turn. Do I take the leap of faith or sit tight waiting for the inevitable? It is truly amazing how many emotions you can have in such a short space of time when the consequences can be so high depending on the hand of fate you are given.  

So there I was in hospital having my latest round of treatment, admiring my sparkling slippers when my consultant perched on the end of my bed.  The conversation started in the usual way with the normal pleasantries when he, without warning or offer of crash helmet and knee pads, launched into the thoughts of my next treatment. It’s funny that your brain only picks up certain words as if they are floating across your vision in bold capitals and flashing like some errant motorway sign. “risk, stroke, death, brain bleed” all muscled out the words of encouragement like “remission, health, hope, quality of life”. It was as if the all the negativity had prepared beforehand to frighten the bejesus out of me for just for kicks.  I looked at him expecting there to be blood on my cheek after the surprise mugging I had just experienced.

It took a moment for me to regain my composure and in my usual fashion crack some inane joke.  I think it was “Oh Crap!! I’ve just got my hair to a style I actually like”. I could see he cared by the way he was picking at invisible flick on his trousers and the continued brushing away moment. Drs must have stomachs of steel to have deliver this sort of news without breaking down themselves, especially when they have worked so hard to try and make you better. It was at this point that I laughed, smirked, cried and sighed all in the space of 3 seconds.. He must have been close to screaming for Psych whilst backing up the cubicle. I was told to take a couple of days to think about it and we said our adieus.

I want to say that I then melted into a 1940’s film heroine like Camille, all swaying and elegant whilst falling into a theatrical fainting posture, perfect eyebrows and stained lips but no, I put my headphones on and continued to watch the snowboarding in Sochi. My usual defense mechanism had charged to my side to keep me sane in that very insane moment. It gave me a few minutes of brain meltdown whilst hiding behind the pretence of the Winter Olympics.

And this is when I found myself at the crossroads once again. Sitting there with sticky out hair, in rather snazzy pjs and a pensive furrow on my brow whilst I figure out how an earth I am going to tell Mark. How do I break the news to my parents and even worse my own children? Then my guardian angels appeared in the form of the renal nurses. They are brilliant, a complete law unto themselves and made my stay in hospital almost pleasurable with their wit, charm and genuine caring.  From being told of button wedding bouquets to Irish dads in a strop, they made me laugh from the time I entered the ward to the time I left. In my moment of uncertainty they sat with me, discussed the choice, arranged for a nurse specialist to have a chat and made it a little easier.

Dexy's Dungas

So what next?  To be honest in the usual day to day things we continue in the same vein as we have for sometime.  I try to have a normal life whilst intermittently being transported to hospital. The children continue to challenge as we would expect them to at this age and friends and family rally round.  I look and sound the same, smiling, joking and being my usual flippant self. But inside I am different. I cannot concentrate long before thoughts enter my head and push the original ones aside. It is normal and I know it will be this way for a while. I am very lucky that I have a small but strong support unit that listen to me babble, cry and laugh all at the same time.  I could drive myself insane with black thoughts, my private fears and the “what ifs” but why would I want to waste my time doing that. I do not want to look back at any stage and regret my actions. Ironically Gabrielle Alpin’s Power of Love has just come onto my sound system as I am typing this sentence and it reflects my sentiments exactly. If we can say we have loved in our lives then it is a life fulfilled.

Last week a writer and actor named Harold Ramis died of Vasculitis. You will probably know him from the films Ghostbusters 1 and 2, which he wrote and starred in. Like me, he was diagnosed in 2010. Unlike me he was not able to say out loud that he was a sufferer. It must have been very frustrating to have this disease and be silent.  I know his death affected a lot of Vascultis sufferers who became aware of their own mortality.  Ironic for me to have my news in the same week. You can rest assured I will not be silent J

If I could have one thing it would be to have the big man back so I could chat with him. He would know exactly how I am feeling. I could really do with Mr. J around at the moment. I am sure he is looking down and supporting me in ways that I am unaware of.

Birthday antics

So here I am after celebrating another birthday with beautiful gifts from my nearest and dearest. I have fought my own personal battle for another year and won. I even bought a pair of dungarees for the first time since Dexy Midnight Runners were singing about Eileen.  When faced with adversity I seem to challenge it with a boisterous exterior. So this week it has been full make up and high heels. It’s weird that I look the best I have for ages, never judge a book by its cover J

I am moving from blind panic to philosophical. I am setting myself challenges over the next few months. Keeping my mind and body busy can only be beneficial. A new ink that depicts me, a vegetable and salad garden in which Boo can get her hands dirty, a room that Jake feels proud of and date nights with my wonderful husband. Life goes on and that is how it should be.

Never before has CARPE DIEM meant so much to me and my closest circle. It is so important to live life to the maximum, if you are unhappy with yours then change it, you only get one. Even if I live to 100 I want to look back and say I lived my life the way I wanted.  I loved, laughed and made a difference even if it was very small.

xxx

Decisions, Drugs and Determination

The changing faces of Sarah in 2013

It is now February and I have yet to add to this blog. It is not through a lack of desire as I have attempted to write something no fewer than 5 times but more because I have some important decisions to make and I can not settle.

2013 did not go out with a bang, it rather fizzled out like a damp squid amongst the constant rainfall here in the UK. The festive time was very quiet and if not for the frantic build up of shopping it could have really passed for any other time of the year. Normally a time for reflection, the continuous theme was “goodbye and good riddance” to 2013 and that 2014 had to be better.

I seemed to buck the trend slightly and thought on the whole 2013 was a pretty good year. It obviously had its ups and downs but I seem to just go with flow.  I was in and out, on and off and generally running in circles just to keep up with myself. Often seen as a moving blur, careering through the day at breakneck speed. I often would like to slow down but once the momentum has taken hold the force is too strong and I just get buffeted along.

Sometime through the kaleidoscope and trick mirrors I see a point of clarity that make me take breath and stop still. Those moments are the ones that stick in the mind and change the direction that I am taking. In 2013, Jacob and I were having a teenager vs. mother interaction when he informed me that he lost his mum to the hospital 3 years previously. It was like I had been hit in the face with a barrel. In that moment I realised just how my son had been affected by the change in me. He admitted he wanted the old me back and that he missed the things we used to do. With Boo it was watching her literally fall to the ground when the Dr informed her she had urticaria due to a temperature. All she heard was urticara so thought she had caught HUVs. The sheer panic on her face made me realise just how much the threat of catching this life changing disease was affecting her. I would like to say that both of these occurrences changed us but in truth things soon revert back to how they were but they are a good reminder.

After another visit to the fun house

So how has 2014 started….like a bloody whirlwind. Literally in and out and shaking it all about!!! I am visiting my friends in red, green and blue roughly every three days at the moment. I would like to say that I am coping but the façade I put on every day is starting to show signs of strain and cracking like an old plaster mask. I keep patching it up with colour and sparkle knowing sooner or later the damn thing is going to fall to pieces exposing the real Sarah and the struggle she faces.

With the words above it would be easy to think that I am unhappy and having difficulty in coping but the human mind and body are amazing things. We are a resilient species and surprisingly bounce backable. I, in fact, spend a lot of my time laughing. Laughter is infectious and soon you find those around you relax and join in. I have always been stubborn and this is still one of the stronger flaws in my character.  It manifests in a variety of ways. The good side of it is that even entering 2014 I still refuse to lie down and let life take over. I am still at my desk each day dressed up and in heels. I still attain to be the thin glamorous person that I visualise in my head, younger than my actual years and growing old ungracefully.

I am getting quite a lot of time to dress up for business with lots of meetings in London. I like getting suited and booted for the day. What I do need to do is actually get out and socialise in the evenings. Sometimes I feel old, 46 in a few days, where have the years gone. I look around my office at all the youngsters’ fresh faced and exuberant in their naivety. They keep me young with their ideals and thoughts.

I recently was taken into A&E when one of the consultants asked if I wrote a blog. Panic gripped me, “Oh no, what have I written? Have I made any faux pas? Have I insulted anyone?” but of course the answer was no to all three. I never considered this blog to be a medical communication but more the inane thoughts of a middle ages woman clawing on to reality in her surreal day to day activities.

I have often written, sometimes in publication, about the teams that look after me and how fantastic they are. From the old hug to sarcastic barbed comments said to make me cackle the actions of these amazing people have kept me sane even in the darkest times. One of the funniest moments was when I was in rocking and rolling when the old guys opposite shouted at me enquiring “are you on drugs?” Now I know I look a little strange in an attack but really, who was he to ask with his gown open, flashing his budgie smugglers at me, shaking his stick in a swaying motion. He even asked the nurse who just said no, she is poorly. He continued to enquire to everyone who entered Resus whether I was taking illegal substances. It wasn’t helped that I was laughing with my Dad and the staff. I have many funny memories from the hospital. The “boys” have been brilliant, even blowing up sterile gloves with the number 100 on to celebrate my 100^th admittance to their unit back in April. Incidentally if any of you are reading this I am coming up to at least 165 so you need to think about our celebration this year.

One of celebration balloons

At the moment I am waiting to go in for more plasma exchange therapy, it is quite frustrating as I am now weeks behind the original timescale. This is primarily due to over crowding and the lateness of my antibody results returning. I wait with bated breath each day watching the phone in case in bursts into life. The bag is packed and ready, so once given the nod the well oiled machine will switch into motion.

Back to my original sentence, the decisions I have to make. It is difficult sometimes to make a choice of treatment when so little is known due to a limited amount of research and evidence. Do you trust the way forward, seek an alternative opinion or stick your head in the sand and hope for divine inspiration? I have done a lot of soul searching and believe that I have the right person. He has tried everything, written to the board to get all treatments and liaised with other consultants to ask for their expertise. I have two consultants who do not mind my calls, questions, honesty and general character. The choices I have left do not sit comfortably with them but they know we are getting to the bottom of the basket where the choices are all but gone. This, people, is my reality, is it any wonder that I am madder than a wet hen!!!!

So, what’s next…. The way things are going the likelihood is that I will get to spend my birthday in hospital. We have 10 days and the treatment is 6 so unless they take me in soon I will be turning 32, opps sorry a slip of the fingers, 46 in my pjs, laying down taking it easy….perfect. My thoughts will turn to my next ink, the books I want to read the necessity of checking my tablet to ensure that the episode that I am watching of “Game of Thrones” isn’t face up for all to see as I slumber…. Yes, this did happen and boy did I have a red face when I rewound the time I had slept and saw what I was showing to the ward…..holy moly…. If the patients and staff didn’t know about that form of act they do now J

So for now I am signing off and will be back soon with an update for you all

Until then take care and remember Carpe Diem/KTF