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