Back 2 Life….

england

My holiday is officially over and I am back to the keyboard to type it all up for you.

The last few weeks have been manic and I have so much to tell you, share and get your opinion on.

First and foremost I would like to update you on the Gorlins Syndrome stuff.

As you are all aware I have been advised to try the Erivedge Treatment. Anyone who likes my Facebook page will also be aware of the dilemma I faced a few weeks ago, however for those of you that don’t here is the dilemma I faced….

After deciding on a start date to commence the Erivedge Treatment I received to letters in the post. One was the confirmation from the Northern Centre for Cancer Care to confirm that I was indeed embarking on the Erivedge Treatment and the other was from the University Hospital of North Durham with a date for surgery to remove the BCC’s I currently have.

Now the dilemma comes from the fact that I want to get rid of the BCC’s I currently have, yes the Erivedge course may get rid of them but it could be months. When I get a BCC my mind takes over and I am not settled until it is gone. Here I am with 6+ and I have the opportunity to get rid of them, but I also have the opportunity to keep them at bay.

After consulting my Gorlins friends I decided that I would ask the team at the Freeman Hospital if they would be happy for me to have the surgery to remove the growths I currently have and then embark on the journey they are offering as a preventative rather than a cure.

Phone call made I awaited a reply and to my great relief my Oncologist is more than happy for me to do this.

Decision made I also decided that if I am going to start from scratch with no BCC’s it is vitally important that I uncover the areas that are hiding at least two BCC’s and get rid of this hair. As you all know the chances of me losing it when I start the treatment are high so I figure lets do this thing properly. Hair off before my pre consult for surgery and fingers crossed all the BCC’s are removed in one fell swoop.

How am I feeling? Well I am relieved to not be in two minds of which direction to take. I have been given the chance to take both options and that’s great. Not looking forward to the surgery, but then who would be? Also, I am apprehensive about the next new step. I am not a fan of new things, creature of habit springs to mind. All I can do is go with the flow and not worry about things I can’t control.

Anyway on a happier note, what have I got coming up over the next week for you to read about?

We have been so busy with days here, there and everywhere. Here are a few teasers for you:

Girly Night’s…..

girly nights

Date Night….

date night

Impromptu Family Day….

impromptu family day

Libby’s First Football Match…..

footy

Results Day….

gcse1

The Journey Across the Border….

border

Haven Holiday…..

haven holiday

Zoo Adventures…..

zoo

Kids in the Kitchen…..

cake

Nothing beats a cup of tea….

tea

I also have a few books to review for you, I will hopefully have an update on my college adventure for you (what a nightmare that is proving to be, yet again), a list of hospital visits and some exciting things coming up this week to also tell you about.

Thank you for reading and I do hope you enjoy what I have to come over the next few days….

For now…

Mwah

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Gobbledegook Dilemma

waffle alert

WARNING WAFFLE ALERT!!

The postman brought me two letters yesterday…..

One from The Freeman Hospital in Newcastle and the other from The University Hospital of North Durham.

It seems the only rational way to reason the contents of the letters is by putting it down in writing and having a good old waffle to you.

The first one, from The Freeman was from the registrar that I have been speaking to in regards the Erivedge treatment. It was my copy of the letter that had been sent to both my GP and also my Plastic Surgeon. It laid out the exact chain of events that had occured with her and ended by saying I was going back in a few weeks to commence the treatment.

The second letter was from the Appointments Officer for Plastics at University Hospital of North Durham with an appointment for a pre operative assessment and a date for my next surgery.

question

Now thats all well and good you may think but one of the conditions of my taking the Erivedge is that I can not have surgery for 6 – 9 months. Currently, I have at least five BCC’s which are larger than I like them to be and quite frankly I want rid of them, well that is how my mind is set up to work, find a BCC have it chopped off……Brutal way to put it but that is the upshot of it.

I phoned UHND a few weeks ago and asked about likely surgical dates and I was told October so when the appointment turned up yesterday I was a little taken a back.

For all my mind was clear on where I wanted to go with the Erivedge, I now have a serious niggle at the back of my mind. Here I have the option to get rid of my current ones in a few weeks, go through Surgery and be laid up for a week or take the Medication and potentially still have to have this surgery of surgery of some kind to remove the same growths in 6 -9 months time, all the time having to go through the possible side effects that it may bring.

(I hope this is making sense to you, I am writing as I think so sometimes it is a bit gobbledegook.)

Gobbledegook

So here I am yet again in decision making land….let me make this clear…I really do not like decision making land.

What I need to do in the next couple of days is to give UHND a call and see if I can arrange a clinic appointment with my surgeon sooner rather than later.

His opinion on the matter needs to be gained but also what I need to do is realistically assess how many BCC’s I currently have. I need the full count to be able to aid any decisions. I know I have one on my back, one on my shoulder, one in my eyebrow, two small facial ones and then there is my head.

I know I have scalp ones but the only way to truly assess how many and where is by shaving the whole lot off. I keep threatening it and keep getting talked out of it, or being told it is very drastic and I agree, yes it probably is. However, I do like having a shaved head, keeping an eye on growths is so much easier, and currently, looking in the mirror trying to cover bald patches up everyday is more soul destroying than having to shave it all off. I hate the way my bald patches shine through and yes, you will still be able to see them, and yes I will have indents in my head that will look odd, which will attract stares but people who truly want to know my story will ask. The chances are very high also that if I start the Erivedge that I will lose my hair, maybe no totally but it will fall out. What would be more disturbing pulling out a handful of hair or leaving a few whiskers on your pillow?

bald

Awwwwww I don’t know ….I hate being in limbo….it consumes me and drains me. I wish there was someone who could wave a magic wand and tell me the path I should take….alas there isn’t so I have to go on instinct….

Anyway….if you have read this….thank you…..if I have left you feeling in Limbo….sorry….there is always someone worse off than yourself and in the grand scheme of things, my issues are tiny in the woes of the world, for the most I just get on with it but this one decision has got me on the fence again…. *sigh*

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