I started out writing a diary of my journey, but after a week I really didn’t have much to tell, and decided that what I did have to tell would be better said in a post for you, when I first month was over.
Far be it from me not too keep you up to date with all things me.
This is going to be one of those text heavy post with only one picture. (There are only so many pictures of hospital signs and ward signs that one person can take and look at).
The last time I spoke Gorlins Syndrome I told you that I had my surgery cancelled, this was due to my Consultant wanting to see me in person because of the large increase in BCC’s that I had. Well…..
On Monday, I got to see him. Despite having a 1025 appointment that had been changed without advising me to 1100, then having to wait until 1200 to see him, I finally got in.
He apologised for having cancelled my surgery and told me, the reason was that I had gone from a half hour surgery slot to a three hour slot, also because I had such an increase in BCC’s. A new date had been found for me and it was late November, he asked if I could give his secretary a call to confirm what date it actually was.
He asked me to show him where the BCC’s were and that I did. I explained to him that I have several on my head but finding them is a nightmare, so asked if we could just go with the flow and take them off on the day as I would have no hair and he looked quite shocked. (I have been threatening the hair thing now for so long I am boring myself) When I explained to him that keeping my hair seemed pointless when I am starting the Erivedge after the surgery, he seemed to back down and said “Oh ok, well yes you are highly likely to get alapecia in some form so I understand the reasoning”.
At this point came the question I was expecting.
“So why, if you are planning on taking the Erivedge, are we doing surgery?”
My answer was simple, I could not get my head around starting the oral treatment with visual BCC’s. I wanted to be clear and want to start the Erivedge on a clean slate.
I explained that I had consulted the team at The Freeman Hospital and that they were happy with this decision, also I told him that I understood where he was coming from but there was in my mind no other way about taking the treatment. I have spent days thinking about nothing else, hours when the kids have gone to bed crying because I just couldn’t get my head around what to do. This way I am comfortable and in the zone and that is what counts.
I am going to have to have a sizeable graft on my head and maybe a couple more too. He has asked if I would consider leaving two on my lip for the Erivedge to work on, they will need a graft that will inevitably give me an upturn in my lip which he isn’t happy about so I said I will think about it and give him my decision on the day.
At this point I was so stressed, and so flustered, choked to the point I was holding back the tears that he gave in and said ok, lets go with that.
We had a bit chit chat and off I went home to call his Secretary.
When I called she was on the phone so I held on for her. As I sat my mobile started ringing and it was her calling me.
Turns out I had left him and he had got back in touch with her and asked her if I could be put in any earlier.
Could I go in next week? The appointment was mine and could I let her know before the end of the day.
A few phone calls and I called her back and confirmed.
I followed this phone call up with a call to The Freeman and explained the whole thing to them. Thankfully they were very helpful and understanding and I now start the Erivedge two weeks after my surgery.
Here’s hoping that this is now the plan and it stays that way.
Preparations for next week have begun. The plan was to do my hair on Monday night or Tuesday morning but we sadly lost my Great Aunt over the weekend and her funeral is to be held on Tuesday. As a result it will be a Tuesday night chop for me. I will of course share a picture with you when it is all done.
As always thank you for reading…until the next time 🙂
Its been a long old week, well maybe a little longer than a week…..
I didn’t want to bore you with my treatment waffle. (For all I find a lot of comfort in what I type, there is only so much of my rational and irrational thinking that is worth reading, I save that for annoying Mark with).
I simply have not had much focus on anything else other than the take it or leave thoughts that were flowing through my mind.
What have we been up to sine my girly shopping day last week?
Well this happened……..
Not the most interesting of things, agreed, but we have been promising ourselves new living room flooring for as long as I can remember. There has been some serious long term saving going on for it and finally it is down.
Well I have booked up to go to Edinburgh Zoo while we are on holiday later in the year.
Not the first time we have been but its the first time all the kids will have been and it will be nice to have them at an age where they all remember going.
They are all very excited about the Monkeys. Lions and Penguins ……oooh and of course the Panda’s.
Then is the point we hit ….”Mam. I’m bored” GRRRRRRRRR
We have had a group discussion of what the kids would like to do and they have told me games (got loads of them), craft things (working on that one), Reading (Amazing idea) and a Baking Day.
With a little help from me Libby has discovered paper back “Proper” reading books.
We came across the My Little Pony books the other day and bought her ……… It took her 2 days to finish it but 16 chapters and she is done and desperate to read some more. So, while out today I invested in …….for her.
Seeing her reading has really got my interest for reading up again. I love a good book, but it has to tickle me. I loved reading just like the kids when I was at school but when I left the interest just fell. I love a good book, its finding the right one.
That leaves me with the mission of finding me something good to read, some good series for Libby to pick up on and something that is age appropriate for Regan. (Next post)
A Baking day is on the cards for the week after next.
(If you have any suggestions of books, baking ideas and/or cheap/free things to do then please feel free to comment)
Then of course we had hospital on Tuesday.
If you haven’t read my previous post, Too Erivedge or Not??? , then have a quick read. ( I will let you catch up 🙂 )
Right, well I had my questions ready and these are the answers I got…
What are the most common side effects within the patients that are already taking it in their care?
I asked this question and was told that most patients with side effects will get a degree of muscle spasms, hair loss and appetite issues. Mark asked how many patients they currently had who were experiencing no side effects what so ever. To this she replied, we do have patients who have no side effects, in fact there are a few.
How many patients have stopped taking it because of the side effects? (Bearing in mind the words used by CR UK are “You keep taking the treatment until it stops working or the side effects become too great.”
Quite a few, but then those that persevere find that the side effects become less extreme over time.
Is it going to interfere with me starting college and working? (I have less concern about work than college as I work from home and have an amazing employer)
I am likely to suffer fatigue, but if I structure and routine my days then this can be managed
Will it have a knock on effect in every part of my life?
Until I start taking them there is no way of knowing, each patient is different, only time will tell.
If/When I stop taking it, will it mean I am more prone to cancer than I was before taking it?
It is specifically aimed at BCC growth, and there is no evidence to suggest that this is the case.
Will it mean that my growths increase in growth speed?
There is no evidence to suggest that this would happen.
The other question I had was, “Can I start when the kids are back at school?”, I am very thankful that the answer was “yes”.
The paperwork was signed, the vampires stole some blood and I return at the beginning of September to collect the drugs.
I can’t say I am 100% convinced by the whole thing but then I fear any new treatment or procedure. Then I guess that is only natural, fear is a good sign, means I am human, well at least that is what I am told.