The Surgery Saga continued……

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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 🙂

xxxxxx

Catch up on all things us

Catch up on all things us

Our Holiday was great but all good things come to an end and we were back to reality. School started, Nursery began, we were back to exercise and dieting and we have had a busy few weeks. I touched on … Continue reading

Freeman Visit

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I must apologise for being so quiet the last couple of days.

Posts have been written but to be honest I am not happy with any of them. Mainly I think because today’s appointment was playing on my mind.

I have not had time to dread this appointment as it only came through about a week ago, although I knew it was on its way I am grateful it was so quick, that way I didn’t have chance to talk myself out of it.

While visiting the specialist dermatologist over at the RVI a few weeks ago he advised that a chat with the Professor over at the Cancer Unit may be of benefit to Mark and I to discuss non surgical options.

Now all well and good you may say, and yes it is, but I have one major issue that I need to overcome every time I go.

I have to face REALITY, something I struggle with massively at the best of times when it comes to admitting that I am indeed, a Cancer Patient. Now there is nothing to be ashamed about, not at all, but I feel like a fraud when I rock up and there are so many poorly people there and me.

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Enough waffling and lets get on with what happened….

We had a very long drive there this morning, there had been two accidents on the A1,one north bound and one south bound, so we took the scenic route up.

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I would be lying to say I don’t enjoy the ride up there, love to see the angel and St James Park shining in all their glory.

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We arrived and made our way to The Northern Centre for Cancer Care.

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We truly are blessed to have such amazing medical care in the North East. The hospitals I attend are amazing and the unit at the Freeman is outstanding in its field.

Mark, Regan and Penny came too.

Mark being there is vitally important to me. He asks the questions I am simply afraid to ask, or the questions that I don’t think of. He takes some of what is being said in and I take the rest, so between us when we come out we can piece together what was said.

Like I say today was about deciding if there was anything that could be done other than surgery.

Prior to attending today I knew of three treatments that I expected to be mentioned today. These are:

Aldara Cream

This is a topical treatment that is applied to the BCC over a space of days, it basically uses the bodies own defence system to attack the cancer cells, which in turn may get rid of the growth.

Cancer Research UK

Acetretin

This is similar to Vitamin A, it encourages the abnormal cells to turn mature in to normal cells. This is generally administered in tablet form and has a good record of reducing the amount off BCC’s Gorlins patients get.

Cancer Reasearch UK

Vismodegib (Erivedge)

This oral drug is aimed at blocking the signals that cause a cancers rapid growth. It is classed a cancer blocker.

Cancer Research UK

Before I tell you about today, let me share this with you:

Almost three years ago,  I was invited to do an  interview for ITV Regional News,  when the latter drug was licensed for use within patients like myself. So I had a good idea as to what the drug did and what the medicating process entailed.

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In we went, sat in the waiting room at least somebody was having fun. She brightened up a few of the peoples days though, being her usual charming self.

We had to wait a bit but we got seen pretty quickly.

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As expected she asked me to go over my story, which I did. You have heard that one before so I won’t go in to detail.

She looked over me and agreed that the current batch of BCC’s showed all the traits.

Then came the nitty gritty bit.

“So the reason the Dermatologist has referred you to us is to discuss the use of Erivedge as a long term treatment.”

Hmm, now I will go in to the pros, cons and potential side effects in a post for you tomorrow. (This being because it is a post in its own right, the list is long)

Mark and I have talked long and hard about this drug, it does potentially bear side effects similar to chemotherapy. It is a long term drug that I would have to take for at least nine months, or in the words of Cancer Research UK “You keep taking the treatment until it stops working or the side effects become too great.”

But the results are good, they speak for themselves. It does stop the growth, it does reduce the size of current growths and it works.

We questioned the long term.

“This is a new drug and they do only have the records going back 6/7 years. So far all the side effects subside after taking of the drug ceases. There is no evidence of any other long term effects but then how would they know.”

We also questioned how many patients with Gorlins they currently had taking the drug

“Three or Four was the reply, but then that is good as there aren’t that many of us.”

The doctor left the room and we had a brief discussion and more or less agreed that it is worth a shot. However we would look over the information and come back to her with an answer as soon as possible.

She returned armed with information from the Cancer Research UK site in her arms.

I spoke to her explaining that I would like to give it some consideration and could we make another appointment. She was more than happy to do that and I return in two weeks. If I decide to go ahead then they will take blood tests, and will do so every 4 weeks, I will need to return to the Freeman for observation on a regular basis and I would not be able to have surgery for six too nine months so they could assess the success of the treatment.

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So here we are, I have the information, I have the pro’s and con’s and I am developing a list of questions.

I will share these with you in my next post. It would seem that putting this down in type is helping me to open up. Strange way to put it but it’s a kind of therapy for me I think. Getting it all out there for other people to read and understand is my way of talking about it.

I thank you for reading and I thank you for your support…..tomorrow is another day …….xxxxx