Rain!!! ….Where to go now?

When you plan something outdoors with the kids and you get up to torrential rain…..yeah, that!

At the beginning of the School Holidays I promised that we would try and do at least one thing each week that meant the kids leaving the village.

We visited the beach, we had a baking day, we visited parks and so much more.

Plans were made for when Mark had shifts we could work around and on this very rainy Monday morning we were supposed to be going to Beamish Museum. (As you will know we did go, but we waited until the next day when the forecast and skies looked a little brighter).

The kids were hyper and staying at home would have just been unfair and the “I’m Bored” phrase would have been used to the extreme. To be fair, I was surprised at how little it was used these holidays, I was expecting it from day two but it took almost a week to start.

Taking to Google I started hunting for something to do that wouldn’t be too busy and something that would keep them all entertained.

The list started with Indoor Play Areas, for all there are some fantastic ones in the North East, they aren’t my favourite place on earth, especially on a rainy day.

Next was Outdoor activities, unless we were prepared to get soaked then that was a no go, so that left us with Museums. Something we have so many of, it is hard trying to pick one that would suit all of them and also one that Regan and Libby have not visited before.

Bags packed, kids dressed, phone charged (essential for photos) and amidst questions, we bundled the kids in the car and set off up to Newcastle.

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Regan is on of those children that like to know where, when, how, why, how long and what route are we taking. (I can’t say anything because I was the same, I now understand why my mum used to get so frustrated). They were all told Newcastle was our destination and that was that.

Pulling in to Times Square car park Regan knew where we were going, Centre for Life in Newcastle seemed the perfect place for a rainy day. Although Regan has been before on numerous occasions he had not seen the “Animals Inside Out” Exhibition so seemed a perfect idea as Libby and Penny have never been and they do cater for all ages.

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First things first, we went and got some breakfast. In all the rushing about getting the kids in the car, Mark and I had forgotten to eat.

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Libby and Penny were taken with everything there was to see. During the holidays admission for a child was free with every paying adult. So for the five us it cost £28 and Penny, being under 4, was free.

The kids chose the direction we went in and we arrived and the Ice Wall first, they were all having a touch, play and feel. It was indeed ice and it was absolutely freezing.

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Everything, with the exception of the exhibition, is so sensory, perfect for all ages as you aren’t wandering around all the time saying, “don’t touch”, “look with your eyes and not your hands” and “get off”.

We played with flying bags, spinning objects, blocks that looked like something from Tetris.

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Next was the theatre for “The Crunch”. We sat at the back for the food based show. There were some fun experiments all based in and around the food we eat and the digestion process. Part of the show involved audience participation, so of course we volunteered Mark.

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Mark, along with two children took on the protein challenge…..

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Yes, he had to try a Meal Worm, not only did he have to do that but he had to bring them up for us to try. Regan refused, Libby refused, so that left me and Penny. We went for it and I have to say they weren’t all that bad, tasted very nutty. Penny had four, she enjoyed them that much. (I will not be eating them again if I can help it, tried once and taste never forgotten).

The show was really informative for the kids and they thoroughly enjoyed the pops and bangs along the way. On the way out we were all given free lanyards with codes to play a related online game.

Next was the brain zone.

Penny lost a bit of interest in this area as it wasn’t as playfully hands on but she was fascinated with the pretend fake floor.

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Libby and Regan enjoyed playing with the games, touching the brain, looking at the actual human brain and looking at the tricks and brain games that were there to have ago at.

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Mark was keen to move on to “Animals Inside Out“, the exhibition that is on until the 3rd of January.

The Centre for Life website says this about the exhibition:

“Thanks to the science of plastination, invented by Dr Gunther von Hagens, each animal has been painstakingly preserved allowing visitors to see what lies beneath nature’s skin in intricate detail.”

Watching things on the TV with this kind of graphic detail fascinates Mark and I. To think that somebody has had the patience to do this was intriguing and I must admit I was very unsure as to what we would see.

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How would I describe it?

Amazing…..To be upfront and personal with such large animals was mind blowing for the kids. I didn’t realise how much would be preserved. Blood vessels, muscles, perfect bone structures, pieces of skin and eyes. It really was fascinating. The kids all got something out of it, different levels obviously but they all found something interesting.

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Dog catching a frisbee and an Ostrich…

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Shark……

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Aerial view of the Giraffe…

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Shark and Sheep…..

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Two creatures lurking at the bottom of the sea and a horse head..

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Giraffe and Elephant…………..

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Libby and a Cow …..

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They also have a human body on display, obviously due to the sensitivity of identity and intimate body parts you are unable to photograph it. Libby found it very funny that the human was a man, very funny that he had a willy and even more funny that she was looking at him.

From the mouths of kids, “Mam, what’s those dangly bits?” ……..

It really is worth a visit I must say. I was concerned that it would be a bit gory but it really wasn’t. You are that interested in how much detail there is and how much time has gone in to preserving these huge and tiny animals that you forget what it is you are actually looking at. They aren’t dead animals but pieces of art.

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Next we moved on the the Planetarium, they alternate between star shows and a story aimed at under 5’s. The older two weren’t keen and neither was Penny until it started but she loved it as did Libby. The story is “Little Bear Goes North” and it is screened on the ceiling of the Planetarium for them to watch and listen. It only lasts five minutes but well worth a visit in the middle (If you have a child that needs a sleep take them to this, it will sooth them and maybe even get them to sleep.)

We were told about the 4D ride on the way in and Libby was told she was just big enough to go on. The Ride is called Pacific Rim and involves lots of Motion and Water, or so I was told when Libby, Mark and Regan came out, soaking. I was supposed to go on with them but Penny wouldn’t let me out of her sight so Mark got the job. Libby had been quite scared and wasn’t keen on the motion so maybe not for little ones but Regan and Mark said the effects were very good.

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Unfortunately the ride is currently out of order due to a technical difficulty but if you fancy a look up then check the website just here…..

While Dad, Regan and Libby were on the ride, Penny and I went to explore the other downstairs areas that we had not seen yet. We looked at and played with magnet blocks and marbles, strong electrical magnets, motion wheels, music wheels and lastly we found the sand with colour changing lights under.

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Penny loves her sand at home, so it was no surprise she wanted to be and playing with that. We spent a good twenty minutes scooping, moving and making shapes in the sand. Turning the lights on and off and making them change colours.

By this time the rain had cleared up, Mark and the kids had rejoined us and we were all hungry. A wander up to McDonald’s was a unanimous decision, so off we went.

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Mark and I love Newcastle for many different reasons but we decided with Libby’s new found love of football we decided to have wander up too St James’ Park.

Walking up to the ground never fails to move me and like a blubbering idiot that I am I was in tears by the time we got to the East Stand Corner. For all Regan has a cool exterior to him I have to say he was taken a back by the sheer size of it when you get up close. Libby could not quite get her head around the fact there was a football pitch in the middle of it.

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We had a wander round the Club Shop and then up to the Main entrance. It has been a while since I was last up there and it was lovely to see the Bobby Robson statue. It certainly boosted my appetite to get to some games this season.

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It was scorching at this point and we had three very grumpy children so we had a slow walk to the car, taking in the city walls,  with a history lesson from Mark and then we took a steady drive home.

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All in all in was a very impromptu day and a lovely one at that. I do love days like that, but could only ever do them with someone in tow. I am not as impulsive when I know I have to do it on my own.

xxxxxx

Back 2 Life….

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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…..

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Date Night….

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Impromptu Family Day….

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Libby’s First Football Match…..

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Results Day….

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The Journey Across the Border….

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Haven Holiday…..

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Zoo Adventures…..

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Kids in the Kitchen…..

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Nothing beats a cup of tea….

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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

xxxxxx

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