Winter Sunsafe

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Having Gorlin’s Syndrome comes with it’s responsibilities if we want to stay well.

There are so many things we should and shouldn’t do but one of the main things we have to keep on top of is keeping our skin covered and protected.

We all need sun cream in the summer, but in the case of the girls and I, it has to be a year round affair. In the winter the application routine isn’t as strict as the months of spring and summer but we still need to be sun aware and make sure to Slip, Slop and Slap our body parts that are exposed to the sun.

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As a rule I use a moisturiser in the winter that has UV protection included. I do however have the added issue this year of no hair. You would think having no hair would cause less problems, but with it comes a whole new set. Not only is there the constant up keep of the short hair, but there is the intense heat loss. (I have taken to wearing a hat in bed it is that bad. Saying that I think this is down too the Erivedge too). Then there is the need to keep my scalp protected in the sun.

Calypso Sun care offer a wide range of products and in amongst them is Scalp Protection Lotion.

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The formula is SPF 30. The non greasy formula comes in a spray bottled and is to be generously applied to the scalp or hair. It is water resistant and quick drying but the advice that Calypso give is that you should reapply frequently due to perspiration, swimming or towelling.

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I found the spray to be pleasant in fragrance and also very easy to apply. There is nothing worse with sun creams and lotions than the thick greasy feeling you get. The ones that you have to massage and massage until it goes away. There is none of that with this lotion as it is thin and clear. I would describe it as having a thin oil texture.

One of the things we have to do as parents to the girls is too make sure that the school are very aware of the girls needs. Although there are not many, there could be, heaven forbid, anything went wrong.

The school knows that they need to wear sun cream and they help them with this, however they do prefer them to able to apply their own cream. Libby has become very good at doing so and Penny is getting there slowly but surely. I am always on the look out for products the girls can use. Calypso do a Once a Day Cream that is ideal.

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The cream is 40 SPF and is Photostable. The treatment is once a day and is water resistant. Very easy to apply and the smallest amount goes a very long way. The product smells very pleasant and isn’t remotely greasy. It feels like you are applying a moisturiser rather than a sun cream.

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(Before school this morning, hence the PJ’s)

The test of course with this one was with the children. Penny was very impressed with the smell. Libby has applied it herself and said she really likes the feel of the cream. She said it was far easier to rub in as it disappeared quicker than the brand we currently use.

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All in all I am very impressed with the products. These products are perfect for anyone. For us in particular they are great for the everyday use we need them for, especially during the cold months. (We have to use an SPF 50 when the warmer weather starts to kick in). Calypso have some exciting products that are available on the high street, and I can not wait to see what else they have in the pipe line.

Calypso can be found online and via Social Media. (Facebook, Twitter & Instagram)

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MOH’s Surgery

Seems my range of posts is bigger than I thought it would be….

(Let me apologise for the serious lack (none) of photos in this post, I just couldnt find any that seemed to fit in )

After promising a post about MOHS Surgery, I felt it about time I covered what it actually is.

“Mohs surgery is a precise surgical technique used to treat skin cancer. During Mohs surgery, thin layers of cancer-containing skin are progressively removed and examined until only cancer-free tissue remains. Mohs surgery is also known as Mohs micrographic surgery.”

(www.mayoclinic.org/tests-procedures/mohs-surgery/basics/definition/prc-20014261)

Before I go in to my story, (if you are about to have MOHS it may not be worth you reading this just yet), this is my opinion on my circumstances.

MOHS Surgery is a very successful way of removing BCC’s, it works and it works well. I believe however it is best if you have only a few isolated BCC’s, not a mass like I had. If you have one, two or three and they need removing its great.

In my case, I will always have one or two that need removing, I will more than likely get regrowth where I have previously had surgery, so for me personally I deemed it as pointless in the end, especially after the following experience….

You are used to my no holds bar approach by now, so here goes….

In one of my many consultations following the birth of Libby it was suggested that I see a Specialist Dermatologist up in Newcastle. This specialist had a mass interest in MOHS and it would be a good idea for me based on the fact that it was more precise. (Instant thoughts, great news) It would mean no more re excisions because the knowledge would be there that total removal had been made on the day of surgery, I would be sent to see my plastic surgeon after and he would patch me up and that was the job done.

If only it were that simple…

I saw the specialist, who sold the technique to Mark and myself and I was put on the waiting list.
The dates were coordinated with both surgeons and I was booked in for about 6 weeks later.
The weeks flew over and there I was 8 am in The Royal Victoria Infirmary in Newcastle awaiting the procedure.

(To paint a clearer picture, at this point in time I had approximately 15 potential BCC’s to be removed, when I went/go for surgery with Plastics, I have one procedure, done under a general anaesthetic and that’s it done with for 6 months)

I went in, the surgeon explained to me that they would only be able to excise three, possibly four growths on each visit. (Instantly alarm bells started ringing, 3 or 4 at a time meant at least another 4 or 5 surgeries and two days of surgery not just one) I went with the flow, convincing myself that it would be the better option.

The local anaesthetic came out and they numbed areas that they were going to perform surgery. Now I can’t remember in which order they operated, but the areas included my inner ear, my eye lids all over my nose and upper lip.  (Local anaesthetic is unpleasant at the best of times, but unless you have had it in your eye lid or on your nose, you can not possibly imagine the pain.)

All numbed ,up they removed the areas and sent them away for testing. My wounds were covered with dressings, (left open), and I was sent along the cafe to return at 1130.

Mark was sat waiting for me and we had a chat, he reassured me that hopefully they would have removed it all, just to stay positive and strong.

A cuppa and a Twirl later, I wandered back off. The results came back at 12 and I was called back down to the surgery room.

They explained that they had removed two of the three to their entirety but the third had remaining margins so they would have to do the same procedure over again. Of course this would be in the most painful of the three locations. (Now I remember this clearly, even though I don’t remember the locations, I do remember that on each of the three occasions I subjected myself to MOHS that it was always the most painful they hadn’t managed to remove to its entirety).

So, at 1215pm, they pumped the area full of local anaesthetic again and took more skin away. It was sent away for testing, and again I was sent to the canteen.

I went along and simply couldn’t hold back the tears any longer. I swore this would be the first and last time I went through this. My pain thresh holds had been pushed. (I think in situations like this we prepare ourselves to a certain degree for what we are about to go through and the adrenaline takes us through, but that’s the first time, not the second and what ended up being a third time for the day.)

I went back down again, to be told that again they had not removed it all, so more local anaesthetic, more pain and the skin was sent off again.

Third time lucky, I was going home via University Hospital of North Durham, with open wounds for the Plastics Team to have a look at before I had to return to them on the Wednesday to be sewn and grafted back together. (Luckily my surgeon saw the state that this had got me in and said I think you have had your fill of local anaesthetic for the week, lets do a general.)

All patched up and healed, four months later I went back again. Yes, it had its disadvantages but they had managed to remove the growths to their entirety. Maybe another go wouldn’t be as bad, they would get them first time surely. (you already know the answer from earlier in the text). Third time lucky for the second lot of MOH’s I went through and the same the third time I went through with it.

After the second failed attempt on round three I was to be picked up off the floor, I came out to find Mark and just broke down. The surgeon caught me crying in the corridor…..

When I went back in I was sobbing when they told me I was going to have to have it done for the third time that day, he reassured me that if he didn’t get it all this time then he would let plastics take the rest of the action under a general anaesthetic. I explained to him that there was no way on earth I was doing this again. It was too intense and too draining, with two children at the time, one of them under one, it just wasn’t the right course of action for me. He told me to go away and think about it.

So third time lucky again, I set off home via Durham and the plastics team. My surgeon took a look at me and asked if I was ok. Well we all know that this question should never be asked of an overly emotional woman.

I broke.

I asked him if he would take over my care for surgery again, this was no good for me, could he please remove the five last remaining ones when he had me knocked out for my repair.
He made sure I was certain and arranged for me to be in theatre for an extra hour and a half.

All be it, I woke up in agony but I knew that that was it for 6 months. No more two days in surgery in one week, no more staying awake during surgery, just peace in the knowledge that I would have a general and be able to focus all my pain tolerance levels on dealing with the pain post surgery.

Now this was a few years ago, things and techniques may have changed, but for me the only way I have found, to have the BCC’s removed is by surgery under a general anaesthetic. It works….for me

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What is a BCC? (In my words)

So I have read through my posts and have noticed that I mention the BCC’s an awful lot but as yet not really defined what they are.

A Basal Cell Carcinoma (BCC) is a form of skin cancer. (They can also be known as Rodent Ulcers)

The growth, or cancer if you prefer, grows from cells deep in and around the hair folicles. Most commonly it will appear in the areas that the sun sees the most of such as the face, head, neck, eyes and nose.  But basal cell skin cancer can develop on your back or lower legs. In fact, in the case of us Gorlins patients it can appear anywhere it feels like. In none Gorlins patients it is more likely to be found in people of middle or old age.

Two of the most common questions I get asked is, “What do they look like?” and “Does this look suspicious to you?”

THIS IS BY NO MEANS MEDICAL ADVICE, SIMPLY MY OPINIONS, I WOULD ALWAYS ADVISE ANYONE WHO IS WORRIED ABOUT A SUSPECT SPOT/LUMP TO SEEK MEDICAL ADVICE.

(Formal, cover myself statement made, sorry for getting all shouty)

Typically, the growths start out looking like a small spot/skintag.

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As time goes on the skin breaks down in the middle of it (Ulcerating) leaving a scab. If allowed to grow the growth will start to look like a mini volcano.

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As the skin in the middle breaks down the growth widens in area and expands. This can happen quite rapidly.  It is extremely rare for a BCC to expand an cause a secondary cancer as we have such excellent care that they are picked up on a long time before it would get to that stage.

I have had BCC’s that have laid under the skin and presented as Rosatia, I have had ones that have been dark patches of kin with a halo and I have had them in places a doctor would never imagine you would get them.

I look in that bathroom mirror everyday dreading seeing another, i brush my hair everyday with the fear of knocking the head off one that is possibly lying in hiding, Mark lies next to me in bed and dreads finding one I can’t see but most of all every little blemish that we find on the girls gets inspected to witin an inch of it’s life.

There are several “sub categories” of growths and below is a link for you too follow if you would like to know and see more. I have also included a link so you can have a look at pictures of how they can appear.

Basal Cell Carcinoma

Cancer Reaserch Basal Cell Carcinoma Information