I presented with one BCC in April and ended up having 13 removed last Wednesday.
After a busy day last Tuesday visiting the amazing Crook Hall and Gardens in Durham (post to follow in the next couple of days) and a family funeral on the afternoon, I took the sheers to my hair and gave myself a number one all over. (I had also spent a lovely day on the Monday buying hats and bits and bobs in Primark)
Needs must, and it did mean that I located a couple of BCC‘s and for all they seemed nothing on the surface, they had progressed under the skin.
I spent four hours in surgery and for the first time in a very, very long time, I gave in and stayed overnight. I was in massive amounts of pain and my blood pressure was reflecting it.
It was a very restless night but I was very well looked after and despite the doctor taking quite a few hours to come to my rescue the Nurses kept me topped up and I managed a few hours.
I came home with stronger pain killers than I would normal and they did their job. Although I am still struggling with the pain in my head. I had my facial stitches and my graft dressing taken away yesterday and they are all looking good. However, my head feels like it has been in a vice and my next appointment cant come soon enough so I can get my head stitches out.
On Tuesday I start the Erivedge…….the saga continues…
Homeserve UK are this week celebrating the 1st birthday of their blog “Ketchup” (named as it is a household staple). The blog has been a massive success and has a team of writers from all walks of life, their blog post are just as varied with people blogging about relationships, family, activities, food and drink, hints and tips that are priceless and so much more.
“Ketchup” having their 1st Birthday got my thinking about my First Year experiences, there are so many I could write about. Like people over on the “Ketchup” blog, there are 1st Birthdays, 1st anniversaries and so many more but I decided that this was the perfect opportunity to write about ……..
My First Year without my Dad…
(In his younger football days)
It has taken a long time to come up with a reason to write a post about losing My Dad and despite having typed several posts it has never really seemed to fit in with my blog posts.
On the 24th of December 2012 my Dad turned 59.
It wasn’t the joyous occasion it had been in years gone by. My Dad loved a drink, maybe a little too much, but in early September he lost all feeling in half of his body and we all feared he had succumbed to a stroke. Numerous tests and appointments later we found out that he had Polyneuropathy, which was more than likely induced by his love for a drink.
As the months went on he didn’t improve. Although he followed Doctors advise and cut his intake right back we were losing him to this horrible condition.
We had been over to see him quite a lot and Mark had helped him to the toilet and done things for him that only a man could do. He hated that we had to help him and gradually he was losing his independence, and I suppose, his pride as an ex forces man.
(Attending a wedding 2010)
Christmas Eve, his birthday, we went for lunch with him. Something of a tradition. We would go and treat him too lunch and he would treat us instead. Birthday presents were exchanged as were Christmas presents. This year with him constantly having cold feet and hands I had bought him amongst other things a pair of microwaveable slippers. (I was really quite happy with myself, what a nifty little present).
We decided that we would take him to the pub in our car and that way he didn’t have to wait for his partner and maybe make him feel like he wasn’t relying on her all the time. He got up with the help of his walking stick and we helped him to the car.
At the other end I helped him out, despite his protests for help, I helped him out and at that point I saw him, what I can only describe in one way, give up. Up until this point he had avoided me helping him and it was like taking help from me, was one step to far.
He didn’t say anything and we went in for lunch. He didn’t eat as this was one of the things that had become really hard for him to do, he had no appetite at all and was disappearing in front of our eyes. Instead he sat in the big armchair and contently watched the kids eat their lunch and had a laugh and joke on with Regan. In hind sight he was saying goodbye to him and Libby but then hindsight is a wonderful thing.
We finished off our lunches and time was ticking on, we needed to get home and see if Santa’s Elf had delivered anything for Christmas Eve. We said our goodbyes and had very long, lingering cuddles.
“I love you more than you will ever know, don’t forget that and it will all work out for you”
“I know Dad, stop being so sentimental”
“I can’t help it, I won’t see 60, so I have to get it all out and off my chest now”
“Shut up Dad, of course you will see 60. I will call you tomorrow when you have all had lunch”
He shook Marks hand and told him to look after me, and we left.
I was in tears on the way home, he wasn’t getting better, he was getting worse and I could see how much he hated being dependant on other people, he was an independent man and handing that control over was killing him.
Christmas Day came and went without a hitch. I sent him a couple of texts and pictures of the kids and he replied with happy texts. Six o’clock came around (just before the Doctor Who Christmas Special) and I gave him the annual Christmas Day phone call. (Now to some it may seem odd that I didn’t see him on Christmas Day but since him and my Mum split up this is the way it had always been. Dad went out on his birthday and was generally in bed until late or carried on the celebrations, so this too us was tradition).
(Oh dear…part of a family shot)
He was full of the joys, he had been up dancing, singing and enjoying life. (Far from the frail man we had seen the previous day). What a day he had been having. We thanked him for our gifts and so did the kids. I told him how much I loved him and that he was clearly having a good time, so I would let him continue and I would call him back tomorrow at around 1pm, so that he had chance for a lie in (his partner had her youngest and the grand daughters staying for the night so he had been up early). He insisted I didn’t need to too, but I wanted too.
Boxing Day morning and Mum was coming over to see us. She had been working on Christmas Day. She called to say she would be there just after one. I got about building Lego and doing general post Christmas Day stuff. Tidying up the bomb site that was my living room and before I knew it, it was after one and my Mum and her Partner arrived. As they walked through the door the phone rang.
Mark answered and the conversation was sketchy. I am busy saying to my Mum, “Aw that will be Dad, told him I would call around now”.
It was Dad, well it was about Dad, he had got out of bed and never got back up. He had got up, got dressed, managed to get himself to the mirror and collapsed. Despite his partner doing CPR until the ambulance arrived, he had died before he hit the floor. (The post mortum a week later showed he had chronic hart disease and suffered heart failure)
Thank goodness my Mum was there, we jumped in the car and headed straight through. The journey through is blur now. I do remember phoning people to tell them, I was so composed and I really am not sure to this day how.
We arrived and I saw him before the undertaker came and took him away.
The days to come were long and drawn out, with him dying over Christmas the whole process was drawn out. Along with that came the complicated mess that he had left behind with his will. That however is another post.
Feeling very isolated having been given a complete mass of information and to the point of overload from those close and not so close to him, we headed in too New Year.
My first New Years Eve without Dad.
(One New Year, many years ago, 2001 I think)
New Years Eve, when I lived close to him, was always spent with him. New Year is about partying and he loved a good party. No party was complete without a sing song and a rendition of Flower of Scotland by the man himself. (To be honest it would normally end up with one of us arguing with him about getting him to bed).
This New Year we had the kids up late, we celebrated Mark’s birthday and come midnight we first footed. I had spoken to my Mum earlier in the night and wished her all the best for when it came, but I messaged her to say Happy New Year, then I dialled my Dad’s number……..
Bang! I remembered, it hit me like a tonne of bricks and my composure left me. It wasn’t helped with the amount Cava I had drank, but reality kicked in.
They say the first year is the worst and I really was starting to realise that this might be the case.
New Year out of the way, it was time for the funeral.
The day before the funeral, Mark and I went to the funeral home, first time in a funeral home, and I was determined that I did not want to see him, but I did want him to have the photos that he carried in his wallet with him. The plan was Mark would go in and place them with him, as well as adding a sprig of Heather too his lapel (he was laid to rest wearing his full kilt set).
We were greeted at the door and shown to what I believed was the waiting room. Upon us entering the room, the gentleman that had greeted us flung open a door and said
“There you go”.
In front of me in all his glory laid my Dad. GULP!
Looking back, seeing him is the best thing I did. It made the following day far easier and it made the whole thing a lot more clear in my head.
The funeral cars pulled up, I carried his flowers to the car and gently kissed the coffin. I held my composure from the minute we pulled away until the minute I got home. No tears, no weeping and certainly no wailing. (Well I had a little stumble on the way out, leaving him there was not something I wanted to do, but what was I going to do though? Take him home and put him in the shed.)
Leaving the wake, I held my head up high and went home to see my babies. I knew I had done him proud and no matter what happened from here on in I had the support of those around me.
I was on auto pilot in January, surgery loomed and only 10 days after he was laid to rest I had 13 BCC’s removed.
This is where the story takes a turn, quite suddenly my focus changed, it now wasn’t about me and how I would get through the turmoil of his loss, but to the baby that I discovered I was carrying only two weeks after surgery.
(Our Wedding Day 2011)
Mark and I had been trying for a baby since we had got married the previous year to no avail. The only baby we had tried for and the only one that took and age to conceive. We were of course delighted, but there was a worry that I had been pregnant during surgery. A pregnancy test had been negative before the surgery but I had clearly been early stages, too early for it too be picked up.
I told Mum and she was over the moon. I desperately wanted to call Dad and tell him but I couldn’t, because he had gone. I am firm believer in life after death and couldn’t help but think this was someone’s way of taking the sadness away and making me think less about the things I would miss.
Sadly, two weeks later I started to cramp up and ended up in the Out of Hours clinic, presenting with a miscarriage.
Gutted, we came home and stayed up all night, talking, putting the world to rights and playing on Minecraft. (If all else fails, play Minecraft, its amazing how much you can sort with a good game)
February came along……My First Birthday without him.
(Mum and I on my 21st Birthday)
Mum and I always go out shopping for my birthday, that’s our tradition. We go out we have some lunch and we generally put the world to rights. Equally, Dad and I used to have the tradition of going to the pub for a bite to eat and to celebrate with a bottle of something nice.
(Dad and I the day after my 21st Birthday)
Knowing that I would wallow, with the events of the last couple of months we arranged a pre birthday night out with Marks brothers and his sister in law.
(Debbie and I on that night out)
Just what the Doctor ordered. I did have a bucket full of tears at the end of the night. On the way to the taxi we walked past a busker who was playing “Father and Daughter” by Paul Simon and I was away.
But it was another first and I had managed to get through it.
There is very little you can do about those fleeting memories, the little things that remind you of them. The walking across the bridge in town with a bagpiper, the Scottish Rugby team singing Flower of Scotland, the aeroplane flying in the sky and your daughter pointing up and shouting “Look Mummy its Granda” or the photos that fall out the cupboard when you go in to get something out. You well up, you get on with your day, and cherish that they popped in to your head at that moment in time.
April came round and so did another positive pregnancy test. This time I felt so much more positive. We were in the zone and I was focused on what was too come. We knew we didn’t want to have all the tests we had with Libby, we had tried for so long and had gone through such a time with Dad and the miscarriage, this baby was meant to be. We would have all the care we had with Libby and when the baby was born they would take cord blood away and gain a genetic diagnosis from there.
We went for our 12 week scan to be told that the baby would be due on the ……29th of December. Someone really did not want me to sad at Christmas. Our minds would be far from the previous years events come the time.
The appointments we had all seemed to fall in around events that you would dread in the first year of mourning.
Fathers day was hard. It was odd not buying for him, but I made a bigger fuss of Mark and made a point setting a side half an hour where I could focus on my Dad, where I could sit and have a good cry and reflect. Do you know what though?
I didn’t cry and I didn’t have that half hour, he was with me and I knew that, I did think about him. I thought about him all day, but I didn’t cry, instead we had a laugh about him and what he used to do.
We went away on holiday a few weeks later and I spent a lot of time worrying about my bump. My mind was preoccupied with thoughts of babies and what was to come with this ever increasing bump.
We returned a day early from holiday for our 4D scan. We found out that she was developing well and there was nothing unusual to be seen. Ooh and we found out she was a girl, but then you guessed that already.
By the time my 32 week consultant appointment I was stressed. I had become increasingly concerned over the due date of bump. I would have to have a section and I knew that they would try and get me to wait until the 27th of December for it. In reality that was a reasonable date but in my mind I wanted to be at home for Christmas. What if I went in to labour on Christmas Eve? Then I would not be there for the kids for Christmas and although I was happy to go in to labour on Christmas Day I would prefer to know she was here and safe in our arms for Christmas.
I sat down with my consultant and explained to him what I would like and why I would want it that way. We talked about all the firsts and we spoke about what my options were and he promised to try and sort something out for me.
He went away and came back and said that we could have a birth date of the 19th of December. It meant the kids would be at school, she would be here in plenty of time for Christmas and I could relax knowing that I wasn’t getting rushed away from Regan and Libby.
Christmas shopping done, baby all prepared for, and all ready for the off we embarked on what was to be our last birthing experience.
Penny made her arrival via section at 9.27 am on the 19th of December. Healthy and happy she was and still is a gem.
These are things that you want to share with your parents. My Mum came in straight away and met her. My Dad never got too meet her, I am sure she won’t be the only grandchild he never got too meet but she was the first. Saying that, people say they have been here before and you would think she had. She is full of personality and is in her own little way a Tasmanian devil in disguise. She is lovely and butter would have not melted in my Dad’s eyes.
On his 60th Birthday, Christmas Eve, we were distracted. We had a new baby, the house was madness and we had a house full of visitors on and off all day. The kids got their Christmas PJ’s on and left Santa his treats, this year Santa got a miniature brandy.
With all the presents set out and a good film on, baby fed and asleep, I ran a bath and let my tearful, baby blues outburst run away with the bath water. Santa sipped on his brandy and raised it to my Dad’s first birthday away from us and I hoped he was celebrating up high.
The year of firsts was almost up and we had been blessed with such an amazing gift to help distract me from the pain.
(My First Christmas)
Christmas Day came and went without a hitch and before we knew it we were under 10ft of wrapping paper and it was Boxing Day. A year on from his loss, come one o’clock, the year of firsts would be over.
We raised a glass to him, we talked about him and we even looked at photos. He is sadly missed but there is no need to dwell on the past.
There was still a massive complicated mess in his wake but he had made sure that I did not have to worry about that. I simply got on with my life and left the complicated bits behind. I lost touch with a lot of family as a result but it was for the good.
(Memorial Tattoo for Dad 2016)
The year of firsts following my Dad’s death were hard but look where I was a year on. Without the support of those closest to me, My Mum, Mark and the kids. I would not have got through it so easily. Nearly four years on and things have got easier. I have achieved so much in that time, he would be proud and proud of how my munchkins are turning out. There are still days that I hear Flower of Scotland and I get choked, I can’t walk past a bagpiper without welling up, and on Christmas Eve I will always raise a glass to him.
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 🙂