This is my wife Carol  story of the day we got the news

It was a day in March, when a blood test and CT scan result revealed that Scott had Liver Cancer, four tumours in the liver to be exact and no treatment available other than a “Liver Transplant”.

I cannot begin to explain the feeling in that moment, but a black hole opened up and I was thrown into the bottom. The consultants that dealt the blow became my enemy and unknown to them became my focus of blame. Why Scott?  Why us? Where did it all go wrong? That day begun a long wait of unknown, questions unanswered and began my personal quest for research. The moment I returned home my grief filled time was filled with looking and researching for any glimpse of hope that maybe there was treatment other than transplant that maybe there was some mistake and it would all be a nightmare that soon would come to an end.

I am a staff nurse trained in compassion and support all part of my job role but at this time I could not see any light and it was Scott who was to show an inner strength to get us both through the initial few days and weeks of telling family friends the devastating news. Friends who you thought would support you suddenly became invisible whilst others became life savours in their support and offers of coffee outings but it’s a funny thing also that even surrounded by people I suddenly felt very alone.

The assessment week took place 20 days later, we were told Scott was lucky, this assessment week can sometimes take longer than what we had to wait. It also became very real to me that although very aware that there are hundreds of people dealt a live threatening diagnosis suddenly only one mattered to me SCOTT. The week was to become an emotional roller coaster, the outcome the decision that Scott was physically and mentally able to survive the transplant operation. 

Transplant means always prepared the call that can come day or night as death knows no time and through death the gift oforgan donation Scott will get his chance of life and until then we wait. Gareth and Lauren our son and daughter have contact details and know they can be called out at work or wherever they are. I have hospital bags packed with essentials for both of us. I ensure every night we are ready and the house is tidy, the arrangements for someone to look after our dog Charlie are in place, small things that did not mean much before but are so important now. Life is on hold, mobile phones being charged and having a signal are a priority if we are not in the house, a simple meal out or a drive to get away for a few hours all becomes planned around a signal for just in case, we were advised waiting on the transplant list is hard but it is not until you live with the transplant list that it becomes very clear how hard and life changing it really is.

My focus is selfishly Scott, I await every ringing call as the one. In the beginning I thought it was a nightmare that would end soon  I am now fully aware it is not going away I live for that call but I am also very aware that I will need to one day to hand Scott over to medical staff and nurses that are not me and I will have to sit on the side and rely on their expertise to see my husband through his transplant, the road ahead is hard awaiting transplant but I am equally aware of the long road ahead of the possibility of organ rejection to the multiple drugs required and their side effects on Scott, our life will remain for a long time yet unknown but Scott and I have a good relationship and a very strong friendship , it has stood the test of time through thirty years of marriage and will continue to see us through again.

Shop for puppy leads …come back with cancer

What I thought was a quick trip for blood results, and on the way home, nip in and buy puppy leads for the 2 new lab pups that were coming in 2 weeks’ time, turned out to be one of the worst days in my life.

I remember the excitement in the car journey up to hospital ,Carol & I planning where to let the puppies sleep ,also giving our old lab Charlie a space for chill out time ,holidays ,get them used to kennels ,names for the boys ,leads etc ..Then to be honest the rest of that day is just a blur , I just remember snippets “sorry to tell you …Cancer…survival …Liver transplant “

We just sat in the car and thought “What just happened in there?” 

We cried, held each other then sat silent for a while.

Looking back I think that is one of NHS downfall. We got life changing news ..then your left on your own to go home ,nobody stops you on the way out “How are you.?” Or booklets or leaflets, you are just left at the edge of a cliff looking into an abyss.

 Next challenge …telling your family and friends ,but it’s something  YOU HAVE TO DO ,unfortunately at this time Carol had took this news very hard ,and in a strange way this helped me ,I realised that I had to roll the sleeves up and take on this fight now to help and protect my family ,and in doing this I set myself targets to survive .

20 days later I go into hospital to see if I will make it onto the “Transplant List “ 

Stupidly I thought everybody goes on The List ,but no ,it’s a week of tests from bloods ,scans ,bloods ,physical, bloods ,psychological ,bloods and fitness .Then at the end of the week the entourage are like God ..They decide if you make it or not..

So sleeves rolled up for my 1st target “MAKE THE LIST” …I was up every morning at 6am for a walk round the hospital grounds ,in fact ,I walked just about all day ,nurses made me carry my mobile so I was contactable if a scan or blood test was coming they could get me .Finally on the Friday I had my meeting to be told I had made the list ,I actually burst into tears ,that’s my first target reached. Just to put this in perspective the man in the bed next to me didn’t make the list, and he got 18 months to live.

This is a rollercoaster ride of emotions and wellbeing, some days you feel you could walk forever and others every step is a prisoner.But you keep walking, thinking of survival.

My next target was making people aware of Organ Donation through social media and other sources.

Organ donation Scotland actually phoned Carol and said there had been an increase of donors by 44%, then I actually contacted MPs and other big names to make people aware that you can sign up again, even like me you did it years ago with your driving licences etc, and now Scotland has become an opt out donor system (I think I’ll claim that as target 2)

Target 3 was the 27mile walk with Walk With Scott Foundation to raise money to buy Rempods …Target 3 completed and 5 Rempods bought.

The hard bits are the dark days, and boy do you get them, but I try to keep going for my family sake, no one else’s, just theirs.

I have discovered that people think Cancer is contagious, sometimes even just saying the word. I have been amazed by friends who you would have put money on for support let me down, and people that you wouldn’t expect to, step right up to the plate.

For me the hardest thing is being tied in and controlled by a phone signal and time.

If you go out for a meal,a picnic ..is there a signal?

Can’t go more than 2 hours from the hospital.

Taking the dog a walk…Am I near a road to get picked up?

I have thought long and hard ,and really I am not afraid of dying ,my fear is leaving my family to cope .I still have old fashioned values that I am there to protect and defend ,and if I pass I have let them down 

I also don’t understand when people say “I’ve not been in touch ,I don’t know what to say “ Try “Hello “ its so short and so simple !!

And another piece of advice ,if you have friends that are going through the same as Carol and I ,and you have asked the ill partner how they are ,then maybe ask the partner ,because it is just as hard for them .

Another thing I have realised, and please take this is fact. Get of your mobile phones and look about you, talk to people..Take your family for a good old picnic..Stop takingselfies and take surroundings.try a barbecue where no phone calls are allowed ,justphotos

I hope people reading this realise I am not being ignorant if I don’t reply right away with a text ,a call or an email .because sometimes you just want to sit at peace and in quietness .

I am on a death sentence awaiting a donor ,it’s a lot for your mind to take on

Yes I do get dark days, and sometimes really dark days ,but I give myself a talking too, roll up my sleeves and take on the fight 

Target 4. I hear you ask

Get this Liver transplant and get back to my family