10. The Long Weekend.

Opposite the hospital was a public phone box which faced directly to where my darling son lay fighting for his life …this was where I made my longed for calls to James. It was on this day that, when I phoned, he said that his Dad wanted to speak to me ,I was totally not prepared. The sound of his voice filled me with anger as he asked how Tony was ……
My reply was ,and I quote “How dare you, you the scum of the earth, after all what you have done, all the lies that you have said in court about my family , you have the nerve to ask me about MY son that you wanted nothing to do with !!!”
No answer was the stern reply …
James came back on the phone and I had to immediately switch to being Mum to my estranged 5 year old….. the world being a happy place…. nothing wrong ….cool, calm and collected … inside wanting to scream , cry, shout ,murder… and all the while looking at the hospital, where I had to go back and again hide all these emotions and stay strong .
Mums have to be strong ,after all it’s Mum who holds the family together , don’t they?

Tony’s recovery is slow but good, and he’s a model patient polite and very brave. The pain is now under control and the tube is removed from his nose.
A few problems arose over the weekend, unfortunately the catheter had leaked and had to be re-fitted which really upset him. Then in the evening the epidural leaked because the dosage was so high and morphine had to be given through his Hickman Line as the epidural drug was not getting through.
He was allowed to sit in a chair for 15 minutes and encouraged to exercise his lungs by deep breathing.

The waiting for the final results on Monday was taking it’s toll on all of us , but Tony in particular was very irritable , who could blame him…
David had brought Laurrie up to stay in the house with us that Clic had provided, the only person missing from my little family was James. I so missed him as did the others. There was that un-spoken fear as well in the back of all our minds ,for Tony and James.

9. A Time To Celebrate ?

After a very restless night Tony was eventually made comfortable as the dosage for the epidural was increased making him virtually pain free.
Unfortunately though he was now having trouble with ‘weeing’ and had to have a catheter fitted. Not very nice for a 15 year old to endure, especially when all that surrounded him and the other patients was a curtain. Still he was brave and it also helped him tremendously.

We were introduced to the Social Worker for Clic (Cancer and leukaemia in children) and were told that as he had now been officially diagnosed they could help us with things like accommodation.
To us this was a huge relief as the hospital was more than 125 miles from home and there was no way I intended to leave him there on his own.

Anyone who has read my previous posts will know that as this was all going on I was also deeply concerned for the welfare of my youngest son who was living with his father.
Just days before Tony was taken ill my youngest had drawn a picture and told me things that sent alarm bells ringing once again that all was not as it should be at home.
I had taped our conversation and taken it along with the drawing to our local Social Services Welfare Officer as well as a transcript of the conversation that they had requested.(This was the first time we had managed to get a recording )
I was told that they would look into it for me, but sadly Tony was taken ill and we were whisked off to Bristol before I had a chance to follow it through.
I was now able to relay these concerns to the Clic Social Worker who promised to find out what action had been taken….another relief (or so I thought)

The day seemed to get better, Tony was able to sleep most of it away, and was responding really well to the treatment.
Then the best news of all , our consultant came back from London to tell us personally that early indication showed that the Cancer he had was the one that could be treated !!
It felt like Christmas had arrived 2 weeks early….all the rest of my family were busy preparing for celebrations with their children and here I was celebrating that my eldest son had a ‘good cancer’ and my youngest was being investigated by Social Services for exhibiting unusual sexualised behaviour at the age of 5.
What did I have to complain about???
I was so torn between my boys and my daughter, I had Tony possibly dying in front of me, my youngest living with his father whom I was only allow to speak to when his father dictated I could ,and who I was worried sick about, and my daughter, at home, aged 17 who was worrying about us all.
How I missed my Mum so much… sadly she had died from breast cancer 8 years before at the age or 57 , and my Dad ?... living in Spain with his new wife who he married 4 months after Mum had died.(Perhaps a little bit of resentment there do you think ?)

8. Biopsy Day

He’s in so much pain today, an intravenous drip of morphine was given but had little effect .
They prepare for surgery but as he had a bad night he is really tired, scared and very irritable.
To have to leave him at the theatre door was such a wrench, I’m so frightened but have to hold it together after all we still haven’t been told officially…maybe they’ve got it wrong….maybe Tony was right ,it was just too many cola cubes ! Now your being stupid Sharon.
David and I went for a walk whilst he was in theatre, I hoped he would be in there for a while as that would probably mean that they could take this disease out of him now.
Sadly an hour later and he was being taken to recovery, nobody needed to say anything to me I knew in my heart that this was not going to be good news.
We were told that they had found several lumps, one was attached to the liver and another was by the bowel and could not be surgically removed.
It was then that they hit us with it…they were sure that he had one of two types of cancer, one that would not respond to treatment which would mean he would only have weeks to live. Or he could have the ‘good ‘ one which responds well to treatment.
So there we had it , the dreaded word, CANCER. He was all of 15 bloody years of age, why, why why?
Only weeks to live ? No this cannot be right …he’s my baby, did I scream cry do you know I cant remember, and that saddens me because I want to remember every last detail.
What I do remember (and later feeling guilty about it) was that when the surgeon came in to see us he was carrying a little white bag , presumably the tools of his trade. But in my state of shock, I expected him to open the bag and show us the samples that they had taken!! I laugh at my stupidity now but it took quite a while before I admitted it to anyone.
I also told the surgeon that I knew this was going to happen as I had been for-warned several years ago by a clairvoyant (That’s for another day). He must have thought he had a raving lunatic on his hands.
Now we had to play the waiting game , the samples were to be taken to London for testing to see which type of cancer he had the ‘good’ or the ‘bad’. How can you have a ‘good’ cancer ? even the name itself sends shivers down your back.
He’s brought back from theatre to Ward 13 to the bed with just enough room for the little plastic chair ,he had a tube in his nose to stop him vomiting, an epidural tube in his back to numb his stomach and a line in his neck for drugs to be administered.
David drove the 125 miles back home to look after Laurrie and I stayed with Tony for what was to be one of the worst nights of my life.
He was in so much pain and I couldn’t do a thing, he kept waking and crying he was just so frightened. At one stage he asked me ‘to let him go’ I remember the screaming in my head asking the so called ‘God’ to help me.
I was quite vicious to the nurse in the middle of the night as it was obvious that the epidural was not working and after several attempts of paging a doctor I was told that he had gone home and they were waiting for him to come back. Apparently it was only him that was authorised to give the medication. After what seemed an eternity I shouted to her to give me the drug and I would administer it my f******* self! Not the way that a respectable mother should behave you might say, but to be honest I’d have done anything to be able to relieve the pain for him and the fact that all I did was scream and shout a little abuse I suppose wasn’t too bad.
Well we got through the night, both exhausted, tomorrow another waiting day.

Written by: Mum

7. The Long Journey To Recovery ?

On arrival at the hospital Tony was just coming out of the bathroom, I can see him in my mind now. His skin was a ghastly mix of yellow and grey, he was in horrendous pain and tried his best to look the brave young man that he was.
While waiting for the ambulance to take us to Bristol he had to make several trips to the bathroom to vomit. This ‘disease’ was taking a grip so fast it was frightening, but as Mum I had to stay calm and focussed for him so as not to frighten him anymore than he must have already be feeling.

We left Plymouth at 8.45 am for the long journey to Bristol Children’s Hospital.
On our arrival instead of a large ‘State of the Art’ hospital that I was expecting it was an old building and we were escorted to Ward 13.

Not a room on his own as he had in Plymouth but a Ward full of extremely ill children, beside each bed there was just enough room for 1 plastic little chair.
Hey what did the surroundings matter ? This hospital and these fabulous people were going to make him better …
We were bombarded with what seemed like 100’s of questions and were then introduced to the specialist Mr.Spicer.

Again we were given a glimmer of hope as he told us that his first impressions were that it was a cyst as Plymouth had suspected and possibly some sort of infection.
We were then shuttled off for Scans, Barium Meals and X-Rays. By now the pain was so intense that Tony had great difficulty in even getting from a wheelchair to the bed .

Later that day we were told that the X-Rays had confirmed that there were 2 lumps, one in the liver and the other in the bowel. An operation for a Biopsy was booked for the following day and I had to sign a consent form for a biopsy, lumber punch and epidural.
David arrived later in the day and we decided that I would return home as there was nowhere for me to sleep ‘apart from the plastic chair’. It was agreed that I should leave him to rest as much as possible as tomorrow was going to be a big day.

This decision broke my heart, I didn’t want to leave him in pain on his own but I was out-numbered , in a daze. So many emotions even now they are so real… God who said putting this in writing would be therapeutic, sorry readers will have to continue another day.