Friday

15. The Day His Hair Was Cut Off ....

In Hospital Again
Today was truly a day of mixed emotions lots of tears, with sadness, anger and thankfully laughter, yes laughter something that had been non-existent in ages.
We were told that the type of cancer that Tony had, that following treatment he would have a 95% success rate of surviving. With such a high percentage everyone was filled with optimism that he could beat this.
We were given a choice in treatment, we could go down the tried and tested way which would be 6 months of chemotherapy, or we could elect to go into a medical trial scheme which basically meant that we would be randomly selected for various other types of treatment all involving chemotherapy.
This we were told would hopefully have the same outcome but would help new protocols improve.
It was not an easy decision at all to make and as Tony was nearly 16 I felt it only fair that his feelings should be taken into consideration and that it should be a joint decision.
Although I was not completely happy we decided to elect for the Medical Trial, Tony was adamant that he wanted to help other children…
The treatment that was randomly selected was a 3 month course with stronger drugs. We had been told that some of side effects of the chemotherapy would be hair loss and sadly probably leave him infertile.
It made me mad that all the consultant seemed to be worried about was the infertile side of things and was insistent on him providing a sperm sample for storage for the future. He made a strong case for Tony’s future by saying that he would be glad that he had done it when he got older. Although I could see the logic in this I was just desperate to get the treatment started, but until he had provided his sample, chemotherapy would have to wait.

So Tony decided that as he was going to lose his hair anyway he would have it shaved off now! I couldn’t believe what I was hearing, here was my boy with his ‘curtain’ hairstyle stuck to his head with hair gel, asking to have it all shaved.
The Clic social worker lent us a camcorder to record the event and one of the male nurses called Richard came in on his day off and did the business!
Some of the conversation was x rated but we were all crying with laughter as we were told what to expect at the ‘sperm’ hospital.
So off came the locks and underneath emerged a young man, so very, very handsome. His eyelashes were so long that the young nurses were actually swooning over him. Gone was my little boy in one head shave , here I was honoured by being given the chance to see the man that he was growing into.


Oh God Tony I miss you so much darling…
Sorry readers I’ll have to stop for a break here but please come back..


Written by Mum

Saturday

14. The Chemotherapy starts ...

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The following few days there was a lot of improvement in how Tony felt as he was virtually pain free due to the morphine. This obviously helped a lot with his general mood as well, and he had the attitude of 'Hurry up and get on with what needs to be done, I want to get out of here'

Laurrie had stayed in Bristol with me, and David returned back home to work. The days were spent trying to keep Tony entertained which was really difficult as at 15 all he was really interested in was music, cars and girls... Oh and his hair! The fashion at that time was a centre parting with his hair draped either side like curtains, then, to hold in place a ton of hair gel was applied ...and they say women are vain !

All of us were missing James which was really hard as I had been unable to explain to him what was happening over the telephone, and I hadn't yet been able to see him since his brother was admitted to hospital. More to the point he had not been able to see us and was probably feeling VERY un-setlled and insecure.To make matters worse we had a message from Social Services in respect of the tape and drawings that were provided before we went to Bristol, still didn't have enough evidence for them to re-visit him!

This was a real kick in the teeth as I was convinced that this would have been the 'proof' needed, but no I was told that I had asked James too many 'leading' questions. So there we were back to square one , James living with his father with who knows what going on and Tony fighting for his life. But still Mum had to keep smiling for the sake of the children. What message would they read if I couldn't hold it all together?

David came back up to stay the night with us at Clic House and while at the hospital he wrote the following in my little black book:

I (David) arrived at 5.10p.m to find Tony with Mum, he seems relaxed and looks like the Tony I know. I watched him make his way to the toilet with his drips in tow and it made me realise exactly what he has gone through. We watched a video >

Monday

13. A Summary Of My Past

This post is a summary of my past to give you all a little insight into my background. It will also enforce in me the reasons why I am writing this.
As I have said in previous posts I am not an author I am just an ordinary Mum and therefore my writing maybe a little confusing for some. It is a roller coaster ride for me, as my life has been. I hope you will stay for the duration as it is my aim to keep my son’s spirit alive ….

At the age of 18 I left my parents home to start being independent, my parents and 4 sisters were not happy about this and all refused to talk to me for several months. For the next 3 years I became rebellious and a party animal, completely lost and really only ever wanting to settle down with Mr. Right and have unconditional love.
I then met my first husband who never met the approval of my parents , they saw what I couldn’t and so when we married all my family apart from one sister refused to attend. I went to bed that evening and cried myself to sleep knowing that I had made a huge mistake , but as I had been brought up to believe that marriage was for ever I knew I had to make a go of it.

I went through my first pregnancy with no contact from my family , until at 31 weeks I was rushed into hospital with
pre-eclampsia. My parents then made contact and my daughter was induced at 36 weeks weighing just 3lbs and 5oz.
My husband by now had shown his true colours, I was married to a dirty, lazy , compulsive liar and
hypochondriac.
In the first year of my daughters life we moved 3 times , the last being to a hostel for the homeless. Whilst there she stopped breathing and was rushed to hospital with what turned out to be
whooping cough.

My marriage was unbearable but I was not strong enough to admit defeat and instead became pregnant with Tony thinking this would help the marriage. Again through this pregnancy I fell out with my parents over my husband, and once again I had no support from the family. They never saw Tony until he was 9 months old.

In 1983 I was just rebuilding my relationship with my parents when my mother was diagnosed with breast cancer . At the same time, my husband decided to convince himself that he was dying and forced himself to be sick every evening , I was unable to get any help for him and was told by our doctor to go and see a priest !This was a real strain on our relationship as he was trying to 'compete' against my mother.

Just before my daughters 4th birthday she was rushed to hospital, as she woke one night unable to stand or walk due to pain in her legs. Following 3 weeks of tests and an exploratory operation it turned out that she had an infection in the bone, a week of antibiotics and she was fine.However during this time she was in traction and X-Rays showed a shadow which we obviously feared the worse.

After years of mental abuse my marriage eventually broke down, a very upsetting couple of years ensued with me having to obtain a court injunction to keep him away as he threatened to kill us all. He eventually stopped all contact with us when he failed to turn up for a court hearing where it was ordered that he could only see the children under supervision.

I then met and married a soldier but sadly as he was away for the majority of our time together we both led very separate lives and the marriage only lasted for 3 years.

I then met James father and shortly after meeting, my mother lost her battle against the cancer. During the years following my divorce from my first marriage my mother and I had become incredibly close and I took her death very bad.
She died in the July and only weeks later my father announced that he had met someone else who he planned to marry. This was devastating for me and I could not forgive him for what I felt was betrayal towards my Mum. He had not even interned her ashes and had moved in with another woman. I could not attend their wedding and went to the cemetery instead.
Feeling very vulnerable after Mums death and my fathers marriage I planned to have James who was born the following December ,and we married the following year to give the children some sense of security.

The following years were very unhappy, after James was born my husband divided the family in two by making it obvious that he loved James more than Laurrie and Tony. As they got older so it became more noticeable to the point that he virtually ignored them and only ever gave one word answers if they tried to speak to him. I had started a business during this time and he insisted on giving up his job to help me, even though I was against the idea.
His role in the venture was to do the accounts, but unbeknown to me he never had control of the situation and we ended up losing not only the business but our house as well as we were forced into bankruptcy.
We were moved into rented accommodation and I secured a really good job in sales as he said he was ‘not able’ to work. I therefore became the breadwinner and he became ‘house husband’ not through choice but necessity.
What transpired was that he was only looking after James and leaving the elder 2 to fend for themselves.
I eventually decided that my children HAD to come first and that this family divide was not healthy for any of them. We were at a point where he wasn’t speaking to me either and so I told him I wanted to end the marriage.

This was when the real nightmare began and where I begin my blog... In Memory Of Tony……………………….

Wednesday

12. Another Trip To The Theatre


We were sharing the house provided by Clic with a family from Greece, their son had been in Bristol Children’s Hospital for months with a brain tumour.
They had come over to the UK as a last resort, it must have been awfully hard for them as they had left a young daughter behind and the Mum never spoke any English at all. Most of the time she stayed at the house cleaning, that was her way of dealing with things.

It was only a week until Christmas but none of us were in the mood for celebrating, how difficult that was when you are in a hospital ward full of children!
They are so resilient it made me ashamed of myself for feeling despondent. So many were there with very serious illnesses, Cancer, Organ transplants, Cystic fibrosis just to name a few. And yet very rarely did you see a child complain or even cry , they put us adults to shame.

So many emotions were flying around, everyone was afraid and didn’t know what to say in case they upset you.
Here we were just Laurrie, Tony and myself in a strange City 125 miles from home.
David had gone back as he still had his job to hold down and the cats to look after.
Christmas was now on the back burner, but how do you explain that to your 5 year old estranged son ?

I was so torn how could I give my 3 beautiful children all this support without falling apart?
How could I tell them that everything was going to be OK when I wasn’t sure it would?
I was missing James so badly he should have been with us, there was plenty of room in the house that had been provided. His bastard father will one day pay for what he has done to my family. Could he not see that these siblings should be together, he knew in his heart that the only reason he ‘snatched’ James was for his own gratification and that’s what scares the life out of me….
I hate being a grown up, nobody told me I was going to have this much hurt in my life, what have I done to deserve this…..more to the point what have my children done?

*Tony went to theatre the following morning to have the line in his neck removed and a new one put in his chest (Hickman line).
Whilst he was under the anaesthetic he had the catheter removed and a lumber punch was performed, this was the first stage of treatment which was known to us as the COP.
From now on as part of the treatment he was to have steroids every day. When he returned from theatre he also had a line in his hand which was where they were administering morphine.
Generally although VERY grumpy he appears to have accepted this awful situation and is dealing with it as I thought he would with a positive mental attitude.

Tony you will never know much I love you and am proud of you xxx *

* Extracts taken from the ‘little black book’.

Friday

11. My Little Black Book


Over that long weekend I bought a little black book so that I could write all our feelings and information in, this book I entitled ‘THE ROAD TO RECOVERY’.
It was to be well used over the following 8 months and this is where I am drawing all my memories from. My reason for doing this now is as an attempt to ‘heal’ myself as I am still stuck in the past, unable to move on.
It is not an easy task that I have set myself as every time I open the book all the memories flood back as though it were yesterday, but I know that I have to do this to try and retain my sanity.

The following, is an extract that Tony’s sister Laurrie wrote, at the time she was only 17 herself and was also very frightened. The only experience that she had of cancer was her Nan dying of it 6 years before.
She was also studying for her GCSE’s and was , like us still worrying about her baby brother as well. Laurrie and Tony had the typical brother/sister relationship , they argued like cat and dog but as soon as the chips were down they stuck together like glue. Here’s what she wrote …

Mr. Spicer arrived at 9 a.m to see Tony and pre-warn him that he may have cancer, Tony was very brave and didn’t cry instead he asked a lot of sensible questions and spent most of the day thinking.
Mr. Spicer was due to visit at 6 p.m and was to be accompanied by a French Consultant called Eric, however, this was not the case and Mr. Spicer arrived on his own at 6.30 p.m.
He briefly explained to Tony that he had
B Cell Lymphoma , and that he would need 6 months of chemotherapy , after Mr. Spicer left Eric arrived and had a private word with Mum and David.
As this was happening Tony found a lump under his right arm of which he was concerned about.
Eric and parents returned to explain to Tony the plans for chemotherapy.
Initially Tony explained his fears to Eric who dismissed them and carried on explaining the treatment plan, which confused and frightened Tony.
Eric said that Tony’s treatment would in fact take three and a half months, different to what Mr. Spicer had said. Eric told Tony that it would be advisable to make a
sperm sample for storage as treatment could leave him infertile, at this point Tony was still upset and scared about the lump he had found and Eric left leaving him more confused to think things over.
Written by Laurrie