8th February, 1961-16th January, 2000
Roger Tucker was born 8th February, 1961 in Chesterfield to Arthur and May Tucker and joined 2 years later by Carol.
As a youngster Roger was never happier than when he had a screw driver in his hand, where he would often take apart Radio’s, TV’s, Car engines and anything else he could find to see how it worked, but not always managing to get them back together again.
His mum can remember Roger liking cooking especially at Christmas time. This particular skill took off when Carol and Roger joined a Saturday morning Cookery course as teenagers, between them feeding the household for the weekend.
Roger tolerated school but looked forward to and took part in the school camps. He also took part in the Duke of Edinburgh Scheme and gaining both bronze and silver awards.
From those early beginnings Roger went on to apprenticeship in Instrumentation at the local Technical College. During this time he also studied successfully to gain his Radio Ham Licence with the call sign Gulf 8 Victor Romeo Hotel. Roger took an active role in his local Radio Amateurs Club helping out at various events by providing radio support. Another was helping to produce a magazine for the blind by recording news items and stories.
Scouting played a major part in Roger’s life. Soon after his 8th birthday he joined cubs moving on to Scouts where he gained his Chief Scouts Award. Another section of Roger’s Scouting Life was when he joined the Calow Scouts and Guide Band along with Carol. Roger played a tenor drum and Carol a Side drum. Roger moved on into Venture Scouts taking part in many Venture Scout and Ranger camps. He helped out at the cub pack before training to become a Cub Scout Leader. Whilst he was undergoing his leader Training he opened a new pack.
In 1987 Roger managed to join three of his passions together by moving to Ulverston. They were his love of the Lake District, his job at Glaxo and then back into Scouting at 1st Ulverston Cub Pack.
 |
 |
|---|
Roger felt there was still something missing from his life and he became very lonely living on his own until one day in 1990 Roger’s Life really began to change. A joint camp between 1st Grange and Cartmel, 1st Ulverston and 2nd Ulverston was being organized. One evening in January the leaders of the groups got together at the Railway Hotel in Ulverston. Across the table sat a young lady and their eyes met and became fixed. They never stopped talking all night and frequently got into trouble for not paying attention to the meeting. We were later to find out it was love. They became engaged New Year 1991 and Married in October 1991 and even spent part of their honeymoon on a County Cub Camp at Pontin’s in Morcambe before moving on to Scotland.
Scouting was a big part of Roger and Elizabeth’s life together for 4 years with various Camps and District outings, Roger was involved in Leader Training. Roger gave so much joy to so many young people. They also enjoyed their own holidays away camping & caravanning in Scotland where Roger first became interested in Malt Whisky.
Roger also had a love for classical cars owning an MG and a Landrover.
Then there came a time in their lives when they wanted children of their own instead of borrowing other peoples.
Matthew David Tucker was born on the 3rd February, 1996 two days early weighing in at 8 lb 9 ½ oz. It was a joyous time. Roger was very proud of his son. You can not describe the feeling of joy and overwhelming emotion when you have just given birth. Roger was a big support throughout my Labor even though he was in a lot of pain and was not sleeping well at night. I was very Lucky it was a fairly easy birth, for pain relief I had a “Tens” machine (which sends electrical pulses to intercept messages which your body is sending to your brain to say you are in pain) and gas and air. After my waters broke I didn't’t have any pain relief. The pushing was very hard, Matthew had a big head!! Unfortunately I had a tear, which had to be stitched this was the worst, the gas and air came in very useful then.
Matthew was breast fed till he was 13 months old which I’m really pleased about as it wasn't an easy start because the day we came out of hospital I went down with Mastitis and had to go back into hospital that same evening, I’ve never felt so ill in all my life. I had a temperature of 40 deg C. I had a drip for two days and was let out after three. Once the Mastitis and cracked nipple cleared up the breast feeding has gone really well.
Roger had been unwell from October 1995 with a couple of colds which left him with a blocked nose, which we thought was being caused by his sinuses. So he spent a lot of time with his head in steam baths and various smelly oils, Lemsips & paracetamol. After a couple of visits to the doctor he was referred to the ear, nose and throat specialist in Barrow-in-Furness. He suggested that they take a scan of his face which was on the 9th February 6 days after Matthew was born.
On the 13th February the specialist rang up to say they had detected something in his face and would like to do a biopsy that afternoon, so it was back to hospital for all of us again. Once we got to the hospital it was explained there was a growth in his check area which they wanted to take a sample from to see what it was. All Matthew and I could do was sit and wait perfecting my breast feeding and buying cream from the pharmacy to help with my still sore nipple.
After a phone call on Friday 16th February the specialist came to our home to tell us that the growth was cancerous. We were shocked, stunned, devastated, scared and angry that this could happen when we were so overjoyed with the arrival of Matthew only a few weeks earlier. It was a very upsetting time for Roger, family and friends.
Roger was told that he would have major surgery and Radio therapy. The surgery took place at Manchester Royal Infirmary; we were all in Manchester for two weeks. Matthew and I were able to get accommodation in the nurse’s home.
Before Roger went down for surgery we didn’t know what he would lose from his face, they thought he might lose his eye, check bone, teeth and part of his palate and have to be in the high dependency unit. I was so relived when after only three hours he was back on the normal ward, with his face mainly in one piece. They had managed to remove the growth easier than they thought and in the end only lost a small part of his check bone and the orbit bone under his eye. You can imagine what a tremendous relief this was.
During the surgery they were controlling the bleeding and burnt his face just under his eye which left a hole through to his nasal cavity, they would not repair this until after his Radio Therapy. This hole proved very useful to the consultant to look inside the nasal cavity at his frequent check ups. The rest of the surgery was very neat and you could not see where the stitches had been.
Roger Finished Radio Therapy on the 11th June 1996. We went to The Christie in Manchester on the 2nd May 1996 and were away during the week for about 7 weeks but home for weekends. There was no accommodation available this time so Matthew and I had to book into a hotel which was very expensive. However the nurse looking after Roger was able to find me and Matthew accommodation in the Hospital after a few days in a small unit used for parents of children on the children’s ward. They made a special case for me and Matthew because he was so young which was such a relief to be close at hand to Roger and not having to walk around late at night on my own. The nurses were very kind and would let me have my meal from the ward trolley after all the patients were fed.
The Radio Therapy was very hard for Roger he had to have a special mask made to make sure the health parts of his face would not be radiated. Wearing this and sitting very still for treatment was very claustrophobic even though the treatment was only for 10 minuets it seemed like hours. Also because Roger was an inpatient it often meant he was sitting around all day waiting for his treatment never knowing when he was going to be called.
Roger would lose the sight in his eye with the Radio Therapy, which was a small price at the time to pay for your life. We were hopeful that the treatment would work. Rogers only option after Radio Therapy would be Chemotherapy as Roger had the maximum life time dose of Radio Therapy.
Family Life was changed for ever not just with the arrival of Matthew but with the constant visits to Manchester we could no longer get other people to look after our three dogs. We found Jet & Hazel new homes up in the Lakes. Unfortunately we had to have Scamp put to sleep, she was 13 years old and getting incontinent, she had a good long life. We had 3 cats and were able to get the neighbors to feed them while we were away.
This whole experience was life changing Roger and I appreciated life and lived each day to the full as we never quite new how long we had left together. Every day with our son was treasured.
Roger went to The Christies for weekly check ups and a scan in July 1996 and exploratory look around with a fibre optic camera to see how effective the surgery and Radio Therapy had been . The results were very promising so a date to have his face reconstructed had been set for February 1997 Matthew’s First Birthday. Life seemed on the up and we were ever hopeful we could beat this.
Roger’s reconstructive surgery was to take place at Withington Hospital so yet another Manchester hospital it’s only a few miles from The Christie. Were I was able to get accommodation in the nurses accommodation. He was in surgery for 9 hours; it was a very long day for me. It was a big shock & relief for me when I saw him in the evening. He was very spaced out, had three drain’s two in his back and one in his neck. They took a small piece of rib and mussel from his back and skin from his leg to carry out the rebuild. The place were the skin was taken from was like a graze and this hurt the most. Roger was a fighter and quickly recovered from the op. The rebuild to Rogers face went very well, the hole had gone and his eye lid didn’t pull down from his face any more. You couldn’t see where the stitches had been on his face it was very neat work. We went home after about 10 days.
After this surgery check ups were every few months and scans every six months and Roger would be reassess to see if more surgery was needed in February 1998.
The prognosis was promising and Roger and I decide to have another child to make our family complete.
Hannah Elizabeth arrived into the world on the 5th April 1998 weighing in at 9lb 10oz, bringing more joy into our lives and a sister for Matthew. Her birth wasn’t as easy as Matthew’s as she had been induced after my waters broke in the local swimming pool. The membrane surrounding Hannah had not broken properly and when it was finally broken by a nurse the pain was unbelievable again I had stitches as I had a large tare, the gas and air came into its own. It was over an hour before I was able to hold Hannah all that time she was in Rogers arms from that day she was a daddy’s girl. We lived as a proper happy family for a while with Rogers check ups being every six months.
Roger had a routine Scan September 1998, they called us in a few days later to say that the cancer had returned it was a devastating time for all of us. You can imagine how upset and shocked we were. It had been 2 ½ years of being clear. Roger was determined to beat it. The good news was if you can call it good news was that the Cancer was in the same area and had not spread. However Roger had to undergo a further 9hours surgery to remove the tumor and rebuild his face. Roger had the operation on 28th October 1998, it was a long day and he came through the ordeal very well. We had to wait for the biopsy results to see if they had removed the entire tumor in that area. Roger could not have Radio Therapy in that area again; the only option in the future would be Chemotherapy.
Roger began to feel himself again, he had difficulty eating as they had to replace some of his pallet with mussel and remove two teeth. As a result of all the surgery and Radio Therapy his jaw didn’t open very far. Roger returned to work in the new year, all along he wanted to keep his life as normal as possible.
Roger started to have more difficulty eating than usual in August 1999. We both suspected that the cancer had returned but had to wait nearly a month before he could have a scan which confirmed that the cancer returned again with two tumors this time one in his mouth and one towards his brain in the sinus area. This time there was no hope of removing the tumors only perhaps slowing there growth rate down using Chemotherapy. It wasn’t as big a shock as it was the previous year and at this point we knew that it was only a matter of how long Roger could fight the cancer. He so very much wanted to see his children grow up. It’s a hard realization that this is not to be. Roger fought hard living each day to the full and putting his family first.
Roger had 4 cycles of Doxorubicin as an injection every 3 weeks he lost all his hair and the drug made him exhausted. Roger had a scan the drug didn’t work he was offered a trial drug ET743 for sarcoma type cancers he had no hesitation in trying it even if it didn’t help him he hoped it would help others. He had the drug over a 24hr infusion every 3 weeks. This meant a stay in hospital overnight It was at one of these chemo appointments that the doctor checking Rogers’s blood pressure asked about the brown patches (“Café-au-lait” spots) and Lumps on his skin (Neurfibroma). Roger had just thought of them as birth marks and part of him the Neurfibroma had not given him any problems only being itchy some times. I told the doctor that Hannah had the Brown Patches too. He said it could be a genetic condition called Neurofibromatosis. It was recommended that Roger & Hannah be seen by a geneticist.
For nearly a year Roger fought hard to beat the cancer and trying to fit in as much as he could with his family and he carried on working all through his illness. Roger towards then end found it evermore difficult to eat and was only eating liquidized food and energy drinks. The pain was getting worse he coped with a mixture of whisky and pain killers. He was tired all the time and found it difficult to talk and would often want to shut himself away if we had visitors.
The chemotherapy didn’t work and the cancer kept growing at an incredible rate. We tried to make Christmas 1999 as normal and happy as we could we celebrated the millennium at home together burning candles and treating every dad as our last knowing it was going to happen but daring not to think about it. I held Rogers hand in bed he awoke unable to breath, Roger died on the 16th January, 2000 aged 38 years. Matthew was a month away from his 3rd birthday and Hannah was 22 months old. I relive the night he died seeing him falling on the bed suffocated by this disease reaching out for me, the look of terror, and the feeling of inadequacy of there being nothing I could do to help him to survive to see his children grow up, to grow old together. My only consolation is he’s gone to a place of peace and no more pain or suffering.
Rogers Love for me and the children was very evident; he used his last few months to etch a happy memory for him to take with him. His last day with his family was a happy one with a drive out into the Lakes he loved so much.
Saturday 15th January 2000 was a sunny dry but cold day. I rang some friends of ours to see if they wanted to go to Fell Foot Park followed by a swim. Our friend’s daughter wanted to try out her new bike she got for Christmas.
Roger was still in bed he spent a lot of time there now but we asked him if he wanted to come “no” he said, and then he changed his mind and would come.
We packed our sandwiches and Matthew’s bike into the Landrover and set off to Fell Foot Park at Newbybridge. At the park Matthew rode his bike and Roger pushed Hannah in her buggy and together we looked at the lovely views of the mountains and Lake Windermere which Roger loved.
We walked around the park looked at the ducks who wanted feeding but we had no bread. We ended up at the play area; Roger enjoyed watching Matthew on the swing. Matthew wanted daddy to push him because he could push him higher than anyone else.
We went back to the car when Roger became too tired and cold.
We went to the swimming pool. Hannah sat with daddy and our friend watching me, Matthew and our friend’s daughter swimming pretending to be crocodiles. Matthew was waving to daddy and Hannah through the window. Hannah was sitting on daddy’s knee watching. We finished our swim and all had drinks together. Our friends went home.
It was still a lovely sunny day and we were having such a lovely time altogether we didn’t want it to end so I suggested we drove to the garden center at Ambleside and look at the views on the way while the children had a nap.
At the garden centre we looked at a basket and stool for the Christmas Rose plant we had at home (which Roger had for some time and was getting very big) to stand on so that its leaves could grow better without being damaged. We looked at the fish and said that we might get Matthew and Hannah some goldfish next time we came. Roger saw a cottage water feature with a wheel turning in the water and liked it and said would I like it for my Birthday which was very soon. I still have that water feature it reminds me of our day together.
It was by this time it was tea time so we went to the lovely café at Lakeland Ltd. Matthew and Hannah had beans on toast, Mummy had a cake and Hot chocolate, Daddy had a Hot chocolate. We were all peaceful and happy. This wasn’t always the case with two young children around & Roger in pain and feeling very tired.
Matthew and Hannah had a play with the toys while Roger and I looked around the shop. Roger bought me another present for my birthday a candle holder with a shade with pressed flowers on it and a new sowing box. I said “you are spoiling me to day” he just shrugged his shoulders. I think he knew at this point he didn’t have long. He also bought his dad’s birthday present a letter rack.
It was a perfect day and I never wanted it to end we all went home happy and relaxed. He hugged us all before we went to bed that last night.
The support of family, friends, church, Glaxo, medical professionals, police, play group, nursery & school and many more have been there throughout Rogers illness and our bereavement, we are very grateful to you all.
Grief takes all forms and we don’t always know what to ask for or do things you wouldn’t normally do, all you know is there is a big space in your life and you can’t fill it. Sometimes you don’t know what your doing or why and every day you have to get up and carry on even when you don’t want to. You would just like to crawl in a hole and die yourself. I stopped eating for a year and found life very hard. My children and I are grateful for the support of those around us who kept us going through the hard times.
I took the children to see their grandparents a few hours after Roger had died we set of at 3am all the way to Chesterfield I didn’t want to tell them over the phone Roger had died looking back it was a mad thing to do but grief affect everyone differently. A dear friend came with me I’m glad she did because I wouldn’t have got there without her I cried most of the way as did the children.
On the way home a few days later we had an appointment at The Christie, Manchester to see the geneticist to talk about the brown marks and lumps Roger had and the brown marks Hannah has again something drove me to keep that appointment. I felt that I had to know what I was dealing with I couldn’t bear to lose my daughter in the same cruel way. We did a round trip of 300 miles, why? I don’t know! It seemed right at the time I felt if I kept moving and doing it wouldn’t hurt so much.
The geneticist confirmed from my description that Roger had Neurofibromatosis and that Hannah was showing the signs that she too had the condition. Matthew was showing no signs but he could develop the signs up to the age of seven. (Thankful he has now been given the all clear). The consultant was very sympathetic and tried to reassure me and not give me too much information at that stage. I can remember him saying this condition is not cancer so next time you come to see me you can come to St Mary’s Hospital in Manchester not The Christies. It is very rare for Neurofibromatosis Tumors to become cancerous Roger was in a small percentage of NF patients. He still tells me. I’m grateful Roger didn’t know he had passed this condition on to Hannah.
There was a funeral to arrange which kept me busy and lots of visitors and well wishes came, the children came to the funeral as I believed that it was right for them to say goodbye. Roger’s MG was in the funeral procession and the children threw red roses into the grave. They don’t remember much about the funeral but I can tell them they were there. I can remember being told I couldn’t go to my great granddads funeral as a child and I had the feeling that I wasn’t important enough to go and held on to my grief for a long time and I didn’t want my children to feel like that, they were so very important to their dad.
I wanted to know as much as I could about Neurofibromatosis and used the internet and became a member of the Neurofibromatosis association who offered great support and a listening ear. The children and I have done a lot of fund raising over the years, coffee mornings, concerts, car boot sales, sponsored events etc. You just hope a cure can be found for this condition.
Hannah was affected very little initially by her Neurofibromatosis, she had the brown Patches (Café-au-lait spots) and there was a slight symmetrical difference in her face which you couldn’t quite put your finger on. Over the following years we discovered that Hannah has a Plexiform Neurfibroma tumor above her right eye another one on her back, the Sphenoid bone at the back of the orbit is the wrong way round and learning difficulties which are associated with NF1. Seeing Hannah every day reminds me so much of Roger’s condition, the same places, the same hospitals. I ask myself where will it end? Where do you find the energy? From a deep desire to give Hannah as normal a life as possible.
Hannah sight has been affected by the growth of the tumor. Hannah has had a few scans but these are not done often as she has to have a general aesthetic so she lies still the consultant is reluctant to over prescribe to children.
Hannah has regular eye checks she has to have drops in her eye so the consultant can see to the back of her eye. Hannah hates this and screams. It’s hard as a parent to have to see your child hurting.
Hannah has learning difficulties and gets help at school; it is very common for NF1 patients to have a spectrum of learning difficulties. Hannah tries very hard but easily becomes distracted and frustrated. Her behavior can be difficult for other to handle especial in new situation and new people.
The tumor above Hannah’s eye has got to a size where it is impacting on her sight and the older she is the more she notices what other people think about the way she looks. She has had some hurtful comments from children and adults especial when we are away from our home town. Therefore Hannah and I have decided for her to have an operation to de bulk the tumor. This brings risks but will hopefully improve her quality of life.
Neurofibromatosis is such a varied condition from one person to another there is no start, middle and end you never know when another tumor is going to grow of how you are going to be affected or when it is very like a roulette wheel.