Paul Sheppard

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Fundraising for Michael Sobell Hospice
£10,266
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Event: Michael Sobell Hospice - Ladies in the Night Walk, on 20 June 2017
In memory of Charanjit Chana
We are here to give care, comfort & support to help people with life limiting illnesses

Story

Dear Daddy,

I never thought there would come a time in my life when you would not be standing beside me, when you wouldn't be here to walk me through my milestones, to pick me up when I fall and guide me the right path. I never thought you would miss my graduation, that you won't be there to see me open the nursery we both spoke of, that you wouldn't be there to walk me down the aisle, to play with your grandchildren. From the moment I was born, you wrapped me in cotton wool and protected me from all harm, you kept me away from all evil in the world and I grew up as an innocent girl enjoying life's beautiful colours. Being your first born and your only daughter, you spoilt and pampered me from the start, you even took me to London zoo when I was just two weeks to show me the animals! I had you wrapped around my finger, you bought me everything my eyes gazed at, and you fulfilled every wish of mine and gave me a magical childhood. You and mum have always stood by me every step of the way, encouraging me to fulfil my dreams and achieve my goals, though I was a pampered girl, you and mum were very strict with me in terms of discipline. Today I thank you for my upbringing because I can proudly say that if it weren't for the way you both brought me up, I wouldn't be standing where I am today.

I remember when I told you and mum that I wanted to go to university, you both were shocked and I don’t think you believed me. You knew I never liked studying, you stayed up hours every night preparing me for my GCSE’S, you just didn’t understand why what you taught me never got in my head and why I kept getting the questions wrong. I remember the day I phoned you at work when I had picked up my GCSE grades, I was upset as I hadn’t done well and I was scared about getting told off. I told you I got one B, five C’s and 2 D’s. The first thing you asked me was what restaurant I wanted to go to celebrate? You were still proud of me. When I went to college, I turned my life around. I wanted to make you proud, I wanted to show you and mum I can aim high and achieve. I was offered a job at a tuition centre teaching GCSE students, I worked there for 2 years. I got experience as a nursery nurse, a teacher’s assistant and you even gave me the chance to convert our garage into a classroom to do tuition from home. You and mum came to my celebration evening in college and I wish I had a snapshot of your faces when I was awarded with grades A A C and a certificate for being the most hardworking student on my course. You were so proud sending me to university, you let me live out to gain independence and life skills. When you dropped me off to university for the first time, mum and me being the emotional individuals we are started crying, I never thought you would cry because you’ve never shown emotions like that before but when you said goodbye you were crying…I never thought ill see the strongest man I knew cry. You used to love hearing about my university experiences when I used to come home every other weekend, you and mum were very surprised to hear me say I cook for 5/6 people every evening from scratch, I never cooked at home. You both laughed at how the fire alarm would go off at 7am at uni and I would get annoyed having to go outside when I wasn't even ready and then the security pointing out I was the cause of the building evacuating as my hairdryer had set it off,or another time my deodorant had set it off,or the time my fan blew up,or even the time I got annoyed at my alarm clock that wouldn't stop ticking so I threw it in the kitchen bin just to find the police investigating a suspicious sound in the bin. Only me, you would say!

Christmas had always been your favourite time of the year; you loved Christmas shopping, loved driving to central London to see the lights, and loved planning parties and organising day outs for the whole of December. In December 2011 I came home from university on the 22nd of December, you liked to take us out nearly every day in December but due to the pressure of my uni work I was unable to come home any earlier but you promised me that when I come home that we will go to the same places I missed out on again so I could enjoy what I had missed. On the 22nd of December, you came home around 1am as you had spent the night out with your friends, you came in my room to say hello and goodnight. The next evening on the 23rd of December you were due to go out again with your work staff as it was your Christmas work party. You felt a little weak and your legs were wobbling a little but as you had just recovered from a nasty flu we didn’t think much of it. We knew that even if we had told you to stay home, you wouldn’t have listened as you were so excited. Mum and I were enjoying a girly night at home watching a movie and had opened a big box of Thornton’s chocolates. The doorbell rang, one of my uncles walked in and told us you had a seizure in the restaurant.

You were transferred to the neurology hospital in London by ambulance and we all followed you in a separate car. You were admitted in the neurology hospital in London. On Day 25, Christmas day,scans revealed a tumour on the right side of your brain. Our world fell apart; my auntie had passed away from having a brain tumour seven years before and we were scared, very scared. The consultant told us you would need major surgery to remove the tumour and they needed a biopsy to see whether it was cancerous or not. We were quite sure it was non-cancerous as you never complained of headaches and you had no symptoms apart from the seizure. Yet, we were full of worry and had many sleepless nights praying for everything to be okay. On new year’s eve, You had booked a dinner and dance, doctors had advised you to rest as you were on strong steroids and anti seizure medication so we weren’t going to go, you insisted and said you wanted to go, in the end we gave in and all went. Everyone asked you if you were okay as your face had swollen and you looked unwell, you said you had the flu and were on antibiotics and went on the dance floor. When the clock striked 12, we all had a family hug on the dance floor, there in the dark I saw tears stream down your face and I said a silent prayer, for god to bless you with his healing hands. On the day of your surgery, Jan 11th 2012 you were wheeled into theatre; you were so positive and still had your sense of humour. You wore the hospital gown and stockings and posed for the nurse asking her how you looked just minutes before you were put to sleep.

I deferred my final year in uni and stayed home to look after you, after all my education could wait, you were more important. Mum and I researched day and night for a cure, all the herbal alternatives; we wanted you to beat the odds. We put you on an all-natural diet, we cut out all sugar, wheat, yeast, meat out of your diet. We know how hard this was for you as you loved your food. We put oxygen drops in your water, gave you flaxseeds with cottage cheese as people have cured themselves by having two tablespoons of it a day. One day we caught you eating a kit kat from the fridge, we all told you off and you got angry saying you wanted to eat it and that no one can stop you. After an hour you promised us you won’t touch chocolate again, you knew we were only trying to help you and of course it hurt us denying you your favourite food but we wanted you in our lives. We gave you fresh juice every morning and made a variety of dishes full of natural foods and lentils, I used to make you green tea twice a day which you used to hate the taste of, remember how I used to walk up the stairs saying I’ve got your tea and you used to close your eyes pretending to be asleep so you wouldn’t have to drink it. In the beginning of February I went to give you your green tea, as usual you tried every trick in the book to avoid drinking it, you started laughing and then you were going to say something but no words came out. You tried again, still nothing. All of a sudden you started speaking baby language, and then you fell back, your whole body was shaking, you had lost conscious.
It was the first time we had witnessed a seizure, it was scary but we had no time to waste, mum put you in recovery position with Amarjit’s help while I phoned for an ambulance. We waited an hour, the ambulance hadn’t come, I phoned several times saying you’re a cancer patient, and had surgery 3 weeks back and for someone to come quick, another hour passed before you were taken into hospital, they performed another scan and after you were stable they sent you home with the diagnosis of swelling on your brain. A few days later I went to uni to pack all my stuff and bring it home to spend quality time with you. During my 3 days at uni packing I had a phone call saying you had another seizure at home, and a second one in the ambulance, scans showed the tumour had grown. Mum phoned me the next morning telling me to come quick as you were waiting for me, you enjoyed my company as I kept you entertained with movies, walks and your favourite, pizza express! When I reached home, I saw you sitting on your chair with a big smile on your face, but due to my 2 hours travel you got very tired waiting and went to bed a few minutes later.

On the 4th of March, I excitedly asked you whose 21st birthday it was the next day, you were always more excited about my birthday then any other day. You used to spend the night before decorating the whole house, planning the menu, and being the first to sing me a song in the morning. This day was very different, I was talking to you while you were lying on the hospital bed, half paralysed and with speech very limited, weak and fragile. You looked at me, thought for a while and then tried and tried until you said... Rupinder... That was the longest word you had said in a while, plus you always called me Rupi and never by my first name. We all got so happy hearing you say my name. I told you that I have ordered the cake, and will make you a special Apple pudding as we had put you on an all natural diet to help beat the cancer. You looked at me with eyes so sad, picked up the blanket with your right hand and covered your face while crying uncontrollably. You don't cry, you were a strong man yet the man who always wiped my tears was so helpless, you just couldn't understand what was happening to you. You cried and kept saying in between "home, home, home " but we couldn't take you home in your condition. None of us had witnessed you being emotional before, we were all in tears and just wanted you to get better. On 5th March I turned 21, I woke up early to make your Apple pudding, I got some decorations and made my way to the hospital.You were very weak, you were not responding well and did not know who was in the room and not, you were very drowsy. Two consultants came and did some observations and took notes, they then called mum and her brother in a side room, they were in there for about 20minutes. Mum came back in the room where I was sitting with you dad,she was crying lots and I got scared wondering what happened, she goes you won't get any treatment. I was confused, you only had one day of treatment. My mums brother took me in the other room and said, if your condition doesn't improve quickly they will have to delay your treatment. I stayed in the room and thought for a bit, I updated Amarjit of the news over the phone as he was in college. Then mum and her brother both came with me together, they told me that they couldn't bring themselves to tell me but I have to hear it that the consultant said you are very weak and only have a few hours to live and we have to say goodbye to you. What I felt that moment was unexplainable, I could not believe what I was hearing, I was being told I was going to lose you, I had to say goodbye, you were going to die. Why?? What will happen? Can't the docs try to do treatment? Why has this happened? You are going to leave me. NO this can't happen. You will not leave me, you will not die, how will we cope without you? How can you leave me and die? I went back to where you were resting, I tried talking to you in tears, I tried waking you up but you would not respond. I told you your little girl has turned 21 today, wake up, you always bought me everything I wanted, fulfilled every wish of mine, today I'm asking you for my birthday to wake up,won't you do that for me? I held your hand and you squeezed it back holding it very tightly.

 Our whole family came within the hour of hearing the news, everyone was in pieces and could not take this unbearable news, we did not know how to comfort each other. Then a small miracle happened, at around 5pm, you opened your eyes, slowly and carefully. We all gathered around you and mum made me stand in front of you so I could be the first person you see. Everyone told me to be brave looking at you, how could I?? I couldn't control my tears, you were there fighting for your life, you were suffering and there was nothing I could do for you. You looked at me, your eyes were pleading with me, you couldn't talk properly but your eyes said it all, you were in pain, you were ill and wanted someone to save you from all this, and take away all the pain. I would if I could but how could I?? I felt helpless, I felt for the first time you were asking me for something and I couldn't give it to you. You tried smiling, tried saying happy birthday but couldn't take the words out,I said thank you, I struggled fighting back tears, I knew I had to be strong for you. You tried making me laugh, put a stress ball you use to use to bring strength and reactivate the muscles to start working in your hand again, you put it on your face and tried to smile,but the look in your eyes had fear in them, it was very hard to fight back the tears, you looked very scared. We tried to make it a positive atmosphere. You then slowly reached out for the draw next to you, mum took out a variety of your things until you pointed out what you wanted. Your house keys. You slowly took the keys with the little strength you had and placed them in my hand, you looked at me in a way and somehow I understood what you were trying to tell me, on my 21st birthday you told me from today onwards you have to look after your mum and brother, I give you this responsibility, I give you my responsibility. I took the keys, and ran to the corner of the room crying. I didn't want this responsibility, such a big responsibility, I wanted you home dad, I wanted you better, I would do anything to make that happen. I saw the tears and tiredness in mum's eyes, I saw the pain and suffering on your face, you didn't deserve this, you were both such a happy couple, I didn't want anything to come between you. I thought and thought of different ways, many things came in my head, then a idea came, if people can give each other kidneys and organs to survive why couldn't I give you my brain and take yours, why couldn't we do a brain transplant ,at least you and mum will be okay, nothing feared me more then having to lose one of you both in my life. I knew maybe this was not done before but I was willing to take the opportunity and lose my life if it meant saving you dad and having you healthy again. I spoke to the doctor outside, I had a bit of hope with me and with a racing heart told her my idea, it might have sounded silly but I was a 21year old trying to find a way to save you, save my dad. The doctor was sympathetic and she said she is sorry, there is nothing that can be done, you were in your last stage. On 5th March 2012, in the evening you were transferred from Mount Vernon Cancer centre to Michael Sobell hospice, a place where the terminally ill pass away and a place where you were bought to pass away..

You were very strong, you did not leave us like the doctors said, you started becoming more alert though you had no speech and mobility, at this stage you were wide awake. I can’t imagine how hard it must have been for you to have such a poor quality of life, it just wasn’t you to be in bed. I used to tease you about lying in bed all day, you were always an early riser and used to always tell us that staying in bed is a waste of a day and that we should be getting up early. You used to smile listening to us teasing you.
The hospice allowed all of us to stay overnight in hospice with you, we wanted to spend every moment with you, we loved you more than words could say. The nurses at the hospice were brilliant and loved looking after you, they used to play with the hair on your arms saying they’ve never seen an Indian man with so much hair on their arm; you used to love the attention. As the days passed you started becoming stubborn which was unlike you but it was very amusing as you became fussy with what the nurses dressed you in. Every week we had to buy you 7 new tshirts because you wouldn’t wear the same one twice, even with no speech you had all of us and the nurses standing with a shirt in each of our hands so that you could do a thumbs up to which one you wanted to wear. You always took pride in how you dressed.

It was Amarjit’s 18th birthday and unlike my birthday were you were very poorly, on his you were wide awake and waiting to greet him. We had a small party in hospice and you were enjoying everyone’s company. The Next day you did not wake up, you were in a deep sleep , this was the end of march, you slept and slept and didn’t wake up, we got more and more worried, each day was torture. We used to sit in the hospice thinking, it’s been 3 days you haven’t woken up and you haven’t eaten or had anything to drink, you couldn’t even have a drip as at this stage the drip could have gone in the wrong place and made you suffer more. We prayed day and night, doctors would come in the morning and break the news to us every morning that you’re in a coma, you’re not going to wake up, your body is shutting down. We would cry again and again throughout the day thinking this is not meant to happen, you’re meant to be here with us. On day 6 you woke up with god’s blessing, you woke up and were so alert. I pretended to tell you off for sleeping too much and that you always say we sleep a lot, you slept for 6 days straight, you were smiling and squeezing our hand. What we started noticing was that you started looking at a certain place in the room,like you were communicating with someone that wasn’t there, like you could see someone but kept saying go go go and still had the strength to tell them to leave, as if death was at your door and you were telling it not yet. I told mum I said till you’ve got this strength you can’t go anywhere; you need to keep saying no to whoever is there that you can see.

You woke up two days before your birthday on 1st April 2012, you turned 47. We were so happy; it was little things just like you smiling, or squeezing our hands that bought the biggest joys to us. You started losing the feeling on your right side as well, you couldn’t do thumbs up or thumbs down anymore, instead if you agreed with us you would raise your eyebrows that was the only communication we had left with you but we were still grateful. Your birthday came, we decorated your room, bought cake, again had a whole feast ordered at the hospice, shared it with the nurses and then ordered pizza hut in the evening, you could only have water or soup on your birthday as you had woken up from a deep sleep that you had forgotten how to swallow properly, even then you didn’t have much as you had lost your appetite. You were half asleep on your birthday, in a daze, we tried giving you soup and water and family kept coming in and out to wish you, the staff made your birthday good too and all the doctors came to wish you. Then one of the nurses called us in a separate room, she goes she has found the reason why you have woken from coma, she goes the medication has not been going in your arm properly and that is why you have woken from your deep sleep. She goes we can take the medicine off if you like, mum called me and told me to make the decision, I told mum that even though we want you awake it would be selfish for us as you would be in pain, we would rather have you pain free and asleep then awake and in pain, it would have been too unbearable.

We asked the nurse to request a scan to see what going on in your head to make your condition worse, the nurse said that you were so weak that you could have a heart attack having the scan but through experience she said that the tumour has grown and that the cancer is likely to have spread across the rest of your body. The nurse told us that she’s going to change the medication syringe and the medication will take 2 hours to work properly, we broke the news to the rest of the family,in about 2 hours you will be closing your eyes again and we didn’t know for how long, the nurse didn’t mean to hurt us but she had to tell us the truth, we spent every minute talking to you, guess what? You still didn’t go to sleep. The nurses were amazed, they go to me that you’re very strong, every time the doctors say you’re not going to wake up you do the opposite and give us a surprise. We had counsellors at this point talking to my mum, Amarjit and myself preparing us for what’s going to happen, it was a very sad time as the doctor said sometimes before a person goes they become alert a few days before. We were happy to receive hospital staff support helping us take in all this news, obviously no matter how much support they give it would never be enough to ease the pain of losing you.

You started having several seizures a day, something that tired you out the most. You started eating baby food for about 2 days and also mashed up papaya your favorite fruit, it was a change from soup and you enjoyed it.On the 6th of April you fell back into a deep sleep, we got more and more worried as days passed, you started breathing really loudly during this point. The doctors offered to give you medication to lower the noise of your breathing for our sakes as it was quite alarming for the family to hear. On Sunday you opened your eyes, the 8th of April, it was just like the Easter story and on Easter as well where you went to sleep on the Friday and woke up on the Sunday, we were so happy, you smiled and lifted your eyebrows when you saw us, that day you squeezed all the families hand really tightly not letting go, we were so happy even the nurses were laughing telling you how you keep surprising us, and that you’re a very special patient. You stayed awake for 15 hours that day refusing to sleep until your facial expressions showed that you were uncomfortable and in pain, the nurses gave you morphine and you went to sleep while I was doing prayers with you. We had been told you couldn’t eat or drink that day as there was a risk of fluids going into the lungs. It had been 3 days since you had eaten and the thought of not giving you anything at all was terrifying, we knew what was coming and the worst part was waiting for it. When you closed your eyes Sunday night, you never opened them again until moments before you took your last breath. You were in a deep sleep till 11 April, the day our world fell apart.

I was fast asleep on the sofa near you and mum had gone to get herself tea from the hospice reception area, I was awoken by loud rattling coming from you, I knew that wasn’t good as my hours of research had told me that this was called the death rattle, the doctor came to us, told us you were in your last stage, she can’t tell us how long you’ve got but it’s not long, she also had tears pouring down her face, something we hadn’t expected. Your nails were turning grey, mum was cleaning your mouth and there was white liquid, she asked me what that was and I told her there’s no point in researching, let’s just spend time with you. Nurses gave you medication to lower the volume of the rattling as it was very scary to hear, you seemed more settled and the nurses came to give you a bath and changed you into your favourite black and white shirt. We came back into the room after you were changed, it was me, mum, a family friend and your auntie by your side, we were talking to you continuously even though you were in a deep sleep. I know you could hear us dad. I went out the room to get a glass of water when your auntie rushed over to me and told me to come back in the room. I ran to the room, a nurse was checking your pulse, you took 2 last breaths and the nurse said she’s sorry, you left us on 11th April 2012 aged just 47 within 3 months of your diagnosis.

You didn’t tell us how to live life dad, you showed us how to do it. Little did we know that when we went home after 5 weeks of staying in hospice with you we would find in the cupboard a shirt you had left to be worn for your funeral, you knew you were going to leave us didn’t you dad, why god took you I’ll never know.

There’s a saying that goes ‘god gives his toughest battles to his toughest soldiers’ but I sometimes feel god over estimates our strength. At the young age of 21, and 18 we have had to lose our dad, at the young age of 43 my mum has had to lose her husband. I Know every day we’ll be wishing for one last glimpse, one last touch, one last hand squeeze one last hug but time doesn’t wait for anyone and we’ll never get a chance to do any of that again. At such a young age I know what it feels to lose a dad, for the funeral director to look at us individually to signal if it’s okay to close the casket for the last time, for the curtains to close. You want that time to standstill but it won’t, you don’t want to give permission for the closing of the casket at dad’s last viewing, but you’ve got no choice. God gives us life, he puts all these important people in our lives and we make so many different relationships from the moment were born. God chooses two parents for us whom he trusts to bring us up into respectful individuals, then one day the most important people in your life are gone and there’s absolutely nothing you can do about it, the only thing guaranteed in our lives is death and that’s the sad reality of it all and the most painful.

I’m still in denial and always will be, every night before I sleep I still pray for god to give your health back dad, I still visualize you in the hospice, I still manage to convince myself you’re in hospice and one day things will be okay, one day you’ll come to me and say “ rupi, im okay, im here, your dad is still here, one day i’ll get better and be allowed home and then everything will be back to normal again” The day the truth sinks in, it will kill me..

When someone asks me about my birthday, I remember all these memories so clearly and my eyes fill up with tears. No birthday is the same without you dad and I know while I wish you were here with me, you too are hurting inside and would do anything to be by my side...I miss you more and more everyday. My heartache and sadness may not always show, people say it lessens but little do they know how much we are suffering. If I were to write to you in heaven, I wouldn't know where to start, the tear strained words I send to you are from my broken heart. You taught me true kindness and were always there for me, you taught the world happiness and that laughter was the key. My letter is far too short, I'm struggling that's the truth,the world seems so painful and empty without you.. I love you and miss you dad

Lots of love from your daughter, Rupi xx

For all the people who have their father with them today, consider yourselves lucky and tell your father how much he means to you, some of us are not as lucky and would give anything to have our fathers standing by our sides today.

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About the charity

Michael Sobell House is the hospice and specialist palliative care centre based at Mount Vernon Hospital, enhancing the care of patients with life limiting illnesses and providing support for families and carers. We need to raise £1.6 million to maintain patient care at its current level.

Donation summary

Total raised
£10,265.06
+ £653.25 Gift Aid
Online donations
£3,076.06
Offline donations
£7,189.00

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