Ed's Story | Laura’s Story | Rupert's story | Gemma's story | Jake's story | Rosie's story | Ashley's story

Ed's story

I was diagnosed with Advanced Stage Hodgkin Lymphoma, a form of Lymphatic Cancer in 2007. I was 21. I couldn’t believe it.

Up until that point I had always been more worried about getting hit by an asteroid than been diagnosed with Cancer, it just seemed more likely. Cancer was an unfortunate occurrence that happened to other people, but not me; a late night channel 4 documentary about some poor bald kid. I had been studying Architecture at The Bartlett, University College London, doing pretty well, enjoying life, but all the time I was at University, I had become weaker, thinner, and more tired yet I put this down to the fact that I was a student; up all night and doing lots of things.

Nothing can prepare you for the life wrenching shock of a Cancer diagnosis. Psychologically the natural thoughts are: “kaput”, “game over”, “that’s it matey, pity about the short innings”. Death feels a close inevitable fact, but seems suddenly almost a friend; the fear of mortality is gone.

By my own reckoning when I was diagnosed, I had had the disease for three years, and around 6 weeks to live. A body weakened by malignancy is not strong, and in the two weeks following my diagnosis my condition worsened rapidly, so much so that I could hardly walk anywhere, and had near permanent fevers. A lump the size of a ping pong ball appeared in my neck. I have read descriptions of what it is like to have hypothermia, with symptoms such as uncontrolled shaking, resulting in loss of motor control, and mental faculties, followed rapidly by death. The fevers were like this, the body thinks it is dying of cold.

I started ABVD chemotherapy at Addenbrookes Hospital in Cambridge three weeks after my diagnosis. This involved four titrated injections into the hand every two weeks of some of the most toxic chemicals known to man. There were places I would have rather have been, but in the grand scheme of things it was the best place for me. My prognosis was good, and relatively speaking, the treatment was mild. I was now very much a fully paid up member of the Cancer club, and in it for life. I discovered the amazing bond between Cancer sufferers, a bond as strong as any family or religion.

After the first treatment, the lump had gone, so had the symptoms, and despite the fact that I had been poisoned with enough chemicals to kill me several times over, I felt better. Within a week of my first session of chemo I had been to the pub (for an orange juice of course), and been out on my bike. Six months later I showed up a clean scan, and life was to resume again, as near normal as possible.

As Spike Milligan once said “I told you I was ill”. I learnt how unbelievably precious life is, and the importance of staying positive, strong and making the most of it. I read Lance Armstrong’s book, and I have to agree with nearly everything he says in it, “The Doctors cured the cancer, but only I could keep the hope going”. They say a positive mental attitude increases the prognosis. For me this was a Ray Mears/Bear Grylls survival situation (minus eating twigs and moss), a challenge to get home safely.

In February 2008 I will return to University, a different person to finish off my degree, and carry on my life.

As a another result of this I am on a mission, I am a man with a purpose, a list of things to do in life. I have decided to organise a bike ride from Lands End to John O’Groats, to prove I can, but also to try and put something back, to help the thousands of other Cancer sufferers out there who are still fighting the battle.

Together, we will win.

Edward Farndale

Read more including his fundraising exploits on Ed's own website:>
Lymphomaniacs

Laura’s story

I was diagnosed aged 20 with lymphoblastic lymphoma of the mediastinum. Basically, that’s cancer. A word you never thought you would hear when starting to take control of your life in work, school or university ; if at all.

I was at university and living away from home, when I first noticed that I was constantly feeling under the weather and suffering with symptoms that my GP put down to stress of university. I ignored a lot of the symptoms myself. I was tired constantly, falling asleep at every opportunity, suffered with heart palpitations and reoccurring chest infections. One weekend I felt so unwell, I went to see an out of hours doctor who told me I may be developing mumps; a condition a lot of university students were coming down with, but there was nothing he could do, as he thought it was just a lingering viral infection. I had intense chest pains which lead my GP to send me for a few test and to see a cardiologist. He said some fluid surrounding my heart was the problem. Probably due to the chest infections. I was to expect things to get worse before better, and I was relieved when a name was finally given to everything. Things however got drastically worse within that week, and was rushed to hospital. I knew things were bad when I was taken straight to intensive care and doctors were seeming more panicked and lots more tests were carried out. Everything seemed to be frantic. I was initially treated with suspected pneumonia. My breathing was very difficult and so I was asked if they could ventilate me. The whole idea seemed a bit too serious and out of control, and I said no. From this point on, my world was blurry, fast and ultimately scary. Even to this day, it was if it wasn’t really happening to me.

A few days later I was transferred to another hospital where I was told on arrival I had a tumour in my chest. All I remember is watching my dads reaction- I was still confused and couldn’t say much because of my chest pains and the oxygen I needed, which seemed to be constantly attached to me. Even to cry was so much work and painful. Straight after this I was taken for a biopsy under ct which was when things started to sink in. But there was just no time to relax and think. Physically things had to be done and all of a sudden my body was not my own anymore.

Two lots of surgery later I started 2 years of chemotherapy. Because of the lateness and stage of my diagnosis, my parents told my friends what was going on, and they were fantastic. A lot of friends and family came up to the hospital, and sent me things to cheer me up. Unfortunately, some of my friends couldn’t take the pace and either denied what was going on or removed themselves away from me. At the time it was upsetting, and confusing but in time, you come to realise its not important and to focus on getting better and getting to be with the friends who have given their time and support. Whether it be making the journey to the hospital to sit with you or sending a funny text to make you smile.

Chemotherapy had its ups and downs. I started to feel better in so many ways . Some were painful and some made me sick. All while trying to get to grips with a changing body image. The hair loss didn’t bother me as much as the way steroids changed the way I looked and the scarring from surgery. Something which I am still grappling with. I felt bad for my family who were juggling so much and their lives now constantly revolved around me. I was back at home, being looked after, and on “good days” friends would come and see me or take me out. On the “good” feeling occasions I went into denial and carried on going out like I had done before when I shouldn’t have and subsequently put my health at risk. There were numerous occasions when we went to the ward in the middle of the night with a raised temperature, and some of those times must have been due to my recklessness and quest for proving something. It really wasn’t worth it! After one Christmas, I was on the day unit about to go home after a day of chemo when it was spotted I was a little warm. Half an hour later I was in HDU with pneumonia and a collapsed lung. Very scary and an event which put my confidence back even further. Very much a low period, and questioning, was it all really worth it?

I felt like I had gone back to square one when I had a reaction to a drug which caused a clot on my brain. I had several seizures, and suffered stroke like after effects. In an instant I felt like my dignity and strength was taken away again, and I was so angry and scared of doing anything. Being fed, cleaned and washed, by strangers and my super mum was not a confidence building block in my young adult learning curve. This blob called cancer isn’t physical. I couldn’t sit down and have a fiery chat with this “cancer” and all that went with it. I was fed up of being constantly scared and could feel my confidence slipping. You just have to take each little chunk and work through it.

Mentally the things you go through are the hardest. The pain of treatment or infections can sometimes really lower your spirits but you have to push on. What I found, was that the chemo went in definite peaks and troughs which meant you were emotionally in constant battle with yourself.
Getting your life back on track is very hard, and it has seemed that friends have passed me by and left me behind. I have started afresh, and worked hard at figuring out who this new person is. Tiredness is a huge problem during and after treatment and its hard trying to explain it to some people.

I am now 7 months post treatment. It was all very much worth it. I have re started university, increasing my social life and thoroughly enjoying myself. I have come to learn that cancer is not something I will get over, but something I will live with. For some reason I thought I could put it in a neat box and forget about it. But actually when it has been a part of your life for so long you should be, a) proud of what you have accomplished and b) take all what you have learned and have fun!


1Talk to your friends often about what’s going on or how your feeling. Maybe just one friend who can inform others, or send out an email
2. Don’t read too much into your condition on the internet etc, as everyone is different. Any questions, just ask your nurses or doctors.
3. Take advantage of what the hospital or charities have to offer you. Events and get togethers. Even when you feeling very anti-social and just want to hide away, getting together and meeting others can really help, and make you feel better and less on your own
4. Ask lots of questions- having the knowledge makes things less scary. Even if you can’t read it or absorb it all at once, you can have it there to come back to.
5. Watch lots of comedy!!!
6. Always be positive. You can’t always feel or be like it but there are many good things to get out of the whole journey

Websites!
www.yct.org.uk/home.aspx
www.lymphoma.org.uk/
www.click4tic.org.uk/Home
www.lrf.org.uk/en/1/inftee.html
www.cancerbackup.org.uk

Rupert's story

A short sharp shock!

My cancer story all took place incredibly quickly. On the Thursday I was at school, playing Rugby and well, when that evening my mother noticed I had a swollen stomach. An appointment at the GP - who didn't know what was wrong as I had no pain and no other symptoms - and on to the hospital to be seen by the surgeons 'just in case'. A scan later, and a bed was booked for me and I went by blue light ambulance to Addenbrookes. Biopsy, lumbar puncture, bone marrow and draining of five litres of fluid took place two days later and my chemotherapy started the day after that while I was still on the Paediatric Intensive Care Unit!

After that it was into a routine of chemo, two weeks at home and back again for chemo. We were told that it was a very treatable tumour - Burkitt's non-Hodgkins lymphoma - but that I would spend around 6 months being treated, and most of that would be in hospital.

But, as some teenagers are at the very ill end of the spectrum, some, including me, are at the very well end of the spectrum to give average statistics. My treatment was all done in less than 3 months. I was only sick once ( when the nurse was late giving my anti-sickness medicine), maintained a good appetite and weight and did not have any admissions between my chemotherapy courses.

Of course cancer is not fun - I lost all my hair, had to have my train tracks (braces) removed, had no energy, had a furry tongue and found that my voice 'unbroke' and became very high pitched - but I want you to know it is not all doom and gloom for everyone. Keep positive, keep laughing ( some of the things that happen in hospital and to your body in general are laugh or cry moments!) and eat as much healthy food - the kind your mum approves of - as possible, and, if you do have any food cravings, give in to them - your body knows what it needs ( I needed red meat and boiled eggs at different times!). All this stuff helps your body to fight the nasties.

So three months from start to finish, and, apart from a couple of scars and still rather short hair, no harm done. I hope my story gives you courage and hope - and that your story ends up similar to mine.

Gemma's story

When I was 18 I was diagnosed with Acute Lymphoblastic Lymphoma.

It started as a small lump in my throat and over a matter of weeks it kept growing until it made breathing difficult.  During this period I lost weight, lost my appetite and became very tired. I visited my doctor twice and was told it was my thyroid and it would simply need to be removed.

I didn’t know that week commencing 2 July, would become the worst week of my life, I woke up one morning having difficulty breathing, so my mum and dad rushed me to A&E, but by the time they saw me, my breathing had calmed down.  The doctor told me yet again it was my thyroid and he gave me an inhaler to try and help my breathing.

Then on Thursday it happened again, although this time my breathing was a lot worse, so again my mum and dad rushed me to A&E, although this time there was no waiting, the nurses came and took me straight through to the back where they tried to calm my breathing with oxygen.  Within half an hour of arriving at A&E, I was on the operating table.  The surgeons were planning to remove my thyroid, as that is what they thought it was, but when they cut me open boy did they get a shock.  They found a mass which had wrapped itself around my windpipe.  They removed as much of the mass as they could, but could not remove it all.  They sent a sample off to be tested whilst I was still in surgery.  When they received the results they found it wasn’t my thyroid but it was cancer!

I woke up in intensive care, unable to talk as they had placed a tracheostemy in my windpipe. When the doctor told me my diagnosis, it didn’t really sink in, just went in one ear and out the other.  I thought to myself ‘I just have to get on with it’.  You think about cancer affecting people but you never think about it happening to you.

I was transferred to Addenbrooke's Hospital about a week after my operation.   I remained in hospital for about six weeks, five of which was whilst I had my tracheostemy in.  I found the nurses at Addenbrooke's really friendly. Whilst I was in hospital I started my year of intense chemotherapy.

Some of my friends came to see me, which really helped me to forget about everything. My friends were really supportive and they understood what I was going through.

About two or three weeks into starting my treatment, they placed a hickman line in my groin, this is a permanent line whilst having your treatment, which the nurses could also use to take blood. They are a lot easier than always having a cannula placed in your hand.  Unfortunately my line didn’t work, so I had it removed and a new one placed in my chest, which worked for about two days, then again this stopped working.  They decided to use a PICC line, it is a lot like a hickman line but smaller, and is placed in the arm.

Unfortunately my lines were prone to infection, so I had some stays in hospital.  They take good care of you in hospital, and the nurses are friendly and you can have a laugh with them. They were extremely good in allowing my mum to stay with me in my room or would arrange a room for her at the Oncology hostel.

Once I had left hospital, I received most of my treatment on the Day ward. I like it up there as the nurses are friendly.

Part of my treatment included 12 days of Radiotherapy to my brain.  This involved having a ‘mask’ made of my head.  This was done by taking a cast of my face, neck and shoulders.  This was then used to make a clear mask, which was used to protect my skin from the Radiotherapy.  When you have your treatment, which only lasts a couple of minutes, you lay on a bed and the mask is placed over your face and fastened to the table, to ensure you do not move. I found it actually took longer to set the machine up for my treatment than the actual treatment itself. Unfortunately my 12 days were over Christmas and I only had Christmas Day and New Year Day off.

I have now finished my first year of treatment and hoping to start my year of maintenance soon. This mainly involves taking tablets at home and not having to go to hospital quite as much and I can start getting my life back to normal.

Jake's story

When I was 19, I had just returned from a 6 month trip to Japan, where I was working as a volunteer in a red cross hospital in Tokyo. I planned to find some work, in order to help fund my university course which would start later that year. I trained to be a nursing assistant at Addenbrooke's, and was looking forward to working there, as I planned to go into nursing, or a similar career after graduating. However,not long after completing the training I noticed that I had become jaundice.

After blood tests, CT scans, biopsies and ultrasounds, I was diagnosed with non hodgkins lymphoma. My tumour was pressing against the bile duct leaving my liver, causing the jaundice. Before I could start Chemotherapy, this had to be opened with a stent. Very soon after diagnosis, I was in a bed on ward C10, starting my first course of chemotherapy. Although I was scared, every single member of staff from doctors to ward assistants was friendly and understanding. Everyone was approachable, and I was able to ask questions and get straight forward answers. After 6 months I was well enough to start my University course on time, in Birmingham. I completed my first year of university without any major health problems.

In the summer of 2006, after my first year of university, I started to experience severe back pain, and was taken to A&E at Addenbrooke's. The next day, I was diagnosed with Acute Lymphoblastic Leukaemia. This time, the treatment included radiotherapy as well as chemo, and a stem cell transplant. It was a great relief to hear that my sister was a match, and that she would be able to donate. I found this course of treatment much more difficult, and became quite depressed at times.I was introduced to the palliative care team, who were always on hand if I needed to talk, and to help me with my mental state. They were a great comfort, as were all members of staff.

I was able to get back to university in 2007. That year proved to be very difficult work, due to hospital admissions in Birmingham, and high doses of medications which affected my mental state, and my concentration. I was also diagnosed with chronic pulmonary graft vs host disease, which means that I became very short of breath, and not able to do many  of the things I wanted, such as going out to clubs.

My final year was also hard work, as I had a lot of catching up to do, due to my difficult second year. My closest group of friends had also graduated and moved on from Birmingham, so I went back into halls. My health was considerably better that year, and I was able to knuckle down and get a 2.1 thanks to the support from the QE hospital staff, and the understanding of the staff at the University of Birmingham. I'm now doing regular physiotherapy exercises to help me cope with my GVHD, and am starting a Masters course in Public Health this week. I can't thank the staff at Addenbrooke's enough for making this experience as easy as possible. They still provide me with an invaluable safety net when I feel unwell, or need medications at the last minute.

Rosie's story

At the age of 14, having already been diagnosed with Type 1 Diabetes in late 2005, back in 2008 I was diagnosed with Osteosarcoma (Primary Bone Cancer) in my left arm.  There were no obvious signs of a lump on my arm, (despite later  finding out the tumour was 13cm long)!  The tumour first came to my attention when I fell over a guy rope on a camping trip and my arm continued to hurt. I decided to go to A&E thinking the worst would be a fracture but they turned me away saying it was a sprain.  About a week later, out of pure coincidence, I fell over again on the same arm and I decided to go back to A&E because the pain was not subsiding! After many hours of waiting, they decided to do an x-ray and when they showed me the results they described it as something “ unusual and tropical”. The only way to describe the x-ray is that the  bone looked like honeycomb, it had loads of holes in it like something had eaten away at it. Later, after 2 biopsies and after an extremely tense month I was diagnosed.

Initially it seemed unreal because you read about childhood cancer but you never expect it’s going to happen to you. I was upset at first because I was unsure as to what was going to happen and I didn’t like the idea of losing my hair during chemotherapy. Loads of information is suddenly bombarded at you but once I got used to the fact, I was sure that I would deal with the situation and look at it optimistically.

Everything happened so quickly and soon my hickman line was put in, I was thrown on a children’s ward and the chemo began. I endured 9 months of chemotherapy and a 4 hour operation removing the tumour and reconstructing my arm, using bone from my leg. Whilst going through treatment I felt like I was on treadmill that kept going and going but eventually I did reach the end. One of the worst parts of having chemo was losing my hair and this really upset me but now my hair has grown back and I prefer my new hair to my hair before chemo as it is darker and more curly!

Despite this being a terrible thing to go through I really believe it has made me a stronger person and I appreciate everything that I have on a normal day to day basis.  Not only this, but a lot has come out of cancer as I have made some great friends that I am sure I will have for life and lots of fun opportunities.

Now I am one year out of treatment, I am healthy and well and living life to the full!

Ashley's story

In June 2008, (when I was 18 years old) I began to get very tired, anaemic and was getting very bad night sweats, I left it for a while thinking maybe I just had flu or something until I was so tired every night I was going to bed at 6pm straight from work. So I began going to see my doctor from then until September 2008 (I was now 19) when I was then sent to see a specialist at Ipswich Hospital who said they didn’t think it was anything to worry about as I had no physical signs of the illness he specialised in and transferred me back to my local GP with a letter saying if any physical lumps come up to send me straight back to see him. In December 2008 I began to lose the feeling in my arm and my lymph nodes in my groin were up. My doctor just kept saying they were up because they were fighting an infection but never looked to find what infection it was fighting.

At the end of February 2009 I met my amazing now Fiancé and I had now completely lost the feeling in my left arm from my finger tips to my shoulder and I had a golf ball sized lump under my collar bone which I thought was just due to me pulling a muscle. I was also passing out regularly due to me being so anaemic, sleeping constantly, my skin itched all over, and I had severe night sweats and was very breathless. My partner was so worried about this and made me go see a different doctor as my normal GP was on holiday, He took one look at my lump and how I had lost all feeling in my arm and referred me straight back to the consultant at my local hospital and hinted he thought it could be cancer. I was devastated and couldn’t believe this was happening to me, I had finally found an amazing girlfriend and suddenly I had this fight on my hands.

A few weeks later I went and saw the consultant at Ipswich hospital and he told me he thought I had Hodgkin’s Lymphoma, a smile beamed my face and I thought phew its not cancer, the consultant noticed this and said Ashley this is a form of cancer. I felt my whole body shake and the smile that was there completely faded and I gripped my girlfriend’s hand tighter. My consultant said this is the most common cancer in young males and had the highest cure rate, all I remember thinking is if it’s the most common why have I not heard of it? Why wasn’t there more advertising of it?

I had to undergo a biopsy and a PET CT Scan to confirm the cancer and in May 2009 I was officially diagnosed with Hodgkin’s Lymphoma at stage 4B and the cancer had spread to my spleen and lungs also. By now I had got round the initial shock and I was ready to fight this cancer and have a future with Tracey, she was all I was fighting for now. The consultant couldn’t believe how easy I took the news but what was I meant to do? Shout, scream and cry, yes I was devastated but it wasn’t going to do anything, the cancer was still there and if I wanted to live I had to fight! I was told the chemotherapy ABVD would shorten my chances of becoming a father naturally so I went to Bourne Hall clinic and I have frozen a specimen of my sperm. Any guy reading this newly diagnosed and wondering whether to or not I would say please do it, if it wasn’t for that I had of found Tracey a few months before I would of never frozen any as I never wanted children and then I would of never forgiven myself later on in life.

I was asked whether I wanted a line fitted rather than being canulated every chemo day but I said no, I didn’t want to have that constant reminder that I had cancer, my head was already doing that for me. I found it easier to think the days I had chemo were the days I had cancer and the other days were the rest of my life, this really helped me and I would always recommend thinking like this to anyone. I began ABVD chemotherapy where my regime was going every Friday for 3 months when I then had another scan to see how the cancer was responding to the chemo. The consultant wasn’t completely happy with the results and I was changed onto the BEACOPP chemotherapy regime which meant going Monday one week then Monday, Tuesday and Wednesday the next week, this made me very sick and was horrible but I knew it meant the chemotherapy was working and I had to fight it. In September 2009 I finished my last chemotherapy and in October I had another scan which came back negative, the cancer had gone J you never understand what those words mean until you hear it yourself.

I was so happy to have that evil cancer gone and I began to look forward to my life again without that disease lingering over me but 6 weeks later my life came tumbling down around me when another lump on my neck appeared, I couldn’t believe it and I wouldn’t admit the cancer was back until I had another scan and another biopsy and in January 2010 I was re-diagnosed. I couldn’t believe it, why me? Hadn’t I paid my taxes to live my life already? This time I took the news hard and I didn’t know how I was going to fight it this time and my partner was amazing and got me through it, I don’t know how myself and her done it but together we did and I began on another chemotherapy regime Cystplatnum which was horrible and my stomach constantly felt like a washing machine. In April 2010 I had another scan and it came back negative, I had fought it again but this time it wasn’t over I had to now have a bone marrow transplant at Addenbrokes where I had my own bone marrow cleaned and put back in. I was told I would be in for 4 weeks but the day I was emitted I said I would be out in 3 weeks and they all looked at me like there was no way I would but 3 weeks to the day later I was sent home. The bone marrow transplant was hard but I got through it.

During my second cancer battle I started to contact local papers to get awareness of Hodgkin’s out there and two weeks after my piece in the paper my high school friend was diagnosed with the same cancer which due to my article he was detected early as he had realised he had the same symptoms and went to the doctors. I have used my cancer battle to help others and helping him be diagnosed and helping him through his cancer battle has made my cancer easier to get through as I have used it as an advantage to help others and once my friend has got the all clear we are going to go into our old school and talk about the symptoms and raise awareness of the cancer neither of us had ever heard of but has brought us closer together and has changed both our lives forever.

I would like to use this time to say thank you to all the nurses and consultants at Ipswich Hospital and Addenbrokes and also the people at the Oasis centre who have helped me get through this, but there is one person I owe my life to and that is my partner Tracey, without her I would of never got through this and we have now booked a date for our wedding next year and hopefully have got the cancer chapter of my life over with.