Hello, my name is Darren. I'm 43 years old, am married to Samantha and have four children, Skye (11), Jack (10), Harvey (3 and a half) and Alfie (7 months).
We live in a little village called Wimblington, just outside March in Cambridgeshire.
My story begins on October 1st 2010.
I got home from work on a mild friday evening, took our two Labradors out for their regular walk then had dinner. It was my mother in-laws birthday that weekend so my wifes brother and his family were at ours for the weekend and he and I had a couple of beers and a game of footy on the PS3.
I went for a wee and to my amazement a string of congealed blood shot out of my penis followed by a jet of dark red wee.
The next day I went to the local hospital, as it was saturday and my GP practice was shut, and I saw a doctor who confirmed I had blood in my wee even though the sample I took there from first thing that morning looked clear and normal to me.
I'd also had an irritating dry cough since the begining of August and had only just finished a course of antibiotics which had had no effect on it. The same doctor on that saturday prescribed me a much stronger one and said that if it didn't work then there must be something more sinister going on and I needed further investigation. He ordered me to see my regular GP (who i'd not actually met at this stage as he was new to our practice and i'd been allocated to him).
I met my new GP for the first time on Monday October 4th and he had me doing breath tests and checked everything he could in his surgery, before deciding to send me to a Urologist in Stamford, Lincolnshire which was arranged through Edith Cavell hospital in Peterborough, and he booked me in for chest x-rays at Doddington hospital just down the road from where we live.
I had the x-rays on the wednesday and then went to Stamford on the thursday to see the Urologist. Whilst there I 1st had an ultrasound of my kidneys, bladder and blood flow from my heart as they of course were investigating how blood came to pass through me.
After the ultrasound I was sent to the day ward with an envelope containing the report from the radiographer for the urologist to view, I thought nothing of it as I assumed i'd ruptured a blood vessel or something daft through my constant coughing of the previous 8 or 9 weeks and expected the scan to show sod all.
On arriving at the day ward I was stripped and sat in my dressing gown before being talked through the procedure of having a camera poked through my uretha, which hurt a lot but thankfully only lasted a matter of 12-15 seconds and then it was over. The urologist then checked my prostate and told me that it was fine and so was my bladder.
He then showed me the ultrasound result and told me I had a tumour on my left kidney, which hit me like a bolt. He said it looked quite new and thought they would just nip the affected area out with keyhole surgery.
I got home and told my wife and she could'nt believe it.
The next day, friday, I was at work and was about to call my GP surery to see him to discuss my options regarding the tumour, but I got a call from them saying my GP needed to see me urgently.
I went that evening after work with my wife expecting that he wanted to discuss the tumour, but he didn't even know about it, he hadn't yet had the report from the hospital. It turned out that he wanted to see me because the x-rays i'd had on the wednesday showed multiple shadows on both lungs. Although nobody with any medical background would commit to confirming it at the time, we knew I must have kidney cancer that had obviously spread to my lungs.
I went to Peterborough District Hospital the following week for a CT scan of my chest and abdominal region. On the way there I had to stop the car in a lay-by as I could feel my boxer shorts getting wet, on quick investigation I found that blood was coming out of my penis without any feeling of the event until the wetness. I had to pull down my jeans for the CT scan and was very embarrased to reveal my boxer shorts with a big red wet patch on the front.
The following sunday, in the early hours I awoke in some discomfort in my lower left lumber region, and it got progressively worse throughout the day to the point where I nearly passed out at the dinner table during sunday lunch and I was helped upstairs to bed by my wife and father-in-law. Painkillers and a hot water bottle got me comfortable but the pain soon got worse and in the end my wife called the emergency GP hotline and a doctor came to see me and administered anti-inflammatory injections an d a shot of morphine as by this time I was in absolute agony.
The morphine worked a treat, and I could at least lie comfortably whilst the doctor called Edith Cavell hospital in Peterborough to get me admitted that evening.
Ironically I was due to go to Edith Cavell hospital only two days later to see my consultant about the results of my CT scan which I was very anxious about as at the time nothing had been confirmed, even though to us my diagnosis was bloody obvious.
I was therefore admitted on the sunday evening, pacified with strong painkillers and kept comfortable. The next afternoon my consultant Dr Nethercliffe came to see me and my wife regarding my CT results.
She confirmed that I did indeed have cancer and it had spread to my lungs and that the tumour was huge
and that I was very sick and in for a long haul, but that it wasn't something they could do nothing about which was the one thing we didn't want to hear, so that wasa relief.
She told me that I was being transferred to Addenbrookes in Cambridge to be under the care of Kate Fife and Prof Tim Eisen and I was taken there by hospital car the next day.
My first day at Addenbrookes consisted of being seen by Kate Fife and then an army of other doctors, nurses and registrars.
I had a biopsy on my kidney the next day which confirmed I had clear cell renal cancer grade 3.
The same day i had the biopsy my wife was admitted to the Rosie maternity hospital right next door as her placenta was covering her cervix and threaening to invade the bladder and her consultants were very concerned about her. We'd know about it from August before my story even began and her condition was so serious both her and the baby were in great danger, and i'd been worried sick about it since mid August.
So there we were, both in Addenbrookes with serious conditions. i went home on the thursday evening and came to see my wife in the Rosie every day whilst I waited for a date for my kidney removal.
Our son Alfie was born by caesarean on friday November 12th and my wife had a hysterectomy, which was necessary to help with her massive blood loss. To my incredible relief it was a great success, she and baby were fine but she still had to have six blood transfusions during the next 24 hours and didn't even see her baby until he was nearly two days old.
We spent the next couple of weeks visiting Alfie in neo-natal then special care, with frequent appointments for me to see my oncologist, my urologist and because of my lung condition a lung specialist as well. It then transpired I had a condition calle sarcoidosis of the lungs, a second rare disease thanks very much!
I saw my urologist in mid-november and he outlined my nephrectomy procedure, it sounded much worse than I was anticipating and was shocked to be told there was a 5%+ chance that I wouldn't wake from it.
I was then told that i'd probably had the kidney tumour 5 or 6 years which I found astonishing. To have had it so long without any clue just amazed me.
Friday december 3rd was D-day, I was eventually taken down to theatre at about 3pm after waiting without food or water since 7am and was absolutely starving and fed up.
I had an epidural and then got knocked out, to wake up seven hours later in agony, it felt as though somebody was standing on my belly and I was absolutely freezing, my teeth chattered like a pnuematic drill.
I was in and out of consciousness and found that in recoveryt my belly was ok, but where they had had my arms stretched out during surgery my arms and shoulders were killing me, I had to get nurses to massage them all night I was in so much pain from it.
The next night, saturday, I wanted to die, i've never known pain like it. The nurses did their best but it wasn't until the pain control team intervened that my epidural got boosted from level 9 to level 20 that I got relief and from then on I could at least get relatively comfortable and sleep although that was well into sunday morning.
I looked terrible and shocked all visitors. Pictures of Alfie at home, (he was allowed home on the sunday) were fabulous to see and gave me something magical to look forward to. I couldn't wait to see the kids and give them all a big kiss, but did not want them in hospital to see me like I was. After five I was taken to a six bed ward from my private room and felt a little better with people to interact with.
Walking was a nightmare, such was the pain in my midrift and the fact that because the kidney was stuck to the pancreas and they had to mess about with the pancreas during surgery and I could only have sips of water for six days after the op I had lost so much weight and muscletone from my legs that I had zero strength.
Gradually, very gradually it got easier. I'd read on this site that the operation was quick to recover from, not for me. I had a drain on the left side of my abdomen to monitor the chemical output of my pancreas and it was only taken out the night before I was allowed home, on december 15th, 12 days after my op. Having the drain tube pulled out, (it must have been 5 inches long hurt more than I ever imagined being stabbed must be like, I screamed out loud like a baby.
I then had a nurse turn up to take out my staples, my wife had had a very bad experience of them some years earlier and wasn't looking forward to it at all. I asked the nurse if she'd done it before and she said no, which worried me greatly, but luckily she was just joking and told me she'd done it a thousand times. My confidence in her lasted about 10 seconds because the dozy cow had the tool upside down and the very first staple she touched she squeezed tighter rather than pull out. The sister on duty then came to take over and had no problem taking the other 58 staples out in about two minutes, before spending half an hour, yes half an hour getting the first one out digging from side to side, moving around my bed to try to get a better angle of attacking it. It took ages and was very sore, but eventually she got it. I was happy to have it out, but didn't appreciate seeing the other nurse the rest of that evening.
The next day my mum came to take me home, my wife couldn't as it was only 4 or 5 weeks after her hysterectomy and she wasn't allowed to drive still. I got home and was helped into an armchair in the living room, adorned with christmas decorations to be reunited with the kids. I burst into tears on the spot such was my delight and emotional relief at being home and seeing them. Alfie was placed in my arms and I melted.
The next day I found that my drain site in my abdomen was quite sore and whilst changing the dressing couldn' help but touch gently around it to see what would happen and loads of puss oozed out. The district nurse came and said it was infected and I was prescribed two very strong antibiotics by my GP. Both drugs made me ill, one in particular made me sick withing 20 minutes everytime I took it.
Christmas was a bit of a nightmare, my mum and stepdad were at ours but due to my feeling so ill I spent christmas eve evening and most of christmas day afternoon and evening in bed and being sick.
Things improved shortly after that when i'd finally finished the courses of antibiotics. Moving was still very painfull hard work and I had no energy. I had to drink these milkshake type energy drinks called fortisips, they made me sick nearly every day and I hated them.
New year came and we had some friends round, I was gradually getting better and even had a bottle of lager on new years eve. At the end of the first week in January I had my first appointment with my oncologists and saw Prof Eisen at Addenbrookes a few days after a CT scan of my abdominal region and chest. He informed me that analysis of my kidney tumour and 4 lympth nodes and various other bits that were removed during my op all showed that my cancer was now grade 4 and had accelerated to an aggressive stage. He revealed that the secondarys in my lungs had doubled in size since my previous scan in mid october and I was to start treament on it immediately.
I was given the choice of an antibody infusion fornightly to boost my immune system to fight the cancer naturally with the assistance of a home administered injection of interferon alpha. My other choice was to go onto Sutent which as anybody aware of it will know has a long list of side effects but I opted for it out of the conveniance of having one tablet a day at home and not having to go to Addenbrookes every two weeks.
I had my first 28 day cycle of Sutent and apart from some fatigue, including a 4 day spell in the middle when I think I might have had an unrelated virus that knocked the stuffing out of me and I had no energy or appetite and could barely get out of bed, my only real side effect of the Sutent was a sore mouth, mainly the tongue in the 3rd week.
I finished my first cycle and started my two week 'off ' period. As soon as it started I got what I thought were trapped wind pains across my belly, i'd had trapped wind in hospital and could not believe how much it could hurt, no wonder babies cry so much!
Anyway after a week of varying degrees of pain and agony I relented and let my wife call out the emergency GP, who within moments of touching my belly was on the phone to Addenbrookes to get me readmitted that night.
We went to casualty first, as instructed and eventually had an x-ray to be told a section of my bowel looked rather large. I was transferred to the ward that i'd left only 6 six weeks earlier and had a CT scan the next afternoon. As i'd not eaten for two days because of being sick at home every time I tried to and then not being given anything in hospital whilst being monitored my pain felt ok, better than at any point in the previous 10 days. I had my scan and expected to hear nothing until the morning when the doctors would be doing there regular rounds. But no more than a hour and a half after I got back from my scan I was visited by two surgeons who said they were amazed that I wasn't in agony there and then because of what they'd seen on the scan. Naturally i was somewhat taken aback and they told me that part, a big part, of my small bowel had basically flopped into the gaping casm where my kidney had been and it had got stuck, twisted anbd blocked and needed emergency surgery to correct involving taken a section out and reattatching it like a garden hose.
I phoned my wife and she couldn't believe it, she'd been with me earlier when i'd had my scan and new how much better i'd been feeling and was as amazed as I was that I had such a severe problem. The next day I had my op and woke to be told that it was a success which was a great relief, it was also three days before my birthday so was obviously already aware that I would be spending it in hospital.
I came out after nine days, it was nearly seven but I was suddenly sick as a dog repeatedly one afternoon whilst my wife was actually on her way to pick me up and for some reason I became very ill and could barely stay awake for a day and a half.
With the help of even more drugs I got better on the ninth morning and was again allowed home. Although I was still suffering pain and the after-effects of my first operation to which the second only made it worse, getting home wasn't as traumatic as the first time and with plenty of rest I improved quite well, but still needed loads of pain relief for my belly.
I was kept off of the Sutent for 6 weeks so as not to hinder the recovery of my insides, apparently it encourages new blood vessels to grow and that was not what my battered insides needed. On restarting my Sutent I had a pretty similar experience of my first cycle, some fatigue and a very sore mouth and tongue in the 3rd week so it was ok in the whole and could have been much worse.
During the course of the previous couple of months I had been occasionally getting these odd bursts of bright colour flashing on and off in the right side of my vision, it would always last about 3 or 4 minutes never shorter or longer and would involve no pain or nausea of any kind just the irritation of it getting in the way of things I would be looking at.
I was sent to an eye specialist at Addenbrookes who gave my eyes a thorough going over and found that my eyes are those of a teenager, I have fantastic eyesight. He said however that it could be that IO could have some odd condition in the cerebral cortex at the back of my brain and that an MRI scan would happen, although he didn't look confident of finding any explanation of it and I saw him again a month later, (last monday June 13th), to get the verdict expecting that it was some weird condition that nobody could explain.
That very day was my CT scan to check on the progress of the Sutent on my lung mets and it was very encouraging to hear that the tumours, especially the largest had shrunk by a decent amount which was wonderful to hear.
The next thing he said though hit me like a bullet, the MRI had clearly shown mets all over my brain and they were obviously very new. It was the cause of the flashing colours and said that i'd be put on steroids to fight the swelling that was going on and should stop any more flashing.
My oncologist nurse was present by then and I was told i'd need radiotherapy this week, I start tomorrow 22nd June.
Dr Fife then turned up having been in a meeting and my wife and I were taken to a room in the radiotherapy suite to be told a little of what be happening.
I was informed that my cancer was obciously very aggressive and she asked if I wanted to know my prognosis, to which I immediately said yes. I have been informed that I have about a year at the most and my world came crashing down in an instant. After being told that the lung mets were controllable via the Sutent (as long as it was working anyway) I thought I had 5 years , a decade, I don't know. But to be told i'm probably not going to see the end of next year was devastating. My wife is distraught.
Dr Fife left us alone for a minute whilst she went to arrange for me to come in later in the week for a radiotherapy mask fitting and upon her return said that I also now wasn't allowed to drive, ever again. That just rubbed my nose in it and I felt like my independence had been taken at a stroke.
We left hospital and drove to my mums in Thetford, she has Non-Hodgkins Lymphoma in remission and has had loads of Chemo since last summer. Telling her was the worst thing I have ever had to do, I just broke down in tears and she was absolutely devastated.
We have had lots of tears over the last week, but to be honest it has given me a unique insight into life. I am grabbing it with both hands and making sure I make the most of every day, be it building decking in the garden with my wifes dad, or taking the kids to the zoo. I'm not going to waste a single day. They say I have a year, I guess that assumption is based on an average of people with my condition at my sort of age, but I live well, i'm not fat, I eat plenty of fruit and a good general diet so i'm hoping to push the limits of my lifespan as far as possible. My two sons are 3 and a half and seven months, just to see Alfie toddling on his two feet and saying daddy is reason enough to keep hard at it.
I have a bucket list now, I want to do a parachute jump, I am going to go water skiing, never done it always wanted to, so I bloody well am. I'm sure i'll think of other thing to add to it, a bit of deep sea wreck fishing with my dad I quite fancy and then getting home and cooking nice fresh cod or whatever I catch, lovely as i'm into my cooking and love fish.
I start my radiotherapy tomorrow, (weds June 22nd), so I shall add daily updates when I remember for anyone thats interested in my story, if you are, thanks for reading and heres to a longer life than I seem to be allowed at the moment, although having a death sentence is in an odd thing as it makes me wonder how many people die in accidents every single day having not done this or that by putting things off, well I have a time limit and MUST get those things done, as I said earlier i'm not going to waste a day, general health allowing and if I can get up in the morning and embrace the day i'm going to every day until it kills me and my life is going to be fuller than it's ever been. I have four children to enjoy and a wonderful wife and relatives and friends who i don't want feeling sorry for me and being all sad around me. I want everytone to enjoy my company whilst they can. Most of them will hopefully have many many years to grieve for me, so there is no need for them to start doing it now.
Bye for now folks. xx
