This is the page where FROG members share their experience and knowledge, in their own words. So far we have the following four stories . . .
In 2003 my wife Sally was feeling generally unwell. She was very tired all the time and was losing weight. This carried on and got gradually worse over the next two years. Sally was under her doctor and having tests at the Horton General Hospital but the cancer in her kidney was not picked up and she was being treated for anaemia. Over this time she went from being quite a large lady to losing over six stone and looking like skin and bones, and was so tired all the time she spent most of the day sleeping on the sofa.
I finally visited the hospital with my wife and insisted that things were sorted out; it was only then that a tumour ten centimetres across was found on her kidney. This was a terrible shock and we were afraid of what the future would hold, but a few weeks after this Sally was taken into the Churchill Hospital and had the kidney removed. After the operation she felt so much better, her appetites had returned and she had a new lease of life and was full of energy. We visited the specialist at the Horton a few months later and were told that some nodules had escaped to her lung, and although these were not cancerous at that time, they could turn cancerous in the future.
For about a year after that Sally remained well and the nodules remained the same. But then on another hospital visit the X-rays showed that they had turned cancerous. More nodules appeared soon after and Sally was told her cancer was terminal. At this time our world fell apart. We were angry that she hadn't been diagnosed and treated sooner and were frightened about what was to come.
The hospital introduced us to FROGS who were a tremendous help. As well as having people to talk to in our situation, they also kept us up to date with what was happening with regards to treatments. There was a nurse called Gemma who we could ring any time for help and advice. With all this, the support of our family and friends and the hope of new treatments, we managed to cope a little better, and life felt a bit less hopeless.
At first Sally went on a trial drug to stop or slow the cancers growing, and although there were some side affects it did its job for a while. We then had to wait a few months and she was given Interferon, which again helped somewhat for about ten months and she felt well whilst taking it. During this time, although the worry and stress was still there, Sally was quite well for most of the time, and again with the support from FROGS and family and friends, life did seem to carry on as normal.
After coming off of Interferon, Sally’s cancers were growing. This was a very worrying period as although we knew the new drug Sutent could help keep things at bay, we were twice turned down by the PCT. Many members of our FROG group were in the same situation and Clive Stone, the chairman, organised a demonstration in London outside the NICE offices for us all to, as we felt, either fight for our lives or the lives of those we loved. Although we knew Sutent was no cure, it was giving people extra time, sometimes years, which is all we asked for. We felt that after working and contributing all our lives, to have to fight for our medication like this at what must have been the most stressful time of our lives was horrendous.
Finally Sally was given Sutent. She had about eight courses of it and then had to stop, because the side affects were too severe and her condition in general was making her too frail to cope. After this she continued to deteriorate, and finally on the 6th December 2010 I lost my wife and best mate.
Even when Sally was in Katherine House Hospice our friends at FROGS continued to show us support and some came to her funeral. I still continue to attend meetings to give support to others in this awful situation, and also find it helps me too. Jim Gale January 2012
It was October 2003 and I was newly married and living in a new County. My GP invited me to a ‘new patient’ interview. I have to say that at this time I was really fit and well, swam, did Yoga and jogged - I had no pain or swelling - in fact as far as I was concerned there was nothing wrong with me! The GP took my blood pressure three times and when I asked why he said, “it is 220 over 140”, which was rather high. A blood test followed and this showed very high liver function. I was advised I needed to be referred to a Consultant. Mike my husband was still working and we had BUPA cover so I was referred to the BUPA Hospital in Wroughton. My appointment with the Consultant Dr Hanson was on the Tuesday – when I was examined and questioned about lifestyle, alcohol and diet. I did tease him later that I felt he thought I was an alcoholic, all I said was that while living abroad I had a sun downer every evening. An ultra-sound scan was scheduled for next day and I returned on the Thursday for the results. I was advised that a tumour had been detected on the left kidney and that the liver would be put on the back burner, where it still is! I was then introduced to Mr Iacavou the Urology Consultant and after a conversation was advised that he had organised for me to have a Nefrectomy on the following Monday. All went well and then on the Wednesday Mr Iacavou came to my room and advised me I had a G2 T1b clear cell kidney cancer. He said there was no actual treatment for kidney cancer, no chemo or radiotherapy – I would be closely monitored with regular CT Scans. So fast forward to November 2007 when a CT Scan showed nodules in the right lung and ‘hot spots’ on both Adrenals. By this time my husband had retired and we no longer had BUPA cover, so hello nhs! I was referred to The Churchill and my fight with this odious disease began. Following consultation at The Churchill, an MRI Scan, a PET Scan and a CT Scan I was referred to Mr Sayeed at the JR for a Lobectomy. My appointment with Mr Sayeed was 3 April 2008. Lobectomy scheduled for 23 April 2008. My stay at the JR is something I don’t like to think about! Things went wrong, an artery was cut and I was given 4 pints of blood, two lobes were removed instead of one as they were fused together and a rib was broken. Lots of pain killers were required in the following weeks and I was advised that there was NO cancer in the lung! The worst thing about my time in the JR was the smell of McDonalds burger and fries – the lady in the next bed, who had just had heart bypass surgery, got her grandson to bring her in the aforementioned burger and fries every afternoon! I was then referred back to The Churchill and there followed regular appointments and scans. CT Scan on 22 September 2008 showed growth of tumour in right Adrenal Gland. I was referred to Mr Sadler at the JR. The appointment came through for 27 October 2008 and surgery was scheduled for 22 January 2009. This was successful and I made an excellent recovery. So back to The Churchill and regular clinic appointments and CT Scans. A CT Scan in September 2009 showed growth of tumour in left Adrenal Gland. I requested my GP refer me to Southampton General and my appointment to see Dr Breen was 22 September 2009. Dr Breen said that Cryosurgery would be the best option and this was scheduled for 20 October 2009. This was very successful and my Adrenal Gland is fully functioning. This brings us to the present day almost seven years from the beginning of my cancer journey. I have several nodules in the lungs which are being monitored. I am exceedingly fit and well. I do ten minutes on a mini trampoline daily, I swim and I walk for at least thirty minutes daily. I do have acupuncture weekly to keep my immune system as high as possible and I take some vitamin supplements. I enjoy a glass of red wine and am addicted to Montezuma and Willies Dark Chocolate. I eat fairly healthily but just enjoy life to the max! My main advice to anyone with cancer is PMA – positive mental attitude! I do hope my story helps some of you newly diagnosed with kidney cancer – it is not the end of the world and you get to meet us lovely lot at FROG. Sandy August 2010
P.S. I sing this little song daily - to the tune of "She'll be coming round the mountain when she comes" , It may raise a smile and help someone else! I've got one little kidney working very hard....yee hah I've got one little kidney working very hard....yee hah I've got one little kidney One little kidney One little kidney working very hard
I've got one and a third sparkling pink and healthy lungs....yee hah I've got one and a third sparkling pink and healthy lungs....yee hah Sparkling, pink and healthy Sparkling, pink and healthy I've got one and a third sparkling pink and healthy lungs
I've got one adrenal gland working well....yee hah I've got one adrenal gland working well....yee hah I've got one adrenal gland One adrenal gland One adrenal gland working well
I've got a cancer free blood stream inside of me....yee hah I've got a cancer free blood stream inside of me....yee hah I've got a cancer free blood stream A cancer free blood stream A cancer free blood stream inside of me
My immune system's stronger every day....yee hah My immune system's stronger every day....yee hah My immune system's stronger My immune system's stronger My immune system's stronger every day!
My name is Steve. I’m 40 years old and live with my wife and two teenage boys in Tring Hertfordshire. I’m reasonably fit; a non-smoker and I don’t drink very much. I work as a Director at a magazine marketing and distribution company. My parents and my younger brother are all fit and well even though until recently they were all heavy smokers. That’s a bit about me, so what happened? On the 20th February this year I attended a friends 40th birthday party in Eastbourne. It was an eighties night and my friend laid on a free bar and fish and chips, which were eaten at the bar (this is kind of relevant, please bear with me). I woke up the next day feeling a little under the weather. I put this down to having a few beers (I did say I didn’t drink very much!), eating my food standing up and dancing a bit enthusiastically to Cyndi Lauper, Madness and Dexy’s Midnight Runners. “I’m sure I’ll feel better this afternoon”. Later that day “I’m sure I’ll feel better tomorrow”. On Monday I went to work as usual, still feeling a bit dodgy; nothing specific, just a bit queasy. Same the next day, and the day after that. “Maybe I’ve picked up a bit of a bug?” After around two weeks of feeling the same, not enjoying my food and having loads of my friends and colleagues tell me I was looking a bit pale, I decided to visit my G.P. * Thankfully he took my very vague description of how I was feeling seriously. You hear lots of stories of doctors putting this type of thing down to ‘a virus’, “drink lots of fluids and get some rest”. I was given a full medical examination, poked, prodded, measured, cupped, blood pressure etc, etc. Nothing obvious was found. My glands were not up and there were no lumps or bumps so I was sent for a blood test. I was invited to see my G.P. a couple of days after the blood had been taken. His secretary informed me that I was anaemic. Immediately my wife thought she had not been feeding me well enough. “That’s why you are looking so pale” she said. We had beef stew and broccoli for dinner that evening! My G.P. confirmed that I was indeed anaemic but that, unless I was a vegan (which you will have deduced from the fish and chips and stew, I’m not), this would not have anything to do with my diet. Lot’s of head scratching went on as he told me that the blood test had not revealed anything conclusive, “but something is not quite right”. The mention that I have private medical insurance through my work led to an appointment a few days later with a consultant at the Chiltern Hospital in Great Missenden. He also gave me a poke and a prod, but still nothing obvious. “Lets arrange for an ultrasound and an endoscopy”. I was happy with the thought of an ultrasound. I remember my wife having them when she was pregnant with the boys and it didn’t appear to hurt much at all. I must say though I did not relish the idea of having a camera passed down my throat. A few days later I arrived at 4pm for my ultrasound. This completely painless examination finished after a few minutes. The Doctor told me that she had found something on my right kidney. “Don’t worry too much, there can be loads of reasons for lumps and bumps on your kidney” Mmmm. I was told that there was no need to have an endoscopy – I could have kissed her! We do need to get you in for a CT Scan though. I thought that I might need to come back after a couple of days but it just happened that I could be taken at 6.30pm that same evening, giving me just enough time to sip down the Barium Sulphite meal (which tasted OK actually). After asking the radiographer if he had seen anything after the scan, he told me he was not allowed to say but the report would be ready for my scheduled appointment with the consultant on that Friday evening. Now the speculation started. Family and friends wondered if it could be an ulcer, kidney stones perhaps, could I have diabetes…. No one mentioned the C word! I am very much an optimist with a ‘cup half full’ mentality and when I went to see the consultant late on a Friday afternoon on my way home from work, I honestly thought that I would be told that I had something very minor, take these tablets and let me know if you still feel ill in a few weeks. Alas it didn’t work out like that. He told me that the CT Scan showed that there was a ‘mass’ on/around my right kidney. I asked if that was bad. He replied “yes”. I asked whether it was life threateningly bad, he said, “I’m afraid it is”. Oh dear. He wanted me to speak to a Consultant Urologist, who happened to be in the next room. I spent a few very shaky moments in the waiting room and was invited into his office 20 minutes later. He was able to show me the images from the scan on his PC. As he scrolled through the pictures he pointed out my major organs, “here’s your kidney and here is the tumour”. Hang on I said, it was a ‘mass’ a few minutes ago, now it’s a tumour. Are we talking about cancer? “Very probably I’m afraid” was his reply. My glass quickly emptied and my shakiness in the waiting room turned into full-blown shock. There were lots of strange emotions, lots of uncertainty, fear, disbelief and confusion. The consultant was very sympathetic and described to me the fact that the tumour appeared to have grown along my renal vein and onto and possibly into my vena cava. It was because this complicated things a specialist surgeon would be required to remove the tumour and the kidney. It was at this point I was first introduced to the name David Cranston. The consultant said he would contact him and if I phoned his secretary on Monday I would probably meet him on the following Wednesday for a consultation. My next task was to drive home after a little cry in the car. My tears very quickly switched from the initial fear of dying, to despair about how I would break the news to my wife and two boys. I knew this news would break their hearts. Made it home – not a pleasant journey – then set about sitting my wife down and breaking the news. More tears. She had actually prepared herself for the worst, (her cup is normally half empty), and when she found out that I was to be operated on felt a wave of relief. She thought I would be coming home to say how long I had to live. There is perhaps a lesson there about the pros and cons of optimism versus pessimism? We both immediately agreed to tell the boys everything, not holding anything back. They are both intelligent kids (much more intelligent than their dad), and we knew that it made more sense to be honest with them and encourage them to ask any questions they may have. More tears. Interestingly and as an aside, my eldest son who was just about to start sitting his GCSE exams had Physics and Biology homework to do that weekend. Physics was about ultrasound and Biology was about kidneys. Weird eh? I then spent the evening sharing the news with my parents, my brother, in-laws, friends and colleagues, all of who were aware that I was going in for the results of the scan that day, all of whom were really rooting for me. More tears. At just after 7pm that same evening I received a call from Mr Cranston. He told me he would be at the Manor Hospital at lunchtime the following day and would be happy to meet me if I could make it. My wife and I arrived very early at the hospital and went for a coffee before our appointment. I can honestly say the hour sitting in the Balcony Café at the Manor was one of the longest of my life and that I have never felt so scared. I felt like a child. Mr Cranston was amazing. He explained who he was, why I had been sent to him, drew pictures of what was going on and what he was going to do about it. He went on to tell us that he had carried out between 700-800 of these operations and when I asked what my chances were he said I had a 60-70% chance of a full recovery. It was like a weight had been lifted from our shoulders. I had a fighting chance. The fact that I am young (40 is young isn’t it?) and fit all worked in my favour. There was hope. Mr Cranston started to make plans to operate two days later, but after some reflection remembered that he was due to be away on holiday for Easter and that he would rather do the operation on his return so that he could be around should there be any aftercare required. I was glad that I had a week to prepare for the operation as I had only been given the diagnosis the previous evening and everything was going so quickly. The time enabled me to get my work affairs in order so that I could completely switch off during my recuperation. It also gave my parents a chance to travel down from Scotland to help my wife while I was in hospital. I think they were keen to see their wee boy too. I can’t imagine how I would feel if one of my sons were to be ill. The operation took place on the 8th April and was supposed to last around 2 hours, when Mr Cranston said he would call my wife to let her know how it had gone. Unfortunately the tumour had attached itself to my diaphragm, onto muscle tissue and round the back of my liver, which caused a bleed that required a blood transfusion. This meant that the operation lasted over 4 hours. You can imagine the tension at the house during those hours waiting for the news to come through. Mr Cranston did speak to my wife as soon as he could though even while I was still being sewn up in the operating theatre. The histology report a couple of weeks later confirmed that along with my right kidney a 14.5cm Clear Cell Carcinoma G4 pT2 was removed. All of the indications were that the tumour was contained and that there was no evidence of spread to my lymph nodes. Mr Cranston has upped my recovery chances to between 80-90% now. Happy days. My treatment at the Manor hospital was excellent, everything working like clockwork. I count myself very fortunate to have been in their care. Six days after the operation I was home. My son who is keen to pursue a career in medicine jumped at the chance of administering the blood thinning injections in my belly for the 7 days after I returned. Good lad. My follow-up care has mainly focussed on my wife stopping me from doing anything too strenuous, lots of people telling me to take it easy, and not to rush back, “take your time”. I have also had blood tests almost every couple of weeks so that my creatinine levels can be monitored (still too high but very gradually falling) and my red blood cell count (still too low but gradually going up). Since I have been ill I have realised how many true friends I have. The number of cards, gifts, text messages, emails, Facebook posts, visits I had was quite overwhelming and very humbling. It’s difficult to emphasis how much all of these messages kept my PMA (positive mental attitude) so high and in turn how this helped me get to where I am today. It’s very difficult to thank everyone properly too. Words seem so inadequate. It’s now been almost four months since I was diagnosed and I have returned to work on ‘light duties’, mainly working from home. I still get very tired easily, the anaemia I suppose, and I’m still a bit sore from time to time, but the good days are outnumbering the bad. I had my first post-operative CT scan a couple of weeks ago and there is no reoccurrence. That means I don’t have cancer anymore. It kind of feels like I haven’t had cancer really. I’ve been lucky enough to avoid the need for chemotherapy or radiology and everything that comes with those treatments therefore I feel like all that has happened is that I have had a growth removed. I will however be scanned again in three months time, and every six months thereafter for the next 5 years or so. If the feelings I had leading up to and waiting for the results from the first scan are anything to go by I’ll be given a regular gentle reminder that it could come back, just like it says on the current TV commercial. That makes it feel a bit more like cancer. I have met some amazing people on this very short rollercoaster journey I’ve been on. The consultants, doctors, nurses, radiologists and physiotherapists have all been wonderful throughout. I now have a new circle of friends thanks to Gemma Crane and UCARE I have now joined FROG (Friends Of Renal Oncology Group). A support group made up of people who have been through the same as me and have the same scars, and others whose journeys have had a few more twists, turns and loop-the-loops than me. Amazing people, who look out for each other, raise funds; improve awareness and campaign for patient rights. They don’t do this purely for their own interests but those of others. I’m privileged to know them. Steve Easton July 2010
* Just one thing about my symptoms worth mentioning. Having read up on my condition since my diagnosis I have established that it is not unusual for there to be very few obvious symptoms, even though, like me, tumours can be growing for a couple of years. In hindsight however my urine was darker than normal for a while. I was asked at my initial consultations about whether there was any blood in my urine to which I replied no. It seems that I probably had but I had not understood this is how it manifests itself. I thought there would be obvious signs of red blood. I mention this, as I’m not sure how many others might not make the same connection and potentially delay diagnosis like I did.
I was first diagnosed with kidney cancer early in 2006, and had a partial nephrectomy in May of that year. It was a relatively small tumour and, since there were no symptoms, I didn't really feel like a cancer sufferer. Once I got over the operation, and subsequent CT scans showed no problems, I was able to tell myself that was that, and still didn't feel like a cancer sufferer. Last summer, a routine scan showed that there was a new tumour in the remnant of my right kidney. In September Mr Cranston removed the rest of that kidney along with some nearby soft tissue. Once again, as I recovered from the operation, I was able to tell myself I had had another close squeak, but that I was now OK again and able to proceed with my life, looking forward to living “a perfectly normal life with one kidney” as I had been repeatedly told I could. Only when a subsequent CT scan In December showed my cancer had metastasised (moved away from its original site), was I presented with the inescapable conclusion that this was something very real, and it was not about to go away. Now I definitely felt like I had cancer, though thankfully I still had no symptoms. Nevertheless, it was a shock, and I was conscious of a Damocles' sword hanging over me, with no idea how real it was or how swiftly it might be descending over me. It was only in late January this year that I learnt of the existence of FROG, and went to my first meeting in early February and met the merry crew there. This was where I began to come to terms with being somebody who has cancer. First of all, I met others who had this disease and looked quite happy! The very fact that these people were meeting at regular monthly intervals gave me a little hope that I might also survive more than a few days. This was the beginning of a realisation that having cancer is completely unlike I ever imagined it might be. The Damocles' sword has gone and has been replaced by a consciousness that I am alive today, and that I value today like never before. This is what I have recently realised . . . I know I'm going to die some day. I don't know what I shall die of, but it will be something. It might be my cancer, it might not. And I don't know when that day will come, when that moment will be, until that moment arrives. Meanwhile, my business is to pay attention to this moment, now. This moment is all I have anyway, it's all I've ever had and it's more than enough, and it's wonderful, and I love it. Living with cancer is nothing like I expected. Fortunately being without pain or any other symptoms means I can live my life almost regardless. It concentrates the mind on what I still have, rather than what I may lose. My only real enemies are fear and self-pity, and my faith has risen to meet these, with help from my wife, friends and my fellows in FROG. I am very grateful for FROG and Gemma and David. What an astonishing bunch of people! We are of such varied backgrounds and types, and I almost certainly wouldn't have met them any other way. It's all rather surprising really. Nothing like I expected.
Alan Mynall June 2010
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