My Story by John Deadman
This is my story with my battle with cancer, which I would like to share with you. My name is John Deadman and I come from Chatham. I have taken over as secretary of the Urology Group, and hopefully by talking about my ongoing battle of bladder cancer, it may help others.
During 2008 I noticed things weren’t quite right with my wife, and to cut a long story short, between late 2008 till 2012 my wife was diagnosed with Alzheimer’s/Dementia. We struggled on until mid-2014 when I retired to look after her. Not going through all the problems we have faced over the years, which are for another day, but can tell you that I am her main carer, 24/7. I now have carers in three times a day to help, as she was completely dependent on me.
This now leads me on to my issues of bladder cancer. In November 2018 I first noticed passing blood when I used the loo, which only happened once, and a year on, I can confirm that I have never seen any other signs.
However, when I got home, I called a District Nurse who attends to my wife, and she told me to call my GP, the next day I met with my GP who made an appointment at Medway Hospital. Two weeks later I was called in to be examined, and after a camera was inserted into my bladder, the doctor told me, and showed me a tumor. I then had a meeting with Mr. Marsh a Consultant Urologist when we discussed the results, and because I was booked to go to Scotland for six days in January, it was agreed to have me back in after this for an operation, where they removed the tumor. I was then called back for another operation, after which I was told that there was no more tumors. Having met with Mr. Marsh again, it was agreed for me to start BCG treatment, which started with treatment once a week for six weeks, then a three month break. Then treatment continued once a week for three weeks, over approx. three years. However, during the first three-month break, I was called back for another operation, where they found two small tumors. I was then referred to Mr Bhatt, Consultant, who offered me a further six weeks treatment or to have my bladder removed, and because of my situation at home, I agreed to this. After having the first week’s treatment, I developed a rash on my legs, and when the nurse looked at the rash, after discussing the problem with Mr. Bhat, they couldn’t treat me until I had seen my GP, who told me he believed that the rash was caused due to stress. As this was the fourth time treatment had been delayed, due to rashes etc. when I went back to see Mr. Bhat, and after we had discussed the situation, I said that I couldn’t deal with another two to three years of delays, and the ifs and buts, and I would like to go ahead with having my bladder removed, which he agreed with, so I signed the paperwork. After a couple of weeks I had an appointment with Professor Sheriff. We had further discussions, it was agreed to go ahead with the operation once I had a bone scan, if negative, Prof Sheriff agreed to remove my bladder, because they could not guarantee that the cancer would not return. He also explained to me, that when the BCG treatment is given, for about 50% of patients it works, the patients that it doesn’t work for are called back and offered another six weeks treatment. With these patients, once again about 50% works and if not they are called back to have their bladder removed. As I have already stated, because there was no guarantee that the cancer would not return, he agreed to the operation. Prof Sheriff also booked me in to have fitness training, which, whilst I attended these appointments twice a week, I wondered why I needed them.
5th November arrived, approximately one year on; I attended Medway Hospital, where Prof Sheriff and Mr. Bhat removed my bladder. The day after my operation they got me out of bed and I sat in a chair for eight hours, and to be truthful, didn’t even feel like I had an operation, although I did have tubes hanging out of me. However, day two was a different matter, when they got me out of bed it was like a train had hit me, I couldn’t even wash my face and had to be put back to bed. Having spent two days in High Dependency unit, I was transferred to Kingfisher Ward, and I must say throughout my stay in both wards, I could not have been better looked after, and would like to thank all the doctors, nurses and staff that treated me.
Having said that I thought that the fitness training seemed a waste of time, the thing that I completely underestimated, and although I was told, was what the operation took out of me, and the lack of appetite, let alone the two stone that I lost in weight. However, one week on and I was on my way home. I had a carer in for 24 hours a day to assist with my wife and me for about another week, then she was in for twelve hours a day for a further two weeks. Whilst this was arranged because of my wife, I needed this just as much, because I became very tired all the time. For the first month I had some good days, and not so good days, plus a couple of small accidents with my new bladder, which is now on the outside of my body (a stoma bag) but two months on I am improving steadily. I am getting stronger every day, and although I still have to go back to see my consultant to discuss my progress, I feel much more upbeat and am looking forward to the future. Also I have my life back so that I can continue to care for my wife, for however long she has left.
Before I finish, and I am under no illusions that the cancer may return [hoping it doesn’t], I have never been able to sit on my hands when anybody needs help, which is why I joined the Urology Group and became Secretary.
Having now gone through the operation, I would like to once again thank all the hospital staff, who have helped me through the operation, including the Stoma Nurses, Smart Nurses and dietitian nurses, not forgetting my Daughter and family, carers and neighours all of which I couldn’t have managed without.
John and his best friend Sheba catching some rays
Robotic Surgery, Gino’s story
This article was first published in the summer 2018 edition of news@Medway, a contemporary magazine from NHS. A PDF of the article can be read here.
Since we welcomed the da Vinci robot to the Trust last year, more than 130 prostate and Kidney patients have benefitted from this state of the art technology. Jodie Moore.
Da Vinci is a surgery tool which revolutionises the care provided to patients undergoing surgery. Under the control of a highly trained surgeon, da Vinci is able to perform complex and incredibly precise procedures.
The robot offers vision, dexterity and precision at a greater level than the human hand. And there are clear benefits for patients: people who undergo surgery by da Vinci tend to experience less pain, go home sooner and have less chance of experiencing a complication, such as a postoperative infection.
Medway is the hub of the West Kent Urology Cancer Centre, and the introduction of this innovative equipment means that prostate, kidney and soon colorectal cancer patients across the whole area will benefit.
Here Wigmore resident Gino Manzotti talks about his experience of robotic surgery:
“I had my annual health check last year and my PSA (prostate specific antigen) levels were high. I was referred for biopsy and discovered I had cancer in my prostate. It was a real shock because I’d had no problems or symptoms at all. I was very fit, in fact I felt fitter than when I was 30 years old! I play golf three times a week, I go for long walks regularly, my diet is very healthy-surely there couldn’t be a problem with my prostate, but there was. Luckily the cancer was contained in my prostate and had not spread.”
“I discussed my treatment options with my consultant and I did a lot of research myself. I wasn’t really keen on surgery, but then Mr Matin Sheriff at Medway Hospital told me about the da Vinci robot method and it seemed like the best option for me. I liked that it wasn’t as invasive as open surgery and I was told the recovery time would be much quicker.
“I had my operation on 16th January this year. I would have been home 24 hours later, but I had to stay an extra day because of liquid in my abdomen. I was so well looked after during my stay in hospital, and the after care has been brilliant. I had very little pain and no huge scars.
“Since my diagnosis I’ve been encouraging everyone I know to have the PSA test. You just don’t know what’s going on in there.”
Surgeons who use the robot undergo two months of extensive training and are monitored by a mentor for their first few operations. While da Vinci has been benefitting prostate and kidney patients across the region, we are now expanding the range of procedures carried out by robotic surgery.
Gino says “I’ll be 70 this year, the same age as the NHS. Its amazing to see how far surgery has come in this time-it seems crazy to think that I have been operated on by a robot.”
Footnote, since then the procedure has been expanded to include bladder surgery.
My wife Tish and I became involved with the urological support group in mid-2009 after I had been diagnosed with advanced bladder cancer. This makes us sound like founder members although the “MUSAC” group as it was known then had been formed some months earlier.
The Urology Clinical Nurse Specialist at the time was Irina Vieira and she was a driving force behind the support group. After having my tumour removed by the TURBT procedure followed by a course of chemotherapy, the ‘gold standard’ medical advice was to remove the bladder. Two surgical options were offered – neo bladder or urostomy bag. Irina spent time with us after our meetings with the surgical team and she encouraged us to attend the support group where she introduced us to other bladder cancer patients who were happy to talk about their respective experiences. We cannot thank Irina enough for the direct support she gave. She also recognised that I was not comfortable with the surgical options and she set up a meeting with Dr Henry Taylor, the radiotherapy consultant at Maidstone Hospital. Henry agreed to take me on subject to the check cystoscopy that was carried out in January 2010 - under general anaesthetic in case immediate surgery was required (the first thing I did on waking up was to look under the bed sheet!) - which showed there to be no viable tumour. I then commenced a course of radical radiotherapy in March 2010 which I am very happy to say was successful. I still have an annual cystoscopy which, although a trifle uncomfortable, is a massive reassurance that everything continues to be okay. I consider myself to be enormously fortunate and I attribute much of the success to the skill of the surgeon who conducted the initial TURBT procedure, Mr Masood.
Mr Mufti is personally responsible for me giving up smoking after some 45 years. On the morning of my surgery he visited me shortly before the operation, loomed over me in my emotionally fragile state and said, “Let your last cigarette be your last ever.” After being declared ‘all clear’ at the end of 2010, I bought a hybrid bike – my first since childhood - and embarked on a programme of improving my physical fitness. Cycling became a keen interest and a year later I progressed to a road bike on which to emulate the success of Team GB who were doing rather well on the international cycling scene. I also secured a place on the first “Ride London 100” event in 2012 and I am pleased that a corner of our lounge is adorned with cycling competition medals. Alas, my career as the next Bradley Wiggins stalled after I suffered heart arrhythmia in 2015. At least the heart consultant cheered me by saying it was “a condition common among elite athletes”
Just three years before my cancer diagnosis and treatment I had taken early retirement from a lifetime in air traffic control and embarked on a new career as a volunteer group leader with Kent Wildlife Trust (KWT). I cannot over-emphasise the importance of the support given by KWT and my colleagues. I was in a state of some emotional anxiety and they looked out for me throughout and encouraged me to do as much or as little as I felt able. Once or twice following chemo I was knackered and had to find a quiet corner of a wood to throw up in before having a lie down. On another occasion I parked a muddy KWT Land Rover full of volunteers right outside Maidstone Hospital while I popped in for my weekly pre-chemo blood test! I am happy to talk at any time about the physical and mental health benefits of volunteering, whether it be in wildlife or another environment.
Lastly I have to thank Tish. We ‘come as a pair’ and she has been by my side throughout and I wouldn’t be here today without her.
My journey on the cancer pathway began one Sunday in end of August 2018, when I came home from a day out in the countryside and urinated blood as I was getting ready for bed around 11.30. I got up around 3am and again there was blood in my urine, and again at 8.30am and that was it. It was only those three times I never saw blood again. I rang my doctor on Monday, the receptionist spoke to him and told me to come to surgery to give blood to the nurse, and to come to see him on Tuesday morning. The doctor told me that he thought it was likely an infection, but to be sure he said he would put me on the cancer pathway. It’s a scary word when you are first confronted with that horrible C word, but like anyone else back then I was hoping for the best outcome.
Soon I had an appointment and I drove into hospital for an inspection of my bladder. To do this a fine tube was inserted into my penis with a mini camera on the end of it. It wasn’t painful I would say though, but it was uncomfortable. As I lay on the gurney the doctor was looking at a screen way over my head. At the end the nurse told me to put my clothes back on and to go and sit down at the doctor’s desk with him so he could speak to me. He was busy filling in a form of which he gave me a copy. When my wife and I got home the first pages were medical speak, but there was a square at the end where it said something like likely diagnosis, and in it he had written suspected cancer. Of course, it was a bit worrying, you think cancer happens to other people not me. Some time later I went into hospital for a short 2 day stay for a cystoscopy and this time I was anesthetised on the first day PM so that a larger tube could be inserted into my bladder with a larger camera and lights and some tools to take biopsy’s, which were sent off for analysis. I was a little bit sore after this for about a day, but it was not too bad.
This was followed sometime later by another cystoscopy, and a few weeks after this one I was called in to see one of the consultants of the urology team, to be told I had bladder cancer. Next, I was given a course of treatment called BCG. This entailed driving in for a day for 6 weeks, to see one of the nurses who passed a fine tube into my bladder, and filled it with living TB virus, the idea was that it would eat the cancer away. This didn’t hurt at all, after it was done, I drove back home. I had to hold my water for 2 hours. I could then sit at the toilet pee and fill the bowl with bleach then shut the lid and flush 20 minutes later. At the end of the 6-week course there was a 6-week break before I went back to see the consultant to see if it had worked, sadly he told me that it had not. I was given the option of another 12 weeks of treatment or major surgery. I asked the consultant “what was the chance of another round of BCG working” he said it worked the second time in a little less than 30% of cases. I didn’t think this was a good bet so to his surprise I chose the operation, because if it was not likely to work to rid me of cancer, it would be 12 weeks wasted while it got worse and started to eat through the wall of my bladder, and get really bad.
THE BIG DAY ARRIVES
On the 28th of May 2019 I was front and centre at the Medway Maritime Hospital at 6am and by 7am I was in theatre. Luckily for me there are 8 Davinci Robotic Surgery suites in the UK and one of them is at MMH. Although I was 75 years old at this time, I was passed as fit for this surgery, because I am a keen mountain bike cyclist. By having this procedure with the Davinci Robot there was no large incisions in my stomach, and no hands were put into my body. Thus, lower chance of infection, no large incisions and scars to heal afterwards, and faster recovery. Come the evening I was in a high dependency ward, and the staff and nurses were just brilliant, they really took care of me. Day 2 I was out of bed dangling a few tubes behind me, but I didn’t feel so bad as I thought I would. Slowly I got better every day until at day 6 I was moved into an ordinary ward. After 3 more days I was discharged and after all the paperwork was done and the drugs, I had to take home with me were sorted out, I was let out to go home at last at 9pm.
I now have a Stoma bag to deal with for the rest of my life attached to my right hip, which is where urine is discharged from my body. This is because after surgery I have no bladder, no prostate, no appendix and the lymph nodes in and around the bladder etc were also removed. There was some weight loss and for the first couple of months, I had to take it easy and I used to have an afternoon nap if I felt tired, but it soon passed. My Daughter gave me the details of a member of the Urology Support Group, and as I was feeling a bit down I called Micheal, and he spent a long time talking to me and reassuring me and he invited me to a group meeting at MMH one evening. So, I can see the benefit of having friends who have lived through cancer treatment. I have had regular check-ups with the Stoma Nurses and the consultant’s, and all’s well. It was a bit tricky at first changing the Stoma bags but now it’s a doddle and it just takes less than 2 minutes. Nobody knows I have this unless I wish to tell them. I do not regret choosing surgery over more treatment as I am cancer free. It’s done and dusted it’s all over. I’m alive I’m doing fine and yesterday since my surgery on the 28th May I was able to cock my leg over my bike and I went for a hard 12-mile ride thru the woods and fields. Not bad after 4 months following major surgery. There is life after cancer and I am here to prove it, I’m 76 years old now living life to the full every day and loving it.
MY PROSTATE CANCER JOURNEY
My story starts in April 2018 where I noticed that my bodily water works did not seem to be working in the normal way. Like a lot of men I put it to the back of my mind, not thinking anything was wrong and that it would sort itself out after a period of time.
I am currently employed as a HGV driver for Sainsburys supermarkets so naturally it had an impact on this, as being in charge of an articulated vehicle and having water work problems somehow did not fit together, as being able to just pull over and go to the toilet was not really an option. It was around this time that there was a lot of media news that Bill Turnbull the BBC presenter was suffering from Prostate Cancer and that it had been found by the fact that he too had had water work problems.
This is where my journey first began, as my wife Sheila, to who I have been married for 38yrs, drove me mad to get my problem checked out by my GP. Reluctantly I relented and booked the appointment, and maybe the greatest stroke of luck befell me, as the GP who examined me was an ex urinary hospital doctor who had gone into GP practice. He was very aware of the signs coming from the examination and the need to get further tests done at the hospital.
First of all I had to have a biopsy taken of the prostate, together with a MRI scan to give definitive knowledge of what the problem was and how they were intending to deal with it. At this stage I still had no idea what my problem was and had to just wait for the results to come back. An appointment was made for me to see Professor Sherif and it was at this point I was made aware of the results. This appointment took place and I was informed that I had prostate cancer and it needed to be dealt with.
I don't think anyone prepares themselves for those devastating few words. I was given options as to how I wanted to proceed and what treatment I wished to go forward with. Both my wife and I opted for the Prostatectomy as this would totally remove the cancer, and I was booked in for the procedure on 18th September 2018, to be carried out by the Professor.
I am now minus my prostate and over a year later am hopefully continuing to be cancer free.
The whole procedure, although very uncomfortable, took place and left me needing a good restful period afterwards, but I have to say it has given me some of the funniest moments, due to the alien condition the procedure leaves you in. Would I go through it again? YES I WOULD as the treatment process I received, from all the medical teams, was absolutely brilliant and made my journey easier than what it might have been.
I would like to finish off by trying to get the message out to everyone that reads this. The signs for me were not of a nature that would have given me undue concern, as there was no pain or discomfort when passing water, but I knew something was not right. So if in doubt, get it checked out, as the consequences for not doing so can be far worse.
Concluding my journey I would like to say, Keep well everyone and remember the treatment for this disease is now very advanced and effective, but by getting early detection you can definitely help your situation. So please make all of your friends aware of this.
Michael Careys story which show him fit and well playing badminton after surgery.
There are five urological cancers:
prostate, bladder, kidney, testicular and penile cancer.