Our Stories

    Bladder Cancer – a Carer’s view
    At the moment of my husband’s diagnosis I couldn’t take it in. My mind went blank, like a survival reflex it blocked out what we were being told because it hurt and was such a shock, I wasn’t prepared for hearing the word; cancer. It meant only one thing to me.

    My husband’s Sister had died of a brain tumour, his Dad and another Sister from Lung Cancer. My Dad died only 7 days after being diagnosed with Bowel cancer.

    Death. That’s what cancer meant to me and I knew my husband was thinking the same thing.

    I became clingy, I wanted to be with him all the time and started to fuss over him. I didn’t want him out of my sight. I felt like I had failed him, failed to look after him, to protect him and now I was over compensating and smothering him with my attention. Luckily he accepted it all and felt comforted knowing that I cared so much. I would stroke his hand or face and stare at him which sounds a bit freaky but I felt like it might be the last time I would see him. I would sit right next to him on the sofa and hold hands continually.

    I only told those closest to me but I knew I needed to talk to them about it, to have a few people who would be able to help me, listen and support me when I was feeling so low. I didn’t want them to try and fix anything I just needed someone to listen.

    I didn’t tell the people at my works or casual friends when we were out because I felt that I didn’t want to spoil their day and I didn’t want to end up talking about cancer to every single person I was with. Sometimes it felt good to just listen to others talk about normal stuff, pretend that cancer hadn’t reared its ugly head again.

    Slowly though I did tell more people because it does consume you, it does become what you think and talk about all the time. It’s sad that everyone I have spoken to knows someone else who has had cancer. It is such a long reaching disease and touches just about everyone at some time.

    When we were told that the MDT (Multidisciplinary Team – board of specialist who discuss the best treatments for individuals) had recommended removing his bladder we went into a tail spin and crashed. This was the blackest moment of my life, he spent more time in bed not sleeping but just lying there, he could not see past the surgery and was giving up, I felt like I was losing him and it really scared me. I read the information on the options after surgery but he didn’t want to know and couldn’t see the point of going on.

    We were told about a fellow sufferer who was willing to speak to us about his experience of having his bladder removed and we met him at a “Beat Bladder Cancer Together” meeting. He was very happy to discuss everything he had been through, how he had felt, the lows and the highs. My husband came out of that meeting feeling completely different and most of all from my point of view he was going to put up a fight and he would not give up.

    I am so grateful that there is a group of people who are willing to get together and talk to others about their own Bladder cancer experiences because it helped my husband and therefore me to get through a very difficult period in our lives. It is also great that the Carers can be there too, to help each other and know that they are speaking to someone who understands how they feel and that they are not being judged.

    My husband didn’t have his bladder removed and the treatments he has received have been successful. He is putting up a good fight. WE are putting up a fight.

    Non Invasive Bladder Cancer - My Bladder Cancer Diary
    It was one evening in early in March 2016 that I was watching satellite TV and saw the now infamous ‘have you spotted blood in your wee, even if only the once’ advert. This had happened to me that very morning, so next day I was down at the health centre making a GP appointment.

    11th March duly arrived and off I went. On examination, the doctor immediately thought something wasn’t right and referred me for blood tests and for a urology appointment which, she said, I should receive within the next two weeks. It must be something serious I thought!

    24th March, my first appointment with the urology consultant, and with a full bladder off I went for an ultrasound. The initial diagnosis was that there was definitely a polyp, and that he would be referring me for a Trans Urethral Resection of Bladder Tumour (TURBT). There wasn’t really an alternative. If I chose not to have one the suspected tumour would be likely to grow and reduce my options in the future. It was a no brainer; get in, get it out and let me know what next.

    18th April, less than one month later, I was in the Princess Royal Hospital undergoing the procedure, which required an overnight stay. Everyone I saw, consultant, nurse, anaesthetist etc explained what was going to happen. On many occasions I was asked if medical students could observe the processes; I had no objections as they have to learn somehow, and you never know when you might need them in the future.

    19th April, the day after, after I had been told what had been done, and when I had passed sufficient urine and was able to empty my bladder naturally, I was allowed home. I would be told the diagnosis in about 4 weeks time. A couple of days of discomfort (pain when urinating) followed but other than that I felt fine.

    23rd May, I was back at urology for my results. G3PTa. In a nutshell: the good news was that the tumour was confined to the surface of the bladder lining, and it had been caught early. The not so good news: the type of tumour had the potential to grow into the wall of the bladder. So, they wanted to go back in and do a second TURBT but this time with a blue light cystoscopy, to see if anything else was growing, and if so they would deal with it. I would also need to have a CT scan to make sure it hadn’t spread anywhere else. I was advised of the treatment available, BCG, and given a very informative information pack to take away and digest at my leisure, included in which was details of the Beat Bladder Cancer Together support group. Was I panicking? No. It had been caught early, the treatment process had been explained, and what else could I do anyway? It was already there!

    9th June, I was back at the Princess Royal for my 2nd TURBT, this time with the blue light cystoscopy. The only difference to the initial TURBT was the injection of a dye so that the blue light would show up any abnormalities in the bladder. I went home that same evening. Same discomfort as before, but again it quickly passed.

    21st June, my CT scan at the Royal Sussex County Hospital; another full bladder required!

    11th July, results day. The consultant advised it was all good. The biopsies were all clear, but the tumour has the potential to grow back and a course of BCG direct into the bladder was recommended, and duly accepted – I wasn’t going to say no, was I. An initial course of doses weekly for 6 weeks, followed by two shorter courses of 3 weeks each, with looks inside the bladder (cystoscopies) in between each. It was described like a Formula 1 tyre change; come in, get it done, hold it in, wee it out at home, then back again the next week. And it was, appointments were to time (occasionally I got seen a little earlier than expected), and I was on the bus home in no time. The first couple of sessions passed of OK, but by the time of the third and subsequent ones the BCG found its way a lot quicker to the magic spot. There was the frequent urinating, sometimes quite painful, and signs of blood, but as these were normal side effects I put up with them, and they had disappeared in 2 or 3 days (luckily, I was now only working part-time and could arrange my working week around such sessions and ‘recovery’ periods.)

    17th November, it was time for a look inside (rigid cystoscopy) following the first 6 week course of BCG. A half day’s inpatient appointment at the Victoria Hospital Lewes, for another cystoscopy and biopsy, and after numerous cups of tea, an egg and mayonnaise sandwich, and confirmation that I had passed urine I was allowed home. There was minimal discomfort following this procedure.

    9th January 2017, it was back to see the consultant for the results. The biopsies showed no tumour reoccurrence, so I was responding well to the BCG, and continuation of BCG was recommended (the first maintenance sessions), after which there would be another look inside.

    1st February, I started my first 3 week maintenance session. Again, the BCG seemed to kick in fairly quickly with the usual uncomfortable symptoms. However, after the 3rd session the symptoms did not disappear in the usual 2 to 3 days, so my GP gave diagnosed a UTI and prescribed antibiotics to clear it up. Which it did.

    6th April, another rigid cystoscopy at Lewes, and I was back at home that evening.

    2nd May, results day. Good news. No cancer. There was some inflammation, but this was quite common, so the final maintenance sessions of BCG were agreed. But 6 months later as nothing was forthcoming, it was agreed that another rigid cystoscopy should take place before the final 3 sessions of BCG.

    16th November, a rigid cystoscopy at Lewes and discharged the same day.

    9th January 2018, back to the urology consultant and told there was inflammation only and no evidence of cancer.

    7th February, started my final 3 week course of maintenance BCG. The usual discomfort, but bearable apart from getting another UTI after the 3rd dose.

    11th April, I am booked in for another rigid cystoscopy, watch this space………………….

    Bladder Cancer – A Non Muscle invasive view
    The main "lesson" from my experience ( other than coping with the emotional fallout of being told you have cancer) - was that my initial contact with my GP's practice was via a Nurse Practitioner - I had passed blood and was concerned it could be Bladder Cancer ( re. the TV ads) - she sent me away with antibiotics and sent off a urine sample saying " we will prove that it isn't cancer then".

    The sample came back negative - and I then insisted on seeing a GP ( my own excellent Doctor was on maternity leave)- thereafter I was promptly put immediately "in the system" - diagnostic cystcoscopy within 2 weeks, diagnosis on the spot - and operation soon after. Annual rigid cystcoscopies since, so far, no return of the tumour.

    The merit in me preparing a statement may well be more for GP practices, rather than for diagnosed Patients, in that the comment made by one of the Sisters when I was telling her about the "Nurse Practitioner" was - " If a Patient comes to the GP's surgery having passed blood - always treat it as a potential symptom of bladder cancer until proved otherwise".

    I only "lost a couple of weeks" before getting in the system and some sleep - and consider myself really lucky - I also had "complete heart block" some years ago - lucky location and rapid treatment by the NHS (and a pacemaker) have controlled that condition - so I feel myself "twice lucky" and am very grateful to the NHS for the care and treatment I have had, and continue to have with annual checks on both heart and bladder.

    The reason I joined the Bladder Cancer Group was that I want to "give something back" and do anything practical I can to help others who have not been as lucky as me.

    Bladder cancer Non-invasive
    In early October 2016 coming back from few days holiday in France I went to the toilet in Gatwick airport.

    Lumps of blood came out with my urine, I came out and told my husband, it was Saturday, when we arrived home before opening my cases I phoned 111 and told them what had happened and can somebody see me, they said if I could wait until Monday to see my GP and I said no, I need to see somebody NOW, they gave me an appointment and the GP took a urine test and asked me to see my GP on Monday.
    My GP had the result with blood in my urine and said although I should not worry but she will refer me to urologist and in two weeks’ time I had cystoscopy and was showed the shape of tumour in my bladder and was told it was cancer!

    I was numb and said: are you sure? He said with his experience he was sure and referred me for TURBT. I came out and with difficulty told my very supportive husband.

    It was very hard to let our two daughter and their family know. My Daughter had developed breast cancer in 2007 and survived, my brother in low ten years younger than my husband had brain cancerous tumour and had died in 2 months’ time in 2015!

    We did not sleep that night with worry. The appointment for TURBT was 17th of November 2016. I had a small perforation which I had been told before operation that could happen, so I was sent home next day with a catheter.

    I had the catheter for one month but the community nurses were brilliant and would come and fix it for me if I had any problems. The hole was healed after one month, my cancer was G3 and aggressive, I was told that I had the option of having BCG treatment or go for removal of my bladder.
    I wanted to keep my bladder as much as I could, I chose BCG. I have been suffering with Rheumatoid Arthritis for years but it was controlled with medication.

    In my first session of BCG I was asked about medication, when I told them that I take Methotrexate, I was told that I can not have BCG treatment because it will not work with this medication.

    I was devastated, I was given an appointment with the consultant next day and was told that I can have another treatment called Hot mitomycin, this is done in St George’s hospital in London.

    I had second TURBT in London and was told that a small cancer left in my bladder. I found it very hard to travel 2 hours and back with full bladder, with consulting my Rheumatologist I decided to take myself off from Methotrexate and start BCG in Brighton.
    After 6 BCG I had rigid cystoscopy I was told that I was clear. I had my 3 maintenance and another rigid cystoscopy and another clear.

    I started my second three weeks maintenance and waiting for my last session Wednesday. After that it will be another cystoscopy and another waiting time for the result,

    but with having brilliant team of GP, everyone in urology department and all in Princes Royal hospital and support of my family, I have coped well and regardless of having so much pain with my arthritis (have been put on steroid for now)

    I have been optimistic, in the mean time I have made myself ready for any result.

    When I asked my GP that as far as I know bladder cancer effects mostly men, overweight, or smokers and I am none of them with history of healthy eating and doing exercise all my life, her answer was: I think you were just unlucky!