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Real Stories...

My name is Lin

"It has made us stronger as a couple, although at times I could have run away."

I am 64 and have been married to Pete since 1973, so that makes 42 years this year. We were both born and grew up in London, but moved to Northamptonshire a year after we got married where we had our daughter, Joanna. She's now 36 years old and married with her own daughter, Libby, our beautiful grand daughter,who is 8 years old.  

How did bladder cancer come into your life?

It was autumn 2008 and we had just come back from holiday. Life was good. Pete and I both worked, enjoyed our jobs and our life was busy. Libby, our granddaughter, was just 18 months old and a great source of joy. At the time we did not realise how lucky we were and how much we took for granted.

A couple of weeks after coming home from our holiday Pete came down for breakfast before going to work and said, “I've just seen a small spot of blood in my wee, do you think I should see our doctor or wait and see what happens?” He said that nothing hurt and that he didn't feel unwell so he was going to leave it. We both went to work and forgot about it.

I spoke to my daughter Joanna later (who is a nurse) and told her about her Dad. Her immediate reaction was that he should see our GP. Little did we realise what a journey this was to be. Pete went to see the doctor, who tested his urine (it dipped clear) and put him on antibiotics. Our daughter made Pete insist on being referred to a urologist, who arranged for Pete's first cystoscopy – the first of many. The appointment came through for December, the week before Christmas.

On the day, we dropped him off for his appointment and he said he would ring when he needed picking up. Later that day he rang me, but insisted my son-in-law picked him up rather than me. Alarm bells were ringing, and the next thing I know my daughter arrived at the house in tandem with Pete. Pete then told us that they had found a tumour in his bladder, and it was probably cancer. He said the consultant would know more after the biopsy and removal, which had been scheduled just after the Christmas holidays.

Christmas was surreal. While most people were having fun we were quietly waiting for confirmation that bladder cancer had taken over our lives. As I was to learn with time, bladder cancer likes to ruin our Christmas! The holidays ended and Pete went in to have his TURBT under general anaesthetic, but he had a streaming cold and the anaesthetist would not put him under because of his wheezy chest. The consultant said it was no problem to wait another couple of weeks as it was just a tiny tumour. For the first time I breathed a sigh of relief; it wasn't that bad. I now realise how naive I was.

What was the initial cancer diagnosis?

Pete was initially diagnosed with a low-grade, non-invasive tumour.

They removed the tumour. It was non-invasive bladder cancer and then they did a chemo wash. At the next appointment Pete was told he needed 6 weeks of Mytomicin treatment, and that is how we jogged along for the next few years.

Over the course of the next few years, the bladder cancer progressed, although we did get a few all clears along the way. After a cystoscopy in summer 2012 Pete went to see his consultant as normal, expecting 6 weeks of treatment or an all clear, but was instead told that the cancer had returned, and was more invasive and more aggressive. He was referred to the urology department to see what the remaining options were. We were told the options were chemo followed by radiotherapy or bladder removal. At the time that scared the life out of Pete. He was determined to keep his bladder, even when he was asked by his new consultant, “Why do you want to keep a bladder that does not work properly?”

Chemo started at the end of August and was a bit of a rollercoaster, but he got through it, although it did cause pulmonary embolisms (blood clots) in both lungs. At the end of the three chemo cycles they did another cystoscopy, which was all clear, so radiotherapy was now the course of action because of blood clots, but he had to have one more course of chemo which really made him poorly, so he was in hospital Christmas Eve for a platelet transfusion. The New Year brought 6 weeks of radiotherapy, and he coped with that without too many problems – he was still working, but his fitness was awful. He gradually clawed his way back by regular small amounts of exercise that he built up.

I thought then that it was time to start doing some of the things I had always wanted to do in retirement. Bladder cancer coming into our lives had scared me – what if we did not get a retirement together? In April he had a cystoscopy and we got the all clear, so we decided it was time to party and took the whole family to Portugal. Thank goodness we did, as on holiday Pete started weeing blood again, although he was initially told this was because of the radiotherapy treatment. Finally he got another cystoscopy in the late summer, when they found the cancer had returned and it was invasive and aggressive. It was time for bladder removal.

I can still recall us standing in the car park like a bomb had hit us when we were told the news. We went into robot mode, just getting through each day. Pete coped with this better than me, but he was the one who was having tests and doing exactly what he was told by the medical team, while I felt like a spare part. He made the decision to have an Indiana pouch, but I was not sure this was the right decision and veered more towards the stoma and bag. A neobladder was out of the question because of the radiotherapy.

Pete's operation was scheduled for New Year's Eve and I remember that day so well. Pete had to be at the hospital at 7 am, so we got up around 5 am. My daughter came with us and they let us stay until they came to take him down to theatre at mid-morning. After a hug for us both we watched him walk away down that corridor, not realising that the Pete who left me would not reappear for 18 months. We finally got news at 7 pm that he was in recovery and going up to HDU.

What followed was about 6 months of stress. Although I had now found the Fight Bladder Cancer Confidential Forum, I was too frightened to post and I just read what other people had to say, taking advice and information where I could find it. Eventually, as Pete's condition in hospital worsened I did post and found so much support. Pete was very poorly and what we expected to be a week-long stay in hospital went to nearly 5 weeks, with long stays in intensive care, infections, sepsis, a collapsed lung and a paralysed bowel. He lost 3 stone in weight and I feared he'd never come home.

Over the next few months I learnt so much about medical emergencies. Pete had sepsis a couple of times, and I learnt when to panic and when not to as he went in and out of hospital. Pete was one of the few to have complications from his surgery, with scar tissue blocking the left kidney from the ureter into his pouch – this was causing the sepsis along with his generally poor health at this time. His body had no fight left in it. It was so awful to watch.

Pete finally had the procedure to unblock and remove the nephrostomy in the spring of 2015. However, the stent caused another bout of sepsis, and it was finally removed in the summer. Recent tests of his kidneys and scans have all some back fine so it seems to have worked. Pete is well at the moment and the doctor's final verdict after his op was the highest-grade cancer in the end travelled outside his bladder to his prostate, but luckily with no lymph node involvement.

What life changes have you made now you are affected by bladder cancer? 

We're trying finally to get back to a normal life. Is Pete free of cancer? We don't know and will just have to wait and see. Sitting and watching someone you love go through this is awful, you feel so helpless most of the time. You become exhausted trying to fight for them, but sometimes Pete was not in the right place to accept this. I cried a lot in the bad moments, but my daughter was a rock pulling me through as were one pair of really good friends and a neighbour,. My own health through this has not been the best and my elderly mother has deteriorated recently as well. In the end the cumulative stress manifested itself in both physical and mental health problems for me, but luckily I have a great GP who keeps a watchful eye on me.

What positives can you share about your experience?

What this journey has taught us is to live for today, and to relish all the normal everyday things you take for granted.

How has Fight Bladder Cancer helped you?

My first post on the Confidential Forum was a cry for help as I felt so alone. I was on automatic pilot at the time, but it was so good to speak to people who had lived through the same experience. The response I got from the forum was unbelievable, and I began to realise I was not on my own. It became my comfort when I was at home on my own. I got most of my information from Fight Bladder Cancer, having learnt very quickly not to trust Dr Google.

I don't know what I would have done without Fight Bladder Cancer and the forum. People I have never met have become my new family. I can laugh with them and cry with them, I can be myself, and I don't have to put on a show. Being the one on the sidelines of cancer is not easy; watching someone you love feeling poorly, in pain, scared and wondering if they are going to make it is very hard.

What advice would you give someone who has just been diagnosed?

Find the support of others going through it. You just don't feel so alone anymore. To be honest, that was my saviour.

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