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I was admitted into hospital in May 2016, with what I thought was a chest infection. I had been backwards and forward to the GP for a few weeks with a temperature and some other symptoms, and eventually after various doctor’s visits and an ambulance call-out I ended up in A&E. My temperature was over 40 and I was being extremely sick and vomiting up some blood. I just thought it was due to being so sick over a period of time and I naively didn’t dream it could be anything else. I’d even had an ambulance out the night before as my temperature was so high but they thought it was the flu.
When I arrived in hospital my temperature was still over 40 and I had extreme pain in my left hand side, which we later found out had been my spleen rupturing. My bowel had ruptured too, but I actually didn’t feel it, it had happened slowly over time, and didn’t explode with a bang. I had thought the pain was a broken rib- I’d recently been camping in a storm and hit my side while tackling an awning in the wind, and I thought it was just that.
24 hours later I was diagnosed with bowel cancer. The cancer had already travelled through my abdomen and spread to my spleen, pancreas, liver and kidney. My consultant is Mr Cheetham – who is absolutely brilliant. He explained my test results clearly and with compassion and that I needed to have surgery. They planned to remove a part of my large bowel and do whatever else they could to improve things. He explained it all in minute detail, exactly what was going to happen. It was a massive shock and I asked if I could go home for the night before having surgery the next day; he told me it wasn’t safe and I was ‘probably the sickest person in the hospital’. I couldn’t work out how this could be; I wasn’t in pain at this point (probably due to painkillers!), I was walking around and it was only then that it occurred to me how serious this could be.
So I went into surgery; I had signed a form to say that they could give me a [colostomy] bag if they needed to, and I just remember waking up and straight away literally patting down my stomach and realising there was no bag. I then went back to sleep again and woke up days later. I have no idea really what happened in that week. They managed to avoid giving me a bag, which was great, and they also managed to save all of my small bowel. They removed a piece of the large bowel and also removed my spleen. They took a shave of my pancreas and kidney to remove the cancer, but they couldn’t remove it from my liver as this needs a specialist surgery which isn’t available in Shrewsbury. When you looked at the scans of my liver it just looked like cancer; you really couldn’t see anything else.
What amazes me about these operations is how quickly you recover; you go from feeling like you’ll never get better, to being up and about within a few days- the human body really is amazing. You lie there thinking “I’m never going to get better” to three weeks later walking around the wards wanting to go home.
Sadly I got an infection post surgery; it was nothing to do with the hospital but when my bowel had ruptured. This meant I was in hospital longer than most people would be and it took me a month to get home. I found this time harder mentally than physically but I was blessed to have an amazing team around me from Nurses to other patients. The support you get from other patients is incredible.
In July 2016 I started chemotherapy and it was… interesting! You get told absolutely everything, you get a great introduction to the treatment but no one can really tell you how rubbish you can feel, and how much it can hurt.
I had my first five chemo treatments and got neuropathy, so I lost the feeling in my hands and feet. That’s funny in its own right; at this point we were coming up to winter, and it’s cold, and I can’t feel my feet so I’m face-planting on Pride Hill while I’m Christmas shopping with two teenage boys who both think it’s hysterical (and everyone else thinks I’m drunk!). Or I can’t feel my fingertips and I’m trying to cut up vegetables with mittens on, or using gloves to go in the fridge. You do have to really try and see the funny side.
So, after those first five chemo treatments I went up to the Queen Elizabeth Hospital in Birmingham for my liver surgery. They removed as much of the liver as is safe to do so, and took out all of the cancer. At this point, I was cancer free, and we all got very excited. They sent me home five days later, but then my liver ruptured and I got rushed back into RSH. I put on about a stone in fluid in the space of an hour and was really sick again. A week later I came back out of hospital and started chemo again. It was intended to be ‘mop-up’ chemo to make sure all the cancer has gone.
In the April I was getting a pain in my side, in the area of my liver. I was really paranoid about any pain in this area, so I went in for a scan and there was fluid around my liver. They wanted to drain it, but not only was there fluid there, there was also cancer in my lung. The doctor in the AMU had to tell me; he was so sweet and lovely and I think he was as upset as I was.
So, I started chemo again, and I’ve been on it ever since. It started off with a tumour in my right lung, then two or three, then it went into my left lung so I’ve had sections of both lungs removed and we got to the point where I only had a small tumour remaining in my whole body.
I then went for a scan again because I was having some pain in my shoulder, and now the cancer was in my bones. I wasn’t naïve about it; I knew the treatment was pretty much palliative anyway, but now it’s definitely palliative. The big thing for me is that palliative is not the end. I’ve still got a life.
It’s all very sad at first, and the fabulous hospice nurse comes round and talk to you from how you feel emotionally to pain control and most importantly what I wanted for my end of life care but actually physically I don’t feel any different to how I felt before. In some ways I actually feel better because I no longer have all the cancer. I only have a small tumour in my rib (along with the lung tumour), and some days it hurts to breathe in and out, or it feels like a dog gnawing on my rib, but I have a morphine patch and just get on with it. I must have had cancer for two or three years before I found out- I felt fine, but looking back now I did have some of the classic symptoms. But I was a busy working mum and you’re not supposed to get bowel cancer until your over 55 anyway, aren’t you? I was 45 and living a completely normal life.
I have chemo every fortnight now to manage it, and we fit family life around that. My two teenagers know that I have good weekends and bad weekends and we work around it. I was really struggling for a while and wanted to stop treatment, but my nurses worked with me, we dropped the level of chemotherapy medication to 80% and now I’m coping fine. I have a few bad days after every treatment, but 10 days out of every two weeks I feel fine. It’s all quite simple, really. It’s not half a depressing as everyone thinks, and I’m sick of being patted on the head, having my shoulder rubbed and have people tilt their heads when they talk to me!
I call my cancer ‘the gift that keeps on giving’; it just didn’t want to leave me! We deal with it with humour, and my family have been brilliant. My boys are now 16 and 17 and it’s completely normal life for us all now. I’ve been very open about what’s wrong; I answer any questions as honestly as I can. That might not work for every family but it’s worked for us. We don’t focus on my illness, but we do spend more time together now.
They don’t stop being normal teenagers. The other week my son came in to the house through the back door, and I’m lying on the sofa being really sick in my nightie, and his friend follows him in right past me shouting “Hello Mrs Hudson!” Of course I don’t want them to see me like that but we deal with it well. Yes, it’s horrible at times but there’s good things to be found in it and we do laugh a lot too.
My treatment in the Lingen Davies Centre has been brilliant, they’re like family now. I’ve been at least three times a fortnight for two and a half years. My youngest son doesn’t ‘do’ hospitals but he does facetime, text etc, while I’m there. My husband and older son do come with me, and the team ask after them if they’re not there.
As soon as you’re having palliative treatment they really do treat you like a human being, not just a set of symptoms. It makes so much difference. The people in the unit are real people, and they emotionally invest in you. I saw one of the girls from the unit recently at a school function for my sons. She came over and had a chat with me about the boys, we didn’t mention cancer or any aspect of my treatment.
I do have side effects from having so much treatment. Mint toothpaste hurts my mouth too much now, so I use strawberry toothpaste for kids. I also don’t eat a lot of meat any more, because I have so much internal scar tissue that it’s difficult to digest it.
The feeling in my fingers has mostly come back, but the soles of my feet have gone. If I get cold, I can get to the point of not being able to feel where my feet are at all, so I can’t walk straight. If I’m on my own in the supermarket and go into one of the fridge aisles I’ll start weaving, and the general public are really unforgiving. They have no patience for you walking in front of them or taking more time to get change out of my purse because my hands are too cold.
It can ruin you day; I imagine it stops some people going out and that’s awful. I get abuse for parking in disabled spaces. One bloke went on and on to the point that I lifted up my T-shirt and showed him my scars- I don’t think I’ve ever seen someone walk away so fast.
I can’t wear high heels any more because of the neuropathy, I can fall over in flats so heels are seriously unsafe!!
I sometimes use a wheelchair; not because I can’t walk, but because I’m too tired. The fatigue really hurts; some days I can’t even sit up and it’s a really weird feeling. Next time I’m in my chair I think I’ll wear my heels as I can’t walk in them any more. People do talk over me when I’m in the wheelchair, and ask my husband how I am rather than talking to me. You also get smacked in the face a lot by clothes hanging in shops as none of them are properly set up for wheelchair users. This has been a real education!
I have no immune system any more as they removed my spleen- I take penicillin every day and a cough or cold can make me seriously ill so I do have to be really careful. I have to avoid the whole world; when my children have a cold they are so good- they stay in their rooms.
The worst side effect for me is boredom , so I’m starting a blog. I can’t work because I don’t feel well often enough and it would be unfair to an employer when I cant offer 100%, but I can do something that’s in my own control to manage. It’s something I used to do, and I need a target to work towards.
Having said all this, there have been far more positives than negatives. I know that sounds weird, and of course I miss my old life and I’d love to not have cancer, but in many ways I wouldn’t change it.
You make friends for life with other patients. You can talk to them about things that no one else really understands. They know how the pain feels and what you’re emotionally going through.
I know I’m terminally ill, but I don’t want to know a timescale. We’re all terminal, but we all think we’ll all be old, and in bed looking serene when we die. But, only the good die young!
People don’t talk about bowel cancer, because they don’t want to think about it, but it’s so common. We need to break down the barriers and get people doing their screenings. Yes, it’s a little bit unpleasant but it’s so much better than the alternative. You get the screening kit to use at home, on your own, in your bathroom and there’s no doctor involved. There’s no reason not to do it but so many people don’t.
People are still very scared, and they don’t want to know the outcome of a test; but if you’ve got it, taking the test doesn’t change that, it just means you can deal with it.
I have so much life to live and so much I want to achieve. My wonderful husband lovingly calls me ‘The Old Bull’ and with my family and friends and a large dose of humour this old bull is grabbing life and having a ball!!!
Tom, a secondary school PE teacher, was diagnosed with cancer in his salivary glands in February 2017. He lives with his wife Lisa and their three children in Pontesbury. Tom and Lisa spoke to us together, to talk about Tom’s treatment and how they managed as a family through a challenging time.
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