Wendy's story

Wendy was diagnosed with bowel cancer aged just 47.  At 48, she was given a prognosis of less than 12 months and a gruelling schedule of chemotherapy but sadly died towards the end of last year.  She kept a daily record of her journey on a blog which gives an incredible insight into her experiences from diagnosis to the end of her life. Last year, she was able to tell us how the Rennie Grove nurses helped her…

“My name is Wendy Guy, I'm married to Steve, I have two children - Rebecca and Richard. Steve has two children, Lauren and Chris. We live in High Wycombe. Rebecca lives with us (nurse Rebecca) and my mom, Judy, lives in the Midlands where I grew up. Chris and Lauren also still live in the Midlands with their Mom. My Mom has also become nurse and housekeeper throughout my illness. My son is in the Army and comes home when he can.

“I am 48, born in 1967, and I was told I had bowel cancer on 22 February 2015. In August of the same year I was told I'm stage 4 with no cure. My life in a few months has changed forever and my blog was started to help others through their journey, to educate people, to offer guidance to supporters who nurse loved ones and to leave a trail of hope, understanding and love for you all.

“How it all started….

“I remember having two bouts of intense pain before the chronic pain arrived.  Those were my first and only symptoms of the disease.  Towards the end of January I took my management team from British Home Stores out for a meal to thank them for all their hard work.  I didn’t drink and I didn’t think I had eaten loads, but when this intense pain suddenly started up, I assumed I must have overeaten. 

“In hindsight, the pain was caused by the tumour eating away at my stomach muscles, having punctured the wall of my bowel.  But of course none of us realised this then and the medics were stumped initially because of the lack of other symptoms.  The GP thought it might be a problem with my ovaries; the consultant thought it must be appendicitis. 

“I was a normal working mum, up at 5:45am, into the London store, back at home between 8:30pm and 9pm to cook tea.  I’d be on the go all day in my job, in 4 ½ inch heels, loads of energy.  I think my team knew something was wrong before I did… they bought me a hot a water bottle when they found me holed up in my office and they helped me when I could barely walk between meetings within less than 48 hours of the pain starting. 

“So when my husband, Steve, came home from work and found me lying on the sofa, he knew something serious was up.  He insisted we went to A&E – but despite blood and urine tests and ultrasound scans – they could find nothing wrong.  A second ultrasound located a mass on my bowel, so they booked me in for a CT scan the following day.  This was my daughter’s 22nd birthday so I was keen to be in and out and then up to town to take her to see The Lion King.  But in the end I was at the hospital for more than 10 hours.  I remember being asked questions about my bowel movements and lying because Steve was there.  We have a great relationship but I was embarrassed to talk about poo in front of him.  As a nation we have to get over this embarrassment; this is why people are dying early and unnecessarily. 

“The CT scan was also inconclusive – but instead of the planned surgery for suspected appendicitis – they sent me home to take a horrible drug with the most intense laxative effect in preparation for a colonoscopy. 

“This investigation showed a black mass and I remember thinking: ‘I’m no bowel expert, but that doesn’t look good.’ I asked the specialist: ‘Are we looking at cancer?’ It seemed the question now was whether this was a benign or malignant growth.  I’d had previous brushes with tumours but they had all turned out to be benign. 

“There followed two of the loneliest days in my journey with this disease.  People came to see me while we waited for the results of the biopsy, but no-one would talk about it.  Finally, Steve and I started on the wine and drank and talked and cried till 2am.

“Even the oncologists seemed not to want to talk about it.  When my results came in I couldn’t get a straight answer and it was only when I went, in desperation, to my GP that the poor man read the screen full of my notes as we were demanding to know what was going on and he realised he was going to have to tell me it was malignant and that my prognosis was not good. 

“Second only to the shock of the diagnosis was the fact that there wasn’t really anyone for me to turn to at this point.  I had assumed that a support network would kick in once I was diagnosed – but there was no-one to talk to or to take ownership of my pain relief.  Steve was responsible for my medication and I would turn to him saying I was in pain and the poor man would have to tell me that I couldn’t have any more pain killers; I’d reached my daily limit.  How horrible for him.

“I was scheduled to have an operation on 24 March. It had been a month since my prognosis and two months of pain and medical tests, which had sucked the life out of Steve and me. Our relationship – built on love, friendship, contentment and passion - had turned into a constant discussion of cancer.  It takes over your whole world and becomes its own disability. Even on the nights that we said we were bored of talking about cancer and decided not to talk about it, within minutes we were back on the subject and going over the same old ground again.

“So in some ways it was cathartic to get the cancer out.  I had almost a third of my bowel removed but the surgeon said that the cancer had gone through the bowel wall and had started to eat away at my tummy so he had had to scrape away the muscles.  As the cancer was no longer contained in one area, it was impossible to remove in its entirety. I was going to need chemo.

“But the big bombshell for me was that he had had to leave cancerous lymph nodes behind as they were supplying blood to vital organs. The cancer was living in me still.

“I was desperate to start the chemo because the idea of the cancer living on inside me in whatever form was a daily thought that I found so hard to cope with.  But the first round of chemo didn’t work, which meant my prognosis was suddenly a whole lot worse.  On top of that, my lymph nodes were starting to swell and I was in pain again. 

“I spent weeks in agony and it was only when my GP finally suggested a referral to Rennie Grove that, by working with my GP and oncologist, the charity’s nurses finally started a plan to get my pain under control.  It’s a daily challenge though, because the morphine slows my bowels down, and the resulting constipation puts pressure on my tumours, which creates more pain. But the Rennie Grove nurses are determined and efficient.  Within a few hours of their first visit they’d organised a disabled badge; arranged for a wheelchair; advised us about financial support and requested a drug change. They also have access to my notes and now I feel that bit more in control because we can discuss my prognosis and what is going on in my body.  They ring me regularly, just to check how I am. And they visit every week to check my symptoms, review my pain relief and request or suggest changes to my medication by liaising with my GP and specialist.  I feel cared for and looked after; I feel like nothing is too much trouble.  And they are there for Steve too.  I recently contracted an infection, which made me drowsy and unsteady on my legs and my temperature was climbing.  By 8pm, Steve was really worried but because the charity operates a 24-hour service, he could call Rennie Grove and discuss his concerns.  Together they decided an ambulance was the right course of action and I was whisked away to hospital.  Because I’m still undergoing chemotherapy, intervention is all the more important if infection strikes.

“So charities have proved to be my lifeline in more ways than one.  They haven’t just helped me cope with the cancer physically - but emotionally too.  It was only when I got to know Leanne from Beating Bowel Cancer that I fully understood my prognosis: I had stage 4 cancer – so-called because the tumours had broken through the wall of my bowel (so were no longer contained in one area) and had affected more then five of my lymph nodes (in my case double figures I’m afraid).  This meant that the disease was able to spread elsewhere in my body and that’s why the official diagnosis was stage 4 bowel cancer – in my bowel – but also, bizarrely – in my neck.  Even amidst the fear I felt, I found this technicality vaguely amusing.  

“When you’re dealing with cancer, your reaction is the only thing you have in your control.  For me, understanding what was happening to and in my body was crucial and these charities have helped me do that.  

“Cancer doesn’t define me now: I’m still doing some project work for BHS, I write my blog daily and I’m campaigning for equal screening for bowel cancer, i.e. screening for everyone from age 50.  The statistics speak for themselves: 90% of people survive bowel cancer if it is caught early.  It wouldn’t have helped me, because I’m under 50 – and unfortunately the younger you are, the more aggressive the cancer tends to be – but I want to raise awareness of this disease.  It doesn’t have a high enough profile, despite 4,000 new cases being diagnosed every year. 

“So I started my blog to try to help others; I didn’t think for one moment that anyone would be interested at all.  But 200 people read it every day and it’s received 73,000 hits from all over the world. I’ve been invited to Parliament; made the Cancer-Free video with family and friends; I’ve produced a book; we’re campaigning for equal screening; we’ve written ‘50 Shades of Chemo’ (a support service for people undergoing chemotherapy) and raised way beyond my dreams of £1,000 for Beating Bowel Cancer.  And we are soon to be selling a calendar with mine and my friends’ bottoms on it across England and the world! I have cashed in my pension and bought a Hot Tub and a Daisy Den (so I can keep cosy and enjoy my garden even in the depths of winter) and I’m trying to adapt our home so that we can cope with me being here until ‘end of days’ come. 

“People say how strong I am and that I am inspirational and I’m just not at all. I’m scared and sad. I hate the thought of not being alive with my loved ones and leaving them.  Chemo – whilst unpleasant – is going well, as is my ability to deal with it.  So I’m not going anywhere just yet.”

Wendy explains a bit more about why she supports Rennie Grove…

My sister, Julie, died aged just 25 years old; she had been married only eight months to Ant. There is a post dedicated to her if you want to read the details of that part of my life's journey. After the funeral, as you can imagine, the donations came flooding in from friends and family.  We decided that in her memory we would do two things with the money: the first was to set up a fund to supply yearly study books for nurses and midwives who studied at Wordsley Maternity Hospital in the West Midlands. This is where Julie was practising midwifery; it used to be just down the road from my mom's house and it was also where my son Richard was born.

The second thing that we did was approach the hospital about dedicating a room to my sister there.  They agreed and it was called 'The Shanian Suite.' This was to be a room where families who suffered any bereavement during childbirth could be placed away from the main wards. We decorated the room with matching curtains, bedspread, a radio, and books and although my memory of the room now is faded we wanted at the time a room where grieving families could find peace and comfort in their mourning. Until this room was established you can not imagine the pain parents must have had to endure if they lost a child and then had to be surrounded by other parents celebrating their new born babies. The room was inspired for me by an experience that touched Julie profoundly.  She had attended a birth where there were complications and they had to transport the mother and baby to another hospital.  Julie had finished her shift but wouldn't leave the family. They never got to leave the hospital as the baby died and this affected my sister deeply: the pain of the family, the suffering and grief. I can even now recall her telling me the story of this family… so sad. So the room all decorated remained in use until 2005 when sadly Wordsley Maternity Hospital closed and was demolished for a new housing estate. All maternity services were transferred to Russells Hall Hospital and the room was gone forever.

I recently received a letter and it was from Ant. He explained that the money collected to supply the library books following Julie's death had been sat in an account for over 20 years, as the hospital had closed. He had always intended for the money to go to charity but he could never decide which one to donate it too. Now he knew, and he wrote “I am sure that Julie would be pleased that it's going to such a good cause.”  He himself had added to the money and a cheque was enclosed for £600 and made out in my name for me to choose the right charity for it to go to. The tears and emotions just overwhelmed me and I cried as I typed this story into my blog. A final piece of my sister, past memories of our grief and just seeing his hand-writing of her name brought more and more tears. Steve read the letter and agreed that it was a beautiful thing that Ant had done and we both knew exactly the right place for this money to go.

There is an extra Justgiving page attached to my blog to start fundraising for the Rennie Grove nurses. You may think this odd as I have been dedicating all my efforts to support Beating Bowel Cancer, but this isn't the right place for my sister's money. Rennie Grove is a local charity and not countrywide. They have been amazingly supportive to me and I think, although sad that they will be nursing me through to the end of my journey with cancer, they are nurses and Julie would want the people that nurse me to the end to have this money. It feels to me that my sister is trying to help me through this gift, stupid, I know- but it brings me comfort that through this money she is still part of my life and its journey. Thank you Ant, sometimes words are just never enough to express the depth of emotion we feel.

When I rang Rennie Grove to discuss adjusting my pain relief, I told them about the £600 and about Julie, which made me cry again.  They also thinks it's wonderful of Ant to send me the money to choose the charity on Julie's behalf.”

Visit www.minesbroken.co.uk to read Wendy's blog.

Wendy sadly passed away towards the end of last year but was able to spend her final days at home with her family with the support of our nursing teams.