Rachel's Story

 Source: http://www.bowelcanceruk.org.uk/voices-of-bowel-cancer/rachel's-story/

A marketing director for a software & information company, Rachel is a single mum with two children aged 12 and 14.

Although her aunt had died from bowel cancer at the age of 50 two years earlier, she had not mentioned any of her symptoms and Rachel was unaware of the signs. When she visited her GP for the first time to discuss bloating and stomach pains, the GP dismissed the possibility of bowel cancer because of her age, she was 45 at the time. Looking back, perhaps Rachel's own GP knew her too well and didn't ask sufficient questions. They thought it was because she had a stressful job and said it was IBS.

When Rachel returned a second time to see her GP to have a coil removed, she mentioned other symptoms such as blood in her poo, a pain in her left hand side and weight loss, but the GP said it could be an early menopause.

Rachel herself thought she had ulcerative colitis the third time she returned to the GP which is when she saw a locum doctor who went through list of questions systematically and said it could be bowel cancer and referred her to a specialist. It had taken a year to get to this point from the first signs of the symptoms.

The first step was for Rachel to see a colorectal surgeon who found a lump in her stomach and signs of blood and booked Rachel in for an urgent colonoscopy. Meanwhile, her GP had sent off for several blood tests which were all clear.

However, a week later when Rachel had the colonoscopy, a tumour was revealed, and it was a nasty one according to the surgeon who also advised a CT scan that same day and a MRI the following day. Her worst fears were confirmed when the scan showed that the cancer had spread to her liver and more than likely her lymph nodes.

Thanks to private health insurance, the process was very quick. But in the space of a week, Rachel was told she had advanced cancer and felt she had no information to deal with it. Or what the future held.

Her consultant said they could operate the following week to remove the bowel tumour, which was on the rectal sigmoid joint.

The two options were a rejoin or an end colostomy bag and Rachel was advised the latter would be preferable, although there was no guaranteed reversal.

After the operation, the oncologist told Rachel he had removed 20 lymph glands and seven of them were cancerous. The disease had gone through her bowel wall and spread into liver. Which meant she had a stage 4 cancer.

A further PET scan showed that there wasn't any further cancer in her body so on the basis of that the consultants decided to go ahead quickly and remove a section of the affected liver and also the gall bladder to try and avoid further spread six weeks after her bowel operation.

This was followed by a six month course of chemotherapy which extended into eight months because Rachel was very ill with each cycle due to a very low white blood count.

In July 2012, a CT scan revealed that she was finally in remission.

Then in January 2013 she had a bowel reversal. It was the final piece, Rachel now feels that she has her body back.

Rachel says, "One of the worst moments for me was when I was first diagnosed with bowel cancer, I remember feeling there was nobody (apart from my family) there to catch me. The medical profession took care of my body but I felt there was no support for my mind, just the stark, bare fact that I had advanced bowel cancer. That's when I turned to Bowel Cancer UK and also found an incredible network of support online. "

"It took me three months to get over the shock of having bowel cancer, those months when I thought I was going to die were terrible, what I really wanted was some tips and reassurance and to speak to someone who has been through it."

It has had a dreadful impact on her children. They both get quite anxious and worry at the slightest cough or symptom, in case it is a sign of the cancer coming back. She has tried to keep upbeat and very matter of fact about the disease which she feels has helped.

While Rachel had support from a cancer charity medically, mentally it did not prove to be successful - they were sent nurses from the 'end of life and terminal care team', who suggested that her children should read books about parents dying, which Rachel was not prepared to contemplate.

Rachel feels there is a real support gap for children in the 10-15 age bracket, she felt there were no resources for them, the support they were offered was either negative or online. What she really wanted them to be offered was someone to talk to or give them small treats. Neither school offered any support or approached her children during the entire length of her treatment and hospitalization.

The experience of having bowel cancer has made a big difference to Rachel's life, shaking her up and it has been a very painful process.

"I am an upbeat, happy person anyway but it has opened my eyes, and made me feel that I was rushing through my life. I appreciate my family and friends so much more. I've met some incredible people, who have showered me with love and kindness and I don't worry about small things any more. It's been really overwhelming how much people want to help."

Having bowel cancer has also had an impact on Rachel's career. She took a year off, while she was having the operations and chemo and has just had six weeks off for the latest operation, and is intending to go back to work in mid-February. Her company has been very supportive but being away from work for long periods has still been awkward. "

In Rachel's words, "Unless you have been through it you don't know what it's like."

Rachel's biggest pinch points are:

Doctors having common sense to question people, especially about their bowel habits. Not a subject people like talking about, so needs encouraging
More support to help people in shock when they find out they have cancer
Waiting for results and what you're going through shapes you for the rest of your life, you have a valuable opportunity to 'set your mind' and attitude to help you face the treatment
In remission, but lives with thought of recurring and sometimes can't help feel an outsider, support groups really help

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