Making a Difference

As I put the keys in the ignition, I was already fighting back the tears. There were six ladies at the research Focus Group. Five cancer patients and one carer. Three ladies including myself affected by breast cancer, one by lymphoma and one by bowel cancer. Three ladies had a terminal diagnosis including the two other breast cancer patients. I considered myself very very lucky. However, as personal stories unfolded, I realised it was a very fine line between me getting the diagnosis or being sent away home, having been more or less told that there was “nothing wrong”. It was down to the nurse at the ultra sound session asking the operator if I needed a needle aspiration, he had said no, not if there’s not a lump. I was ready to walk out at this point as I was clearly wasting everyone’s time. She asked could I feel a lump, I said yes, that was why I was here. She organised the needle aspiration that saved my life.

Sadly I listened to other similar stories, Claire (not her actual name but for confidentiality reasons) had been back and forth to her doctor for three years feeling unwell, then aged 37. At 40 she was diagnosed with advanced breast cancer that cannot be cured. She had, three years earlier, been told by her GP to go home, lose some weight and do some exercise, then she might feel better. Irene went to her GP after her leg swelled up on holiday. She was given water tablets for several months. She was eventually diagnosed with lymphoma. However, as the stories unfoldedH

Janet was recalled following a bowel screening. A polyp was found and she underwent surgery, only to wake up to find she had been cut the length of her abdomen to remove a stage 4 mass from her bowel.

The thing is, cancer is a silent killer. You cannot see it. It’s not like a broken arm. We were six gorgeous ladies sat round the table at the forum, chatting, laughing and shedding a tear or two, but looking by all accounts “normal” and even fabulous, yet three of us would not live for more than what, three years?

The two researchers were keen to hear all about our experiences with the health services, good and bad. This information will be used to educate future professionals with the hope of providing an efficient and better care service. We will be given the findings once all the forums have taken place. From our own group there was clearly plenty of mal practice and lack of care. There had been two official complaints put in about a GP and a consultant. Indeed, I should have reported my own breast care nurse who was largely incompetent in several areas and who I now have no desire to deal with.

The forum wasn’t all bad, although many of the care stories were. As someone said, the treatment we had all received must have been alright as were all still alive! I think some of that was more to luck than judgement though and some of us were more alive than others!

We shared stories of immense shows of support from family and friends, almost an entire family shaving their heads when Debbie started chemo! Nothing but praise for the anonymous Macmillan nurses on the end of a phone who offered valuable help and support to us and our families.

What the forum did for me, apart from drag me down emotionally for a few hours, was it made me realise more than ever, that I have to be in charge of my own life and my own care. With my hospital appointment coming up on Tuesday it is up to me to get my concerns across and to make myself understood and believed. I have had to wait for months for this appointment since first going to my GP. It’s unacceptable. It’s only down to the Macmillan telephone support that I am going at all.

The forum gave us all the chance to have a voice and to make a difference for those in future generations who find themselves swept into the health and care service as we have. For them, for Alice and Maisie, we hope that the NHS will provide a system of care, comfort and quality treatment delivered by professionals who will have the skills, knowledge and the time to care.