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.
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.