Our Stories
Baldies Unite
My story is not just 'my story'...it can only be told inter-twined with the story of my daughter and grandsons. Cancer had never been part of my family history at all. Like everyone else who has never had to know this world...it only happens to other people, right?!?
The shock of my own breast cancer diagnosis was muted, as five months earlier my 4yr old grandson had been diagnosed with stage 4 high risk neuroblastoma. Our world had already been blown apart, so what was one more bullet going to do. While my daughter and partner were living at Addenbrooke's hospital with the little one, I had stepped up to full-time grandma/mum for my older grandson...desperately trying to keep things as 'normal' as possible for him...the impact on a family is more far-reaching than the wretched disease itself.
My first thought on realising my plight was 'how on earth am I going to be able to help them now?' On hindsight, worrying about my grandson and worrying about my daughter worrying about her sons and mother...probably stopped me worrying about me and what was going to happen to me.
Ironically, between the two diagnosis', it was my husband who was being 'biopsied'...whilst nursing our old and much loved, dying cat. Seeing the cat struggle with her illness and having the 'kindest' solution available to us while witnessing the awfulness of the treatment my little grandson was being put through...certainly led to strange questions in my mind. Our cat passed, thankfully my husband's test proved negative...but then, and only then, I noticed my right nipple was pointing the wrong way! I actually knew at that time...it couldn't be anything else.
Everything happened quite fast from then on. My breast cancer surgeon was brilliant in every way. She understood my predicament immediately and guided me through the next steps with warmth and sensitivity and without rushing me at all. I had a lumpectomy, her knife skills were perfect. I recovered enough to resume 'helping' before facing my own chemo and radiotherapy. The worst part actually came when my oncologist confronted me with a clinical trial...a test concerning the need for chemo. I just couldn't get my head around the not knowing if you were actually being tested or just part of the control. Once I finally made my decision on this, the sense of relief was so great that I felt I had actually got the better of the cancer itself!!! In my case chemo was no longer an option...it became a necessity.
Nothing can prepare you for first setting foot inside a children's chemo ward...but doing just that certainly helps when you're having to do it for yourself. My beautiful little grandson has been my hero and inspiration through all of this. His treatment was far more gruelling than mine and he couldn't even understand that it was happening to make him feel better! Whenever things get tough, his beaming smile and happy disposition is there to pull me through. We swap stories of scars, bald heads, wigglies, big doughnut machines and even nasty injections! When it came to me losing my hair, my reasoning behind 'going bald' in front of my grandsons was deciding to show strength in numbers...we could be slapheads together.
We've now both finished our treatments...in fact, over a year ago. We WERE both looking forward to starting 2020 and getting out there and trying to get our lives back on track some........ mmmmm............who'd have thought it, huh?
Covid?...That only happens on the other side of the world, right? It's not going to affect us, right?!?!?.......
World Cancer Day
My name is Fiona, Partnerships and Engagement officer at Irish in Britain, and I was diagnosed with Breast Cancer in July 2018.
When I received my cancer diagnosis it was devastating, and my world suddenly changed in an instant. I went from living my “normal” life to “fighting” for my life in a matter of minutes. All of a sudden nothing else mattered apart from cancer, hospital, tests, what treatments I have to have, type of cancer, stage of cancer, how long will I have to undergo treatment for, side effects of treatment – the list goes on. I found myself no longer in control of anything and feeling very lost and alone.
When I told my friends and family – there was shock and disbelief and they all said they would be there with me all the way. I had no idea at the time that what people say and what they actually do when someone they care about has cancer are completely different things, I don’t believe they were avoiding me as such but there was a lack of contact as I don’t think they knew what to say to me anymore. Those that did get in touch or check in every conversation became about my cancer not me, all everyone wanted to know about was my treatment, how long it would be for what type of cancer did I have (all of the things I mentioned earlier) I was no longer Fiona, I was Fiona with Cancer, and yes I had cancer but I was still me, and it was “my” cancer but through a lack of understanding and awareness, people are scared so everything became about cancer not me. People kept telling me stories of family / friends they knew who had cancer, didn’t survive cancer / did survive cancer /the treatments etc that person had, I felt they were talking at me not to me and to be honest I did not want to hear about other people’s cancer stories. I had already experienced family and friends who succumbed to cancer so telling me stories really was not helpful.
However I did have some amazing support – those that checked in on me, made me laugh, would let me talk about how I was feeling, the treatment was brutal and I was very unwell a lot of the time but I got through it with those that cared about me NOT my cancer.
Coming from an Irish family it was extremely hard to talk to them about my cancer especially as it was “breast” cancer and it was advanced enough to need chemo, surgery, radiation and anti-body treatment lasting at least 18 months if not more. Both my parents had their own experiences of cancer and treatment but there was never any discussion about it, there was anxiety which was felt by all the family but no feelings allowed so when it came to my diagnosis I felt I had to protect my parents and family in some way and play down the seriousness of my cancer. I felt I couldn’t express how scared I was not just about the treatment and side effects but whether or not I would make it. I had an aunt who died from Breast Cancer so that made it even harder for me.
There seems to be a perception especially in my parent’s generation that cancer is about dying and not about surviving, they have lost many friends to the disease however they both survived their cancer and so did I through early diagnosis, I can’t express how important it is if you feel something is not right DO NOT ignore it, make an appointment and talk to your GP
Being a 2nd Generation proud Irish woman, I talked a lot about my cancer and treatment as with everything you go through you can’t have any inhibitions or embarrassment, so I was very honest and open about everything. Talking about it really helped me.
The one amazing good thing about having cancer is that you meet so many others just like you who are going through the exact same thing. All cancers and treatments are different, all outcomes are not the same but the people you meet and bond with are the same as you. You can be yourself as they are experiencing the exact same thoughts and feelings as you are. It is through meeting others in the chemo unit that a group called Chatterbox was formed. We are an informal get together group of cancer patients for cancer patients. We talk, we share experiences and information, have a whinge, a moan and a giggle together, make new friends and have a fun in a safe place. Without the support of this group my world would have been so much harder. I have made fantastic friendships and together we want to help others find their place in their new cancer world and to let them know they are not alone.
As a group we decided to design 2 leaflets which we could offer newly diagnosed patients to help them navigate through their new cancer world. These leaflets have been positively received particularly in the NHS Whittington Hospital Cancer Unit and they will now be adding them to the packs that patients get on diagnosis, we are also talking with other NHS Cancer units so they can add them in the packs they give
Please visit our website at Chatterbox (chatterboxcancergroup.co.uk) for more information and stories.
So on this World Cancer Day I wanted to share my story with you, and hope that it will give you the courage to reach out and seek help if you feel something is not ok – The NHS will be there for you.
Chatterbox - a home from home
I was diagnosed with myeloma (bone marrow cancer) in the summer of 2020. A whirl of tests and treatments at the North Middlesex Hospital and University College London Hospital followed at speed, impressive given the ongoing Covid pandemic. Psychological/emotional support was trickier to access - the Helen Rollason Cancer Centre at North Middlesex Hospital had closed due to Covid restrictions. My nurse referred me to a NHS psychologist, who recommended the online support programme offered by the Royal Free branch of the Maggie's charity at the Royal Free Hospital in Hampstead. Cancer patients living or being treated anywhere can self-refer, and I chose their course in Mindfulness. I found it really valuable - it's something I might not normally have made time for, but would now recommend to anyone. Meanwhile I had contacted SGV Cancer Support - since I didn't need practical support such as shopping, they put me in touch with Chatterbox, and here I am! Although I was the first to join online (the others had all been meeting in 'real life' for coffee before the pandemic), I was made to feel very welcome. I liked the balance of sharing and helping with problems, information provision, campaigning zeal and interesting general chat. I'm looking forward to meeting the others in person one day when it's safe.. I'd urge anyone with cancer to join Chatterbox every other Tuesday afternoon for a companionable hour and a half - a problem shared with six other people is a problem seventhed!'
Mary, February 2021