During her first routine mammogram in July 2019, Karin, aged 51, received the shocking news that she had stage 4 metastatic breast cancer to the bones. She lives happily in Stroud with her partner, 2 rescue dogs and foster pups. In this blog, she shares her story with us, giving us a window into her life, over 4 years after receiving the shocking news.
That was the biggest shock of my life, being diagnosed with stage 4 breast cancer with mets to my bones from my first routine mammogram. “Treatable, not curable”, they said. Me, terminal cancer! Under Palliative Care. What!? Once I’d picked myself up from that one and started treatment, I’ve luckily had no avid disease (NAD) for 4 years. The COVID pandemic added to the cancer bubble mayhem, but I somehow navigated my way through that too. Lots of dog walks in quiet, open spaces and online exercise classes helped to keep me sane and fit.
My friend and I set up The Five Valleys Wombles litter-picking group during this time, which is now over 550 members strong. I joined my local Wigwam cancer group through Yes to Life. We have become good friends and they are an invaluable help and support in my life story, from giving healthy dietary guidance, supplements, and top treatment tips to magic sleeping potions and integrative therapies.
I’m a member of an all-ladies fitness group, so did 4/5 classes a week including boxing, circuits, kettlebells, total toning (weights, bands, hoops, Pilates) regular runs with my friend and our dogs, plus daily dog walks and dog agility. I really value the importance of strength training over cardio, as I get older. I’ve also joined my friend at the gym to improve our weight and strength work. This is all alongside working PT at my local University as a Disability Support Officer. The perfect balance for me. No side effects from treatment (apart from occasional gastritis flare-ups which I’ve successfully managed, although this turns out to be my next hiccup) meant that my very active and full, lovely life has continued throughout.
I’ve recently been diagnosed with ADHD, which does explain why my brain is so wired and I’m a busy bee. Being active and positive (I naturally am) has certainly helped and given me focus, when you get dark days or thoughts.
As with everyone who has cancer, especially when it’s classed as terminal, I’ve had to learn that this can mean 20 years from now. New treatments being made available and advancements in science and research keep me on track.
My February PET scan results, however, knocked me sideways. After 4 years of NAD, it showed some activity in many areas within my chest, clavicle, stomach, and bowel. It’s the nature of cancer my Oncologist said. It finds a way. It was low-level activity initially, so my Oncologist wanted to monitor me but wasn’t overly concerned. I was! I reeled up and down for days, and weeks, calling to speak to the Oncology Team with lists of questions that I needed answering. I then realised nothing would or could be as terrible as my initial diagnosis. And so, you somehow carry on and I did and continue to do so. I requested another PET scan within the usual 6-month period, and they agreed to June. This one showed increased activity and it was decided that my original oral chemo meds weren’t working anymore, so I was advised to stop taking them and a new plan was decided that I’d either start different oral chemo or my worst fear, IV chemo.
My partner and I had a lovely holiday in Zante in the meantime and on our return I had a very serious gastritis flare-up that landed me in hospital (2 in fact) for a week. I can categorically say this was the most traumatic experience of my life. I have never had such high highs or low lows. I cried canals and laughed louder than ever before. The people I met were extraordinary. I had to document my time inside, as a way to recuperate and recover. My sleep still hasn’t.
I was given high doses of morphine for the pain initially and was told I might become constipated. No sh*t Sherlock! I didn’t poo for 8 days, which meant the doctors and surgeons said I needed emergency bowel surgery to clear the obstruction/constriction. I was terrified. I can’t be in ICU/HD for 4-6 weeks with 1:1 nursing care and unable to move. Thankfully I went to the loo naturally and saved the day. Who knew the power of a poo! The surgeon’s jaw dropped to the floor when I informed him during my pre-op assessment. ‘You are remarkable’ he said. I was kept in over the weekend to ensure that I had recovered and to ween me off the morphine. Low fibre diet! That’s another blog.
Being in hospital for a week was a real eye-opener in so many ways. One of my main concerns was the apparent lack of patient advocacy. So many ill patients without a voice. The pluses from my stay, are that I’m now a Facilitator for my Wigwam cancer group, a Patient Advocate for the NHS (PCR), a member of Bowel Cancer Support Group UK, contribute to MacMillan forums and blogs, write for Flourish Magazine (Yes to Life), am helping set up a new WI, will be a Parish Counsellor in the Autumn and have applied to be a Patient Advisory Group Member for Cancer Research UK. We also continue to foster dogs.
My Oncologist decided with all the problems I’d been having and the fact that my gastritis flare-up from May 18th was not going away, that the best course of action was IV chemo for 12 weeks. 1 hour a week with the option of wearing a cold cap to try and mitigate hair loss or help it grow back quicker. My heart sank hearing his words. My first thought was I’m going to lose my hair. Then I thought it better alive and bald than dead and hairy.
My first treatment day was booked but my body was not playing ball. I’d had a bad stomach week, had been severely sick and had to resort to taking morphine several times to control the pain. When I turned up, instead of starting 1/12 chemo treatments, I was admitted to the hospital (again) for 3 days! More shock and horror. I thankfully started the following week (July 28th) as my Oncologist said we need to crack on now! You can watch the video diary of my 4th session of chemo by clicking here.
So I’m halfway through my 12 sessions and thankfully have had no side effects to talk about. My stomach has been up and down, but I still have all my hair and apart from the first 15 minutes in Week 1, have had no pain from the cold cap. In fact, once they’ve given me my IV meds, I fall asleep for most of the time I’m there! The nurses think it’s hilarious! I found some lumps in my neck in May and they feel like they’re already shrinking. Yay! I feel so much better in myself generally. I am building my strength back up with a daily dog plod and started Joe Wicks beginners workouts this week with my yoga stretches and get-ups. I also have regular reflexology, massages, reiki and acupuncture, to complement the conventional medicines I take. A good holistic approach that works for me.
The hardest part in all of this was reading my Oncologist letter to my pension provider, as I want to close two old pensions on serious/critical health grounds and set up a new one. No one prepared me to read that due to my impending bowel obstruction, I have a significant chance of a poor or no response to treatment and therefore a prognosis of slightly less than 6 months to live. I’ve always had a worst-case scenario of 12 months, being classed as terminal. Now it had been more than halved. I could be dead before my 56th Birthday in January. I bawled my eyes out. I had to rationalise with myself very quickly, with my partner's unfaltering stoicism, that the NHS aren’t going to spend 1,000s on treatment for 3 months for me to then die 3 months later. Talk about a game-changer.
Here’s to the next 6 weeks. Now I know what to expect, each week gets easier and seems to go quicker. I’m looking forward to returning to work, once my treatment has finished. I will have another PET scan in October, to see how well the chemo has worked. Hopefully, I’ll have new oral chemo tablets and get on with building back my lovely life to the full.
Onwards and upwards.
We’d like to thank Karin for sharing her story with us.
Sharing a cancer experience through storytelling is a powerful process that can deeply impact both the author and the reader. Everyone has a unique story, and we'd love to hear yours. Why don’t you take some time soon and share some of your story with the Online Community? You can do so by posting a blog here or finding a forum to post in that is most relevant to your experience or diagnosis.
