Hello my old womb mates!
I am a former member of the womb cancer group, joining in 2014 when I was recently diagnosed with high grade, high stage womb cancer and reeling. I wanted to know what to expect from chemotherapy and found this wonderful community in my hunt. For two years the group was my lifeline but after recurrence and being told I was incurable I moved over to the group living with incurable cancer. I felt my experience of early womb cancer treatment was becoming out of date and to be truthful I was struggling with my new reality too much to be of help to those coming online with new diagnoses. This is a place of hope and I had little of that to offer.
So why am I back now? It’s thanks to This might take a moment to explain.
Since my first recurrence back in October 2015 I’ve had treatment to keep the cancer under control while I got on with living. There’s been radiotherapy (SABR) to treat a rogue lymph node; a biological therapy (Rucaparib) that kept a lid on growth for 15 months; more chemo; and finally three clinical trials (a biological agent plus chemo, immunotherapy, and most recently a third biological therapy). Each of these worked to a degree. Each took its toll on my body but I learned to adapt and live within new limits, swapping my push bike for an electric bike, for example, and then giving in to the need for a walking stick to stay mobile. I lost my hair, regrew it, watched it go from curly to straight. I learned how to live with cancer and not die from it and to focus on finding the joy in each and every day.
This month I had the difficult news that the cancer had progressed again and I was off the third clinical trial. It was a blow as the early blood work was so hopeful. My CA125 fell from 14,000 to just 1,600 after three months. But increasing pain in my pelvis told me something was up and news that the tumours in my lungs and on my spine had grown, a new tumour in my liver had appeared to join the cluster there and the growth around the kidney had advanced was unwelcome but not a surprise. My oncologist had no more trials to offer. The last remaining option was to rechallenge with platinum based chemo to which I am already resistant. This would be for symptom control.
It was pretty bleak, to be honest, and was the icing on the cake of months of milestones including the “time to put your affairs in order” conversation.
Then things really kicked off. To cut a long story short, the tumour on my spine grew slowly and started compressing nerves coming out of the spine causing a lot of pain. Over a period of 2-3 weeks this escalated to the point at which you find me now. In hospital after a radiotherapy flare up. Last Thursday I had radiotherapy to the tumour to reduce it and relieve the pressure and pain. The radiotherapy missed the memo about reducing pain and triggered a reaction that was like a flare going off in my spine. We are now on top of the pain, thank the Lord, the NHS and modern synthetic opiates.
I was chronicling the ups and downs of this in the incurables group and up popped with a lovely message. My old friends in the womb group were rooting for me and despite the rules saying the group is only fit those living with incurable cancer, she felt she just had to let me know.
You have no idea how much this cheered me up. I had no idea anyone here would remember me. I do remember so many of you so fondly. People like nanny anny, old lady with the typo in her user name, Lesley2012, little lamb and arla and so many more whose names slip away.
Thank you for caring.
I do hope I haven’t bored you. I’m taking steroids so sleep is elusive. I don’t want to scare anyone who’s early on in this disease. What’s happened to me is unusual. Most womb cancers are detected early and cured. Hold on to that. But around one in ten of us aren’t so lucky. To those going through recurrence or facing the devastating news that they are treatable but can’t be cured, I’m here to tell you there is life with cancer. It’s possible to be happy and live well with cancer. I do. Every day I wake up and find something that makes me happy. Right now it’s the lovely night nurse who’s brought me a cup of milky tea. Mmmm delicious. Did someone say angel?
Lots of love to you, my dear friends.
xx
Oh how lovely to hear from you! And thank you for your kind words. I can’t pretend life is anything other than very trying right now but that’s all the more reason to search for the joy in the day. Once you start looking...
It is great to hear you both (I think, I might have misunderstood) have gone to longer check up times and watched the chances of recurrence slowly fall. Onwards and upwards!
I have just finished a blanket for a friend’s first grandchild. Crochet helps pass the time. I’ll try to post a pic
xx
No one forgets you , I am sure everyone of us have been reading your posts in incurable only group. You are much loved and supported here as well. We have all benefited from your words of wisdom and support and advice. I will never forget that help when I first started it was you that gave me the confidence to first post, it was you that helped me through another very difficult time I will never forget that. I am frustrated like I am sure others when at times words are not enough to express how we feel.
I love the blanket beautiful colours. Sending love to you and the girls.
_GBear Xxxx
What is a Community Champion? Womb cancer forum
Call the helpline for free on 08088080000, 8am to 8pm everyday.
“let hope be your lighthouse beckoning you though stormy seas" - Jessica de la Davies
Well , you can always just be lifted on cloud nine from all the compliments your getting and well deserved I may add too. I know life is very hard for you now but you know where we all are, here for you just as much as you for us. You can always get a bigger door!
Well I am just proud and humbled to meet such wonderful people here. Your all a credit to each other.
_GBear Xxxx
What is a Community Champion? Womb cancer forum
Call the helpline for free on 08088080000, 8am to 8pm everyday.
“let hope be your lighthouse beckoning you though stormy seas" - Jessica de la Davies
