I know that some of you have been reading my website and keeping up to date with my progress via the website, email, facebook, phone and in person. But I wanted to drop you a quick note with some good news! Thank you first for all your support over the past few months.
Since my initial email, I have undergone two surgeries to remove the tumours and surrounding ‘bad’ tissue. I have also had to learn a lot about this rare cancer and search for answers that just simply aren’t available due to the rarity of this type of cancer. For instance in the UK it isn’t even classified in the NHS database (although I’m having that one changed (!), so that we can at least find out how rare this is in the UK). I’ve found and met many wonderful people, medical staff and Phyllodes survivors – in the UK and all around the world. It has been a crazy journey.
I have also been very fortunate with my doctors and medical specialists – they’ve told me how it really is and been honest with me, discussing each step of the way and listening to my concerns and hearing about my discoveries. They have held my hand through the journey and provided me with the tools to make my own decisions (with their advice) and ‘control’ my cancer. This week I had two meetings, one with a senior consultant at Chelsea’s Royal Marsden and the next day with my surgeon. I won’t go into great details (it’s on my website) but the upshot is that I was given time to discuss my findings, get answers to my questions and concerns, weigh up the odds of recurrence -v- reducing the risk of recurrence through further surgery, treatment or drugs and then allowed to make my own informed decision. My decision was that the reduced ‘odds’ of a recurrence that I may have with additional treatment, surgery or drugs remains unproven and are not enough to go through any more. On the condition however that they support me, set up and have regular checkups (every 12 weeks) together with their absolute confirmation that if I have any concerns or wobbles about my decision they will, once again, hold my hand through any new part of this journey.
Sadly I don’t have the luxury of ever getting the ‘all clear’ and will do everything within my power to stop it from recurring (without surgery or drugs). I have met so many ladies who have had one or more recurrence and it is vital in the first few years to be vigilant but I’ve been lucky so far, so loooong may it continue.
I am going to attend the Annual Conference for Young Women affected by Breast Cancer (www.youngsurvivorsconference.org) (and yes I’m apparently still young until I’m 45! Whoohooo). There are lots of reasons why I want/need to attend the Conference, not least is to meet some of the ladies that I’ve met online who are also Phyllodes survivors and who have helped me find information, get involved in clinical trials, listen to my worries and concerns and generally pick me up when it got too much. I hope that I’ve also offered them support on their journey and am so looking forward to meeting them in real life. I’m looking forward to attending the workshops and seminars to learn more about living with breast cancer, coming to terms with the physical and mental changes to my body and my future and outlook. What’s also wonderful is that the medical teams I met with this week are also excited that I’m attending and have asked me to feed back anything that I find that may be useful for them about Phyllodes or managing breast cancer as a survivor. I suspect that we may also raise some awareness at the Conference about Cystosarcoma Phyllodes – I don’t think any of our band of ladies are known as quiet wallflowers! I, of course, will also post information I find out or links to more resources on my website so that others diagnosed with Phyllodes may find answers quicker than I did.
I know from the website reporting that my site has been returned in Google searches from newly diagnosed people and I have received emails thanking me for my site, story and research links. If I can help just one other person, then I’ve put to good use my experiences and something good will have come from my ‘not so good’ foray into life with cancer.
The Conference is a lifeline for many and provides information and support touching subjects that are hard to deal with or face as a young survivor of breast cancer. You will know from my website that I often had concerns about how I would perceive how I look after surgery and indeed any future partners/relationships. In order to afford to attend the Conference I applied for and received a grant and know that I was lucky to receive this funding. Sadly the funding has run out and some of my Phyllodes sisters are not able to attend as they don’t have a grant. This funding is critical for many in the US as they don’t have the wonderful NHS and free medical care that we have in the UK so simply can’t attend over affording to be pay for surgery/treatment. I can’t imagine making a decision about what I’m going to go without, in order to pay for a surgery or delaying a surgery or treatment whilst I worked extra jobs to save up for it! I have set up a donation page for this fund so that this may enable others to attend too and would ask, if you’re able to, please
For now though, I’m thrilled to be getting on with my life and looking forward to a future. Slowly I’m recovering my energy levels and am now back at work. It’s sort of nice to be ordinary again… as if I ever was!
Watch out World, she’s back and got a whole lot of life to live!
Finally, again I thank you for your support which has been amazing and just when I needed it there was always an email, card, call, text message or knock on the door.
Lots of love and I hope to catch up with you very soon.
PS I was trying to complete this email and going to send it over the weekend… but hahaha the pesky blighters are trying to stop me and my get up and go… my car broke down and I spent Sunday evening/night being driven home in a breakdown truck with my car hanging off the back!!! Humph, it’s merely a blip!”