Time flies! Not only has it been one year since starting on cediranib, my lovely oral chemotherapy drug, but it has been a whole year since I started volunteering with the wonderful charity, Wigs for Heroes.
Hi guys, it has been a while since I last blogged. Not for lack of ideas, I've just been living life, and now that I work more or less in front of a screen full-time, I don't like spending too much of my free time at my computer. I am still keeping this blog going though, as it is my baby! It helped me process a lot of what I've gone through and it continues to help me connect with others around the world going through similar experiences to me. If for whatever reason you have been missing my blogs, you can catch me on Instagram (@MadeleineCowey) where I post far more frequently.
It was a year ago that I started on my current line of treatment. Having just waited 4 weeks to hear the results of my most recent scan, I can announce that everything is still stable! Hooray! Since starting cediranib, the 'innumerable' nodules in my lungs have shrunk and remained stable, which for an incurable cancer patient is the best possible news. As much as I'd love to be told 'everything has disappeared, now you're cured!', I will settle for stable.
I frequently get asked how long I'll be on cediranib. The answer is essentially 'as long as possible'. When you have metastatic sarcoma (sarcoma/cancer that has spread to other parts of the body), you will likely be on treatment for life. That is, until the treatment stops working or becomes too toxic for you to tolerate. For me, there is hope that other options will be available if cediranib stops working, but that all depends on where/how the sarcoma has spread. For now, there is no Plan B - it all depends. It is a scary position to be in, but for now I am
very grateful to have a treatment that is working very well for me and is very manageable. I know a few people who have Alveolar Soft Part Sarcoma who have been on cediranib for a number of years with no progression, which is a very positive sign. Unless something miraculous happens or we can be sure my sarcoma won't progress, it wouldn't be wise to stop cediranib any time soon. That's not to rule out treatments such as surgery or ablation in the future, though. Thing with rare cancers (actually, all cancers) is every case is unique and every patient has to be given personalised treatment, so I can't be told for sure, or predict, what the next few years look like for me.
Now, onto more positive anniversary-related news: it has been one year since I started volunteering for Wigs for Heroes.
Volunteering for Wigs for Heroes was one of the best decisions I've made. If you haven't heard of it, they are a UK-based charity dedicated to cancer and hair loss, founded by Kaz Foncette, a wonderful woman who has had breast cancer twice. Kaz started the charity as a response to her own experience of hair loss and the shocking selection of NHS wigs available to people going through chemotherapy. Some studies have shown that around 8% of women reject chemotherapy due to fear of hair loss. Wigs for Heroes raise awareness of cancer-related alopecia, they instill confidence in people going through cancer treatment, share advice and tips, and so much more. One of Wigs for Heroes' major goals is to gift wig grants to cancer patients, helping those most in need to fund their own wig to give them a little bit of confidence going through treatment.
Cancer is enough to handle as it is, you feel like part of yourself disappears, you feel like life will never be the same. To lose your hair on top of that feels like totally losing your identity. Although I have never lost my hair due to my treatment, it was something I worried about when I was first diagnosed. I was pleased that chemotherapy wasn't an option for me - celebrated the fact I wouldn't have to lose my hair. How mad is that, at that moment it was more important that I didn't lose my hair than the fact that it meant there were fewer treatment options for me... I jumped at the opportunity to volunteer with Wigs for Heroes, and I've made some extremely strong bonds as a result with the team. Getting to speak to a wide range of people who have experienced cancer and hair loss has broadened my understanding and has opened my eyes to what so many people have to endure.
One of the great projects that begun around a year ago is the Heroes Coffee Club. Initially started as a way of allowing cancer patients to connect with others during the pandemic, the coffee clubs have become an amazing, wholesome, friendly space open to everyone and anyone with a connection to cancer. I have attended a few of the meetings myself, and I can't tell you how good it felt to finally feel welcome in a 'cancer' group - I've previously not felt comfortable attending any kind of support groups. The meetings are free to attend, held virtually over Microsoft Teams, and everybody who books a space receives a box of goodies in the post to enjoy during the meeting. Every month there is a new theme, sometimes guests are invited on to answer questions, and the four facilitators are amazing women who all have experience of cancer. This month, the theme is dealing with anniversaries and the thoughts and feelings associated with cancerversaries. I may write a blog on the topic as it is a little spoken about subject that everyone with cancer can relate to!
In November, Wigs for Heroes are hosting the UK's very first and only Festival dedicated to cancer and hair loss: The Hair Loss and Hope Fest. Held in North London, the event is going to be full of useful advice stalls, independent businesses (such as Eadie Chops, Grab Life by the PomPoms), there will be makeup artists, food, hair and wig experts, a swap shop, and so much more. The event is open to anyone and everyone. Anyone with an experience of cancer, alopecia, or simply an interest in hair/beauty/fashion. Tickets are £5 per person, or £10 for a family. I will be going, so if any of you are able to attend I would love to meet you there. Do check out the Wigs for Heroes Instagram page to get updates on the event, as we announce more of what the festival will entail. We are very excited! I will leave a link to purchase tickets at the end of this blog.
In July, I was lucky enough to be a part of the Wigs for Heroes 'Hair loss and Hope' photoshoot. It was an amazing day where we were all pampered with free professional hair and makeup, and got to meet each other for the first time in person. It is great to feel a part of a cancer 'group', after feeling for so long that I didn't really fit into any group. Wigs for Heroes is so welcoming and open to all, constantly striving to be even more inclusive, and even though all of our 'stories' are different - cancer is a weird inextricable bond. The photoshoot was great, and everybody also filmed an interview sharing their story, so keep an eye out for those videos to be released on the website! Kaz even put together a personalised box of gifts for everyone who attended, which is a classic example of Kaz going above and beyond to put smiles on faces and make people feel pampered (see my box below!)
It's not been the easiest year, quite gloomy and lonely at times, but I am just very glad that I'm here and have got so many things in my life that make me happy.
Okay, soppiness over.
Do you guys have any anniversaries in September? I'd love to hear them - put a comment below, whether it's a good or bad anniversary!
Until next time,
M x
Click below for all Wigs for Heroes links:
Please donate to Wigs for Heroes, fundraising for a Scalp Cooling machine for chemotherapy patients at North Middelesex University Hospital: