Terminal – Just another blog

It’s my 9th cancerversary today, 15 April. But I should really call it my 9th primary cancerversary, since I was diagnosed with secondary (terminal) breast cancer last July.

Not a happy event for sure, but I see it as a good milestone. I am still here, so I celebrate that.

I have a cake every year, because cake is good. And I am glad to be alive, especially since my latest diagnosis.

Hopefully, I will get to celebrate my 9th secondary cancerversary one day too, in July 2032.

I am grateful to be alive, and that my children and husband haven’t had to deal with another early death in our family and the never-ending grief from that.

So, am I full of joy and thankfulness, skipping along and singing to the birds? No, not usually. I know that a (hopefully slow) decline awaits me, before a painful death. Although, the thought of being full of morphine and blissfully unaware does help.

What makes it harder is that my local hospice, Prospect Hospice, are really struggling with a lack of funding and donations. Like many hospices, they are fighting to keep going. When the time comes, I don’t want to die in a grim hospital room or at home (my poor family, having to deal with that!) So, I am extremely invested in Prospect Hospice thriving for many more years.

If you have the luxury of a few spare pounds, please do consider donating to them? It can be a one-off or regular donation, or you could enter their monthly lottery.

Donate

Many local people already know what a wonderful place it is.

Even though I am fairly well and able now, I have already benefited from their free massages and visits from their social worker. If I needed a spinal operation, even last minute, then they have promised to make a hospital-style bed available for me at home, or I could stay at their beautiful location in Wroughton while I recover.

Palliative care is so important, and means a lot more than dying with dignity and not in pain, although that is obviously vital.

https://www.facebook.com/profile.php?id=100064857995618

So, it’s my first WCD as a lifer: someone who has stage 4/ metastatic/ secondary cancer. It is terminal, but hopefully the chemo and other treatments that I am on will keep me in fairly good health for a while yet.

Knowing that barring a miracle, I will die of cancer is… interesting. In some ways, it feels very far away and almost unreal. In others, like it’s all too real; overwhelming and at times, all-consuming.

I have met a couple of people from the hospice team that are ready to look after me for any respite, post-surgery recovery and finally, my death. It is reassuring to know that I have their support, but a little worrying how quickly they got that support in place for me and arranged home visits!

To me, world cancer day highlights how important it is to get cancer care and treatment to all communities and countries, no matter how poor. Education can save lives through early diagnosis and treatments. It’s vital that we keep talking about symptoms and encourage people to get medical advice if they notice any changes in their bodies.

I am so glad that I went to my doctor soon after finding a breast lump, in 2015. Even though I had no family history, was a young non-smoker and breastfeeding, I didn’t stop that or being busy from putting me off. It meant that I got treatments quickly, and for 8 years or so they gave me a pretty good quality of life. In fact, I believe that my awareness of camcer symptoms and early diagnosis and treatment saved my life.

Sometimes the grim reality of metastatic cancer hits hard. I recently saw some photos of someone with a similar diagnosis to me: stage 4 breast cancer with spinal mets. The photos of her post-surgery back were scary. The thought that I might have to go through something like that one day is terrifying. And the fact that it would probably be done as an emergency operation, makes it even worse. At the moment, my oncologist says that any surgery on my spine is too high risk (for permanent paralysis); but I am at a risk of metastatic spinal cord compression, the treatment for which may be spinal surgery. Feel free to look that up: it’s not pleasant.

I still hope for a miraculous healing for myself, but need to be prepared that it might not happen.

At the moment, I don’t look sick, I can work part-time and care for my (disabled) husband and look after our children as well as myself. I can walk the dog and sometimes the cancer feels distant, despite the many hospital appointments.

But, I am so fatigued and get bad back and neck pain almost every day. Recently, I have had aches in my arms and legs, which feel right in the bones. I have started having bad dreams when in pain at night: it’s often not bad enough to wake me up, but still manages to sneak into my subconscious in what feels like a malicious way.

I am worried about the future. It’s hard.

The chemo is keeping me alive, but causes fatigue, mouth problems and makes me incredibly susceptible to infections. Over the Christmas holidays, I had first flu then a chest infection. My neutrophils (white blood cells) were dangerously low.

My sister in law, Mary, recently set up a page to raise some money to spend on making happy memories for my kids, Connor and Bethany. Thank you so much if you have donated; we really appreciate it. People are surprisingly generous, and we are grateful for you all. And if you can’t afford to donate, please don’t worry. I know how tough life is for many.

https://www.gofundme.com/f/help-create-holiday-memories-for-alex-family

Thanks for reading. X