Singing through the pain

Jan 23, 2016

The phone has been ringing a lot at our house recently.

It’ll be the doctor, the chemo ward, the insurance company. All giving me information, updates and appointments.

To distract myself, on Wednesday, Tash drove me to choir so I could sing. I’m so glad she did. When I got my primary diagnosis I promised myself I’d start to do things I had been putting off. The first one of those things was to join a choir. Luckily, one had started up a month or so before locally in Baldock, so I put my big girl pants on, and went along. I’ve loved it all. I’ve met some truly lovely people and learned to have confidence in my singing again. (I lost all confidence in my ability in my late teens and it was just something I would do in the shower. ) I’ve since sung at Christmas concerts, collaborative concerts, an open mike session and even in a group at someone’s wedding. A few people at choir already knew what was occuring thanks to the power of social media, so I got some lovely hugs and much appreciated words of encouragement. As long as I can sing, I’ll be there, with the Naughty Alto’s, having fun.

Getting Organised

I’ve started to gather together paperwork so that all my financial stuff is in one place. Pensions, bank accounts, and I also set up a funeral insurance plan. Not the happiest of jobs, but I don’t want Ross to have to worry about how he’ll cope with it all. One phone call, one direct debit set up, and it was all done. We must get round to sorting our Will out too. It won’t be complicated, Ross get’s everything, and there’s not even that much of that!

Best Looking Cancer Patient in Hertfordshire

In order to not allow standards to slip, I went to see my lovely hairdresser Isabel yesterday to get my hair cut and coloured. As it’s not been decided if I’ll be having a chemo treatment which will cause my hair to fall out or not yet, I thought I might as well start the process off looking a million dollars. If it falls out later, so be it, but for now, I’m delighted. It’s great to be able to have such trust in a hairdresser to be able to say, I want it cut and coloured - you decide what to do.

Another Scan

Before I can start treatment, I had to get a last minute appointment see a cardiologist to check my heart was well enough to withstand it. Herceptin has been shown to damage some people’s hearts to the extent where treatment has to be stopped. Luckily, my heart is in tip top condition so there’s no issue with moving onwards.

Treatment Begins

Next week the fun really begins. I’m having a port reinserted on Tuesday to allow for easy administration of infusions. Herceptin, the targeted treatment will start on Wednesday and I’ll also get an infusion of Zometa which will help plug the holes in my damaged vertebrae. These treatments will be every 3 weeks for as long as they continue to work.

My Dad will be coming down to look after the kids for a bit whilst this is happening.

I’m the meantime, the flowers, gifts, chocolates and messages of support continue to come in and lift our spirits. We’re in a really tough place, but knowing we have a legion behind us, is keeping us going. Ross had to take Felix to his swimming lesson this morning, but my pain has gone up a notch, and I’m finding it hard to get comfortable. Ross wasn’t going to take Felix, but rather stay with me. He changed his mind when I told him that if anything changed, I would put a shout out and that I was confident someone would be able to come round and keep me company.

All cancers are different

The word Cancer is an umbrella term for a wide range of diseases. For every cell in the human body, their can be one or more associated, renegade cancer cells. There is not a “One Size Fits All” cancer diagnosis. There are also different stages and grades. Grade 1 is slow growing, Grade 3 is fast growing. Stage 1 is contained in a small place, Stage 4 for travelled. You can’t compare different cancers, it’s like comparing apples to pears. Both fruit, both different. You can’t compare Stage 4, Grade 3 Invasive Ductal Carcinoma with Stage 3 Liver cancer. They all have different treatments, and prognosis. Everyone will also have different treatment plans too, even if they do happen to have the same diagnosis.

No Cure

One of the tough things to try and explain is that now that the cancer has come back, there is no cure. Yes, we got on top of it once, and I “beat it”, but that can’t be done this time. No amount of positive thinking, tumeric, cannabis oil or fairy dust is going to get rid of this blasted disease. It’s decided I’m a nice place to stay. (I’m not flattered about this.) The best we can hope for is that the treatment keeps it under control for a long time to come.

I’m still not a fan of the battle/warrior/fighter/brave analogies. This isn’t a fight that I’ll win. It doesn’t mean I didn’t try hard enough, it means that Cancer is a horrific, destructive and merciless disease that takes no prisoners. I hate it, because it’s robbing my family of our future together. My babies deserve so much better. My husband had hoped to be married to me for a long time yet. My parents shouldn’t have to be having the conversations they are having. My brother’s shouldn’t have to face up to the loss of a sibling (even if I am the annoying, shouty, loud one). My friends may have to have some very scary conversations with their children that sometimes there is nothing you can do about an altogether horrible situation, and all you can do is offer a friendly ear, hug or word of compassion.

My Babies

As a side point, can I ask that my friends who know Imogen and Felix and want their children to be there for them, that they allow Imy and Felix to talk abut things on their own terms? They don’t need to be bombarded with questions or statistics or be told how long I’m going to live for. Can I ask that you talk to them and ask them to be compassionate and kind. The future is very uncertain for Imy and Felix and they don’t need to have any extra or unnecessary hurt caused by someone’s lack of empathy or thinking. When I was their age it wouldn’t even been on my radar that I could lose a parent, and it breaks my heart for them, to think that this is in their future.

Enough!

But enough wallowing! Because at this very moment we’ve got time. For now I’ll take the hugs, and the love and support. I’ll keep on smiling, I’ll probably keep on swearing and making very inappropriate jokes. I’ll be offering hugs to people who find it frightening and scary. I’ll be the one saying “ Everything will be OK”. Because that’s me. That’s who I am. And that’s not going to change just yet.

Keep on, keeping on.

Jx