The name of the blog came from the attitude of my Mum, and something from a long while back. When I was 18 or so, I started a website for Breast Cancer sufferers, called CHF - Cup Half Full. The name came from hours of brainstorming, but was right there under our noses the whole time...it's the way my Mum lives her life while facing her illness, but also a play on words (breast cancer...cup...cup being half full, you get it - right?).
Having always fought her cancer with a cup half full attitude, it was perfect...and so we've resurrected it again.
I don't know if all my family and friends know the full extent of everything from day one...so here's an explanation... (I put this is one of the posts on my blog a few days ago...copying and pasting is SO much easier that writing it all out!)...
Back in 2003, she was diagnosed with Invasive Ductal Carcinoma (breast cancer). Now at that time, at the age of 16, I tried to understand it as best I could, but she never really got "ill". She had a lumpectomy, followed by a mastectomy, and radiotherapy & chemotherapy. The only side affect she really had from the chemo, which was expected to make her really poorly, was a metallic taste in her mouth and her hair loss. To say she breezed through it would be an understatement. She would go to work in the morning, leave work early to go to Chemo, then either go back to work afterwards, or come home. Amazing.
Before we knew it, she went from monthly oncology appointments, to 3-monthly appointments, to 6-monthly appointments, to only being seen yearly. September 18th 2008 she officially went into REMISSION. I'll remember that date for the rest of my life - I was going to have it tattooed on me to mark how far she'd come.
Now in May 2010, with the force of being hit by a train, she informed me that her cancer was back. At the time, I wasn't sure how she knew as she'd said she'd not been to a doctor, but she showed me that she had tumours growing through her skin, on the site of where she'd had her mastectomy - but we stayed optimistic...it really could have been anything. August 2010 it was confirmed that it had returned, in her chest wall, breast and skin. Over the oncoming months, a CT scan was performed which also confirmed that she had masses in her bones, mainly in her spine. One or two of her vertibrae had been completely overcome by the tumours, but upon being referred to a bone specialist, Dr Wilson @ The Nuffield Hospital, he said that her bones were strong and that the expected fractures, were just not there. It was then that we discovered that her back pain was not caused by the cancer, but it was actually caused by scoliosis, something that had happened as a result of her LD Flap reconstruction. You'll have to bear with me - I'm actually surprised at how much of this I am remembering without having to look it up.. Wow.
So the diagnoses so far:
- Breast
- Chest wall
- Skin
- Bones
She was put forward to receive Facet Joint injections, which would be an anaesthetic and steroid injected into the nerve endings between her vertibrae = immediate pain relief. She's had these done twice now and one of the sets of injections left her pain free for just over a year.
In July 2011, we found out that her breast cancer had spread, yet again, but this time to her liver. I remember being sat at home waiting for her to phone me, she sounded so chipper when I answered."It's back, but then we knew that. She also says its in my liver, but I'll have to explain that to you when I get home...but don't worry, it's going to be okay. Do you need anything from Tescos?"Oh yes Mum, I'll have a big old bag of sweets and some chews for the dog...HANG ON...LIVER? Where the hell does that come into the equation?! I was flabbergasted. I hung up and immediately burst into the tears, which was quite alarming for our new puppy, who also started to cry. When she got home she explained that it wasn't liver cancer, it was breast cancer, in her liver. Confusing, yes.
She was given a few types of hormone drugs, I can't remember the names. But they worked for the short term, and then stopped working after a while. See, the thing about cancer is that if it's strong enough, even if you're given drugs to fight it - eventually the cancer works out a way of bypassing the drugs, and spreading anyway. Especially when it's as aggressive as hers.One of the drugs they wanted to start her on was Exemestane which is a hormone, but due to her tumours disappearing at a much slower rate, it was obvious that it wasn't working quick enough.
So then they decided to bring back the C word.... Chemotherapy.
Now for anyone, that word is daunting. Before Mum was diagnosed, chemotherapy was a word that would bring up images of people wearing bandanas because they had no hair, having sunken eyes, looking almost yellow, and skinny and frail. For those of you reading this who are in a similar situation, or have a family member due to start a course of chemotherapy soon, most cases really aren't like that.
The chemotherapy that she was put on, was called Capecitabine. Initially she was due 4-6 cycles. It was oral chemotherapy so she didn't have to go into hospital to have it infused, she could take the tablets at home... 1800mg (3 big tablets of 500mg and 2 little ones at 150mg each). The capecitabine showed almost IMMEDIATE results, within a week her tumours had scabbed over and were literally falling off, like a spot would when it dries up. We were gobsmacked. So was her oncologist, Dr Kinnari Patel @ Churchill Hospital (she's fabulous by the way). She then referred to Mum as a "miracle".The capecitabine worked so well, that Mum was dreading the course ending - thinking that 4-6 "rounds" of it was good - but worried that the minute she stopped taking it, the cancer would be back in full force. So upon some consultation with her oncologist, they decided to let her carry on taking it - something that had NEVER even been THOUGHT about before. Permanent chemotherapy? You've got to be kidding me? It was working for her - so she had no reason to stop. She had very little side affects, she hadn't lost her hair (although it had thinned a bit but not noticeably) she wasn't sick, didn't have constipation or diarrhoea, she was just Mum - smiling, laughing and it had temporarily given her a new lease of life and confidence in yet again being able to beat this disease. Not only that, but because of her willingness to do this, and the way her body works, it meant that they also pulled the files of women/men in similar positions, and were going to trial them on permanent Capecitabine too. If Mum had never mentioned it, they'd never even have thought of it, and hopefully, it's made a big difference to at least one person's life, like it did ours.
Needless to say, in May this year, the Capecitabine stopped working after 13x3week cycles - now for someone terminally ill, 39 weeks of extra life is a LONG time. Her cancer was back, and more tests and scans revealed that not only was it back in her breast, chest wall, skin, bones and liver, but it's now in her lungs too.
Thinking about it, she recently had been struggling with breathing, getting out of breath on even the shortest of walks, just a few steps would have her panting.
This recent diagnosis, was on the 28th May this year. Exactly 2 years to the day since we sold the house because her cancer was back.
Mum has made the decision that instead of trying exemestane again, that she will be starting Chemotherapy for the 3rd time, this time intravenously. I don't quite know what was said in the meeting with the oncologist, as Mum doesn't like Dan or I to go incase it's bad news...and we've had alot of that over the last 2 years, but it was completely Mum's decision. Dr Patel wanted to hold it back, but Mum's worry, and mine, is that if the exemestane stops working, her cancer is spreading so quick that she may not be able to be in a position to have it. She could be too ill, or the cancer could just be too advanced. Hence her decision to start it.
Her chemotherapy start date is the 4th July. Between 28th May and the 4th of July is 5 weeks...now that's a pretty long time to get used to the idea but to be perfectly honest, it scares the shit out of me. I made the mistake of looking up the chemotherapy she's going to be having (taxotere aka docetaxel) and read some horror stories. What an idiot.
Her veins have suffered terribly from the first bout of IV chemo, so they're going to be installing a PICC Line in her upper left arm, so she doesn't have to keep having needles in and out of her arms, as it usually leaves her with severe bruising and discomfort for ages afterwards. Fingers crossed it'll all be okay!!
~~~
This blog has been set up so that myself, Mum and hopefully my brother can keep everyone updated on Mum's progress, while she goes through her treatment...I know what it's like to worry, and sometimes you just don't want to phone or text incase you disturb someone...so it'll all be out in the open on here for everyone to read.
There will also be pictures of Mum along the way (even when she's bald!) to make people laugh, smile, probably cry but to give everyone a better picture of how she's coping - especially for family and friends who don't live close enough to just "pop over".
Dan and I will probably be updating about ourselves and how we're coping as a family too...although that's not definite...
Next time I update will probably be about her day at the hospital on the 4th (tomorrow)..
Hanna xxx
Hi Hannah, I only know you through your Mum and she is always extremely proud of you and Dan. I can understand just why she is :)
ReplyDeleteI think you are an incredibly strong unit and thank you for thinking of others, in setting up this blog :)