Wow...so that was a good start to my blog. Only been blogging 5 minutes and then disappear off the face of the earth!
I suppose I'd better give an explanation, as if you do decide to start following my blog...then at least you'll have a clue what I'm talking about.
My Mum is ill. Not cold/flu type of ill, but she has Cancer. 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. 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. August 2010 this 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
What I didn't mention above was the dreadful word, incurable. Incurable meaning terminal. My Mum had gone from this lean mean cancer fighting machine, to living on borrowed time. The words just kept going round in my head. When her oncologist told us that it was incurable, I didn't even think about Mum, I looked around, grabbed my bag and wanted to run out the door and just not stop. One of the things you'll learn about me is that if ever something is emotionally difficult, or devastating, I usually run away. Life scares me, death doesn't scare me, but people around me dying - THAT scares me. And not my Mum, shes only 52.
Notice how I keep sidetracking? Right back on track...
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 the puppy (see profile picture) 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 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 would 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. The 28th of May seems like such a long time ago now... I think everyone just thinks I've "come to terms with it" but I really haven't. It hasn't sunk in at all. Although thankfully, I've stopped crying on my boyfriend every day (who may I say, has been absolutely fantastic through all of this - I couldn't ask for better, especially so soon in our relationship).
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 crystallised/collapsed from the first bout of IV chemo, so they're going to be installing a PICC Line, so she doesn't have to keep having needles in and out of her arms. But I'm dreading it. I've got to take her to get it put in on Wednesday before her chemo starts and if she even whimpers slightly, I'm going to have to sit on my hands, as last time when she was having a biopsy, the Dr hurt her and I went to punch him.
Ooooh by the way, this is me & Mum in Cyprus June 2010...
I'd taken her to the beach so she could paddle in the sea, when we were on our way to dinner, and she was just SO excited. It was a nice surprise, but then nothing is too much trouble when it comes to Mum. I'd do anything to make her happy.
I'm so nervous about her starting treatment, I know that once she loses her hair, she's going to start looking ill. She'll be taking steroids which will not only have her climbing the walls, but it will also give her water retention, so not only is she going to be bald...she's going to be all puffy too. My Mum has always been self-conscious, although last time she was bald she went to Next and bought a bright pink baseball cap, and then went to Toyota and bought herself a silver MR2 Roadster convertible with red interior. She said that if she was going to have to be at the hospital most days, she wanted to travel there in style - and she did.
I've not spoken too much to my brother about things, I'm a bit scared of upsetting him... but I've spoken to Mum as often as I can about things, such as funerals, housing, money, regrets, thoughts, feelings and general stuff... I want to cram in as much as I can before she starts chemotherapy, incase it takes her from us sooner than we expect.
Truth be told, I'm so so nervous about her dying in her first week of treatment. Ages 16 I wasn't really aware of the risks of chemo, I just naively thought it would make her better...and because she didn't have many side affects, I didn't think any further than that. But she's not as healthy as she was then, or as active, Dan and I WANT her to be around, but we're not so young that we NEED her...although we do, just not because we're 10 and 16 years old. I guess the fear is what's getting me the most... it's the unknown that keeps me awake at night. I'm holding out hope that she'll just breeze through it like she did the first time, but there's this part of me that just worries she won't. I don't want her to give up like my Grandad did, his cancer took hold of him and took him from us in just a few short weeks... but I also want to treat her like every day is her last.
I never miss an opportunity to ask her a question, ask her how she is, do things for her, give her a hug/kiss...but most importantly, I always tell her that I love her. I know for her this must be weird, our relationship was so strained while I was growing up...but I grew up...and I like to think that maybe shes in some way proud of me and how I've changed myself.
I'd do anything for my family...and to be honest, if there was a way that I could take this illness from her and have to fight it myself, I would, in a heartbeat.
Right...before I get all tearful (I've managed to write all this and only start to well up once - go me!) I better put an end to this essay...
Sorry if I've bored you to tears...It's just easier to get it all down on paper (so to speak) so that people understand if I say something & they don't know the history...
Hx
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