Apologies - A tough week

I'm sorry there's been no update for the past few days...as most of you are aware it's been a bit of a bad time.

Mum's health declined quite severely from the last post I made, which resulted in her being taken into hospital at 9:30pm on Thursday 12th July. Her temperature was 38.3 which was "dangerous" level, she had flu-like symptoms, and at this point she hadn't eaten or been able to keep water down for 4 days.
I took her in, at her request as she was starting to worry that there was something serious wrong, and thank God I did.

On Friday it was confirmed that Mum had neutropenia, dehydration and malnutrition, and having read up on this and spoken to the nurses at the Churchill hospital, had she left it any longer it would have been life-threatening, and could easily have been fatal. She was given IV fluids through her PICC line, aswell as anti-biotics, and anti-sickness medication too over a few days.

I am sorry this isn't more in-depth, but I'm knackered from all the typing and texting from the last few days (joys of having a big family and lots of friends!).

Mum was allowed home yesterday as her temperature had regulated itself, she was fully rehydrated, able to eat solid foods & generally feeling much better. This was a relief for her as the woman in the bed next to her was a complete wimp and kept Mum awake all night moaning and whimpering and generally being a drama queen.

Mum's looking and feeling much better today, although her legs are sore & feel heavy from where she spent nearly a week in bed...and her feet are a bit swollen. However she's just informed me that her hair is starting to fall out now, so I've called her breast care sister Karen so that she can arrange a wig voucher (although I'm not too sure what the panic for a wig is as Mum didn't wear the last one!).

Last time Mum's hair fell out, it was me who washed her hair, cut it and then shaved her head. This time it's Dan's turn. I think he's dreading it... although Mum's beautiful with, or without hair. I can totally get how he feels though, the thought of it was daunting - but, you do anything for those you love so if it makes her happy to shave it all off then that's what we'll do, together.

Thank you to everyone who's been in touch the last few days, sorry I've been a bit rubbish at texting back... I've been knackered & trying to get the house into some sort of order for when she came home. Hard-work paid off though...last night she slept in her nice clean bed, in her nice clean re-arranged bedroom & said she had a "lovely nights sleep".

One of the things Mum said to me before she had her chemotherapy was

"This is not a battle against staying alive, because that would be futile... It's a battle to prove cancer wrong and show that I am a strong person" 

...but in trying to prove that she was a strong person, she let herself get really poorly when she didn't need to.
Accepting the treatment, and indeed her fate, is what makes her a strong person.
Still going to work through this bloody illness, is what makes her a strong person.
Being so positive when the future looks bleak, is what makes her a strong person.
Her ability to be able to get up every day and still find time to laugh and joke is what makes her a strong person...

Asking for help doesn't make you weak - it makes you responsible & Mum needing the help of the hospital to make her feel better doesn't make her any less of a person, it gave her the chance to get some well deserved rest & treatment that I just couldn't give her... and the fact of the matter is, that had she not gone into hospital, Dan and I could have lost her. I'm just so glad we didn't. I'm also glad that she has said that if she feels this way again, she'll not hesitate to call triage and get herself taken in straight away.

There is a big chance of it happening again, but at least this time we know what neutropenia is, we know the warning signs and we know what to do.


H xx

A few bad days..

Apologies for not updating sooner... didn't really know what to say.

Well...the last few days have brought us down to earth with a bit of a bump. Came down Saturday morning to find Mum under a blanket on the sofa, barely talking and wincing in pain. Side effects had kicked in then.

She likens the pain to being attached to "10 slendertone machines on full throttle" with shocks going through all her muscles, mainly in her legs. She's also had sharp pains in her liver, and in the breast where she had her reconstruction, so I'd assume thats the chemotherapy attacking the lesions/tumours.
She's still finding time to make the odd silly or rather inappropriate joke though, even if she doesn't feel up to it.
She had a day like this when she was taking Capecitabine, and I think we were all hoping that it was just one day and then she'd be back to normal. But we're on day 3 now, going into day 4 and it doesn't look like the pain is going to stop anytime soon :(

It's been a hard few days, both physically and emotionally for all of us. I've been in bed most of the day with probably the worst migraine I've ever had, which left me feeling pretty useless as I'm the one that's meant to be helping Mum, not the other way round. Poor Dan had to leave us both and go to work - he's been doing so well, not letting any of this rubbish of the last couple of years affect his job...taking minimal time off but always managing to be there if we needed him for anything. My boyfriend Mark has also been pretty amazing... I dont know what on earth I did to deserve him but he's definitely an angel.

Mum felt a bit better this morning, but then around 1pm when I managed to get myself downstairs for a bit, she started feeling rubbish again (I must be bad luck!). Even the puppy didn't know what to do with himself, bringing his ball and his "raggy" (knotted rope toy) over to both of us, almost as if to try and cheer us up because they cheer him up. He's been a very good boy most of the time, but is a bit confused and I expect senses there's something not quite right.

Every day I wake up not knowing what it's going to be like, or what I'm going to find when I get downstairs... but if Mum's bedroom door is open and she's not in bed - then its as good as sign as it can be. It means she's up and able to get downstairs at least.

Sorry there isn't any more positive news... we're taking one day at a time & going from there.

Thank you for all the positive feedback on the blog, it's nice to know that it's worthwhile. It's also nice to be able to spill out how we feel without holding back.

Lets hope tomorrow is a more positive day...


H xxx

TFIF

Well... today was much like yesterday. Mum's still feeling fine, still feeling comfortable and pain-free... the only difference is that her taste-buds seem to be affected now and she can only taste bits of what she's eating and drinking...

She's done 3 loads of washing, and emptied and re-filled the dishwasher, among other things and seems to have had quite a productive day.

The only thing was that (and she will be mentioned alot, I feel) one of our gobby neighbours was outside banging on next door's window at around 8am, which woke Mum up... and Mum had been awake for a couple of hours during the night so it's made her quite tired. Broken sleep is never good for anyone, let alone someone going through what she's going through.

So with that, and the puppy being an absolute mental case this afternoon... Mum's knackered so is resting up on the sofa and hopefully having a snooze!

Dan and I are both so proud of her, as I expect everyone else is too. Anyone who knows Mum knows that she's a fighter, and by being so stubborn and keeping a positive mental attitude, we should have expected she'd be doing so well... but we take each day as it comes, you really never know what's round the corner.

I am currently the proudest daughter in Britain though & hope that I become as courageous and as inspirational as my wonderful, beautiful Mum.

The support we've received has been amazing... It really does show that when times get hard, family and friends are worth their weight in gold... so on behalf of all 3 of us, I'd like to say thank you to those who've been here. Without your kind words, and lovely gestures, we'd probably feel pretty alone... But we don't. We feel loved, and supported and know that everyone is behind us in this fight.

Got some photos that I just felt like uploading because they made me smile.....

Mum & the Boys - Cyprus 2011

Mum & the boys swimming - Cyprus 2011

Me & Mum - Cyprus 2011

Me & Mum - Cyprus 2011

Mum & Dan - Cyprus 2011

Me & Mum - Cyprus 2011

"Amor Vincit Omnia"

Love Conquers All

H xx

The day after the day before..

Well...I woke up this morning and came out of my room, to check that Mum was up and about... and she was.
I shouted down to her, to make sure she was okay, and got probably the chirpiest response I've heard from her in a morning, in a long time.

What.The.Fudge.

I was up til nearly 4am cleaning ready for the district nurse to come over today to change Mum's dressing on her PICC line (due to the bleeding during insertion, it's usually changed the day after it's done, and from then on, weekly) so the kitchen was all sterile, and maybe that was why Mum was so chirpy? Maybe I did a good job ;)

When I was a bit more awake I went down to see her and it was like seeing a different person.
She was smiley, relaxed and pain-free. She didn't wince when she moved, or groan when she had to stand up or sit down...she was just 100% relaxed! The relief of finally getting IV chemo is definitely showing in her, I didn't realise she wanted it so badly until today... it's days like this that really are priceless.

The only complaint she had was that the district nurses office couldn't confirm when the nurse would arrive, so it was a case of waiting in between 8am and 4pm for her.
She arrived at around 12:30-1:00 and as with everyone else, she was lovely too! Mum had seen her before, as where we live, our elderly neighbours often have visits from district nurses.

She changed the dressing, and put a completely different looking one on from the one that was there originally, and Mum asked me to take a picture, so here it is:

The black on the left hand side is mainly bruising (Mum bruises like a peach anyway, especially now she's having chemo) but it's all neat and tidy, and causes Mum absolutely no discomfort - even when she is in bed.


...But just incase, I got Dan to change Mum's room around, so her TV was at the other end of her bed, so she could lie on her right side.

The only side affect Mum has noticed so far is that her taste buds are slightly different... things don't taste "normal" but she's eating well, looking well, sleeping well, she's still pain free and feeling completely optimistic.

And so are Dan and I :)


H xx

Chemo Day!

Well its finally here... Chemo day. 4th July 2012.

We set off around 9:10am to get to the hospital in time for Mum to have her PICC line put in... And got there for about 9:45.
There was some sort of delay, which ended up with us being sat around...well, me being sat... Mum was given a bed to lie on (unfair!). The bed was really high up so Mum had to literally climb up onto it, and shortly after, one of the day treatment unit nurses called Joe (an Aussie) came over and told Mum that they can lower the bed for her to get on, and told her that it's a hospital not an olympic training ground! Ha!

The nurse finally got to Mum around 11:30 and her name was Winnie. She was LOVELY.

Winnie perfoming the Ultrasound

She explained the procedure, and Mum had to sign a consent form. She then informed us that she was waiting for her colleague who was part of the Line Insertion Team, to assist her with the procedure.
Her colleague, named Nicola (also LOVELY!) arrived around 12ish and they began.

Winnie had performed an ultrasound on Mum to find the vein that they were going to insert the PICC line into, eventually she found it and then she got gowned up ready to perform the procedure, and prepped Mum for it, under the supervision of Nicola (who seemed to be, I assume, the head of the LIT). Fully prepared, and ready to go, they gave Mum an injection of local anaesthetic and began.

- Apologies for the pictures - they are a bit rubbish (I was trying to be sly..) -

The first attempt at the PICC line didn't go too well, it was slightly in the wrong place and the wire wouldn't insert properly...so Nicola had to intervene and she gave Mum some more anaesthetic, and re-sited it - and it went in first time! Perfick!

I got a bit freaked out as there was a fair bit of blood, so I went to go out and get some air and came back armed with lunch, courtesy of the League of Friends cafe...yummy! Me and Mum had our cheese/ham rolls and then she was asked to vacate the bed, and move to the seated treatment area.

It took a little while for them to come over and hook Mum up to the machine, and first they had to do a flush on the line which went smoothly...

Mum having the line flushed

Fantastic Machinery

Shortly after, Mum's chemotherapy was delivered from the pharmacy, and they began.
Now before the PICC line, Mum used to have it done through a canula in her hand, which would always bruise and would end up being really painful (usually because it would take up to 5 attempts to get the needle in due to the state of Mum's veins) so the PICC line was a real godsend. Instead of the cold feeling Mum would get when having an infusion, and being able to feel the liquid going through her veins, she felt nothing. And was able to relax (and people watch..lol).

Mum looking bored

The infusion takes around an hour, plus the time it takes to get the dregs out of the bag, and then a post-chemo flush of the line again... but at this point we'd been there for over 4 hours and we were both tired and wanting it to just hurry up so we could get home.

Mum still found time to have a laugh and a joke though...

The infamous "face" pose!

The woman next to her was having an infusion and had been there from the minute we walked in, sod that! Mum was talking to her when I took this photo, and a couple more pics which were equally as blurry!

Looking far too relaxed!

There were absolutely no issues with the chemotherapy at all, no allergic reactions (which is one of the highlighted side affects) and as per usual, Mum just BREEZED through it like it was nothing.

Once the chemo had finished, they flushed the line with around 50ml of the sodium chloride solution, and we were on our way (with a big green bag of dressings, solutions and other things ready for the district nurse to arrive tomorrow).

The nurse who dealt with Mum's chemo today was called Debbie, and she was lovely. Really engaging, sweet natured and friendly... to be perfectly honest, we're so lucky as all the staff at the Churchill Hospital are equally as nice as each other, and make it that bit easier when you're there by making you laugh and smile.

This evening we've mainly been relaxing... Mum feels fine, in fact she feels better than fine. She even stayed up until Dan got home from work around 10:15ish, and when I came home at about 11:15 she was still awake with Dan and eating a take-away!

What exactly was I losing sleep over? I should have known she'd kick-ass like she always does...

H xx

About us, and about the blog..

I expect most of you know who we are, as this blog is meant for family and friends...but secretly I'm hoping it reaches further than that! And maybe offers some help, and information for people in the same situation as us.


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

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.


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