Summer's here (but I wish it would go away!)

So, another day of feeling yuk which meant I knew I couldn't go to work.  Fell asleep this afternoon for an hour or so, which I probably needed as I didn't sleep through last night (again).

The British summer has really kicked in over the last few days, which is great but the sticky heat gets a bit much, especially at night.

Moan, moan, moan – just wish it was a bit cooler.  I’m already hit with hot flushes (oh yes I forgot I had a total hysterectomy a few months’ back which launched me into the menopause.  Thank you.  On top of everything else) so the heat does get a bit much.  But could be worse, I suppose.  Not sure how, but I’m sure it could ….

Nausea, nausea, nausea -- oh and not forgetting the ulcers!

So, there's no pattern to the nausea and retching! I seem to have a couple of good days followed by a wipe-out day when I don't have the energy to get off the sofa.

And then there are the ulcers.  I'd read about this lovely side-effect but really hoped I would avoid them but I've got a couple of ulcers now, together with sore lips so the pineapple ice-cubes have come into their own....

Things are doubly tough at the moment as we visit mum every day in the stroke ward and I have to pretend that everything's ok in my little world.  She's too ill to remember that I have cancer and so we play the same game each day. Me, putting on a smile and pretending all is well when I feel like shit and just want to go home, curl up on the settee and sleep.  Still, the old acting skills have come into play and it seems to be working ......









Can't wait to see what else is in store for me :)

But I did manage to find my jelly sweets at the local market. Bargain.

Tastebuds, where are you???

Not only am I having to cope with nausea and retching but now my tastebuds have taken a holiday! Even when I do fancy something to eat, what it looks like and what it actually tastes like to me are worlds apart. Sod this for a game of soldiers!!

Even plain water has lost its oomph so I've ordered a new Brita filter jug which should be here today. At least I'll have some decent hydration that's not full of contaminations.  Got enough of those in me at the moment without adding more .

Side effects so far ...

After a great first day following chemo, I just know that things are going to change. And it doesn’t take long either …

Friday I wake up and know immediately that I feel sick.  Sick, nauseous, just yuk.  I down my anti-emetics and hope it’ll pass.  Wishful thinking – the whole day’s spent either retching or feeling crap.


So, ginger game plan on.  I stocked up on teabags and crystallised ginger before going to London and am glad I did.  The ginger helps but oh god, I’m fed up with the stuff already!

Liquorice jelly buttons  (the ones you get in allsorts) help too but the only place I can get these is at our local hospital's shop!!  Drinking plenty of water and tea when I can stomach it but my tastebuds are definitely changing.  My appetite’s disappearing although I’ve found that sometimes when I think I feel sick, I’m actually hungry but halfway through eating, I can’t take another mouthful.

The inside of my mouth seems to have a life of its own now so the mouthwash I was given has been well used.  Also my lovely niece Rebecca reminded me that pineapple juice is a great antiseptic and I’ve taken her tip and frozen freshly-juiced pineapple juice cubes ready for when those dreaded mouth ulcers dare to show their face!

I’ve been tired for a long, long time but didn’t realise this would be getting worse. I can sleep for England and being back at work is only adding to the problem! But I try and stay awake in the evening as long  I can but trying to socialise is now getting to be an effort.  I just love my bed!

As most people are aware, one of the biggest side effects of chemo is hair loss.  Not everyone loses their hair, it all depends on the drugs.  I was told from the outset that I’d be losing my hair thanks to the Doxorubicin and even now, it’s starting to come away, a few strands each time but enough to notice.  The whole texture of my hair’s changed too, so it’s baby shampoo all the way from now on!  So how do I feel about the whole hair loss thing? To be honest, it’s only hair.  If it means I have a better survival rate, then why should I or anyone else worry about it? Millions of people are going through exactly the same thing each and every day and it’s just one of the darker sides of cancer and chemo.

Hello Royal Marsden ....

Travel up to London Victoria ready for our afternoon appointment at the Royal Marsden. Just up the road from the hospital, I decide a glass of wine would be in order. And we toasted to kickin' cancer's butt with a large one!

Kickin' cancer's butt

Good thing we are fortified as there is, yet again, more bad news. The cancer has also spread to my liver and it's pretty serious. We ask and get answered, all our questions, nothing's too much trouble, we're given leaflets on rare sarcomas, keyworker contact numbers .... Chemo is discussed and we decide this is the next step forward. I'm asked if I would like to have chemo locally or come up to RM every three weeks. By the time we leave, our minds are made up. Yes, it's a lot of travelling, especially when I start feeling really ill but there is no comparison to the care we're receiving from RM. Anyone who's walked through their doors can't fail to be impressed by the calm, positive attitude of everyone working there.

We're going to get to know this place SO well!

We are the last patients at the RM when we finally leave to catch the Tube back to our hotel and I can't speak for Kev, but I feel as if it's all happening to someone else. We now know the true extent of what's happening to me and what's been missed over the last two years and we are devastated. And angry.

Chemo, Day 1 Aftermath .....

Travelling back from London last night, I was exhausted but glad things went so well.  I felt ok and slept the whole night, thanks to the sleeping tablets given to me by my consultant at RM.  I've had so many sleepless nights, they're beginning to catch up with me so having something to help is a real bonus.
So I wake this morning wondering what's going to hit me.  Nothing. I feel totally normal, I go out to lunch by the beach with a couple of friends and sit in the shade with a cider, followed by a wine.  I know this is the calm before the storm so I make the most of it while I can.  I'n not naive enough to think that I'm going to get off light ....

Chemo Round One

Chemo Round One

Victoria-bound again, this time for my first day of treatment! Due to the last minute arrangements, we can't get booked into our usual Premier Inn in South Kensington, so I've had to bite the bullet and book a cheapo hotel not far from the hospital.  From the price, we know it's going to be pretty dire but there's nothing else available at such short notice.  And it's only for one night ....

The hotel's not quite as bad as we thought (thank god we won't be here all day!!!) although the continental breakfast cheese was stuck to the plate, forcing Kev to ram his fork into the slices, in a desperate bid to upend at least one slice!  Glad to leave our case in storage and head off to the Tube!

My timetable has been planned pretty methodically: Bloods 10.00, echocardiogram 10.30, doctor 11.50 then chemo 2.00.  This is when we find out that things don't always run to plan! First problem is trying to get bloods from me. My veins won't play and it takes three attempts before the necessary tube is extracted from the back of my hand!  The echo shows my heart is 100% healthy, which is great as it means I can go ahead with the chemo, provided my bloods are ok.  In the gap between the echo and seeing the doctor, we head outside back into South Ken;  It's boiling hot, there's the London buzz in the air which I love and we have plenty of time to spare before heading back for chemo.

This is where everyone plays the waiting game. The chemo suite is large, bright and airy with comfortable reclining chairs.  It's just a matter of getting in there! In the end, I only have to wait just over an hour and a half before I'm called in. And then I myself am the cause of more delays for other patients! Yep, it's down to those old cannulas again! No cannula, no chemo. My poor nurse has three attempts, on both my arms and hands without success, even resorting to putting my arms into a yellow sharps bucket of hot water to soften my veins.  Chaos erupts when another young nurse trips over the bucket which is on the floor, spilling  a gallon of hot water everywhere! Kev is on his knees with towels, helping to mop up the river of water which has gone everywhere.  Meanwhile, I am reclining back in my chair, just praying they can get the needle in so we can get going with the chemo! Finally, another nurse is called over who quickly and expertly inserts the cannula and we are away!

The actual chemo seems a bit of an anti-climax after all the excitement.  Half an hour's worth of bright pink Doxorubicin quickly and efficiently pumped into my veins from two large vials, followed by a few minutes of flushing and we're all done.  One quirky note to end with; your pee is bright ponk straight away. What a party piece!

Knowing the problems I have with my veins, I'm having a PICC line inserted the day before my next chemo, which should help as all bloods and chemo can be done through the line.

Round One - Done!

Rare night out!!

Out to my work colleague's wedding reception tonight - the first time I've been out properly since March! Great to see my friends again but by the time our lift home arrives, I am totally ready for bed! Congratulations Nicky and George!

PET scan, bring it on!

Get a phone call asking if I would like to bring my PET scan forward by a day. Sounds like a plan. Got nothing better to do. Plenty of water to drink beforehand, no food then into a private little cubicle while a doctor inserts yet another cannula before producing the magic potion; the radioactive mix! Luckily, the cannula's removed and I just have to sit still for an hour while it floats around my body then it's off to yet another Stargate-inspired polo mint scanner for 40 minutes!Having to lie still for so long isn't as easy as it sounds, especially when I've got a frozen shoulder! By the time I'm slid out of the mint and allowed to get up, I can hardly move!!

Meltdowns? Me??

Ok, ok, so I promised myself I'd face this head on, with a positive attitude; a cool, mad chemo woman. But I'm only human and sometimes things just get on top of me.  It can be the smallest thing that sets me off; the thought that I will probably not get to see my children grow older or my grandchildren grow up breaks my heart;  the fact that I probably won't get to spend more time with my soulmate and love of my life, Kev, now that's a killer.  I've had a couple of melt-downs and I've just given into them, until I'm all cried out.  It's draining and makes me feel yuk but holding your feelings in is never a good thing, especially over something as big as this.......

I know they mean well but I have to say, some days I feel that if just one more person tells me to be positive, I might just let rip!!!!!! Apologies if you happen to be the other end :)

And it's my birthday today too and what a great day I've had with my family xxxxxxx

One of the presents I received was a phone call from my keyworker at RM letting me know that she's organized my first treatment sessi

Back to work!

Another step forward - finally  back to work today, having been off ill since the end of February!   By the time I get home at lunch-time, I feel as though I've done ten rounds with Joe Fraser!  Tiredness isn't the word. After a quick visit to see  mum with my dad, I end up having a two hour nap - and then wonder why I can't sleep again!

Can't remember the last time I had a late night; I can't usually last beyond 9 pm!! Sad, eh?