New round of chemo drugs (just for a change)

It's been a while since I last posted but unfortunately, haven't always felt well enough to sit at the laptop ....

Found that the original chemo hadn't worked and instead of helping shrink the cancers, they have actually grown, so am now on a new regime of drugs on a weekly basis, which basically means that we are up at the Royal Marsden for about three weeks out of every four, with only one week off for good behaviour!!

The new drugs are pretty intense and have knocked me for six but if they work, then it'll all be worth it. Have a CT scan booked for a couple of weeks' time to see how things are progressing.  We know the prognosis isn't good; the cancers are incurable but we just go from day to day and keep everything crossed.

On a brighter note, I managed to do the Race for Life back in July and completed the 6k in just over an hour with my daughters and two friends.  It was a baking hot day, which didn't help but we did it and raised quite a bit of money for a very worthwhile cause.......

Hair today, gone tomorrow!

So...... back from another trip to the Royal Marsden, this time a two day stopover, as Tuesday I had my PICC line inserted, which wasn't as bad as I thought it would be (although I did keep my eyes shut for most of the procedure!!)  Now sporting a very nifty little bandaged accessory on my left arm :)

Yesterday was the usual whole day of appointments, apart from having bloods, which was done through my line on Tuesday.  So simple and no cannulas involved - yay!

Chemo was also very quick, following the line being cleaned and re-dressed and was out of the RM at least an hour earlier than we normally are.  Only downside to the day was being told by my doctor that there are now at least two more nodules found and am now a Stage 4.  Great.

Last Thursday I went to work with my hair intact, apart from being able to pull out loads of strands. By Sunday, it was getting pretty obvious it wasn't going to be hanging around much longer and most of it has now gone, apart my fringe (helpful) and quite a bit left on top.  Thank god I sorted out my new hair in time, plus my collection of hats/scarves etc!

Going into work for the first time with my new barnet was a little nerve-wracking but the only comment I received was from my colleague asking if I’d been to the hair dresser and that my hair looked so good! Other than that, I told everyone else who commented.  No point keeping it to myself.  Just in case the wind blew it off and then what an idio I’d look.
My “new hair” is an exact replica of my own hair, only looks sooo much better! It’s fooled a few people who think it’s my own and who am I to argue with that? The owner of the hair salon who supplies the hair is a fellow cancer sufferer so she knows exactly what we’re all going through when we lose our hair and want to look as “normal” as possible. Good on you, Chris.

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.