November update

Well, it's been a little while since I updated here but unfortunately, I've been pretty unwell and haven't felt like dragging out the laptop and tapping away.  There's been some good news and some setbacks: a CT scan I had a few weeks' back showed that the chemo was doing its job and the tumour in my liver had shrunk.  Good news indeedy but this was overshadowed last month when I had to go to A & E as I was having trouble breathing and could hardly walk.  The breathlessness had been creeping up on me for several weeks but as I knew it was a side effect of the chemo, I must admit, I didn't stress out too much about it at the time.  Ok, so I was very very tired all the time and had no energy for anything other than the necessaries. Our trips up to the Marsden had become a trek for me and whereas I had been able to walk the 30 minutes from our hotel to RM, taxis were now the order of the day, both there and back.  I had trouble walking short distances, getting seriously out of breath and feeling like crap!

I had to stay in hospital for a week, as the doctors tried to work out what was wrong. A blood clot on my lung was one possibility, as was neutropenia (a killer for cancer patients if not caught in time) but a week of daily blood tests (well done PICC line for all your sterling work there!), lovely antibiotic IV's and a CT scan revealed no clot, thank god, but obvious damage to my lung, probably caused by the chemo.  Having missed a complete chemo cycle, we traipsed back up to London having been pre-warned that I probably wouldn't be having  chemo and that's exactly what has happened.  I'm having a break for a few weeks to allow my lung to heal, but the CT scan showed that the tumour was still shrinking and the mets in my lung had all but dissipated.  So it's a double edged sword.  The chemo drugs are  working but at the cost of my lung, so the plan when we go back to RM in December will be another CT scan and then decide what course of action to take with regards to the chemo drugs. 

Still on a reducing dose of steroids which have completely wrecked my sleeping patterns and they just pile on the pounds! I'm awake most of the night and am at a loss to understand how I stay awake during the day! Feel sorry for Kev who wakes up as soon as I move and then has to put up with me being awake in the small hours of the night, reading or playing a game on my iPad! Being off the chemo has given me my old life back, even if it's only for a short while.  I feel well, I'm eating well and enjoying having my tastebuds and I can even forget I have cancer, just now and then.   As the doctor from our hospice said to me, you get so used to feeling ill, you forget what it's like to feel normal.  How true that is.  Plus, my hair is growing back, albeit a different shade to what I had before, but hey, it's hair!!

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.

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?

.. and so it goes on ...

Back to the hospital for the CT scan results and true to form, things are not good. There's now definite evidence of two nodules on my lung. Secondaries. I'm beginning to think there's a vendetta against me. PET scan now booked in for next week which will show exactly what's going on inside me

20/5/14

Back over to local hospital to see my consultant (for the last time as I'm handed over to RM).  He confirms that I have a sarcoma which needs sorting.

I want things to start moving now, I've had enough of waiting around while the cancer might be growing as we speak. Bring on the treatment!

On the mum front, she has surprised everyone and decided that she doesn't want to go anywhere. She's now onto her third ward and is progressing as well as could be expected.  One good bit of news at least.

30/4/14

Mum in end of life room but holding on. We have all said our goodbyes. Totally heartbreaking.

24/4/14

My mum suffered a massive brain haemorrhage today and it doesn't look good. Not much else could possibly go wrong.

CT scan ... polo mint time

CT scan

Over to the hospital early for my CT scan. Oh joy, yet another cannula into my battered arm as they pump dye through my veins! The scanner looks like a polo mint and has flashing led lights. Pretty cool. Slowly adding to my repertoire of scans: ultrasound, MRI, CT and next, the PET!!!

And our world caves in .......

What I think is a visit to my consultant for a hysterectomy wound check is quickly quashed ... I leave Kev downstairs to grab a coffee and wait for me, as he usually does when I have appointments. As soon as I get into the consultation room and see (a) no consultant I recognise (b)a nurse (c) an extra doctor (just in case one wasn't enough), I guess I know something isn't quite right.

A total hard-hitter, the consultant asks me straight away "Do you know why you're here?" to which I reply, of course, for my wound check. (does he think I lost my brain as well as my womb??) No such luck. He then informs me that the biopsies have come back and have shown a large rare sarcoma in the fibroid, known as a leiomyosarcoma. Because it's so rare, I've been referred to the Royal Marsden, one of the best cancer hospitals in the world, which specialises in rare sarcomas. CT and PET scans are arranged before the nurse asks if I am alone.

True to form, Kev has turned his mobile off so we have to go down and locate him. He knows as soon as he sees me that things aren't right and hugs me tight but we go through things with the nurse before heading home with the horrifing task of telling the family the news. That opened the floodgates - how on earth can we go and tell our three wonderful children that I have cancer, after all I've gone through over the last couple of years? I'm numb.

Telling them isn't quite as traumatic as it could have been. Each of our children takes it on board in their own way but it's heartbreaking for me as a mum to watch. Telling my parents is another ordeal and watching my mum's face crumple as she fights to stay calm will stay with me forever.

But we are in this together, as a family and as a family we will take each day as it comes.

Day 10 and onwards .....

So, staples removed and finally able to get a little more comfortable. Still tired and spaced out and resting for the majority of the day. Have strict instructions not to do anything, so I'm doing as I was told (for once). I came home with a carrier bag full of meds, which had to be sorted out each day - that was left to Kev as my brain couldn't cope! All my concoctions are decanted lovingly into shot glasses - minus the alcohol! Not even allowed into the kitchen to cook - now this I definitely could get used to!

If someone had told me just six months' ago that I'd be facing the biggest battle of my life, I'd be forgiven for thinking they'd lost the plot. I was seriously ill and things were about to be taken out of my hand. The fibroid which I'd been nurturing for a couple of years had now grown to the size of a six month old fetus and having lost a load of weight, I wasn't amused at regressing over twenty years to look pregnant!

Years of gynae problems and a severe lack of any kind of normal life finally landed me in hospital at the end of February 2014 and the beginning of my journey into the world of oncology....

Feeling so lousy I couldn't stand, severely anaemic and totally exhausted, I was admitted one evening with the expectation of hopefully finally being sorted out before being discharged home. I should have know that things don't always go to plan. Septicaemia had raged through my body and although I knew I was ill, I had no idea just how bad until we were told after that if I hadn't come in that night, I would have died. Hm, that one made me stop and think. The fibroid had rotted internally and had been slowly poisoning me. The next few days were a blur of extremely high temperatures, drips and morphine as the staff tried to stablise me before I could have a TAH with BSO (total abdominal hysterectomy with bi-lateral salpingo-oopherectomy - nice!) So, I went down to theatre at 10.30 am with a bump and came to with a huge stapled scar that resembled a train track! Famous last words from my surgeon "We're 99% sure it won't be cancerous but it'll be sent to the lab anyway".

Well, that was just asking for trouble, wasn't it?