So...... this is how it is

So ..... having had around three weeks or more to get to grips with the latest news, it's been a bit of a wierd time to say the least.  Chemo not worked, nothing more than can be done and prognosis not too bright but there are rainbows to come out of all this mess.

I'm feeling better than I have done for a long while, I look pretty ok (so I'm told every day) and life now revolves round doing what we want, when we want and however we want.  Without the weekly/fortnightly constraints of travelling to London, our weeks are now free to fill with fun stuff around Kev's work and filling it we are!

Our patio area has been totally transformed, just as I wanted it, into a place where we all congregate and have fun.  At night, the new solar lighting makes it look like a fairy wonderland and I LOVE it! We've re-done our bedroom and it's now light and airy and we've sorted new appliances in the kitchen.

There is now more laughter than tears, although there are still days when black clouds loom and it all gets too much.  But that's normal and it's a case of going with the flow and wait for it to pass.

But apart from these small material changes, which in the scheme of things aren't that important, it all boils down to how we are now living our lives.  I don't look at it as being terminal, I look at it as living with cancer and enjoying every damn moment I am given.

Cancer does a pretty shitty job of wrecking lives and it's hard to believe the extent of the hurt and pain it causes but the crap has made our family even stronger and closer than it was before.  I've always made it clear that I want life to carry on as normal, so I'm kept busy for as much of the day as I can - and a quick rest will usually get me back to where I want to be!

Cancer can take a running jump as far as I'm concerned, it's already taken too much of my precious time and having  kicked its butt for the last year or so, I'm not giving it the satisfaction of having the last word! 

Life is for living and I've told my lot in no uncertain terms that this is how it will be and they'll only be doing me a disrespect by not going out there and living their lives to the full.

Begone, damn pain ...

Just when I thought things are ticking along nicely, no pain for a week, the old diseased offal decides to let me know who's boss of this whole cancer malarkey. Was fine yesterday, went to see parents, called into a couple of shops then home. Kev set to cook curries so I decide to help by making fresh raita.  I've only just started chopping up the mint when the old familiar pain starts in my side and the next thing I know, I'm  doubled up in agony, not knowing what to do and breathing like a stuck pig! Kev manages to get me upstairs to bed but it takes a good few minutes for me to actually make it onto the bed, such is the pain.  Once there and a good dose of morphine sees me drift off for the rest of what's left of the afternoon.  Manage to crawl down for some curry but as it hurts to stand, sit or lie, can't get comfortable.  I manage to last out on the settee until 10.00 pm then crawl back up to bed for more morphine and the hope of some sleep.

No such luck.  Kept awake most of the night and finally drift off at 3.30 am only to be woken at 4 by Ellie who wants to go out into the garden!

Needless to say, I drift back off and stay in bed til late morning until hauling myself downstairs.  Such fun weekends we have chez Maison Atkins but just hoping this pain has gone before we set off for London on Tuesday again .......

Interesting fact: since I was diagnosed, I've not been able to eat liver.  Used to love the stuff, especially with onions but it's been off the menu here for over a year .......

PICC line 0 - DN 1

Looks pretty harmless, eh?

Usual Friday PICC flush and dressing change.  Has to be one of the most cringeworthy parts of my cancer care - particularly when the Tegaderm sticks week after week to the line and stings like buggery when it's time to come off.  Today was better - my lovely district nurse/friend/past work colleague (you know who you are) got it off in record time with only a hint of a sting!   Sigh of relief, all over until next week :(

Back up to the Marsden on Tuesday for my next CT scan, to see how the new chemo drug's been performing, followed by full day of chemo fun on Wednesday.  Our consultant did warn us that the main event liver sarcoma would probably grow but that this was normal.  Hoping the lung tumours might have played fair and shrunk but we shall see.  Keeping fingers crossed for good news.

At least this week, the nausea has finally gone and my appetite is almost back to normal. And no pain for a few days, so bonus week so far. 

Still, all that could change tomorrow.  Taking each day as it comes is now part and parcel of our life.  I say "our" because it not only affects me, it affects Kev and the rest of our family.  No planning ahead for the weekend for us, it's a case of seeing how I am and we'll go from there!

Unsung heroes (and heroines)

Over the weekend, as I struggled with some pain from the offending damaged offal (AKA my liver), and was forced to rest, I watched yet again as my other half  moved seamlessly from one household job to another as he has done for the last year.  He’s taken on the care of both house and inhabitants cheerfully and without a moan, whilst continuing to run his businesss, giving me the time to recuperate and do the relaxing things I want to do during the day.  I try not to express any particular wishes as he’ll inevitably conjure them up (as per the veg planters this weekend; my passing comment about growing some veg again in pots resulted in a whole patio of brilliant planters!) During my worst days, when I’ve lost both my appetite and tastebuds, Mr A has cooked no less than three dinners in one evening in an effort to find something I could eat and enjoy.  That’s love for you.

From Land’s End to John O’Groats and indeed, around the whole continent, there are people who are unselfishly caring for loved ones, day in and day out, without a second thought.  They do it out of love and without them, people like myself wouldn’t be able to enjoy day to day life in the way we can.

Being at home, Nathan gets to see all the crap stuff (sorry Nathan xx) and does all he can to make sure I’m ok.  Leah and Hannah provide all the support I need and are there at the drop of a hat and there are no words to convey how much our children mean to us during this rollercoaster ride.  How people manage without a family behind them, I’ll never know and my heart goes out to them.  I know I couldn’t go through this without the love and support I’ve had from day one.  When we said our vows back in 1980, who could have envisaged that “in sickness and in health” would come to mean so much?

So, to all those unsung heroes and heroines out there, know that you’re appreciated for everything you do and thank you ……

The C Word - Lisa Lynch

You might have watched “The C Word” on BBC1 the other night, the drama based on real-life blogger and cancer sufferer Lisa Lynch, who sadly lost her fight with cancer a couple of years’ ago.  If you haven’t had chance to watch this, grab it on catch up or read her book.  Lisa had a hard-hitting approach to her illness, she pulled no punches and told it like it was on her blog, which she used to vent her feelings about her illness.

I was unsure whether I wanted to watch it at the moment, as I knew it would be so near the knuckle but I’m so glad I did.  Parts of the drama were like watching a re-run of our own life over the last few months, with all its shitty bits. Nothing can prepare you for life after your diagnosis and Lisa never set out to be a hero, she raged and also joked her way through the whole sad experience.  The world was a better place for having heard Lisa’s voice and it’s a testament to her that her book is handed out to cancer sufferers to help them cope.

Since my second cycle of Trebectedin a week ago today, I have to admit I’ve struggled with constant nausea and sickness and complete fatigue/lethargy.  No energy for anything other than sleep.  Everything has been an effort, from sitting up to lying down, to trying to force food down, to finding something to drink that doesn’t make me heave.  Eating’s been an ordeal and Kev has produced any number of tasty meals to try and tempt me into eating, including making home-made soups which I eat loads of on a normal day to day basis. Normal – now who am I kidding?  Since when was the last time we had a normal life??

So, a week on and only today am I beginning to feel half human again.  Not sure whether I look anything like human, I steer clear of the mirrors on days like these.  I was still struggling to find anything I wanted to eat  but yesterday, I had a sudden craving for vegetable juice. Last year we bought a juicer as it’s been proved that fresh juices help your immune system and help combat cancer cells.  Kev was pleased I actually fanced something, so off he went to stock up on veg for me. Beetroot juice has become my new fave, can’t get enough of it!

Squeeze those veg!

So today has been ok, I’ve managed  lunch AND dinner and have given Kev a bit of stick so he knows I’m on the mend.  I’ll keep on with the veg juices and hope I’m back up to scratch before heading off to the Marsden in a couple of weeks for the next round ……..

The Curly Word

This C word is one that’s sadly crept into our vocabulary over the last few months, much to my disgust ….

Anyone who knows me will know that with regard to swearing, that particular C word is a no-no! But the new C word in our home is guaranteed to get my back up – and it’s all related to hair. Yes, hair.
Last early summer, I lost my hair thanks to the wonderful chemo treatments and resembled a newborn mole. Come late summer and after a few cycles of the new aggressive chemo drugs, my hair follicles decided they’d had enough of hibernating and sprang to life! I’ve spent the last few months nurturing this new head of hair, albeit now a totally different shade and texture. It’s soft and – well, ok let’s get to the C word then ….

Curly. There, it’s out. CURLY!  The one word that’s guaranteed to get my goat! And doesn’t Kev know it …….  and it’s his new nickname for me (when he can get away with it). All my life I’ve battled against a kink in my hair that resembles the hind leg of a donkey, with blow drying and the my-couldn’t- do without GHD’s.  And now I’m here with a new head of hair and nature has decided to give me a totally new makeover with CURLS!  Thank god I don’t actually look like Shirley Temple …..

Mine aren’t this bad 

thank god!!

I’m so grateful to have hair again, in whatever colour, texture and style. But pleeeze – curls at my age??

I've got a new friend who's very attached to me ....

It’s been a month or so since I last updated my site and apologies for this.  So, the latest …. the CT scan I had back in March showed that the tumour in my liver had grown again and tumours had decided to rear their ugly heads again in my lung.  So, onto a new chemo schedule.  This time, a little easier on me as it’s a three weekly cycle and this particular beauty involves a 24 hour infusion via a pump into my PICC line (oh yes, the PICC, more about this in a minute) which is then disconnected here at home.

My new friend ……

Well, it was certainly a case of trial and error how to deal with a heavy canister dangling from the line into my arm.  As we are still staying up in London after it was administered, going down to dinner with this is fun.  It ends up in my bag and has to sit on a chair right next to me, getting star treatment.   Getting undressed etc is fun, needless to say! Travelling home on the train proves noteworthy too, as my bag obviously can’t move too far away from the end of my arm!! God, the things I have to do …..  Hopefully, this new drug will help shrink the tumours again and stabilise everything.  Fingers crossed  …

Yes, the PICC line ….. when my oncologist informed me that my new chemo regime was to be every three weeks, it was like, yay, then he hit me with the fact  that this drug could only be administered through either a PICC line or a port. Didn’t fancy the port, especially as it involves a general anaesthetic putting it into your chest, so the PICC it was.  I clearly remember putting my head in my hands and groaning when this was decided – having had so much trouble with the line last time around, I didn’t fancy a repeat performance.

Having had the PICC in now for just under a month, it’s already showing who’s boss.  Firstly, it took over three hours to get one inserted, as the site of my old line wouldn’t play the game after three attempts, so it had to be put into my right working arm.  It’s been ok, just didn’t want to play when it was time for the DN to try and take bloods and having the dressing changed was still as cringworthy as it always was.

Oh well, onwards and upwards – back up to the Marsden next week for the next round and two days up in the Smoke with Mr A.  Just wish it was for more fun reasons that visiting a cancer hospital!!!!