Friday 12 June 2015

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.

Sunday 17 May 2015

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 .......

Friday 15 May 2015

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!


Monday 11 May 2015

Unsung heroes (and heroines)

superheroesOver 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 ……

Wednesday 6 May 2015

The C Word - Lisa Lynch

The C Word 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!
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 ……..

Tuesday 28 April 2015

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!!
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??

Thursday 23 April 2015

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.
Chemo pump
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!!!!

Thursday 12 March 2015

Ah, home (but which one?)

Back up to our second home from home, the Premier Inn, Earls Court and its great staff.  Check in far earlier than is allowed which is great as we can relax.  We head out to Tower Bridge and I take piccies of good old Shaun the Sheep who’s set up home there at the Tower.
FullSizeRender(3)



FullSizeRender(2) FullSizeRender(5) FullSizeRender(6)
By the time we head down to dinner, I’m already dog tired but gamefully manage to down a gin and tonic before dinner, plus a small glass of red during! Not long after we’ve eaten, the fatigue gets the better of me so I have to head back to our room, ready for bath and bed before my head hits the table like it did once before.

London today is beautiful – a bright sunny spring day which certainly seems to put a smile on the public’s face for once!  Our trip to the imaging department at RM goes completely to plan; straight in, cannula inserted and then in for the scan.  Nice to have another date with my Stargate friend ….  ct scanner



Leaving the building down the iconic steps seen so often on tv, we spot a vacant taxi, which has also clocked us and hailed it.  In less than ten minutes, we are back at Victoria Station and onto a home-bound train  home sweet home, until we return in 10 days’s time for the results – the one part I hate with a passion.

Much as we try and make the best of our trips to the Marsden, enjoying the “couple time” we get, it’s always so nice to get home again!

Wednesday 11 March 2015

Back in Lenny Henry's bed!!

image So here we are, back up in Earl’s Court, ready for CT scan tomorrow at the Royal Marsden.  It doesn’t seem five minutes since we were last here.

Kev certainly got straight back into the swing of things by rapping at least two lots of ankles – well if you stand in the middle of a busy Underground looking gormless, it’s bound to happen!

Getting the results of scans are one of the things I hate most about all this crap.  Sitting there waiting for your consultant to come in, with either encouraging news or not, as the case may be.  We;ve been lucky in that virtually all our news following scans have been positive but there will come a day when the news won't be so good and we have to be prepared for that.  Until then, I'll sit on the edge of my chair, like a naughty schoolgirl, waiting for the bearer of good/bad news to come through the door ......
 
Anyway, relaxing now in Lennie Henry’s bed before heading down for a welcome Happy Hour and dinner ……
IMG_4084

Tuesday 10 March 2015

Kev's Planet


kev chefThis time last year, Kev was a Facebook novice; he’d be the first to admit he had virtually no idea what he was doing when he logged onto his account which we set up for him! Then, during the spring when we discovered I had cancer, he was inundated with family and friends all wanting to know the up to date situation and he decided the easiest way to do this was to post regularly on his Facebook page.

All through the long summer months when we were travelling up to London three weeks out of every four for my treatments, Kev continued to update everyone via FB with his witty, sometimes irreverent and always honest opinions and thoughts until I suggested that he should start his own blog. After all, what he was doing already was blogging and it needed its own platform. So www.kevsplanet.com was created and now Kev has an outlet for his thoughts and opinions, which I think he finds cathartic at the very least. He’s quickly got the hang (almost) of the WordPress set up and spends a lot of his time tapping away on his laptop and I’m so pleased he’s found a way to express himself which he can also share with others, particularly his love of cooking.

With our return to London this week again, I’m sure Kev will have plenty to blog about as we enter a new phase in our battle against this awful disease which has torn shreds out of our family.  Hope you’ll come along the ride …..




Friday 27 February 2015

A Year on .. Happy birthday Nathan! xxx

So, it’s a year exactly today, on our son’s birthday, since I was finally admitted to hospital after over two years of illness. So much has happened since then but I can remember each and every step of the long journey I’ve had to take, a journey I wouldn’t wish on my worst enemy.
image Who would have guessed after I’d been admitted and thought I was finally going to see an end to my problems that in reality, they were only just beginning? It’s the kind of case scenario you read about and hope never happens to you but when it does, you have options. Once the sheer shock of what was happening had abated, I was adamant that I would NEVER give in to this awful disease, that I would fight tooth and nail to give myself the best chance, no matter what treatment or procedures I would have to undergo.

Even so, had I been able to foresee exactly what I would have to go through, I might have panicked slightly but luckily, no crystal balls are available and so I’ve had to take each step as it comes.
No words are enough to thank the wonderfully caring staff at the Royal Marsden in Chelsea. They’ve filled our long, stressful visits with kindness, humour, truth and above all, a calming sense that all that can be done WILL be done.

After a break from chemo, which has given me time to gather my strength both physically and emotionally, I’m ready to return to the RM shortly to find out what the next steps are for me.

All I know is that I wouldn’t have got this far without the love and support of my family and close friends. I’m so proud of the way you’ve all handled such a hard, distressing year and I love you all. Xx

Wednesday 25 February 2015

Look Good, Feel Better afternoon

th
Spent yesterday afternoon over in the MacMillan Centre at QA Hospital with a group of ladies, attending the Look Good Feel Better workshop.

Look Good Feel Better is the only worldwide cancer support charity, providing practical support for women struggling with the side effects from cancer treatment.
Finding out you have cancer is daunting and life-changing and the added stress of the appearance related side effects of treatment can be demoralising and very hard to cope with. This can have serious consequences on self-esteem and confidence at a time when a positive attitude is very important.

Look Good Feel Better is dedicated to improving the self-esteem, confidence and wellbeing of people undergoing treatment, for any sort of cancer”
photo (21) Despite everyone there being in the throes of cancer treatment and all the baggage that goes with it, the afternoon was filled with laughter as we all dug into our huge goody bags of different high class  products and learnt how to get ourselves looking (almost) how we used to be …….

I was chuffed to get a bottle of Emporio Armani “Diamonds” EDP in my bag; what a great scent!!
Anyone who’s suffering from cancer can book themselves onto one of the LGFB afternoon workshops, just contact your nearest MacMillan Centre.

Monday 23 February 2015

Coconut water shampoo?? I'm in my element!


So …… finally back to “proper” hair washing and although it’s a bit of a novelty at the moment, can’t say I’ve really missed all the hair care palaver over the last few months, to say nothing of the money saved!!  But hair’s arrived so it must be nurtured and looked after.

Was chuffed to find this latest Organix shampoo in Boots today; not only are Organix one of my favourite shampoos but to find a coconut water bubbly was great! Those who know me know I LOVE coconut products and will always walk the extra mile to get a bottle of  pure coconut water – walking round with said smell on my head will please me indeedy ……
julie, feb 2015

Dame Judy Dench, I can give you a run for your money …….

Saturday 21 February 2015

Spring update


snowdropsIt’s been a while since I last blogged on my site so here’s the latest updates: my chemo was doing well and had shrunk my tumours considerably but back in October, I was rushed to hospital, unable to breathe and in a lot of pain. Turns out the chemo had caused some damage to my lung and resulted in me staying in hospital for a week, with blood transfusions and CT scan. I know I was extremely ill and it wasn’t a good time for me or our family.  I was informed that if I hadn’t have gone to A & E, I would probably have died …. that’s the second time last year.  Not good. However, back up to Royal Marsden for a follow-up re. the scan results and it was decided together that I wouldn’t start chemo again for a couple of months, to allow my poor old lung to recuperate!

So, I’ve been on a break from chemo since October and how great has that been! Tastebuds and appetite back to normal, fatigue all but gone  (although I still get very tired each day) and best of all, my hair has grown back, presenting me with my new look, that of a Judy Dench look-alike!!!  Being off the chemo does have its drawbacks, however, as I’m constantly aware in the back of my mind that things could be progressing in a way I don’t want.
January 3rd, however, saw me back in A & E, delivered by ambulance this time, with severe pain in my liver area.  It was a repeat of the pain I had last summer and believe me, I think I'd rather have labour pains - at least you get something at the end of those! Bloody unbearable pain which literally took my breath away and was pretty scary.  The ambulance crew gave me Entonox (see, the parallel with labour again!) which helped and then onto the lovely morphine, which, once it kicked in, did the job.

Bloods showed that I could be suffering from an aneurysm or a kidney stone, so it was off to the CT scanner again! Both ruled out but follow-up at RM recommended, which we did and scan showed slight growth in the liver tumour but our consultant stated that nothing drastic would happen in the space of a couple of months before March so have to go along with that way of thinking.  Chemo still off the cards until March at least, so I’m  kind of living in a bubble at the moment, just waiting to see how things pan out.
photo (5)
But there has been some good news (apart from my hair!) On January 28th, Leah and Si presented us with our third gorgeous grandson, FREDDIE OWEN MUSTOE, at 12.04 am weighing in at 8 lb exactly.

Also, my nails, which had suffered so badly from the chemo, have also had chance to recuperate and are looking a whole heap better (although they are still slightly ridged and break sooo easily!) I’m still applying the Trind Kerotin, although not every day but it seems to have worked so I’ll stick at it.
photo (2)


Wednesday 18 February 2015

Chemo nail rescue!

My poor decimated nails!
My poor decimated nails!

One of the annoying side effects from the chemo I’m getting ( Gemcetibine and Docetaxel) is the damage I’m now seeing to my nails. Researching online, it seems the Docetaxel could be the main culprit but having a double whammy dose of chemo probably doesn’t help matters. Having spent sooo long getting my nails up to par (if you’ve read my earlier posts you’ll know I’ve battled with nail biting for years up until a couple of years ago when I decided enough was enough) and to watch my hard work go down the drain as the drugs took hold has been a bit of a blow. Still, never one to sit down and give up, I’ve researched chemo nail care and delved into products which could help restore my nails to some sort of normality.  Hopefully, this might help some of you in the same position.
Re-hydration is my main aim as my nails have gone so dry, despite using cuticle oil by the gallon. The white bits have gradually crept down my nails but strangely enough, just on both ring fingers! I’m not sure what I can do about those though …..

I’ve had no problem growing my nails throughout my ongoing chemo treatment – in fact they’ve grown like mad. I read that some people lose their nails due to Docetaxel so I guess I’m lucky in that respect.
I read some great reviews on the Swiss TRIND products and decided t0 Nail Balsam &  Nail Repair
give them a whirl  – after all I’ve got nothing to lose but healthy nails to gain. The two products I plumped for were the Nail Balsam and Nail Repair and then their Keratin Nail Restorer and Keratin Nail Protector.  I’ve had the first two products for about a week now and the latter have just arrived. Whilst ferreting around online I was reminded that nails are basically made of keratin and that restoring your nails to health meant restoring the keratin levels.  Having seen that TRIND also have keratin products I went and checked these out and decided that having some extras in my arsenal wasn’t a bad thing.

Using the products is easy: you simply apply a coat of the Balsam to clean, dry nails and leave for two minutes to soak in, then gently rub any excess into your nails. I  can see my nails absorbing the balsam!  Then, you apply a coat of the Nail Repair and allow to dry.  This helps seal in the balsam and helps strengthen your nails. Each day, you simply remove the products with a non-acetone polish remover and start the two-step process again.
Trind Keratin Nail Restorer & Nail Protector
Keratin Nail Restorer & Nail Protector

Already I can see some improvement in the condition of my nails and they are definitely more hydrated. On first applying the Keratin Nail Restorer, I’m really impressed at how quickly it’s absorbed and how incredibly soft and smooth my nails feel, even after one shot. I’ve left off applying the Nail Protector for a few hours as I want to apply some more of the keratin goodness throughout the day.

The keratin products are formaldehyde free although the Nail Repair does contain this. I’m not a fan of formaldehyde but on this occasion, I’m prepared to overlook this if it means my nails stand any chance of getting back to how they were pre-chemo!!