Avoidance tactics

Here are some things I should be doing:

• Finding out about what will happen when the Cancer Drugs Fund (CDF) comes to an end next month.  I know it will be bad news and I haven't got the heart to read it.  (The CDF allowed patients in England to access some cancer drugs which were not otherwise available.)
• Starting an online course I registered for about immunotherapy.  But it looks like it might require thought.  Besides, the dog ate my homework.
• Looking at the scary form I've received questioning my right to receive Employment and Support Allowance (a state benefit) and asking lots of questions about my ability to work.  I don't have the mental stamina necessary to complete the form let alone hold down a job.
• Completing the skirt I started making last year.  But I'm at the stage where I have to do things with interfacing and attempt a button hole.  Cue an attack of the vapours.  The pattern says 'only one hours sewing time'.  Ha ha bloody ha

The material is now even more 'vintage' than it was last summer when I bought it

 Anyway, here's what I've been doing instead of all the boring stuff above.

•  Getting out and about in the winter sunshine

•  Going on two, yes two, snowdrop walks.  Never let it be said I don't know how to live on the edge.  In case you're interested, or even if you aren't, one walk was the annual one in support of a local cancer charity, (many thanks to all the family members who turned out in support of this, once again you warmed my cockles) the other was at Rode Hall.

•  Going to Cambridge for the weekend.  It was very chilly and I walked my legs off

 

Trinity College (I think).  My brain had frozen by this point.

 

Punting?  In that temperature?  Silly sausages!

•  Stopping off at Ely Cathedral on the way home.  Truly my middle name is Culture (or possibly Louise, you guess).

•  Getting excited about finding a local shop (Whitchurch) bearing the family name

 

What can I tell you?  I'm easily pleased

•  Gazing soppily at a happy Cyril (the three legged monster cat).  Also taking him to the vet again after he got into yet another fight That's 53 quid on antibiotics thank you very much.

Bless his furry little chops

•  Purchasing (for reasons too complicated to explain) a Playmobil Elvis.  I'm pleased to say he was well received.

Now before you start tutting and shaking your heads about my avoiding all the things I should be doing, the reason is not, as you might have thought, cowardice, laziness or excruciating hangovers.  No, the truth is I have been traumatised and the shock has rendered me quite incapable of anything except the most frivolous activities.  One of my sisters discovered (I know not how) that our old family home is now used for this.  And to think I thought finding out I had incurable cancer was a shock.  What did I know!

Bugs

January.  Cor.  It went on a bit, didn't it?  I started and ended the month with the lurgy.  Not a serious lurgy, just the common or garden lurgy that everyone gets but even so.  What with that and the usual chemo stuff it seems like I spent most of January feeling moderately crap.  This is, of course, light weight crap compared to what lots of other people are going through but I'm not going to let something like that stop me from whinging.

And the weather.  The sodding, sodding weather.  Grey, miserable, windy, rainy.  Precious few of those sunny, chilly, crisp days that make winter bearable, even enjoyable.  In fact I think we've only had one frost this winter.  Which is probably why bugs, of all varieties, abound.  I'm full of germs, the garden is full of slugs and the cat is full of fleas.  Here he is, like me, feeling sulky.

I had my latest CT results toward the end of January.  Dear God I was scared.  I'm always frightened going for results but this was worse than usual.  I suppose it's because I know I'm running out of treatments.  There are a couple of chemos left for me to try but once all possibilities are exhausted there is nothing left but palliative care.  Of course, I knew this all along since day one of being diagnosed with metastatic breast cancer, but as the time comes nearer it all gets scarier and scarier.  My pal Kath has put it a million times better than I ever could.  Read what she has to say here. 

Anyway, this time I was lucky.  The CT showed stable disease.  Also, more good news, the medical bods are pretty sure that the stabbing pains I get in my chest and side are nerve related (from the surgery).  However, as I have now had 54 cycles of chemo the time has come, according to my onc, to give the chemo a rest and try a hormonal treatment, exemestane.   While I will be delighted to have a break from chemo, cannulas and all the associated palaver, I am a bit concerned about stopping a treatment that seems to be working.  I've checked this with the onc but she's definite that I need a rest and I assume she knows her onions.  I'll have another scan in three months time to see how things are going.

Although this has been a bit of a mega-moan January hasn't been all doom and gloom.  There's been the trip to see the other-half's nephew in panto (oh yes there has), my hair finally getting long enough to discard hats and scarves and, above all, sister no 2's latest foray into crochet.  A Death Star.  I kid you not.

 

The Lurgy

I’m starting the New Year in the traditional way, by feeling like a bag of bollocks.  I’ve been fighting off the lurgy for a few days but overnight my immune system waved the white flag and I’ve woken up with a streaming nose, hacking cough and total and utter grumpiness.  

To make matters worse I think they’ve changed the recipe for Lemsip.  I used to love Lemsip.  It almost made having a cold worthwhile but now, due to an ingredient change, or the state of my chemo-altered taste buds, it tastes like a menthol/antiseptic cocktail that’s been mixed in a disintegrating hot water bottle, only worse.

The lurgy does have some consolations though.  I’ve got up early (to spare the other-half having to listen to me cough) and draped myself on the sofa while watching the 1953 version of The War of the Worlds on the telly and, best of all, am snuggled up under a really wonderful present.  This picture doesn’t do it justice, but look what a friend made me, a completely gorgeous quilt.  

 

It’s in exactly the right colours for my sitting room, so even though I’m poorly, I'm colour co-ordinated.  I'm afraid I disgraced myself a little bit and came over all emotional when I was given the quilt but, honestly, what a beautiful gift.  

Talking of wonderful things.  Christmas.  We had a real slap-up, no holds barred, rip-roaring Christmas.  I stayed in a very swanky house with lots of family and friends, including all three of my sisters.  It was a bit of a Downtown Abbey experience (only we were all very good and no-one behaved like arch-bitch Lady Mary).  Just look at where we had our Christmas dinner. 

Yes, it's a wonky picture, but alcohol had been taken

At the risk of sounding as my dad used to say, as soppy as a sack load of bottoms, it was a truly lovely Christmas.  Also, I've now got ideas above my station and won't step outside the front door unless I'm wearing a tiara. 

We took the Christmas-cake-that-nearly-caused-a-divorce-in-the-making with us.  Amazingly most of it was eaten, probably due to the industrial quantities of sherry and brandy it contained.  When it came to cake decoration we decided to go with the true meaning of Christmas and had an Ice Road Truckers theme.  And here it is (another poor photo but you get the gist)

We are now taking orders for next Christmas.  Don't all rush at once.

Since Christmas, normality has returned.  I've come back to a dose of chemo with the usual temperature spike and trip to hospital the following day (New Years Eve).  All was OK and I was released after a thorough checking over, although I could've done without the four attempts to get a cannula in to administer IV antibiotics. 

I've also had a CT scan and am waiting three weeks for the results, which is as usual, scary, scary, scary.  

But for now I'm concentrating on lying on the sofa sniffling.  If anyone wants to buy shares in a tissue factory now's the time.

(Apologies if this blog post is displaying a variety of font sizes, I think my computer has the lurgy too).

Unreliable

Oh dear.  I had hoped to go to Birmingham today to have a mooch around the shops before they get too relentlessly busy but instead I'm taking a leaf out of the cat's book and lounging around on the sofa doing a lot of this

I'm not sure if today's lethargy is chemo related or due to me having a flu jab yesterday.  All I know is I'm not firing on all cylinders.  In reality, compared to what some people suffer on chemo, I'm having a pretty easy time of it on Eribulin (so far).  But it does make me tired and also sends my temperature a bit haywire at times.  As a result I've had to bail out of a few recent social events, which makes me grumpy.  I hate being an unreliable friend but when I'm tired and grumpy it's probably best for everyone if I go into hermit mode.  The good news is that I've got a week off chemo at Christmas time (I wrote a begging email to my oncologist and laid it on with a trowel) so I'm hoping to be full of beans for the festivities, especially as a big family getaway is planned.  All I can say is watch out Hampshire.  You have been warned.  

The other-half and I have risked divorce and done some cooking together in preparation.  You wouldn't believe the blood, sweat and tears (and booze) that have gone into this cake.

We've yet to ice and decorate the cake - so the story continues

Anyway, unreliable as I am, constantly failing to turn up to planned shindigs, I cannot compare with my paternal grandfather.  Sis no 3 has been doing lots of work on the family tree but until recently my grandad was a bit of a mystery.  

The last known picture of my grandad (picture from here)

He walked out on his wife and four children (including my dad) in the early 1920s and was never heard of again.  I had tried to give him the benefit of the doubt over this behaviour (which caused a lot of hardship to his wife and kids) but my sister has finally managed to find out what happened and it's not particularly edifying.  Apparently he ran off to Coventry, Coventry I ask you, (apologies to any Coventry bods reading this).  Other highlights of his life include

• Entering into a bigamous marriage and having another family
• Somehow getting his name on a war memorial in Cardiff as having been killed in action in 1918
• Claiming (and receiving)  the old age pension two years earlier than he should have
• Being convicted of bypassing the electricity meter in his house and thereby defrauding the electricity company

What a total ratbag.  The other-half is dismayed at what sort of family he has married into.  

To finish on a brighter note, the other-half's six year old godson was chatting to us the other day and informed us that he was going to be an indicator in the school play.  Much confusion followed.  Turns out he's playing the innkeeper.

Cheers and jeers

Well what an up and down couple of weeks it's been.

The biggest jeer should be reserved for Alistair Burt, a Conservative Health Minister, who scuppered the passing of a law which would have seen off-patent drugs (for conditions including cancer) made available to the National Health Service (NHS) at low prices.  Not only did Mr Burt filibuster the proposed legislation he also accused his opponents of "shroud waving".  Classy.  You can read more about it by clicking here or just take my word for it that the man is a total and utter shit.

The other crappy thing that happened was of a more personal nature.  I discovered a lump on my chest.  I only had a week or so to wait for the results of my recent CT scan so I knew I'd get answers fairly quickly but it certainly made the days approaching my oncology appointment even more stressful than usual.  Given the appearance of this lump I was convinced that my current chemo, Eribulin, wasn't working.  So imagine my surprise and delight when I was told that the cancer is currently stable.  The oncologist also had a good poke around my chest and said that she thought the lump was bone.  She's getting the radiologist to double check my scan but is fairly confident that the lump is nothing to worry about.  So the plan is now for me to continue on Eribulin and have another CT scan in January.  What a relief. 

Honestly, it was like the sun breaking through the cloud

There was more good news.  You may remember that a while back I was on a drug trial for a chemo called TDM1 (trade name Kadcyla).  This drug worked really well for me for 18 months with very limited side effects.  There has been a lot of hoo-ha about kadcyla due to its cost and there was a very real threat that it would be removed from the Cancer Drugs Fund (CDF) meaning that it wouldn't be available to NHS patients.  However, a decision has been made to keep kadcyla on the CDF. Hallelujah.

Also on the plus side I have been diverted by having all three sisters in the UK and plaguing spending time with me. 

And I've been a right old culture vulture.  On the day before seeing my oncologist I took my mind off things by leaving the sticks and heading to London to see the British Museum's exhibition on the Celts.  Then, just a few days later, I went to Birmingham Museum and Art Gallery to check out the pre-Raphaelites and the Staffordshire Hoard.  While I was in Birmingham I also took the opportunity to visit the new shopping centre but, you will be relieved to hear, I didn't let this sully my pure and academic soul.  Please ignore any malicious rumours that I had to be dragged away sobbing from the cashmere jumpers in John Lewis.

Talking of shopping, it's not long until Christmas you know.  Don't hate me.  I'm trying to help.  You could order some beautiful cards from Ebay.   All proceeds will go to Second Hope (the new and only UK charity specifically for people with metastatic breast cancer).  Go on, you know you want to.


 

Lyme time

So the October pinkfest (also known as Breast Cancer Awareness month)  is nearly at an end.  Hurrah.  Don't worry, I'm not about to burst into another mega-rant, but would just like to sum up my feelings with 

a) this picture (nicked from the excellent Sarcastic Boob's Facebook page) 

and b) this on the last person finally made aware of breast cancer, which made me smile.

OK, that's enough of that.  Let's move on.

I've been to the seaside.  Yes again.  This time I went to the Lyme Regis area for a few days.

 We had lots of lovely autumn sunshine so we mooched about in picturesque towns,

 

I resisted going inside as I'm currently operating a ruthless one in one out book policy

visited quaint villages and strolled on beaches.  As it was out-of-season it wasn't horribly busy. 

See what I mean?

 This part of England is known as the Jurassic Coast and there are, apparently, loads of fossils to be found.  Not by me there weren't.  Here's the other half searching, unsuccessfully, for pre-historic remains

He keeps telling people it doesn't matter that he didn't find anything as he already lives with an old fossil.  Oh how I laugh.  He also keeps getting confused and tells people we've been to Jurassic Park.  Idiot. 

Of course, there were cats around, some floppy and affectionate,

 others mildly irritated

Sadly we did find there to be a bit of a gang problem in Lyme Regis.  Here are some of the more intimidating characters

However, we managed to stay out of trouble.  Well that is if you a draw a veil over the evening I spilt red wine over a friend's white fabric sofa.  Oh the horror! (Although my friend was very gracious about it.)  The following day I also managed to get the contents of an egg mayonnaise sandwich up my jacket sleeve.  I shouldn't be allowed out.

Talking of trouble, no sooner had I come back from Dorset than I found myself in hospital for a CT scan.  Yep, it's scan time again.  I get the results next week.  The usual anxiety abounds.  Still I'm planning some diversionary activities including having all three sisters in the UK at once.  Let's get ready to rumble!

Pinktober

We’re only 4 days into October and already I want to go to bed, pull the covers over my head and stay there until November. 

Why the despair?  More fool you for asking.  It’s October or, as it’s known in breast cancer patient circles, Pinktober.  Its ‘official’ title is ‘Breast Cancer Awareness Month’.  Not a bad thing in itself I suppose, although I think everyone is aware of it by now and what we really  need is more research.  What really gets my goat is the stupid, inane and downright insulting crap that appears in the name of ‘awareness’ every sodding year.

This year in addition to the usual mindless pink fluffiness (Tickled Pink? yeah Asda what a brilliant name for a laugh-a-minute disease), we have the tremendously badly thought out and completely undignified ‘show your strap’ campaign from Marks and Spencers (google it if you’re interested, I’m buggered if I’m supplying a link to it).  And far, far worse is the ‘set the tatas free’ nonsense appearing all over Facebook.  To add insult to injury the ‘tatas’ thing doesn’t appear to be linked to any charity or to raise funds at all.  It’s just a tasteless bandwagon jumping meme. 

I won’t go on.  A mega rant is not an interesting read nor does it do my blood pressure any favours.  Anyway my pal Kath puts it a million times better than I ever could. 

Enjoy your October.  I'm off to stick my head in a bucket of lager until it's all over.

Second Hope

So here it is, the exciting news I've been hinting at (with all the delicacy of a drunken hippo) for the past few weeks.

Second Hope is a brand new charity that I'm absolutely chuffed about.  It's the only charity in the UK specifically for people with metastatic breast cancer (also known as advanced, secondary or Stage IV breast cancer).  It aims to raise awareness, provide support, campaign and also fund research.

Please have a look at the Second Hope website where there is loads of information including practical advice, more about the charity's aims, founder, trustees etc  (and even a little bit by me).  

I've mentioned time and again in this blog how isolated and hopeless a diagnosis of metastatic breast cancer can make people feel.  This charity is a real light in the darkness.  

Sadly the founder of Second Hope, Julie Phillips, died on Saturday, missing the launch of her brainchild by just a few days.  This heart-breaking news has rocked the online metastatic breast cancer group of which I'm a member, but we are united in our determination that Second Hope will go from strength to strength and be a lasting and fitting legacy for a remarkable woman.  

I cannot overstate how much the launch of this charity means to me.  Please, please take a look at the website, like the Facebook page and maybe even consider making a donation.

Thank you.

Making hay

So it seems that Eribulin (my latest chemo) is something of a mixed bag.  It frequently gives me high temperatures in the days after infusion which means me having to make trips to hospital to make sure my white blood count is OK and that there are no infections about to run rampant in my system.  The chemo also seems to give me headaches and make me feel a bit blergh, but on the week I don't have to have swamp juice (two weeks on, one week off) I feel pretty good.  I've just had one of those good weeks and so I made hay while the sun shone.

I've had a trip to Shugborough, an historic house about an hour away from home 

It was OK, but to be honest I've been to better stately homes - the whole Patrick Lichfield thing was a bit of a pain (he used to live there and they make a big deal of it).  Much as I love an historic house, I'm not really into royalty and their relatives (to put it mildly).  Anyway don't let me put you off if you fancy a trip there.  One huge plus point ... it's got a cat monument, no home should be without one.

A couple of days later we ventured out again to another historic house, well a castle actually, Powis Castle.  It's only about a half hour drive from home and I just can't believe we hadn't visited before because it's absolutely stunning.  I loved it.  Bear in mind we are well into Autumn now and it was still beautifully colourful, look:

Stunning views

Borders to salivate over

 

And I do love a lumpy hedge (the other-half included for scale)

Not bad eh?

There was, sadly, a distinct lack of monuments to cats.  However they did have dragons, and that's the next best thing

Then, to round the week off, we went to the seaside (West Wales).  The weather was glorious and I walked my legs off

 And also succumbed to a seaside selfie

Ah well, back to the swamp juice next week and, no doubt, a lot less gadding about and a lot more moaning.  

I won't know if this chemo is working until the end of October (having a CT scan in the middle of the month).  I have my doubts to be honest, as I'm still coughing like mad and have to stop for breath if I encounter even a slight slope never mind a hill.  The worrying thing is that I seem to be running out of chemo options (although there are a couple to try yet).  I may not yet be in the last-chance saloon but I do feel I'm clunking up the steps to the bar door getting ready to order my two fingers of red-eye.  Still, it's hard to differentiate between what the disease is doing and the side-effects of chemo, so I'll just have to wait and see. 

I haven't entirely lost my optimism though.  I'm going to attempt sewing again.  After the last dressmaking disaster I'd say that makes me incredibly stoic!  I am going to attempt a skirt with a button hole, zip and darts, so stand by for swearing.  I will report back with details of my amazing prowess as a seamstress, in the meantime admire the lovely second-hand fabric before I destroy it begin work.

At least something is coming up roses

Talking of stoic, the other-half has just assembled our new bed.  This has been something of a trial with an oily salesman, late delivery, missing parts and general grumpiness.  However, it is now done and we can now sleep easy.

To end on a positive note, I will have something very exciting to announce in the next couple of days.  I know I've tormented you with this before but the day is nearly nigh.  Stay tuned.

Pick 'n' mix

I've been a busy little beaver lately, so here are various bits and bobs I've been up to.  Do try to stay awake.

At the end of August I turned 54.  Yay me. I had a lovely birthday with a slightly  rabbity theme.  First of all there is bunny - pictured as the blog's header.  Bunny has been with me since I was three.  He is very tatty, a bit smelly and loved to distraction (indeed disintegration might be more accurate).  In the last couple of weeks bunny has been joined by:

The wooden bunny I got from the local  flower show

 

A bunny night light from a pal

And, from my sis, a hare from France who lives in the garden

These are all lovely.  Not so lovely is my hair (not hare - see what I did there).  This is me just a few days ago (with a slumped other-half) experiencing hysteria in Plymouth (more on that in a mo)
 

But this is me now

Yep, I'm a baldy bonce once more.  The swamp juice I'm on at the mo, Eribulin, causes hair loss in about 50% of patients.  I was hoping that I'd get away with it but over the weekend I started leaving a trail of peroxide tufts wherever I went, so I bit the bullet.  Thankfully one of Nev's sisters is a dab hand with clippers and she gave me a good shearing (just like she did three years ago).  I plan to spend the money I would have spent on bleach and hair cuts on scarves and hats instead.  A spending spree is a silver lining of a sort I suppose.  Oh well.


Plymouth.  The other half's uncle died recently.  Obviously this is very sad but he was well into his eighties, had a full life and was much loved.  Eighteen members of the other-half's family made the journey from the Midlands to the south west to pay their respects at his funeral.  We all stayed in the same hotel.  If I tell you that their was much running about in between bedrooms, scoffing of biscuits and general carrying on, including a telling off from a member of the hotel staff, I'm sure you'll get the picture.  The general consensus was that Nev's uncle would have totally approved of all the shenanigans.

We had a stroll around Plymouth 

where I was particularly impressed by a big fish

And yes, you are not mistaken, we had blue skies!

No sooner had we returned from Plymouth then we set off for a weekend in Yorkshire, visiting my aunt and cousins and, once again, seeing the sights.  We were treated like royalty and, if I had my way, I'd move in with my cousin tomorrow to be pampered ridiculously including being fed cake and wine at regular intervals.  And look, she has cats.  The incredibly handsome Jack

and Roger who has the life of riley but here is doing his best to look like he has a tough time of it with this paw to his fevered brow

While we were in Yorkshire we drove around the beautiful dales, taking in the Ribblehead Viaduct

 Grassington

Skipton Castle

East Riddlesden Hall
Where we got a special tour (courtesy of one of my cousins who's a guide there.  It's not what you know, it's who you know)

And before I bore you to tears with all my showing off about having been here, there and everywhere, here are some pictures of the Flower Pot Festival (yes you read that correctly) which was taking place in Settle 

And to bring things to a tidy end, let's end on a rabbity note with a flower pot bunny

I'm hopping off now.  See you later.