I love steroids

Since I last posted my health is pretty much the same.  The only exception being the wonder that is a reasonable dose of steroids.  My oncologist warned me that they could give me a false feeling of wellness.  But false is good enough for me.  It's better than lying poleaxed in my bed with zero energy.  I've yet to develop the puffy steroid face but my muscles have definitely been wasting (as warned) and all the skin on my arms and legs has turned wrinkly.  You win some you lose some.  You also buy expensive body lotion online and live in hope.

Although the steroids have helped massively with energy, my breathing problems remain the same.  So although I'm keen to do things, physically it's difficult.  The spirit is willing but the flesh is weak (and did I mention saggy).

Also, possibly steroid related, are my patience levels.  I have no time for what I consider to arsery of any sort.  So if you come round here be warned!   I make no apology for it, it's positively liberating. Light the fuse and stand back.

Meanwhile, of course, people have been lovely.  The mass ranks of the other-half's family did a 15 mile, very muddy, very hard sponsored walk to raise money for my local hospice.  What a bunch of good 'uns.  

The end of the walk and still standing (just)

My sisters have, as always, been troopers.  Baby sitting me, cooking, commode emptying and generally giving poor old Nev a break from me.

And as for the outpouring of messages, gifts and visits after my last blog post, well I was touched.  I'm afraid I didn't get around to taking photos of everything but thanks to everyone.  I luffs you all.  Here's a couple of pictures we received

Beautiful hand drawn artwork

 

Beautiful and very, very glittery artwork

And lest you worry that the three-legged monster cat got left out. Fear not.  Here is his  latest gift, a Bet Lynch style cat tunnel.
 

Tasteful

Despite the breathing problems I have been able to get out and about some days thanks to Nev, the wheelchair and portable oxygen. It can be a bit of a palaver but it's lovely to be outside, wheeling round the park in the sunshine.

 And even better is going down the pub in my posh new coat. 

Cheers!

In the wars

Remember the mystery (and huge) gnome that appeared in my garden last spring?  Well I'm afraid some recent windy weather has taken its toll.  And the gnome isn't the only one who's been through the wars lately.

I've been complaining about breathlessness for ages and it's got worse and worse.  I went to The Christie (the specialist hospital I've been attending in Manchester) a week ago for scan results.  The scan was good - no change, but the doc was not at all happy about my breathing and admitted me.

I spent a week in hospital with the poor other-half having to trek backwards and forwards to Manchester (a one hour forty minute drive each way on a good day) to visit me.  I have no complaints whatsoever about my care but, as I'm sure you know, hospital wards are not peaceful, restful places so it was all a bit of a strain.  Added to that I couldn't walk a step without becoming very breathless so commodes behind the bed curtains were the order of the day.  Necessary but not very dignified.

While all this was going on, the three-legged monster cat was safely at home.  Lounging on his special cushion, dignity intact.  Lucky blighter.

Lord Muck

During my stay the medical bods did a high resolution CT scan and still found no change in my lungs since May, so no obvious reason for the breathlessness.  

During some regular observations the nurse found that my heart was racing alarmingly. Within moments I was surrounded by medical staff and advised that it would be a good idea for Nev to return to the hospital even though he'd only just got back to the Midlands after visiting.  Two of his sisters kindly drove him back and he arrived in time to find that my heart rate had, thankfully, slowed.  

So the focus of attention moved to my heart. An echocardiogram revealed that there seemed to be some sort of pressure there so I was prescribed beta blockers and arrangements were made for me to have a cardio MRI in a hospital a few miles away from the Christie (cue a trip lying flat in an ambulance - but no nee-naws).  Before leaving the Christie I asked the medics to tell me straight what they thought the scan would reveal.  Their opinion was that it was likely that the cancer was pressing on my heart, in which case all treatment would cease.  I asked how long they thought I had but they were unable to say before seeing the scan results.  At this stage I had them draw the curtains around my bed and had a good blub.  

However, the cardio MRI revealed no problem with my heart.  This was good news obviously but it's pretty frustrating to be a medical mystery.  It felt like my life was turning into an episode of House.

So the next thing was to try steroids to ease the breathlessness.  This has worked to a small degree and finally, after a week in hospital, I was allowed to leave as long as I had oxygen at home.  I cannot bear to go into the frantic organising that went into ensuring that oxygen was installed on a Friday afternoon - but thankfully it was done.  Me stressed?  Never.  What a week!

Being back at home is wonderful.  I was absolutely exhausted so the peace, quiet and loveliness of my own bed, not to mention the total disdain of the cat, were blissful.

Yesterday I went back to Manchester again to see the docs. They have had conversations with the head honchos of the clinical trial I'm involved in and the consensus is that I have chemo-induced pneumonitis.  This means that I have to come off the trial.  On the one hand this is a bugger as it was working to control the cancer, but on the other that's not much use if I can't breathe.  The hope is that my breathing will improve as the chemo leaves my system and I've been prescribed a decreasing course of steroids to see me through.  

In a couple of weeks I will consult oncologists at both the Christie and my local hospital to see what, if anything can be done next.  There is at least one chemo I might be able to try but I have to be well enough to handle it.  Time will tell.  At the moment I'm just taking one day at a time and trying to put some weight back on.  At the risk of being totally shallow, as well as all the health palaver, I am not particularly enjoying rocking the scrawny-eyed wassock look.  Some fat, hair and eyelashes would be much appreciated.

At this point, at the risk of sounding like a tearful Oscar winner, I have to thank the other-half, his family, my wonderful (yes I did say that) sisters and friends for their concern, lovely messages and practical help during all this.  I even had fellow metastatic breast cancer pals from my online support group popping in to see me.  You're a lovely bunch you really are.  I appreciate everything even though I don't always show it.

Let's end on a brighter note and totally change the subject.  We have a new addition to the family.  Sis no 1 has adopted a second cat.  He's an elderly gent and doesn't do much other than enjoy being out of the shelter and in a warm, comfortable home.  But honestly, with looks like this, he really doesn't need to do anything.  Ladies and gentlemen I give you ..... Murphy.

No lack of fat, hair or eyelashes there.

Diversionary tactics

I haven't inflicted my burbling on you lot for ages.  Well your luck just ran out, I'm back.  I'm feeling twitchy, fearing that the scary orange git might actually win the American election.  So I'm trying some diversionary tactics which so far have included eating a bucketful of yummy shepherd's pie and tidying my underwear drawer.  Now I'm resorting to writing a blog post. Sorry.

Cyril gives the seal of approval to my underwear sorting

I had scan results last week.  The disease is unchanged.  Cue, yet again, surprise and relief.  As side effects go my eyes seem to be taking a hammering.  This is a known side effect of the trial chemo, SYD985, and can lead to having a chemo break or having to come off the treatment altogether.  I have regular eye examinations so we'll see what happens after the next one later this month.  I also seem to have some nerve damage, peripheral neuropathy, which isn't a known symptom for this particular chemo and caused the onc to get all excited. He prescribed a painkiller tailored to nerve damage.  I've adjusted to the painkiller now, and indeed it seems to be doing the job, but the first time I took it I felt like I taken a horse tranquiliser, then I spent a day being inordinately happy.  Normal service is now resumed.

The breathlessness, which I've been moaning about since forever, continues.  So yesterday I had another scan, an angiography, looking for blood clots in my lungs.  I should get the results in the next couple of days.
 .
The slow hair loss persists.  I found a really lovely wig place in the seething metropolis that is Much Wenlock.   I realise that this is going to be local to just about nobody other than me, but if you are in the area and in need of some extra hair then you could do much worse than going to see Nicky, who really knows her onions (and wigs).  I went with the other-half.  I tried on heaps of wigs and some of them looked truly dreadful on me.  The highlight was when he pointed out that I looked like one of the blokes out of Buck's Fizz in one of the wigs.  Even the very professional Nicky couldn't help doubling up at that one.  Anyway in the end I settled on this (the frown lines were caused by the trauma of taking a selfie):

I could've done with the wig the other day when we went out on another wheelchair excursion, this time to our regular stomping ground, Attingham Park.  I learned two valuable lessons on this trip.  1)  Being wheeled around is flipping freezing, wear twice as many clothes as you think you're going to need, and a wig.  2)  On no account set off on a wheelchair perambulation thinking to yourself, as I did, "Oh I think I need a wee, but it'll be OK I'll leave it till I get back".  Oh boy.  Half an hour of being jolted about on uneven paths played havoc with  my bladder.  By the time we got back to the main buildings I didn't know what to do with myself. I leapt out of the wheelchair and sprinted up the path to the public loos.  Passers by must've thought I had a miracle cure.  On the plus side it was nice to get out and there was still colour in the walled garden despite the onset of autumn/winter.

 

While the other-half has been lovely, escorting me to numerous medical appointments and wheeling me about in my unwinged chariot, he has also been a major pain in the arse.

Exhibit one

 
Here he is panicking in a clothes shop (Fat Face for the eagle eyed amongst you) when he tried a gilet on and got stuck in it when the zip jammed.  Readers, he ended up buying it, I kid you not.

Exhibit two

 
Here's Nev having a bit of a tantrum.  He decided to sort out the kitchen cupboards where, unsurprisingly, half the stuff was out-of-date.  "I hate waste" he cried and generally grumped about the place for a good half hour.  Boo hoo hoo.

Then there are the Nevisms.  In the past he has uttered such classics as "that rabbit is memorised" (when he meant mesmerised) and "Is the Pope Jewish?", er no.  Yesterday he excelled himself.  We were heading off to the hospital for my scan.  He asked me which department we had to go to.  "Is it where you had your autopsy?" he asked.  Cheers Nev.  That's a happy thought.  (He meant biopsy by the way.  Idiot.)

Other family members have also been looking after me a treat.  My sisters are running a meals on wheels service to beat all others.  It's spaghetti bolognaise tomorrow night.  Mitts off, it's all mine.

Nearly all my hospital appointments now take place in Manchester (since being referred to the Christie by my local hospital).  This is, in many ways, a good thing.  It's great to get treatment at a centre of excellence.  However, it is a bit of a trek, one hour forty minutes each way.  I shouldn't moan really as many people travel much further.  Anyway, on our last couple of visits, with time to kill between appointments we've popped into the Maggie's Centre near the hospital.  Maggie's Centres are places offering all sorts of support to people with cancer (and their families etc) in an non-hospital enviroment - more info here.  We went in just to have a cup of coffee and what a lovely surprise it was.  I took a couple of photos which give an idea what it's like

 

If I tell you that the building was designed by Norman Foster you'll understand that my photos don't do it justice.  You can get a better idea of it by looking at the Manchester Maggie's website.  If you're in the UK there's also a TV programme on Maggie's called Building Hope (which is available for a few weeks).  I haven't seen it myself yet but it might well be worth a look.

Finally, I'd be putting a massive and false cheery spin on things if I was to pretend that everything is rosy-ish.  As I've mentioned before I'm a member of an online support group for people with secondary breast cancer.  This group is hugely important to me.  Recently we had five deaths in just three days.  This is, of course, the nature of the disease, killing as it does approximately 1,200 people in the UK every month.  All untimely deaths are tragedies and losing people you've built bonds with, both online and in person, is hard.  It's also a reminder of where this disease ultimately leads for all of us.  There's not a lot more to say other than to link to Second Hope, the secondary breast cancer charity which meant so much to the women we recently lost.

More of the same

For the last umpteen posts I have been complaining about breathlessness.  This post is not going to be any different.  In fact the problem has become quite a lot worse.  I'm OK if I remain seated but as soon as I do anything, even take a few steps, I become breathless.  This has resulted in a new installation at Discombobulated Towers.

Going up in the world, or possibly down

At first I wasn't too impressed at having a big beige plastic monstrosity in my house, but to be honest I don't know where I'd be without it.  For anyone pondering about having a stair lift I'd say go ahead, don't delay, it's a godsend.  It also has its amusing side if, like me, you happen to have a sister (no 1) who has a vertigo attack while trying it out.

While the breathlessness is hateful/frightening/depressing/a sodding pain in the arse, the enforced inactivity has given me an opportunity to torment the other-half.  He has to do everything now.  I have no puff for housework, cooking, de-fleaing the cat etc.  I've never seen someone with ironing rage before.  Apparently the way I chuck my clothes into the washing machine is a disgrace; tights all bundled up in a knot, jeans with one leg inside out, tops buttoned up etc.  What a wuss.  You wait until he experiences the delight that is finding a handful of tissues have been left in a pocket when he empties the washing machine.   I think he will truly blow a gasket.

No, don't go feeling sorry for him.  Look, here I am angelically smiling through chemo

And what do you think Nev was doing while this was going on?  Soothing my not particularly fevered brow? Feeding me chocolate?  Regaling me with amusing anecdotes?  Nope.  He snored through the whole thing.  Here's the proof.

Sleeping beauty

When it comes to chemo and blood tests and anything involving a needle my veins have finally waved the white flag.  So a couple of weeks ago I had a port implanted.  This has seen an end to the endless arm stabbing in a effort to try to find a co-operative vein but, to be honest, it's not as discreet as I'd hoped.  You can clearly see the port and some of the tube under my skin - it's a bit icky.  Hey ho.  Having it fitted was quite exciting.  It's done under local anaesthetic.  Imagine how thrilled I was when halfway through the procedure the fire alarm went off and the nurse announced "I don't think that's a test run".  We were on the ground floor and couldn't smell smoke so the nurse valiantly carried on and, thankfully, after a couple of minutes the alarm stopped.

I've been doing lots of traveling to the Christie (the hospital in Manchester where I'm currently on a trial chemo).  I've now had two cycles of the new swamp juice but, given the breathlessness, I really don't see how it can be working.  I'm having a CT scan on Monday so I will find out more shortly.  I suspect they will find more cancer in my lungs. Scary.  At least I don't seem to be having any other side-effects other than some fatigue.  So at the moment I am in limbo and feeling as cheesed off as Cyril (the three-legged monster cat) looks.

On the plus side I have been reading my head off.  My kindle is red hot.  And, although I can't really get out and about, as walking even short distances is difficult, I'm able to ride shotgun as Nev takes me out in the Shropshire countryside.  We drove over the Long Mynd the other day.  And I spotted something in keeping with the tone of this post - the Shropshire Sheep of Doom

And on that cheery note I'll say baa-baa for now.

Waiting game

Picture from here

It's anxious waiting time at Discombobulated Towers.  I've had some of the tests at The Christie to see if I'll be able to get on to a clinical trial and so far, so good. However, I will be going back twice next week for three more tests, so it's not over yet by a long chalk.  

In the event of all being well, my first dose of the trial chemo is scheduled for 29th June, and frankly it can't come a moment too soon.  I've not had any treatment at all for about three weeks now (this is a requirement for getting on the trial) and the deterioration in my health has been pretty marked.  Added to the worsening coughing and breathlessness are pains in my back and the type of fatigue that has me wondering, in my darker moments, how I'm going to cope with the trips to Manchester or even if I'm going to be well enough to start chemo.  There is a temptation to go back to my local hospital and say give me some chemo NOW!  However, this isn't a wise option.  The local oncologist has told me that neither of my two remaining chemo options are likely to be of much benefit to me (in fact the last option has only an 8-10% chance of working).  So I'm hanging on, waiting and hoping for the clinical trial at The Christie.

I do have lighter moments though.  These include:

• Seeing the Eddie Redmayne lookalike onc once more at the Christie and being reassured by how positive he is about the trial
• Spending time with sisters 1, 2 and 3.  *Highlights include; discovering sis no 1 patrolling the garden at dusk, killing slugs while chanting 'double, double, toil and trouble'; sis no 2 and I buying identical handbags and walking around the local open gardens event like two Fashion Girls; introducing sis no 3 to The Sewing Bee and hearing her talk enthusiastically about pvc.
• Watching fluffy TV, like Love, Nina
• Watching bonkers TV, like Versailles 
• Getting Germany in the other-half's family Euro 2016 sweep stake.  Rest assured, I will not let any winnings change me.

*  I have absolutely no confidence in my ability to use semi-colons correctly.  I usually avoid them but today decided to throw caution to the wind (that's the kind of wild devil-may-care person I am).  Feel free to take me to task if I have played fast and loose with this punctuation mine-field.

Stabby

Which one is best?  Helpful clue: I made the brown one

Despite the indisputable evidence that I'm rubbish at all forms of craft (remember the dress that didn't fit and my foray into crochet?), I recklessly bought a felting kit from a lovely shop in Bishops Castle.  The kit sat ignored for months and months in the land that time forgot, otherwise known as the cupboard under the stairs.  Then motivation arrived, in the scary shape of sis no 3, and hey presto I give you two felted cats.  I didn't have a clue what felting involved before I started.  The kit basically contained wool and some scarily sharp needles with which to repeatedly stab the yarn.  It was unreassuring to say the least to find that the kit also included a plaster (or band aid for any American readers) for any needle related mishaps.  Thankfully I didn't need the plaster but then I was already feeling pretty stabby due to an eye test a few days earlier.

During a routine examination the optometrist spotted that I have one pupil bigger than the other.  This is not a good sign.  In fact, according to my consultation with Dr Google it means instant death.  I informed my oncology team who gave me the once over and then sent me for urgent CT and MRI brain scans.  The most common places for breast cancer to spread are liver, lungs (got the t shirt for those two), bones and brain.  So it was a scary wait for results. Luckily for me the scans were clear.  I still have to see a ophthalmologist but I'm feeling pretty relieved for the time being at least.

I've had lots of CT scans but the MRI was a new experience.  It was nowhere near as claustrophobic as I feared but it was just as noisy as everyone says it is.  To mask the clanging and banging I was given headphones to wear during the scan.  But I wasn't impressed the music selection pumped into my ears.  Given that they were looking for a brain tumour I think the first song 'Crazy' was a bit of a poor choice, then as the machine rattled and whirred I had 'Good Vibrations' piped through.  Do you think they were taking the piss?  I tried to give the radiographer one of my hard stares (via the mirror contraption above my head in the machine) but he was unabashed.  Git.

If the whole pupil thing wasn't worrying enough I also developed another very frightening symptom.  I've had a couple of sudden attacks of not being able to breathe.  During the attacks I can't speak and make horrible gasping noises.  The second attack happened when I was out for Sunday dinner with the other-half and two of my sisters.  It's not a subtle attack and my poor family didn't know if I was choking on food, going to throw up or what was going on.  I staggered outside and after a few minutes my breathing gradually returned to normal.  Thankfully my GP is sure this is a harmless spasm of the larynx.  It hasn't happened since and I'm not putting my name down for it again.  I don't recommend the experience.

I think I love my GP as not only did he calm my fevered brow over the breathing thing he also completed the form I had from the government querying my right to receive state benefit.  I'm waiting for the official response from the powers-that-be but am hoping the GP's input will make them wave the white flag, the bastards.

On a happier (but no saner) note a few days ago the other-half and I got up at the crack of dawn on a frosty morning to go hare spotting.  We did see a couple leaping about but they were too far away for a photo.  But just to prove that I was out and about bright and early on a very cold morning:

Now here's hoping for warmer weather and a happy, peaceful Easter for everyone.