Captain Haddock

Captain Haddock (picture from here)

Oh dignity, the ways in which you chose to leave me are many and cruel.  My lovely steroids have caused me to grow a full on whiskery beard.  I look like Captain Haddock.  So over the weekend the other-half smeared my lower face with hair removing cream and shaved me with the horrible plastic spatula thing.  Who says romance is dead?

Yesterday we were out in the car and Nev kept looking over at me. Now given our circumstances I'd be a liar if I said we didn't have wobbly moments.  I was concerned this was going to be one of those times.  Or was he perhaps worried that my portable oxygen wasn't working properly?  Or checking that I wasn't tired?  'What's wrong?' I asked as gently as I could.  'In this light', he replied, 'I can see some whiskers on your face that I missed'.   

So anyway, I'm glad to say the getting out and about has continued on some days (other days I'm a bit too knackered but I'm certainly not stuck at home all the time).  Look here's a picture of the techni-colour park to prove I do get out.

I've also been out and about to less exciting places.  Like the sodding chemist.  A couple of blog posts back I said I was changing chemists and that the doctor's receptionist had sorted it all out for me and it would all be wine and roses.  Ha ha ha ha ha.  I've gone from the frying pan into the fire as far as customer service is concerned.  Trouble is, another thing the steroids have done is made my voice go all weebly.  So when I tried to tear a strip off the inefficient, surly pharmacy 'assistant' the fact that I sounded like a nanny goat on helium lessened the impact somewhat.

I saw the lovely hospice out reach nurse last week.  She's confirmed that I can continue on my current dose of steroids. I'm pleased as, so far, the plus of having more energy out weighs the hairiness, weebly voice, red face and saggy skin.  She's also arranging for me to see the hospice palliative care doc again, who is also brilliant. And said doc is going to try to put a bit of a rocket under my local onc to arrange the sodding scan I asked for three weeks ago.  Watch this space.

   

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!

Incommoded

Since I last posted I'm afraid the grot has continued.  The other-half valiantly tried to rally my spirits with his latest gift, but as you can imagine, needing a commode (daffs or no daffs) is a bit of a downer.

The commode, still in intermittent use, was a very necessary addition to the decor here at Discombobulated Towers when I experienced faecal impaction.  If you don't know what that is then you are blessed.  I'd describe it as super constipation with sodding great lumps on.  If you are weird, and want more details, then click here.  Suffice it to say, it made me feel horrendous and have even more loss of dignity at the hands of (lovely and very helpful) call out doctors.  I ended up spending two weeks bed bound, sleeping on towels and smelling like a cess pit.  Through all this the other-half has been a trooper.  He is now known at the Groom of the Stool.  

Thankfully a week ago I started feeling better and am now able, with help, oxygen, masses of time and trusty steroids, to get up dressed and downstairs most days.  But there has been a noticeable deterioration in my already shaky health from a few weeks ago.  

This was hammered home to me when I went to see the oncologist at Shrewsbury last week.  I feared strugglinng to get to the appointment but with my trusty wheelchair and portable oxygen it wasn't as bad as I thought.  Which is more than I can say for the appointment.  The oncologist was more serious and sad than I've ever seen her.  She told me that I was very poorly and that I cannot have further chemo as this would shorten my life rather than prolong it.  She did, however, start me on a hormonal treatment called Anastrozole.  I haven't had much luck with hormonals in the past, but I'm hardly going to turn down a booze up in the last chance saloon. The oncologist asked repeatedly if there was anything else I wanted to know.  I think she expected me to ask how long I had left to live.  I told her that I didn't want an expiry date.  Some people want an estimate (and that's all it can be) and some don't.  I don't think it would be helpful for me.  I've done my end  of life plan (about what sort of care/intervention I want) and have regular contact with my wonderful Palliative Care Doctor based at the hospice.  So other than that it's one day at a time.

Arriving at this whole turn of events is a bit of a mystery to me.  My last ten scans have shown no change in my cancer and yet now both my local hospital and  the Christie seem to think it's been growing but not detected by scans (they've scrapped the previous idea of chemo-induced pneumonitis when my breathing didn't improve after coming off the trial).  I have asked for another scan, although the oncologist wasn't keen due to the effort it involves for me, I haven't got a date for that yet.  Scans not showing anything?  So many too?  But I've been assured that they've been checked by several radiologists so I'm flummoxed.  Still the bottom line is my breathing isn't great, I'm on oxygen a lot of the time so obviously all is not well, no arguing with that.  I've just got to hold out hope that the anastrozole works magic.

So, grim news really.  But my day-to-day life is quite pleasant.  I'm being looked after brilliantly by family.  I'm watching a lot of Time Team (a very good thing in my book), playing online scrabble and drinking copious amounts of tea.  In other words I'm being treated like Lady Muck which, given my latest run in with the constipation demons, is quite a fitting name.

Rhubarb and custard

Rhubarb forcers at Attingham Park

Rhubarb, the devil's food, to:

• My sodding breathlessness which, after improving a little bit, seems to have stalled at bloody awful (unless I sit still)
• The arsey nurse at the Christie who wasn't happy about spending 5 nanoseconds to flush my port
• The jaw-droppingly racist taxi driver who took us from the Christie to Manchester Eye hospital earlier this week
• My long-term git of a chemist who excelled herself this week by thinking that being hospitalised and having stage IV cancer is no excuse for me not collecting my prescription on time

 A big bowl of thick steaming custard which is, of course, the food of the gods, to:

• The generous lady at the Maggie's Centre who shared her very posh chocolate biscuits with us, which restored our faith in human nature after the arsey nurse incident (see above)
• The helpful doctor's receptionist who painlessly sorted out changing chemist for me, so I never ever have to deal with gitface again
• Feeling well enough to get out last week, in the wheelchair of course, to Attingham Park where there were signs of spring

• And my own, admittedly slightly smaller, snowdrop display at Discombobulated Towers

Hey ho.  Life's rich tapestry eh?

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.

AWOL

I haven't posted for an age.  I'd like to tell you something scintillating, saying my absence is due to me gadding about with the jet set or my ongoing commitment to the NASA training programme.  But the truth of the matter is I've spent much of the past few weeks feeling like the the other-half looks

And as if feeling grotty wasn't bad enough, the above photo was taken during my last visit to the Christie and shows just how attentive and alert Nev can be during my appointments.

A short break in the whinging though, to tell you the good news.  I had scan results last week and amazingly, after eight cycles of the trial chemo SYD985, there has been a slight shrinkage in the cancer in my lungs.  I was staggered and, obviously, very pleased.   

I hope you made the most of that bit of good news because I'm about to start moaning again.  I do want to try to be honest here and not be some sort of happy clappy falsely cheery cancer blog, so here goes.

Even though I had good results the breathlessness has got worse and worse.  I'm fine if I sit still but any sort of movement makes me completely out of breath.  As you can imagine this makes doing anything, let alone getting out, really difficult.  It's not like I have a wild social life but even so I've lost count of the things I haven't attended due to breathlessness and fatigue.  Thankfully I did manage to get to a recent appointment with the Palliative Care Consultant at my local hospice, who is worth her weight in gold.  She could hear a deterioration in my breathing but thinks the problem might not be a result of the cancer (although it might be chemo damage).  She has referred me to my local hospital's respiratory bods.  I'm currently waiting for an appointment and I really cannot wait.  If there's anything that can be done to ease my poor lungs I'd be extremely grateful.  

Also, if truth be told, I'm pissed off with looking dreadful.  I've got thin hair, no eye lashes, hardly any eye brows and watery eyes.  My appetite has gone west and so I've lost weight and am looking extra haggard.  Ah cancer, the gift that keeps on giving.

In other news my Eddie Redmayne look-a-like doctor at the Christie is moving on to other  film roles research so I'll be seeing someone new in future.  It was nice to wave him off as he gave me good news (the cancer shrinkage).  He was also able to give good news to a fellow SYD985 patient (and pal) who'd seen a significant shrinkage after just two cycles.  So to any Secondary Breast Cancer bods reading, who are HER2 positive,  I'd say the SYD985 trial is well worth considering.

Meanwhile, in spite of everything, life goes on.  And I do appreciate it, honest.  Christmas preparations are underway. The festive twig is decorated and on display (we don't run to the extravagance of a tree at Discombobulated Towers),  Hot Fuzz is on the telly and, hurrah, it's very nearly present time.

I leave you with evidence (as if any were needed) that a three-legged monster cat and a cream sofa are not a good combination.

Happy Christmas.

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.
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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.