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.

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.

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.

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.

 

Head in hands

Bugger, bugger, bugger.  My latest CT scan has revealed that the cancer in my lungs is growing.  This means I stop the current chemo and move on to a new (to me) swamp juice, Eribulin, next week.  Hey ho.  To console myself, since returning home from the hospital, I've had a glass of sherry, a custard tart and a snickers bar.  Now to add insult to injury I'm feeling a bit sick.  I wonder why.

Doom, gloom and killer cattle

Picture from here

I warn you now, I am in a bad mood.  I was awoken at 3.45am by the claws of Cyril (the three-legged monster cat) who decided he'd quite like his breakfast served early this morning.  I have not been able to get back to sleep since, which is more than I can say for the bloody cat, who is now snoring at the foot of the bed with a full tummy.  Yes, I know I have created a rod for my own back.

While lying here wide awake I've been mulling.  Never a good idea.  Here are some edited highlights of my disgruntlment (and if that isn't a word it should be):

• The National Institute for Health and Care Excellence (NICE) deciding not to approve access to TDM1 (Kadcyla) via the National Health Service (NHS) in England and Wales, and the price the drug company is charging for this treatment.  TDM1 is the chemo that has worked well for me for nearly a year and a half (luckily for me I managed to get treatment via a drug trial). 
• Jenni Bloody Murray's pontification on TDM1.  Yes, I am still angry about that.  I know I should let it go for my own sanity, but Ms Muray setting herself up as someone who knows the score because she has had primary breast cancer is much like me saying that because I have a cat I'm the world's expert on parenting.  No insult intended to people with primary breast cancer - it's vile, scary and altogether horrible but not in the same league as being told the cancer has spread and will definitley kill you (the joy that is secondary breast cancer).
• The mealy mouthed response I got from a charity, Breast Cancer Campaign, in response to my query as to why, given her views, Jenni Murray was still listed as one of their celebrity supporters.
• People in Scotland being denied access to TDM1.
• The Haven, who I found so helpful a while back, issuing an annual newsletter which didn't mention secondary breast cancer a single, solitary time, and the Haven's mealy mouthed response when I pointed this out.  This is yet another example of the endless sidelining of people with secondary breast cancer.

And now I've got a new message of doom.  Although people with cancer in England and Wales have been denied TDMI (and other treatments) through the NHS, we have been able to access these treaments through the Cancer Drug Fund (CDF).  Or at least we can at the moment.  The NHS has decided to open a consultation on changes to the CDF which means it will take the cost of treatment into account in the future (something it hasn't done before).  Call my cynical but aren't consultations by government bodies usually just an exercise in asking people what they think and then going ahead and doing what they planned anyway?  If my worst fears are realised many life prolonging drugs will no longer be available to those unable to pay for them privately.  The consultation ends at the end of this month and I urge you to have a look and complete the survey if you can bear to.

So there you have it.  The cat woke me early and I've been lying here fuming and decided to share it all with you, you lucky, lucky bunnies.

I then went on to consider that, had I not had the good fortune to be born in a country with good health care, I'd no doubt be dead and buried by now.  Which in turn led on to thinking about the dreadful hardship endured by so many people in the world, like 748 million people not having access to safe drinking water and the state of the world itself with all the horrors of war, pestillence and climate change.

It's enough to want to make me stay in bed for the rest of the day with a bottle of sherry and a family pack of custard tarts.  All in all that cat has got a lot to answer for.

I can't even blame my mood on the onset of winter.  I like winter.  I like snuggly winter clothes, sitting by the log burner and my latest knitting project, an incredibly (and unintenionally) wonky scarf.  OK, by February I've usually had enough of cold, driving rain and dark nights but up till then I embrace the gloom.  By the way here's some top notch and enjoyable research on seasonal affective disorder from the Daily Mash. 

Having moaned for several million paragraphs I should point out that, on a personal level, I'm having quite a jolly time.  Maybe, in the spirit of fairness I should list the good stuff too:

• I am now on a different bone strengthening medication.  This one seems to have no side effects (unlike the last one which was yucky), so hurrah for that.  
• I've had the full compliment of sisters (nos 1, 2 AND 3) in the UK recently.  Which was lovely.  Sort of.
• Started a brilliant mindfulness course (mock me at your peril).
• Some good friends have recently raised over 1000 pounds for the excellent Breakthrough Breast Cancer.  They did this by forgoing anniversary presents and, shudder, running a half-marathon.  Many, many thanks to them.  My cockles are warmed.
• I've been out and about enjoying the autumnal sunshine.

The being out and about included walking up a sodding big hill.  The intention was to walk around the bottom of the hill rather than climb it, but the lower footpath was blocked by scary hairy cows (see picture at start of this post) so I took the high road.  Once I reached the top (and stopped sobbing) the views were fantastic.

A

And finally, here's a picture of me ascending the steep slope.  I'd like to tell you I was being brave but actually at this stage I was too out of breath to cry.

  Onwards and upwards.

Me again

Just a short note to pester you with the fact that my latest burblings for Vita (an online magazine for the Breast Cancer Care charity) can be read here. 

Not the cheeriest of reads so here, have a free photo of Cyril, the three-legged monster cat, to be going on with:

Now, if you'll excuse me I've got things to do.  I want to finish this excellent book before this excellent film comes on in an hours time.  It's all go go go.

Wildness in Wales

I've been rushing around like a long dog of late, having a fine old time with barely a chance to wash behind my ears let alone put fingers to keyboard.

Firstly, I headed down south to see my new great nephew who weighed in at walloping 10lbs at birth and, at three months, is a beautiful big chappie.  

I also saw some old friends, had a good laugh and stuffed my face with lovely grub.  I spent some time in Ware as part of my travels.  It's my kind of town with cat statues,

helpful red arrow as I know some of you are a bit slow

excellent (albeit disused) cat flaps,  

and even tombs with paws

Then, no sooner had I returned to Shrewsbury than we set off for a few days in Pembrokeshire.

We'd arranged to stay in a tiny and remote cottage with no TV or mobile signal, thinking we'd have a beautifully peaceful time.  As the holiday approached we realised, with some horror, that this meant we might actually have to talk to each other.  Thankfully, as you'll see from the pictures, we were able to survive this trial with the help of red wine 

Compact but cosy

Red wine saves the day (yes, those are the other-half's legs)

View from front door

The cottage was set in 6 acres of stunning (even in November) gardens

I have got a zillion more photos like this but if you'd like to see more about the house and garden the best place to go is the official website Dyffryn Fernant. 

While we were in Pembrokeshire we went to the small but pictureseque city of St David's.  It being November we almost had the place to ourselves, in fact we did have the old ruined and atmospheric Bishops Palace entirely to ourselves

 

As we walked around, despite being the sole visiors, we sometimes got the impression we were being watched

Lest you think this was a very staid and boring visit let me assure you it was danger packed with tall towers to climb 

sometimes I preferred to remain on terra firma

and every manner of peril, as the signage made all too clear

See I know how to live on the edge, I do

My favourite is the sign on the bottom left.  I think it's meant to warn people of the danger of bumping their heads but, to me, looks more like someone realising they've locked themselves out or left the bath running.

The danger theme continued into the following day when we went for a walk.  First the good news, I was able to walk much further and higher than I thought I could (in early summer I could barely walk 400 yards without puffing for breath, thanks to the cancer in my lungs).  While I was hardly mountain goat-like in Wales I was able to walk a good four miles and take on some steepish inclines, albeit slowly.

me, striding manfully upwards

We'd walked uphill from the pink building.  You may now gasp in admiration.

However, it would be remiss of me to claim that I didn't have some help in getting to the top of the hill. As we neared the top we saw several horses around the rocky outcrop including a foal.  We didn't go near the horses but just skirted around the edge.  This didn't stop Devil Horse from trying to kill me though.  A huge black horse came snorting towards me with murder in his eyes and evil in his heart.  

Here he is.  Have you ever seen anything more scary?  The stuff of nightmares

I walked away as briskly as possible, wishing there was a tree to climb, but could hear his horrible hooves and nasty snorty horse breath getting closer and closer.  The other-half turned looked at him and said, with some feeling, "that is NOT a nice horse".  Apparently he was also doing the kicky thing with his back legs too.  We managed to scramble over a fence and up, up and away from the mad, demented beastie.  When we were a safe distance away we turned and waggled our bottoms and then stuck our fingers up at the horse, not wanting to let him have the last snort.  The horse gods in the sky must have been watching us though as from then on the foot path signs disappeared and we ended up going on a much longer walk than intended and, for the last half hour, in a substantial downpour.  But what did I care, for I had escaped from the jaws (and hooves) of doom.

The rest of the stay was calm, tranquil and horse-free.  Even though I got heaps of exercise I suspect I put on lots of weight as I ate like a (shudder) horse.  And here's the proof, do you think my bum looks big in this?

 

A quick health update before I go.  I've been continuing with the TDM1 chemo trial and all seems to be going OK.  I have yucky scans at the end of the month and see the oncologist for the results in the middle of December by which time I will be almost as anxious as if I were being chased by a homicidal horse, but for now I'm trotting along not thinking about it too much, which works for me.

Oh, and just when you thought I'd finished, a final cheery note.  Two days ago I became a great aunty yet again.  Congratulations to all concerned.  The dynasty continues!

Snoozing on the sofa

I'm back home, being pampered by the other-half, getting meals on wheels from sis no 1 and more cards, phone calls and flowers than I deserve:

Lovely, lovely, lovely.  Thank you, thank you, thank you!

I had a couple of fantastic handmade cards, one of which was covered in glitter.  The other day Cyril (three-legged monster cat) brushed against the card and was immediately coated in spangles.  Then he went outside to hang out with his rufty-tufty mog-mates.  I was worried that he'd get beaten up for being so flamboyant, but he strutted home (as best a three-legged cat can strut) in fine fettle.  I think perhaps he is a fashion-leader, so now I expect to see the other neighbourhood cats sporting glitter encrusted coats too.  It's the new spring look.

Anyway, I'm home from hospital and and am now officially an amazon.  Admittedly I'm a bit of a delicate amazon at the moment but I'm on the mend and making the most of sofa time before a truck load of hospital appointments next week.

I'll be pestering you again shortly but thought I'd let you know that as I drifted in and out of sleep after returning from the operating theatre (where I'd just lost* a breast) I could hear the other-half droning on and on to the nurse about his backache.  No-one suffers like he does.

*OK, seeing as the departed breast contained the malevolent cocktail sausage of doom perhaps 'lost' isn't the right word.

The telephone call of tranquility

If you read yesterday’s account of my trip to the GP (and if not, why not? Don’t you realise that the world revolves around ME?) you’ll know that the consultation didn’t leave me entirely happy. Yes, yes, I got the drugs, but the GP’s demeanour added to my already sky-high anxiety levels, leaving me chewing the carpet, bouncing off the walls and leading the other-half to consider ordering a straight-jacket.

So it was an absolute godsend, later on last night, to speak by ‘phone to someone I’ve ‘met’ on an on-line forum for people with breast cancer. Now I know that ‘meeting’ people on-line has a very bad press. I can’t think why. I’m sure the Nigerian prince I sent a small fortune to a couple of years ago will come good in the end with the promised $1,000,000. But cynicism aside (and yes it is me saying that) last night’s conversation was a lifeline. The woman I spoke to also has secondary breast cancer, has had chemo and is coping extremely well with her very busy life (full-time demanding job, husband, kids, dogs – you know - life). I can’t think of a smart-arse way to finish this paragraph – so I’ll leave it with my sincere thanks to the woman I spoke to who was, quite simply, fantastic in my hour of need.

Today was simply a giddy social whirl, my darlings! I am now a lady who lunches. Firstly we met up with tip-top chums (who patiently listened to me whinge although I'm sure they wanted to set about me with a rancid halibut) and went out for lunch to The Royal Oak, Cardington. God, the portions were huge - and delicious. I'd like to type something snarky (that being my way) but it was lovely.

In the evening we met up with Sister No 1 (back from her extensive hols). It was good to see her but even more so when I realised she was clutching a bottle of duty-free sherry. Then we all trecked off to Sister No 2 for another yummy dinner. The other half and I may now never need to eat again. Wafer thin mint anyone?