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.

Travels

Think of your own caption.  Words fail me.

Since I last posted I’ve been trekking to and from Manchester for further tests and, yay, treatment at the Christie.

Before I go on, I should point out that the above picture of the other-half does not show him in his driving to Manchester outfit.  Thank God.  This was what he chose to wear to a recent stag do when, instead of going to the seaside or rampaging drunkenly on the unfortunate streets of Dublin or Prague, the stag party chose to spend a weekend living in the woods, building shelters, fires and, more than likely, whittling their woggles to their hearts’ content.  I know. 

Anyway, the tests at the Christie came back OK and so last week I had my first dose of the trial chemo, SYD985.  No sooner had I had the chemo than I came down with the lurgy (a common or garden cold) so it’s very hard to say whether the resulting general grottiness and nosebleed were cold symptoms or chemo side effects.  I’m hoping for the former.  I was back at the Christie yesterday for a general check over and all seemed OK.  Of course it’s far too early to know if the chemo is working.  My breathlessness and coughing have continued so I’m just crossing all my digits and limbs and hoping for the best.

The one test that hasn’t been reported on yet is the lung biopsy.  This was to determine whether or not my cancer was still HER2+.  However, I was allowed to start the trial chemo without this result. 

Gawd the biopsy!  I know other people have had a lung biopsy with absolutely no problem, so if anyone has got one ahead of them please don’t panic.  However, I had bleeding right at the end of the procedure which meant I spent about ten minutes coughing up blood while still lying on the CT scanner bed.  Not an experience I’d care to repeat.  The radiologist patted me on the back and congratulated me on not being a “panicker”.  I can assure you that had I been able to leap up and run around the room, flapping my arms, shouting ‘I don’t like it’, I must definitely would have done so.  Anyway, the medical staff remained completely calm while all the yuckiness was going on and I was able to go home later that day.  So I don’t think my experience was particularly alarming medically just personally.  I had been warned that bleeding was a possibility only, being a bit dim, I had assumed the bleeding would be external not internal.  What can I tell you?  I only scraped a ‘C’ grade in ‘O’ level biology and now you can see why.

All the staff at the Christie have been a joy.  I have had mixed experiences of medical bods over the years but this mob, so far, have been nothing but lovely and, most importantly, very generous with tea.

While I’m being nice about medical bods I saw my hospice clinical nurse specialist the other day (the Shropshire equivalent of a Macmillan nurse).  She was incredibly helpful.  So moves are underway now for me to get a blue badge, disability living allowance (or PIP as it’s now called), and a rented stair lift.  Don’t get me wrong, I hate that all these things are necessary but the relief at being able to park in disabled bays (less walking) and not toiling up my steep stairs which render me breathless for ages overrides any regret at the state of my health.

While I’m talking about depressing stuff I’ve also started the process of formally recording how much intervention I want in end of life care.  It’s not a subject I’m particularly relishing but I’d much rather have my wishes recorded rather than have any argy-bargy further down the line.

Oh dear.  A bit of a grim post I’m afraid.  But that’s how it is at the moment.  If anyone cares to join me in digit crossing for the effectiveness of the chemo please feel free.  All welcome!

And, for no reason whatsoever, I’ll leave you with a photo I took a few weeks ago of a neighbourhood mog.  My cat fixation remains undimmed.