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.

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.