Monthly Archives: November 2014

Make do and mend

It may be unorthodox (but when has that ever been a deterrent?) but when your wisteria drops all its leaves overnight  (well…not all its leaves – half of them, so inevitably a two-staged job. God forbid they should all conveniently drop at the same moment – but nature doesn’t seem to do that) – then sweeping up is not an option. I got out the Dyson and…what do you know – it doesn’t irritatingly blow leaves around the “hood” but sucks them up – cleanly and efficiently, to enable dumping into the “brown” recycling bin as the container fills up…Result! I was (very briefly) embarrassed by the fact that someone might catch me doing outside vacuum cleaning but hey….I have suffered worse indignities in recent months.

My home maintenance situation remains somewhat compromised – a plug socket has come out of the wall – but I find I have no screwdriver to fix it….so no vacuuming in that area! Ceiling light bulbs keep blowing but I have neither the height, the suction nor the ability to replace them…What’s a girl to do? Do I have to invest in a tool-kit? Really? I wouldn’t even know what I “needed”.  Also a tool-kit feels rather close to the ignominy of owning a sewing box….I needed the tool that makes holes in things (another hole in handbag strap was required) the other day. This tool, for which I don’t know the name, used to lurk in the cupboard, but it’s gone….so I made do with a pair of not very sharp scissors…it wasn’t pretty…

More herceptin treatment on Monday – usually this is done in what is now the unlit room…will have to hope that the nurse comes in daylight…She is supposed to confirm arrival time for Monday on a Friday afternoon but as afternoon lurches into evening the phone remains silent…Hey ho…

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Dog-ends

Still struggling with the spoken word so I am relieved that I can still write things down…but maybe too much time to think….

I think about this time last year, late November/early December…I had thought I’d been having a lovely holiday in Devon (a brief break from chemo) with close friends. How hoodwinked was I (and the other two) by one of those “friends” who was furtively stabbing me in the back, day by day, week by week, month by month?

I looked back at old photos today of a birthday party…there “she” was – animated, sparkling and vibrant – full of the joys of filching my husband from right under my nose…and parading it like a cheerleader under my unsuspecting eyes.

I think of my wedding anniversary, the flowers, the thinking that we were heading towards our 25 years and exotic holidays/good times when I was past chemo…How stupid was I? I thought we were together forever – good/bad/well/unwell…I had pledged my troth and so had he.

What callous and cruel people I was laying my trust, hopes and fears in. All the time I was being lied to, cheated on, betrayed whilst I lost my health, my hair and my life as was…They took it from me piece by careful piece…lie after lie..after lie…How can anyone ever recover from this? I think about it all … every scene replayed in slow motion, popping through the fog of what I thought was happening compared to what was actually happening….Memory after memory unpicked and re-formed…I have battalions of them constantly lining up and assaulting me at every turn.

I just don’t understand, even now, how it could have happened…how two people so dear to me could just ditch me, so resolutely, and make every effort to destroy me because they “fancied” each other, and because they could, as I was too sick to notice…I had hoped that maturity would teach you that there are many more important things in life than just following your own selfish, vindictive and adolescent ends – honesty, integrity, friendship, shared lives, reliability, responsibility for starters let alone any of those marriage vows…

As we finally lurch toward the dog-end of the year I try to contemplate my dog-end of a life and a future….

 

 

Laryngitis?

It seems that I have laryngitis…or at least I seem to have all the symptoms of laryngitis…

  • No voice which alternates with hoarse voice then returning to no voice
  • A constant need to clear my throat but nothing happens, no frog…no voice…
  • And now I am developing a sore and swollen throat to boot

This is day 5 and I have had enough!

A few days of quiet was, I’m sure, a blessing for everyone but now the phone calls I have been putting off grow more urgent and I am finding it ever more difficult to keep repeating myself because people can’t hear what I am trying to say…Talking to myself/the cats/the telly is, as you might guess, the overwhelming issue let alone trying to manage a hospital/doctor appointment or even ringing to change them!

I blame the healthy living – eating from organic veg boxes, going to the gym, getting more sleep etc…It’s obviously not good for me. I daydream of the warmth of the Caribbean with a rum punch in my hand – that has to be the cure-all…even though the insurers continue to  say no…

 

Out of the shadows

As ever it is two steps forward, one step back but, after last week’s good scan results, I am starting to feel that I can…maybe…gain some momentum. My bruised coccyx is somewhat limiting the speed of this…However this is only a problem when getting up from seated or lying down, or trying to do sit-ups so maybe I just need to do less of all of that! My head “bump” also seems to be sorting itself out and scabbing over – fortunately now covered by a profusion of dark but curly hair…I am a very different person both on the outside and the inside.

And…no medical appointments this week. This is the first time I can remember this happening so that must be a good thing.

So a chance to sit back and think where my life (however long) goes from here. I am still pulling out the embedded thorns in my side (and in my heart) and still lose sleep as I turn over and over on them, but I am finally getting some sleep now.   Glory be to the right dose of the right anti-depressants!

It is a common enough premise that cancer changes you and for everyone it must be different. Last week I caught the end of an item on Woman’s Hour about a new book by Marian Keyes called “The Woman Who Stole My Life” – apparently it’s humorous…but, despite its title, which rings so many bells, it is not a parallel to my past year’s experience of what happened when I got cancer! I have not progressed so far as to see any humour in my situation at all but I have begun to find some smouldering resilience.

 

 

Black and blue and brain scan too!

As I discharged myself from A&E on Sunday morning, there was no follow-up arranged so have had to piece things together myself…

Yesterday I had a full-on day with Oncology consultant, GP and MRI scanner. There was a suspicion that my loss of consciousness on Saturday night might have been caused by the cancer having spread to my brain. If this was the case it was seriously bad news so we had to “investigate” which meant an urgent brain scan. My very caring and concerned consultant managed to get me an appointment for later in the day and she said she would come and give me the results straight afterwards. Meantime my CT scans – done a week or so ago, were good. Herceptin is doing its stuff and keeping the cancer at bay (at least below my neck!)

Whilst feeling fairly confident that my cancer hadn’t spread – it was an odd day wondering if I was “OK” (it’s all relative) or whether I was going to receive a 6 months or less prognosis before bedtime….Bizarrely the friend who accompanied me all day and ferried me about (back and forth to the various appointments) was far more concerned and edgy than I was. Instead, I was worrying about the contradictory messages I was getting on my phone about today’s Herceptin treatment (delayed from Monday).

Late afternoon I was back at the hospital again, another cannula in and into the “head restraint” for my brain scan. Why is it that they give you earplugs to put in and only then tell you stuff about the procedure? I just zoned out as the loud noises rang out around me, beeps, mini-explosions, drilling, foghorns…I heard it all! Then sat and waited…

Bottom line is that my brain is “normal” – who knew? Although I was reminded that the brain scan only measures the anatomy – not brain function!

So..my arm is black and blue from all the cannula activity and blood tests of recent days/weeks…and I have discovered whole new areas of bruising this morning covering half my arm which adds to the rainbow around my back and coccyx. I am dressing in black and blue to match!

Jeez…another cannula this afternoon…can hardly wait….

 

Saturday night, Sunday morning

It’s been an “interesting” night…Getting home after a Saturday evening outing I was sitting chatting to my friend (as you do) before going to bed. I stood up, apparently spoke some gibberish (so what’s new?) and then crashed straight backwards onto the floor. Apparently I was “out” for several minutes and came to with my name being called, but me being unable to respond or recognise my long-suffering friend for several seconds (which felt like a whole deal longer).

My head hurt like crazy and on inspection had a swelling the size of half a tennis ball. I could not sit up and I was dizzy and generally out of it. 999 was called BUT it was Saturday night… (ie no chance of an ambulance being available). I continued to lie on the floor as I couldn’t raise my head…but I could talk and was making enough sense to check my blood sugar which is often the reason for me coming a cropper…but no…my blood sugar reading was fine. So why did I just conk out?

Half an hour ticked by and a paramedic in a car arrived…he couldn’t take me to hospital because I could not get my head up from the floor  so he couldn’t transport me in his vehicle. There I lay on the kitchen floor…for what turned out to be two very long hours whilst he “assessed” me – checking my heart, pulse, blood pressure etc, whilst waiting for an ambulance… still none available….Finally it did arrive and I was mobile…Who knew that lying on a stretcher in an ambulance required 3 seat belts? They wanted me in hospital for observation for at least 4 hours after the fall to ensure there was no serious head injury. This involved my first ambulance road trip…another new experience on my “journey”.

On the way we learned about how stretched the service is. Not nearly enough staff for the demand. The same story we hear everywhere…people in work doing far beyond the requirements of the job. Our team hadn’t even had the required comfort or food break since starting work at 6pm (it was now after 2am). Paramedics have to show response time, arrival at incident, departure time and arrival at hospital time. They have 15 minutes only to “transfer” patient. If hospital staff don’t check patient in fast enough the hospital is fined, if the paramedics are not back in ambulance “ready to go” in 15 minutes, then the Ambulance Service is fined.  Sounds like another ridiculous example of target culture – completing ignoring both the patient needs and any clinical factors.

I then endured being one of those patients lying on a trolley in a hospital corridor (well..not even that…I was parked outside the door of “Resus” right by the front door…and there I stayed for some considerable time…)

Was finally seen by a nurse who checked me over, put in a cannula, took bloods, gave me an ECG and asked about pain. My trolley was then moved from time to time but nobody checked my condition again at all. Meantime I was able to observe Saturday night unfolding in A&E first hand…a car crash with 3 vehicles, a bevy of police officers talking to all the parties concerned, an assault, a 102 year old lady who had fallen and who knows what else was going on that I was not privy to…

Six and a half hours after the fall when I could sit up (at last) and had not been “observed” at all from either the corridor or my final landing spot – a cubicle…I wanted to go home. Nursing staff advised me that a doctor had clicked my name – (whatever does that mean? ) I was strongly advised not to leave the hospital. So we waited another hour and a half. By this time I imagined (naively or not) that I would have shown any head injury symptoms if I was going to. Again I was told it was against medical advice to leave but I signed the necessary form releasing the hospital from any medical negligence claim, had my cannula removed and left…relatively upright…but with a stinking headache, a black and blue  coccyx, feeling absolutely shattered and with a vast amount of ECG stickers still on my chest, arms and legs!

Maybe I will never know the cause of the collapse…I was obviously low on the priority list so can only assume blood results showed no abnormalities. On the plus side – hospital car parking is free from 7pm to 8am and we did finally leave before 8am…just!

…and, but a brief respite…Healthcare at Home tomorrow and Oncology and GP on Tuesday…Can things get any better?

 

Why Oh Why?

I am expecting 3 packages today, all of which are marked as “out for delivery” on the tracking systems. This inevitably involves a day at home. Not so bad on a drizzly, cold winter’s day but there is something about having to stay home that makes me find really urgent errands that must be done today…Why is that?

Two of these packages are being delivered by Parcelforce 24 – one has arrived – the other hasn’t. Why? Why have 2 packages from same supplier for the same address been “loaded onto the van” at the same depot but not in the same van? My assumption – rightly or wrongly – is that the second package, also being a next-day delivery will actually arrive today…I could of course be wrong and I will have to repeat today tomorrow…and/or Monday because Saturday may not be considered a “working day”.

Whilst confined to barracks another random question has been bothering me, after impaling myself on something in the garden. Why are plasters wrapped in such human-proof sealed units to make opening them, with a bleeding injury, so impossible? Have we not evolved enough to make them fit for purpose?

OK…so that about fixes where I am at today – truly sweating the small stuff which keeps me preoccupied enough so that I am not thinking about the bigger stuff…life expectancy, scan results, blood results, more treatment, retirement and, of course what to “chat” about on Monday with the Healthcare at Home nurse…

 

 

I made it and we ate it…

The gravadlax was lovingly prepared by me and my sous-chef…I am not sure it requires two people to assemble (there was no mention of it in the Swedish instructions but perhaps it was lost in translation…?) but it was more fun that way! There were waves of deliberation about how to arrange it best to fester marinate and in what dish and for how long at room temperature and how long in the fridge…but it worked! Unfortunately I can’t remember what we decided so will be unable to repeat it in the same way again BUT a culinary triumph even if the thin slicing left a lot to be desired. Suspect a sharp knife may be the key.

This provided the perfect diversion (Swedish and Jewish culture collide and salivate together) between being scanned and waiting for the results…That said, I still have another week to wait for the results so maybe I should experiment further but maybe with something I can do as a single portion!

As I was “carving” the salmon, I did think that at least this will be something new to “discuss” with the Healthcare at Home nurse next Monday, when I have my next dose of Herceptin. I wonder if this unnatural situation of being watched by a nurse as the drug infuses and “chatting” will get any easier…or how many times I will have to sit through it…or what else I might have to sit through..or what those scans have found or not found…My nails are turning purple – is this a sign?