Author: Catherine Barker-Sheard

  • Another scar or two!

    Some of you will have seen this on social media, others only follow me here – and I feel the need to put the whole story together. Two weeks ago I woke up just after midnight with a nasty pain in my tummy, rolled over and went back to sleep – like you do! I woke about 3.30 and knew straight away I needed an ambulance. I dialled 111 then woke Roger, asking him to tell Tony & Ailsa in the morning that I’d gone to hospital. I remember being surprised Roger stayed up with me instead of going back to bed; clearly I was already really unwell…

    I have zero recollection of the trip to Hawera, Hawera A&E and an x-ray or the trip to New Plymouth. I vaguely remember being on the hall in A&E in New Plymouth and wanting pain relief but couldn’t get anyone’s attention. I don’t remember the Doctors, but sort of remember going for an MRI and Mr Farrant talking to me about surgery.

    I woke up much later in the day, having had a hole on my stomach/bowel repaired. My plumbing is weird after weight loss surgery, so it was technically bowel, but acting like stomach. There was a *lot* of goop in my abdomen so it seems it had been leaking for a while. The surgeon said I’d had a painless ulcer which had ruptured.

    I spent a few days on IV fluids, catheter and nasal feeding tube. The feeding tube was the last to come out. I was a bit stressed about them removing it, and when I mentioned it to Mr Farrant he did it straight away, so I didn’t have time to fret. I did manage to get him to wait long enough for me to put Pink on. He laughed and said it was the first time he’d performed to music! I listen to music when they do anything like IV lines etc so I can zone out and not fuss. And boy, did I get through some IV lines…

    Mr Farrant said a couple of times that I nearly died – not the first time I’ve had a bad thing happen, and reminiscent of the aspiration pneumonia. Being me, I’m healing well and tolerating softish food. I am finding my brain is fuzzy, thanks to the general anesthetic, whereas my knee replacement was done with a spinal block so I didn’t suffer any brain fade. He recommended a further two weeks off work from last Tuesday then part time, and I’m meeting with my manager Fiona and Jill (our H&S person) to come up with a ‘return to work’ plan tomorrow after I go for blood tests.

    What am I left with? A lifetime of anti-ulcer meds, some spectacular bruises – which are fading rapidly – and a bunch more scars on my tummy. I seem to collect them, like others collect stamps or teddy bears. I have a 5″ one from major surgery almost 30 years ago and 10 small ones from weight loss surgery and this drama. Still, better scarred than dead any day 🙂

    I’m hugely grateful to the ambulance service, Hawera & NP A&E, staff on ward 3B at Base, family – especially Ailsa who once again was by my side through medical drama, friends, colleagues and my Twitter friends who provided love, care and support.

    I had a nasty reaction to the IV line at one stage!
    Post-surgery on the first day and not feeling too flash.

    Getting the IV line out meant I could shower with just my ‘trunk’ to manage…
    And the nasal feeding tube is gone 🙂
  • The value of art time

    Some weekends, aside from cooking meals & basic things like washing etc, I spend both days at my art desk. This is one of those weekends. Tony is in more pain and sleepy so he’s sitting in the lazyboy, napping, while I play with my art supplies. Art is good for me – the movement of my hands, the meditative sense of slowed-down time when fussy cutting out images, and the chance to get my thoughts & feelings out of my head and into my art journals.

    I’ve been working in my large Dina Wakley journal, and the large Dylusions journals. I’ve really enjoyed playing with Steampunk images for a change.

  • Some weeks are BIG

    Some weeks are pretty ordinary, others are a bit more full on – last week was BIG. We had an appointment with the respiratory specialist on Tuesday. We were also seeing the Hospice Dr for advice about how much Tony sleeps sometimes and how incredibly drowsy he can be (sometimes he falls asleep while I’m talking to him and I don’t think I’m *that* boring!), and a wound specialist about his foot ulcer. Tuesday morning I phoned Breeda for additional advice about some stuff and she said to go in straight away, which we did.

    I won’t bother going into the details but Tony was very sick; they decided straight away a night as an inpatient was needed to get things sorted. They suggested I stay, as he was having trouble answering questions, so I camped out on a sofa bed in his room. We had packed his hospital bag, but nothing for me, so I had to do an emergency run to The Warehouse. This weekend I’m packing an overnight bag for me for whenever we go to A&E or Hospice, just in case.

    They changed him from Morphine to OxyContin because, although still an opioid, it has different side effects & will hopefully suit better. He’s certainly having less hallucinations, and the ones he does have are much less vivid. So far, he hasn’t been as drowsy either, except when he’s had a decent dose of OxyC. They also dropped the dose of some other meds, as the muscles in his thighs were getting weak and it seems to have helped.

    On Wednesday they felt things were improving but suggested a second night and, somewhat reluctantly, he agreed after I pointed out that him insisting on going home puts a lot more pressure and responsibility on me rather than the experts. Good point! Wednesday evening was very rough, but he woke Thursday looking and sounding so much better. One of the nurses commented that she’d had no point of reference because he was so sick when we got there, and it was nice to meet the real Tony.

    We headed home midday Thursday and, while things are not great, they’re a lot better. At their suggestion, I rang the DHB and from next week Tony will have a caregiver for 30 min every weekday lunchtimes to check on him, as well as the morning one.

    He’s had some high pain times already and I’ve had to ring Hospice a few times for advice; I appreciate how supportive they are. I’ve got to ring tomorrow and speak to the Doctor because the nurses think the long-acting OxyC needs increasing so he gets less breakthrough pain. As always, I’m thankful to family and friends, and my Twitter pocket friends, for their support and love – this would be an even shittier journey without them.

    We loved that the beds have beautiful quilts, and it all feels quite homely.
    This is the semi-private courtyard outside Tony’s room at Hospice
  • Art and life

    Last week had its ups and downs. The downs I’m not documenting… The ups included an amazing fishing trip for Tony, something that was on his very short bucket list.

    Tomorrow we’re seeing the respiratory specialist, Dr Hicks, to get the details of his latest lung MRI, to confirm a few things. We’re supposed to see the Hospice Dr to look at his meds, but this might not happen due to COVID19 level 2 – Breeda is trying to sort it for us. Tied into that is a meeting with the Hospice wound nurse to have a look at the ulcer on his foot.

    I continue to art out all the feelings. I’m so grateful for my art journals as I’ve been feeling a bit unwell, and my temper starts to fray far too easily. I’ve been playing on my huge Dina Wakley mixed media journal.

  • A quick update

    I guess it’s update time.  Unusually for me, I’m not sure what to say (sort of…)

    We’re getting Tony’s pain under control, but it means he is very sleepy, sometimes dozing or sleeping for 14 hours. I don’t mind as long as he’s not in pain. I don’t take it personally when he falls asleep while I’m talking and just keep going, otherwise I’d be saying the same thing over and over – which neither of us would enjoy. Sure, he misses the thread of what I’m saying, but it doesn’t really matter; half the time I’m just waffling about nothing much anyway!

    Tony can seem quite good but today, for instance, friends visited for under an hour. He’s had two extra lots of pain relief since they left and has been asleep for just on three hours now. Yet they probably went away thinking he’s doing great… It’s good for him to see people though, and that’s what the pain relief is for.

    The Hospice staff continue to be a total miracle, sorting out medication and script issues with no drama. I can’t believe how much pressure they have taken off me already.

    I had a lovely break on the West Coast. I stayed with Alan in Hokitika; I slept a lot, went out on the farm, up the Taramakau River is his jet boar, patted the dogs and played in my art journals. My dear friend Penny and I went out for lunches, visited a fabulous art exhibition at Left Bank Art Gallery and talked about “all the things”. I’m so grateful to both of them for the love, light and rest they bring to my life.

    Speaking of thanks – my best friend of forever (okay, 52 years?) Sandra is always beside me in spirit, and my sister Ailsa is on the end of a Viber message any hour of the day or night if I need to talk. We all need people like this in our lives.

    And my art – the place where I pour out the feelings and the worries, and pack them away so I can keep doing the doing. Things are tricky but we’re in a fortunate position – we have Tony’s brother Roger with us, I have a great job with an understanding boss & supportive employer, a warm house and supportive friends and family. #LoveRemains