When I see we made it through another day

 

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It feels like ages since I last wrote but is in fact only 3 weeks. Again time is being weird and those three weeks feel both like 3 minutes and 3 years.  There has been plenty of adjusting to the “new normal” and in doing so time keeps ticking along. It feels like quite a lot is happening but I suspect a casual observer would think not very much is happening at all.

Some weeks ago I gave up trying to get up the stairs at the end of the day to make it to my own bedroom.  I was just too exhausted and it was not helping my mood, at all, to stress myself out so much at the end of the day. I had a hospital bed installed in the dining room and it makes getting in and out of bed, and getting remotely comfortable to sleep, considerably  easier. I’m not thrilled at the step back from normal and it feels a bit like another defeat on the slippery slope.  But I am definitely at the stage of trying to make everything as easy as possible and of putting comfort before everything else. Although not easy, I still manage a flight of stairs every time I go outside and I still go upstairs to shower. This might sound like small achievements, but I dread the day I can’t do it, so for now it’s really important, for my mental well being as much as anything.  I’m not thrilled that I can’t just get up and down stairs as a matter of course.

During the last blog, I mentioned that I did not wish to repeat the stay at hospital. As is so often the way, I didn’t get that wish.  I spent a couple of days in considerable discomfort with increasing swelling and pain across my abdomen.  I got to the point where I couldn’t really put up with it and the swearing reached a whole new level.  I contacted the hospital team and they suggested I come in to be assessed for a drain.  The problem with the drain is that whilst it will help with the fluid retention, it comes with a certain amount of risk.  Firstly, for me, because my blood counts are not great, any hole created in my body is of course a risk of infection that I can’t fight off.  The second one being that my low platelets mean that my body isn’t healing very well.  So if a hole is created then it can’t easily heal over.

I went in to the hospital early on a Thursday to have a blood test. I was admitted to the day treatment unit. My consultant (who is proving to be amazing) announced that if the platelets were over 50 I would be allowed the tunnel drain.  This is a drain that is left in and can be emptied from home. If the platelets were under 50 he would have to come up with plan B.  My sister came with me that morning and we worked on the basis that she would stay with me until somebody asked her to leave.  She pushed me about the hospital in a wheelchair and we caused a little bit of chaos.  Owing to my need to be isolated we were shut in a what appeared to be a store cupboard full of old chairs and bed tables.  She very quickly had a tidy up and decontaminated everything necessary.  She fashioned a foot rest out of an old rusty zimmer frame.  It was all very odd.  Eventually, after I explained that I couldn’t really sit up for any period of time, I was allowed to lie in a bed and was given some more yummy hospital soup.

Some time later the medical team returned to let me know that the platelets were 42 and therefore had not hit the threshold. As the Consultant had witnessed the extent of my discomfort and breathlessness, he agreed to go ahead with a basic drain.  This is inserted, the fluid drained and then the drain is removed immediately after.  The catch was, for him to agree to this, I had to agree to be admitted back to the ward so that I could have some more platelet and plasma transfusions prior to the draining.  He also wanted to put me back on IV diuretics for as long as possible to try to reduce the fluid accumulated elsewhere.  Of course I agreed. Within a few hours I found myself being wheeled back to the ward I had spent 3 weeks in and back in the side room next to the room I had spent all those hours in.  I was told I would be treated on Friday and that I would need to recover over the weekend, then depending on how that all went I would be released on Monday. A morning hospital appointment quickly became a 4 night stay.

The good news was that this time I was allowed one visitor for 15 minutes each day.  This made a huge difference and I was able to see a member of the GozFam for a little while before and in to the weekend.

Once back in my side room, I was fitted with another canular and the IV treatments began.  On Friday morning I had multiple transfusions and then on Friday afternoon I was scanned to see where the worst of the ascites (pockets of fluid) were sitting.  This showed that my lower abdomen had a large contained pocket and so this became the target.  Late afternoon the drain was inserted with the use of some local anaesthetic which was very painful initially.  Then the fluid just started pouring out.  There is really no better way to describe it.  My sister happened to be there for part of this process and we were both absolutely dumbfounded by the speed and volume of liquid that came out.  In the end, they drained eight and a half litres.  Try to imagine that. It is a lot of fluid! Considering where it was sitting, and given that that was not all of it, there is still plenty there, it is hardly surprising that it was, and remains, unbearably uncomfortable.

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I recovered fairly quickly and was able to come home the following Monday.  It was a great week for visitors. Lots of people drove lots of miles to pop in and see me.  Visiting in the Covid world is a real problem and feels so very unfair. Unfair for me but also for anyone who makes is this far to west wales and is then only aloud to sit on the patio and have a distance cup of tea.  It is of course better than nothing and I am so glad to see these friendly faces.

Living on a ferry port offers up occasional advantages and last week my cousin and his girlfriend called in on their way over from Ireland.  We had a lovely evening eating curry on the patio warmed by the late August evening but mostly by the essential open fire and piles of logs we had burning.  My best girls were also here that week to help to keep me entertained.  Despite these increasingly challenging times and my apparently ever growing list of problems, they always manage to distract me and keep me laughing.

 

 

Since returning from hospital the second time, I am focusing on finding alternative ways to combat the water retention and more specifically the discomfort it leaves me with. In addition to the distanced reiki, I am now also getting acupuncture and massage for drainage. The massage has certainly had an immediate impact and straight after I can feel that my legs feel lighter and less full.  My toes also look slightly less like Miss Piggy’s.

I intend to continue pushing ahead with the things that make me feel good and there are still plenty of these. I’m trying really hard not to focus on the things that I can’t do and places I can’t go.  My world may have become smaller, but it is no less rich and there is no less love.

Feel your boobs and bits!

Big Love, AG xx

 


Sunrise : Norah Jones/Lee Alexander

Sunrise, sunrise
Looks like mornin’ in your eyes
But the clock’s held 9:15 for hours
Sunrise, sunrise
Couldn’t tempt us if it tried
‘Cause the afternoon’s already come and gone
And I said
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you
Surprise, surprise
Couldn’t find it in your eyes
But I’m sure it’s written all over my face
Surprise, surprise
Never something I could hide
When I see we made it through another day
And I said
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you
Now the night
Will throw its cover down
On me again
Ooh, and if I’m right
It’s the only way
To bring me back
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you
Hoo, ooh, yeah
Hoo, ooh, ooh, ooh
Hoo, ooh, ooh, ooh
To you

2 thoughts on “When I see we made it through another day

  1. Abigail, you really are an amazing woman. I’m so impressed by your continuing positivity. Keep on keeping on. Love to you and your family, Marion xx

    Like

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