oh no – not again!

I have been very dependent on my family’s help for everything, especially in the mornings when the pain in my lower back keeps me bedridden. Mum came to the rescue for 2 weeks when she visited from Sydney to care for me, cooking, fetching, massaging and dressing me, also story telling and playing rummykings.

For a few days in the evenings lately I’ve been happy I could move around at home without so much pain. I have enjoyed being able to look for things or tidy stuff away. I know this doesn’t sound like much, but having dropped out for nearly 2 months, it is a wonderful feeling to pick up threads of my life here and there … to look at my desk for a moment, and remember what I was doing when I was struck down.

Alison with Sully at home

Lymphoedema has been a challenge for me all year, with swollen puffy legs and abdomen. I’ve been seeing the specialist occupational therapist who prescribed special stockings and sometimes she pumped me up in the air trousers.

Pulling up my heavy duty compression stockings has become more and more difficult. This week my legs ballooned and by Tuesday I didn’t think they could get any bigger. I could hardly move. Yesterday they were huge, and lymph fluid began to ooze from tiny scratches on my ankles. I have learned that this has the cute term “lymphorrhoea”, but it’s a sign that my skin won’t stretch any further.

I rang my medical team for help and they advised: Go to Emergency.   SO … now I’m back in hospital where I stayed last night.

I was very disappointed, having to cancel my plans for the week when I was just starting to think of doing some of my favourite activities. However, now I’m in hospital it is reassuring to have the medical team hard at work on my problems and urgently reporting back.

The oncologists want to see another CT scan, hoping to find out what could be causing the worsened lymph blockage. The palliative specialists are continuing to help me adjust my painkillers, aiming for longer pain-free daytimes. The occupational therapist (lymph specialist) is investigating where the fluid might drain to and applying the gentlest treatment so as not to make the situation worse. I’m looking forward to consulting the physiotherapists for advice about walking aids and strategies. I think I’ll get the opportunity to ask the dietitian about the best menu to serve a skinny little person wearing a fat suit. All the other amazing specialists are queuing up to help.

So far it is all questions – mine and theirs      –     answers to come

23 thoughts on “oh no – not again!”

  1. Oh NO. Hang in there. You are brilliantly resilient even when you may not feel like. Hope you get home soon to your very cute feathered hat.
    Love you lots
    Deb xxx

  2. Sounds horrid for you Alison. who took the beautiful photo of two colourful birds?. thank heavens for your dear mother. she would have loved being able to be there with you to help. The lymphoedems sounds really tricky to manage. think understatement. when it is oozing out your skin is pretty extreme I am thinking. thinking of you dear Ali. i have what i think is tonsiltis at present so no good seeing you till that clears up. hopefully your shower nozzle is a functional aparatus too this time. xxxxxxxxxxxxxxxxxxz

  3. Oh no Ali, hope they can get u sorted so you can feel a lot better, and hopefully get back home
    Thinking of you xx 🦋

  4. Dear Alison,

    Of all the admirable people I know, you are the one who has taught me most about courage and persistence. May this latest torment be over quickly so you can be home again soon. Diana xxx

  5. Love your energy and ability to keep searching for answers. What a wonderful team you have – family, friends & medical. Sending gentle hugs but lots of them xox

  6. Sounds as though you’re in the right place; hopefully they’ll get the lymphoedema and the pain sorted so when you leave hospital you’ll be able to enjoy your favourite activities and be able to spend less time in bed.
    Love Danni

  7. You poor thing. How disappointing. It must be soooo uncomfortable. Hope they sort it out ASAP for you. Thanks for the update. I don’t like to email as you have so much going on and would feel you had to reply. Xxx

  8. Dearest Alison. I hope you find some comfort soon. Your great sense of humour and ability to reflect and create distance is quite inspiring. sending lots of love.

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