A full-time patient again

Since Tuesday I’ve been in hospital to investigate a horrible new pain in my lower back. It started suddenly and unexpectedly, but fortunately it came on AFTER a really happy week in Sydney with Mum. I’m glad to have had that. The pain is sciatica, with spasms shooting down the back of my leg. (Of course, as much as I can, I’m trying to sit cross-legged and do the other relevant yoga.)

I have had MRI and CT scans, and yesterday the top Palcare* Professor was here at my bedside. She said the cause of pain may be a little tumour in a lymph node which has begun to press on a nerve, or it could be something else. She thinks radiation therapy may help, and tomorrow we will discuss it with others in my medical team before deciding what to do.

They are looking after me really well in hospital and I would be comfortable if not for the pain. I’m mostly ok while resting, but the problem is visiting the bathroom. It’s terrifying! Yesterday’s huge breakthrough was finding a better dose of the right drugs for the times when moving is unavoidable. I am building confidence again, and when I relax, the pain is reduced. I’m learning some new strategies for relaxation and distraction, including deep breathing, also singing in foreign languages (for example my new Bulgarian repertoire).

John and the kids have been really fabulous and so thoughtful! They cheer me up a lot. I think they have had a very rotten time of it all.

I had no chemotherapy this week because it’s the 4th week of the cycle when I have a day off for recovery. However, instead of my first holiday, I was booked to have a portacath installed under my collarbone. It’s a handy little device allowing access to a vein for blood tests and for chemo. The idea is to give my arm veins a rest from all the hole-punching. The surgery was supposed to be on a day visit, but conveniently I was here in hospital and had it done on Thursday.

As this hospital stay was unscheduled, I had to wait for juggled appointments and there were 2 long days of nil-by-mouth, hungry and waiting for surgery! However, weekdays in hospital are very busy with visitors offering physio, pharmacy, psychology, nursing, palliation, shower assistance, blood tests, oncology, nutrition, and more. It is hectic being a full-time patient again. I wish I could go back to part-time.

AliJohn

Back-tracking, my first 3 weeks of chemo went quite well with not too many side effects and I have been full of energy, enjoying myself. The only bad thing is sore and cracking thumbs, exacerbated by the daily struggle with my heavy-duty compression stockings. The doctor recommended BOZ cream (containing boric acid, olive oil and zinc) and I think this helps. Also, Robyn, years’ ago you gave me a tube of Eulactyl Gold which I’m still using and feeling very grateful to you.

Meanwhile my hair has been falling out all week. This morning a nurse shaved off the last spindly fluff and now I’m bald. I’ve continued to be troubled with lymphoedema in my legs and abdomen, and starting to feel sympathy for Petunia Dursley, Harry Potter’s aunt who puffed up and floated away!

THANK YOU for your well wishes and please know they are reaching me and working their charm. I seem to be unable to keep up with proper replies to everyone at this stage, however.

*Palcare = palliative care. Known for their work with patients at the end of life, these specialists are the experts for pain management. They are stepping up their campaign to break the association with dying and be thought of as relevant to making patients comfortable at any time.

21 thoughts on “A full-time patient again”

  1. Dear Alison, i had no idea that this was happening. I think of you every day and send you peace and strength. I’m glad you have your family and friends around you and that you’re back in your beautiful serene home again. It’s a lovely place..hard to believe it’s in Brisbane. I visited Victor recently in Sydney. He’s got the funniest cat living in the studio with his tenant ..a fur ball with legs. It totters from one patch of sun to the next in the yard and then collapses on its back with no head visible ,just a paw at each corner. Cracks me up.The only exercise Victor’s seen it do is when he took it to the top of the steps,up to the next level of the yard and it had to walk down. Needless to say it collapsed on its back again after that.😆much love darling,and a wish for emotional and physical comfort xxxx Lyndy

  2. Hi Alison. I was wondoring how you were and if I’d be able to say hello on my recent Queensland trip. We even camped in the Big 4 van park in Atherton for two freezing nights. Still a beautiful part of Australia and it was a certainly a great place to have our children there in their early years. We ended up zipping thru Brisbane after dark and making it back to NSW last Sunday.
    You two are so admirable. You have certainly done a long hard slog in the health sector on the receiving end. I hope you can remain positive and beat it again smiling. It is what we all want to hear and I hope it’s not too hard for you.
    So glad you had a happy week with your Mum in Sydney. You sure have a beautiful family.
    Lots of love Alison 🙏
    Jill

  3. Hi Alison Thank you so much for keeping us up to date with your life. How do you make it all sound like an adventure- like the Hobbit, with set-backs and impossible odds but as the reader we know that you will come through and there will be homecoming and cups of tea and no doubt chests of treasure picked up on the way.

    I thought you might like our latest excitement- a film crew doing small snippets on self sufficiency, filming a piece on my garden and another on John’s house building.

    I think I look pretty awkward in the beginning since I hadn’t really got the hang of all the repetitive takes and acting like we were discovering everything anew but the garden looks gorgeous at the end as does our house.

    >> John and the house: >> https://www.dropbox.com/s/6yujy1mjpqi8d3o/Timber%20Home.mp4?dl=0

    >> Jodie and the garden: >> https://www.dropbox.com/s/vvl0recqla76iqd/Chicken%20Tractor.mp4?dl=0

    >

    Warm warm wishes to you and oh yes I hope you’re back to part time soon with a holiday in sight. Love Jodie

    >

  4. What a beautiful photo of you & John – eyes & smiles say so much!
    Your strength, courage and continual positivity are such an inspiration – thank you.
    Sending hugs and NQ sunshine – we are having wonderful days after the fortnight of rain (show time)
    xox

  5. Dear Alison,

    I’m so sorry about the nasty pain and the return to hospital. As for the cracked thumbs, I suggest manuka honey ointment, which aside from being antimicrobial really does help healing, though of course it’s a bit sticky. (I recently did some DIY surgery on an infected finger, so I know.) I have also found creams that combine beeswax and shea butter to be helpful. Stay away from anything with a petrochemical base. Love and bon courage from Diana and Andrew

  6. Oh Alison, what a pain, literally as well. Hopefully they will have your pain sorted really quickly so you can dance through life again. Love you lots my sister and wish I could come visit. If Mum ever settles I will definitely be there. Miss you lots .
    Love
    Deb xxxx

  7. I hope your pain puffs up and floats away with Petunia so you can get out of hospital and back to being a part timer once more with more time for life’s pleasures.
    Love
    Danni

  8. Very sorry to hear of your enforced hospitalisation. Hoping your medical team get your pain under control and you are back on your feet again soon. Thinking of you and my best wishes. xx

  9. To say that you’re my Hero would be an understatement. Your sunny and optimistic nature through all your treatment has really been amazing and I only hope should I get a serious illness that I can be half as brave as you are. I really can’t explain how much I admire you Alison. I hope they get your pain under control ASAP and know that I send my love to both you and your family xxx

  10. We send our love and we are all thinking of you. So busy on the hospital ward. Good to hear you still have moments when you can sing. Lots of love to you x x x from Susan, Geoff, Aunty Marion and Uncle Peter

  11. Hello Alison,
    I’m sorry to hear that you have been in so much pain. We’re thinking of you and hoping things settle down for you very quickly.
    Big hugs and love,
    from Judith and John
    💕XOXO💕

  12. Dear Alison,
    Absolutely ditto to Beth’s comment above. We are thinking of you very much and hope the “Palteam” gets the pain managed quickly.
    Much love from Maine, Helen and Robert

  13. Dear Alison
    I am very sorry for all the struggles you have to go through.
    I often think about you, and admire your ability to stay positive.
    I wish I could do something for you.
    All my love, Manja

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