After nearly 9 years of relatively easy going, now the cancer has shown up in major organs instead of being confined merely to lymph glands. Worst of all, the specialists say they don’t think I’m robust enough at the moment for more chemotherapy. Of course I’m doing everything I can think of to build up my health and strength.

It’s been a while since I wrote, sorry. Thanks for your patience and your caring messages. I didn’t mean to keep you waiting for an update. I find the days fly, and I wanted to give the family time to come to terms with my medical results before the wider world comments. Somehow I’ve also let my inbox fill without proper attention. Sorry if you have written personally to me and not received a reply.

Wearing low-compression stockings

My second visit to hospital was discouraging because they couldn’t really do much to help. I have multiple problems – pain, lymphoedema, big blood clots (DVTs), pulmonary embolism, malnutrition, anaemia (requiring a transfusion). It sounds terrible, doesn’t it, but I think I don’t look as bad as this sounds. At least there’s a chance the many disorders might distract me from each other. I hope I only whinge about one at a time!

There are lots of little things too: I’ve lost my nostrils hairs – boo hoo! Extreme oedema feels like I’m wearing a wetsuit that is way too tight. I wake in the mornings looking like a hippo with my face swollen by lymph fluid. Going to the toilet is interesting with a numb pelvis. If I’m lucky I don’t get lymph fluid squeezing my chest and tummy, impeding breathing and eating.

I’m exercising and eating a body-building diet. The rule is less salad and more cheesecake with cream! Most days I’ve been incredibly happy. I try to tone it down by taking deep breaths because I don’t want people to think I’m high. I wondered if someone actually has slipped me a happy pill. John says no, and that I’m just made like that, default position = happy, and very fortunate it is too. I gather some would feel depressed and grumpy in myAli situation, and that’s no fun for anyone.

A good day is one with a little taste of something I once took for granted. It’s hard to describe, so let’s just call it LIFE. It is odd to find old lists and notes-to-self about tasks underway a few months’ ago. I’m reinventing myself, as an old friend aptly put it, learning to fit in my skin, accept disability and recalcitrant pain. Another lesson is to accept being very dependent on carers. I’m still here so perhaps it means I haven’t learnt all my lessons yet.

8 thoughts on “Lessons”

  1. Love you Ali. So far have raised $1500 of the $10,000 for Gynaecological cancer research. Doing in your honour and respect. If anyone of your supporters need to know of this cause and pledge I have made , let me know. and I can share the link. I am crazy busy and would relish a day of chilling but two full time jobs going on at present plus training for the walk and fund raising and airbnb etc etc. I still owe you $$ for the What the Crap! Bank details please dear. Love your work and strength and default position. Not much to be gained by the alternative.

  2. We love you default position. It is our example for what to do when things get tough. You are our inspiration.
    But I’m not too sure your new stockings are going to be a real hit in the fashion world.
    Love you to bits, always.
    Love, Deb

  3. Oh, Alison… How you stay you through this ordeal, I do not know. You have a remarkable ability to accept reality and not let it turn you sour. Just wondering if you would find coconut water soothing… Diana xxx

  4. So sad to hear you’re in so much pain and discomfort but glad to hear that in spite of all this you are still able to keep a positive attitude and be happy. You constantly amaze me with your inner strength and your ability to remain happy, despite what you have to go through. Much love, hugs and tail wags 🙂 to you and your family. xoxoxoxoxoxoxo ❤ ❤ ❤

  5. Glad to hear that despite all your trials and tribulations you, as usual, are somehow managing to remain in your default position, keeping positive and still smiling, regardless of pain and discomfort. I’m sure you know that I am firm believer that we are put on this planet for a reason and, rather than learning lessons, it’s a case your reason has not yet happened, or become apparent. My thoughts and best wishes are with you through your difficulties. PS Diet sounds wonderful … yum! xx

  6. You are amazing Alison. You are always smiling and making the most of every day. Many would have crumbled by now, but your positive attitude just keeps shining through. You are an inspiration to everyone who has this horrible disease. My thoughts and prayers are with you always.

  7. You amaze me. You always seem to post a update just when I’m thinking of emailing but I hesitate to do so as I know you have so much on you’re plate and would feel bad not responding straight away. I really doubt I’d be as patient as you as a patient. It must drive you nuts most days, the discomfort. I wish with all my heart I could snap my fingers and make it all go away for you. Please know you’re always in my thoughts kiddo xxxx

  8. No need to reply, I just want to say that I’m glad you are happy. It may seem strange to be saying you are happy in your situation, but oddly, I get it. It’s a strange sort of place to be, but possibly freeing in some way. It’s maybe like things are so heavy that if you don’t let go of the cruft you would sink but when you do, there isn’t anything to keep you from finding peace.

    Hugs, Beth

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