No rule book, so we make it up as we go along 

Our beautiful little poppets have turned 3! Can you believe it. It seems like only yesterday I gave birth. They have turned into such amazing little people that make us smile and fill us with pride everyday. Their birthday celebrations were more then just celebrating their lives but also to celebrate what we have been through these past 3 years and what we continue to thrive through. To celebrate is to say we are still living, still making memories not giving up. They had a fabulous little friend party at prendooyls which included a mini disco, party songs, and mini movers. The girls truly felt special and celebrated. Then my mom arrived from America and on the weekend we had their family party. It was quite an emotional day for me because despite being stuck on the sofa I was still here. And we’ll back in January my one and only goal was to make it to see my girls turn 3. 

It was amazing having my mom here as I was very very tired. I slept a lot and my mom was able to care for me while Mand could see to the girls. I felt rough as my skin rash was returning and I had no appetite. I was in a lot of pain and I fell in the bath which required a lot of help to get me out and on top of everything I pulled a muscle in my chest. All this said it was still a magical week making memories. I always wanted to share an afternoon cream tea with my mom but physically knew I wouldn’t be able to sit in a restaurant. Our amazing friends Hazel and Sharon had the idea to bring chime to us and our incredible friends sos and Liz, made it happen by bringing chimes afternoon cream tea to our home and we got to share that amazing memory. Learning to make memories from our lounge is an adaption but we are good at adapting. 

I have met with my Mcmillian palliative care nurse. Unlike in American over here we set everything up so when the time comes it isn’t a crisis and everyone knows my wishes. It’s some tough conversations but conversations that need to be had. My “ideal” death if there is such a thing is natural, pain free, quality over quantity life and in my home. I do want any extra measures if they are  going to make me better however don’t want any that will simply prolong my life I like to hope I have a very long time until this comes into effect but I like being prepared just in case. Though the way I have been feeling I was really worried. I had been getting sick as well from the fatigue and after around 5 minutes my legs start to shake and I need a rest. 

On Tuesday, I had a clinic appointment. I was exhausted and just wanted to go home. My CONSULANT suggested a low dose of 30mg of steroids to see if a little boast would help. He said in palliative care this is often recommended. It won’t extend my life but will improve the quality of my time left here.  O my after only 3 days I can see a huge difference. I have an appetite, my skin rash is tamed, and I am awake. My mobility still isn’t great but I’ll take what I can get. I can only hope that as the steroids take effect I may be able to do a little more. I am not naive and am very aware of the negative effects of steroids. I don’t expect to be walking miles but making dinner or using my mobility scooter might be a nice addition to my days. Though I don’t feel trapped as we have had loads of visitors which keeps us busy and making important memories from the comfort of our sofa. Adapting our life, which we are really good at that lately. 

  Quality is huge and my quality of life is so much better these past few days on steroids. What we need to evaluate next week is if long term steroid use or however, long term I have is worth the pros over the cons. My focus is on quality of life over quantity of life. It makes me really value what is important in ones life. Family,friends, happiness, love, laughter, smiles, sharing in life, that is what it is living is all about.

 There is no rule book, no guide on how to live when you are dieing but I think we are doing a fine good job making it up as we go along. We just keep swimming…. Just keep cherishing each other loving each other and realising no matter how long I have left the days will be full of love and laughter and making memories. 

Until next time just keep swimming….. Love, hug, and live like you mean it. 


6 thoughts on “No rule book, so we make it up as we go along ”

  1. You amaze me and I will not give up praying. I only wish I could give you a big hug. Think of you every day. Love you.


  2. No words can say how proud I feel when I read about you amanda and your beautiful girls , you keep on swimming girl with all your strength and we will be there swimming with you hugs and kisses Mary xxx


  3. Hi Sandra just read your blog and its blown me away. We met sometimes in clinic and on 10z. So hope you get your Ellen wish, I watch it daily so I’ll be willing to see you on there, as well as the obligatory shutterfly cheque. It’s been a while since I’ve had to visit 10z, so I’ll wish you all the best and as all of us survivors do, be a dory in a world of sharks xx


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