Wednesday, September 8, 2010


8th September 2010

On a day that I thought I could catch my breath and rest because of my lumbar puncture I soon discovered that many more appointments had been arranged for me. It all started when I went to be signed into the ward for my lumbar puncture and was told that I had to go to SEALS to have bloods taken for Endocrine. They had to take three vials, a small one, a slightly larger one and then a really large one that seemed to take forever to fill with my blood.

We returned to the Ward where all my observations were taken, I was surprised when my blood pressure was 93/58 it is normally lower than that, my temperature was fine and then the nurses were asked to get my blood sugar levels with a finger prick, the first reading was 2.3 which they said was low and then it was 3.2 which was a little better. They were planning on putting me on some fluids after my lumbar puncture to try to bring the levels back up.

I then had a visit from my Social Worker and she had brought a doctor with her who was part of her team, they asked me how I was feeling, talked about how I was going, if I had any concerns and what makes me happy and sad. Sometimes I feel like people don't think I try hard enough but every single day, I am determined, push through pain and always want to do everything I can to help others constantly. I try to smile even though I am suffering in pain or feeling ill that is what is important because even though I have been given this journey I am determined to have a good outcome. Some days I do feel sad, I miss what my life used to be like, I wish I could do everything I used to be able to do, I often set myself really difficult goals because I am so determined, my greatest wish is that others don't have to suffer the way I have from my tumour, the surgery and treatment, there has to be a better treatment with less side effects and a cure for everyone.

The anesthetist came to visit and asked the usual questions, like have I ever had a reaction from the anesthetic, when I last ate, whether I liked having gas or just a canula put in and how I usually come out of an anesthetic. I found out that I was the first person into the theatre which would be at 2pm. The time came and I was rolled into theatre with Mum beside me as usual and Theodore lying in the bed beside me, not even Mum can stay with during the procedure but Theodore can. The anesthetist put some strawberry lip smacker on the mask to try to make the smell nicer, normally it smells like really odorous shoes or socks, the scent of the lip smacker disappeared rapidly and the smelly shoes smell then took over. When I woke up in recovery I smiled at the nurse as usual, that is how I recover from an anesthetic. One of the theatre nurses told Mum that I was even smiling during the procedures. I had some slight pain following the lumbar puncture but I lay still in the bed and hoped that it would improve, which it did. To my surprise I did not have to have extra fluids as was first thought because of my blood sugar levels, in my serum blood tests ithe reading had been 4.6 and that is fine.

While I was waiting to be able to go home I had a visit from the dietician and she has recommended that I put a powder called Polyjoule in my drinks as it is a source of energy that builds up the body, apparently many athletes use it to assist with there performance. She also wants me to add more fats into my diet which will make me put on weight.

Then my neurologist came to visit me and she did her normal testing on me she is happy with me but was hoping for more progress, so she wants to do a test on me to check the extent of my neuropathy apparently it is a little like the EEG one. Speaking of EEG, the results were normal, what fantastic news to hear, she does not know why I have had the seizures, or even if they are seizures but she does not know what else they could be. I had to stand and with her help try to take some steps but because of my ankle injury I could not walk at all.

The Endocrine team were supposed to see me but could not make it so I am seeing them tomorrow on C2 North at 2pm, I also have my radiation review tomorrow, so it has also become another busy day for me. I was then discharged from hospital my blood pressure on discharge was back to quite low at 79/53. I am feeling quite fatigued obviously some of that would be from the anesthetic but this has certainly been an extremely demanding trip to Sydney.

'Determination is the key to overcoming the obstacles that block our path in our journey of life'


Anonymous said...

Hi Dear Dainere , I was wanting to read from you today that you had a much quieter day, but obviously not . You are so strong , just keep it up, and this week will be over in a few days time . Will think of you Thursday for your radiation review. take care , love stuart xx

Anonymous said...

Dear Dainere

Yet another busy day, but as usual you soldiered on. No doubt you are glad that the lumbar puncture is over!

Good luck for tomorrow and I can't wait to give you an enormous hug again tomorrow night! Gavin and I will be fighting over who gets the most hugs!

Tons of love and big hugs and kisses to you and Mum
Tess xoxoxoxo

Anonymous said...

Thanks for taking the time to give us your news. And in such detail so we can share and learn from you. Good news about the pain relief options.

best wishes for tomorrow


Susan from BTAA

Anonymous said...


Following your journey every day, you are so brave!! Laugh when you can, cry when you have to. Go easy on yourself Dainere, I'm praying for you.

Love Fran

Anonymous said...

Yes, Dainere, today will have been another hectic one, no doubt. Sounds like you will be having some special time with Tess and Gavin tonight! Have fun!!

It is wonderful that you manage to keep on "blogging". It's good to be able to keep in touch with what's happening. You are such an inspiration. Thank you for your willingness to share with others.

Hope you manage to have a restful night tonight.

Thoughts and prayers,


Dianne said...

Dear Dainere,

You are nearly on the plane to come home. You have had such a big week, so much to deal with. Thank you for sharing it with us via your blog.Only you could come up smiling, and we all admire your strength of character but understand sometimes it would be hard to smile.

Say hello to Mum, I hope she is well and taking care of herself. See you on Sunday, Lachie is back training for jumps.

Lv Dianne xxxxxx

Ali Davies said...

Hi Dainere,
Haven't been able to get to your blog for a week or so as my little boy was taken into hospital for a few days. Thankfully he is fine now and returned to school yesterday.
So just been catching up with your blog. Wow, you certainly have had a lot going on since I was last here.
It must be horrible to feel not in control of what is happening to you. But the thing you always have control over is your attitude and your do a brilliant job with that and are a role model for others.
Not sure if I have shared this quote with you before but here it is again anyway:

"Attitude is a little thing that makes a big difference" - Winston Churchill

Sending lots of good wishes to you and your family.

Ali x