Saturday, 27 September 2008

My Baby's Back...

Jack got home late yesterday from his adventure to Broken Hill with his Dad. He did so well, the only time he got homesick was on the first night in the motel for 10 minutes. Dave went and got Teddy out of the car and then all was well till morning. My hopes that Jack would prove to himself that he could survive (and quite well) without me were successful, he really did so very well and learned so much on his journey. He went deep into an underground mine (Broken Hill was mined for steel and silver), 3 levels down and, when relaying all about it to me on the telephone that night, he couldn't get over the fact that little children his age had been used to go down the mine because they were small enough to fit, that really made an impression on Jack. David had to bend almost in half to fit in parts of the mine, he is six foot four and a half inches! Jack got a real education on his trip, not just the mine but his uncle Peter is the Flying Doctor in those parts so Jack got to go in the plane they use to get to people and see how it all worked, look at all the equipment. On the drive home they stopped at the pioneer village at Swan Hill so he got a glimpse of how things were in those days in Australia, rode in a car made in 1925, went on a horse and cart pulled by a clydesdale. Lots of sights and new experiences and lots of proving to himself that he can do things without mum and still enjoy himself and not get homesick. I am so proud of him for giving it a chance, I know how proud he is of himself. I also love that Jack and David had that bonding time together. David did a fantastic job, Jack has come back having learned all sorts of different songs - kids songs but David had music for in the car and they would sing along together. David also printed out maps of their journey and highlighted the route they would be taking and Jack got to follow along with a different color highlighter as they went along. He really packed as much learning and fun into the trip as possible, Jack is lucky to have a Dad that loves him so very much and I appreciate that as you would imagine, especially in light of my situation.

Speaking of my situation, no news on that front. It is starting to get a bit ridiculous really, I have not been treated now for over 9 weeks and the pain from the tumor is getting to me at least once every 48 hours. I am just waiting on Peter MacCallum Institute to give me the go ahead on the surgery. I went to see my Oncologist concerned about the wait but he told me I would be going in the following week and then he promptly went on holiday and couldn't be reached so I couldn't tell him that I was not in fact, going in the following week. That is not how Peter Mac work, they would let me know when I was going in but they could tell me it wouldn't be in September at all! So, honestly why he doesn't do this kind of work himself or have his staff chase it up and get his facts straight before presenting it to a patient is beyond me but I am not happy about it, I have enough on my plate without trying to do his job for him as well. Anyway he is back from his holiday so I will be going to see him this coming week and get some answers. I just don't think it could be good for me leaving me untreated for this amount of time. I also want to ask him what my options are like, what if I don't have the surgery, can we continue on with the Avastin and see whether it shrinks it right down like we were originally going to do? And if so, why not try that first and then, and only then, if the Avastin doesn't work then do this rather radical surgery? I am not convinced that another surgery is the way to go, I have learned the hard way that you are all to often left with other problems coming from the surgery, particularly with this type of surgery. I am not too keen on doing it actually, I just have a very strong feeling not to - perhaps it's fear speaking and perhaps not but I will be finding out my options because, after all, it is my choice and I think my Oncologist forgets that sometimes.


  1. I am so glad to her that Jack had such a fantastic trip! Kids just love to explain things that they have seen to their adults! :) I am still praying for you!

  2. Jen,  I'm always happy to see you post.  Sounds like Jack had a good trip. I understand your hesitation about the surgery. Whatever you decide you know you will always have the thoughts & prayers of your blog friends!Hugs to you & Jack,Dodie

  3. Hey, it's a tough thing to decide on. I can only imagine. so glad to hear jack had a good time. good for him and his dad. hope you got some peace and quiet too.
    it's been rainy here for two days. how about there?

  4. I'm so happy that Jack has an amazing trip. I was wondering about your surgery - I too cannot believe that they are waiting so long. Odd! Please make your own decision - go with your gut instincts - they are usually the best. Hugs Jen. Lisa

  5. Jack is such a "lucky" little boy to have two loving and devoted parents! I hope your alone time was all you wanted it to be and I pray your doctor will get off his *** and do his job so you can concentrate on living!

  6. Just two weeks ago I was asked by one doctor what the other doctors wanted him to do! Oh, how the heck would I know? And here I took some solace in thinking that you were being well taken care of and it turns out to be the same all over: we are responsible for our treatment in every way. I hope that your decision to have the operation or not will become clear to you and that you have the strength to be your own best advocate! You're in my thoughts every day.

  7. It can be hard sometimes to sort out those types of feelings and determine if it's intuition or fear speaking. But I think if we really listen, we can discern the difference. I'll pray that you can see and hear clearly, without fear, and make the best decision for *you*.

  8. Hi Jen,

    I am so glad that Jack had a great time! David does seem like a wonderful father. I agree with the others that you should trust yourself regarding the your gut feeling as to whether it is right for you. As always I am thinking of you...


  9. Hang in there Jen. I was wondering what was happening on the surgery front, as we haven't heard much lately. Get your answers this week, but get moving on something!! Glad Jack had a good time with his dad, that is important bonding time.
    Hope you have a great week.
    Nicky from Canada

  10. sounds like the perfect vacation for Jack! I'll bet you are so pleased about them getting on so well.

    and good for you for following up with the doctors when you haven't heard anything. These doctors have so many patients and it is good to be on top of them and putting yourself in front of them and questioning everything.

    Big hugs to you, dearest. I hope you get some answers this week and a plan of attack.


  11. I am so happy to hear that Jack did so well on his adventure with his dad. He is very lucky to have such wonderful parents. Wow, it sounds like such a great trip.

    About your surgery, ugh...I do hope that God guides you to make the right decision. You continue to be in my prayers.

  12. Yay for all three of you!!

    And praying for discernment for you re: the surgery. That and a doctor who communicates.

  13. What a fabulous adventure for Jack and Dave.
    I would so love to give your oncologist at kick up the @#%&. I think having the avastin while you are waiting seems logical - not that I am any expert. It seemed to be helping you. I am in Perth all week so catch up soon.

  14. What a happy relief for you that Jack enjoyed himself! And that he and his Dad got such a brilliant time to bond. That's such good news.

    You really do have a hard choice to make with this surgery, don't you? - I have no words of advice - but really hope you get all the information and help you need to make the best choice.