Sunday, 6 January 2008

Part Two of the Longest Blog Post Ever....(You'll need to start with the post underneath this one if you want it in order of happening!)

Now unbeknown to me, after I left, she then got on the phone to the Hospice Unit (Palliative Care Team) in my area, whom I have had many dealings with and whom I have a huge amount of respect for, and organized my special Nurse, Support Person, Counsellor, Friend, to check in on me and try to organize help for me from her end. This was really an inspired move as the great Brian McDonald, a real pioneer in the field of Palliative Medicine, pain relief for folk living with and dying of cancer works out of this particular Hospice Unit alongside my Guardian Angel, Sharon. I cannot speak highly enough of this gentle soul of a man, he is so incredibly kind, he is an innovator in his field of believing we should not have to suffer pain when we are dying of cancer. He comes with some of the highest credentials in this country for his contribution to this cause, aside from that, I adore him, he has twinkling blue eyes, a merry Irish accent and a distinct aura of fun and merriment about him. So this wonderful man has worked closely with me before and we formed quite a bond he and I, he has seen me in the worst pain of my life bar childbirth and then seen me bounce back and match him equally for merriment and fun, he has even sighed about the large age gap between us, all in jest and good humour of course. We just clicked!

So, on Friday night, just when I was feeling particularly fragile and hadn't heard from one single member of my family, which I allowed myself to feel terribly unloved and hard done by over , my phone rings and there on the other end was my Guardian Angel herself, Sharon. Sharon is one of the kindest, most gentle, most loving, selfless of souls you could ever have the good fortune to know, and if she takes you under her wing, then you feel as though nothing can harm you whilst you stay there. She took me under her wing for the first time a long while ago and has done whenever I have needed her since. I thank my lucky stars everyday for that blessing. These are the Silver Linings that make this journey, this disease, survivable. Her gentle voice reached out to me, soothed and wrapped around me like an embrace. I at once felt calmer. She listened, she empathized, she just held me over the phone and I do not exaggerate, this woman is powerful in her goodness. She would not hang up the phone until we had a workable plan of action for the weekend. I told her how vulnerable I felt going through this kind of pain without any of my 'Specialists' available to me. She totally understood and just knew that that could not happen, I could not be left to my own devices for an entire weekend without being able to contact anyone that knows my case. She made a plan or three, hung up saying she would call me back tonight as soon as she could. I hung up from her feeling better (that is such an understatement), feeling some hope and feeling nourished. Sure enough she called me back, I missed her call though as I had not taken the phone into the lounge with me and didn't make it to answer it in time. I listened to my messages, she told me not to bother calling her back unless I wanted to talk but that she had spoken to Vanessa (that is the Doctor that filled in for Marie by seeing me earlier), Vanessa was speaking to Marie at that moment via phone, they were organizing a meeting in regards to me as soon as Vanessa finished work. Sharon would call me as soon as she had any information for me. I guess all this was happening from around 5pm up till about 10.30pm on Friday night. Anyway, I was touched, this was so good of all parties involved. Marie was on holidays, she doesn't often take holidays, she works very, very hard. She also has children, so she works doubly hard and she was good enough to take time out to discuss the best way to treat me. Amazing!

Anyway, Sharon calls me back it must have been close to 10pm by now. She still hadn't heard from Vanessa so was unsure what to do. She had left a message on her mobile asking her to let her know anything that might help me through the weekend. Unfortunately Vanessa didn't get back to her so Sharon spent about 45 minutes just talking to me on the phone helping me to make a plan with what medication I had combined with her knowledge as to what was safe and unsafe to just get me through that night without having to go to Frankston Hospital, which she totally understood was a terrible option for me, also I had Jack at home with me but mostly I just knew I couldn't sit on those hard plastic chairs for six hours in agony waiting to be misdiagnosed and given Panadol Capsules or something equally as ridiculous. She hung up after giving me every kind of support she could and I know she was very worried about me getting through the night relatively pain free.

Well, I did get through that particular night, definitely not pain free though but I had enough drugs that it was not as unbearable as it had been before, it was still too strong to sleep through though, so I was kind of desperate to speak to Vanessa as to better pain options, plus I was fast running out of what she had given me as I was having to take so much of it to achieve even a tiny relief. I rang Vanessa's mobile and home numbers myself that morning and didn't manage to get hold of her. Sharon had phoned me the night before but I must have dozed off on the couch in a moment of freedom from pain to say that she had heard from Vanessa and that either Marie or Vanessa would be phoning me in the morning. So that is why I didn't have any compunction about phoning both Vanessa's mobile and home phone number. Not that it did me any good at that time. Anyway the morning passed and I was getting increasingly nervous as I still hadn't heard from either of the Doctors, the phone rang again, I raced and grabbed it sure that it would be one of them and instead it was my Guardian Angel again, just wanting to know whether I had heard and was I okay. I tell ya, she's the real deal. I let her know that I hadn't heard anything and was feeling really anxious now about getting through the rest of the weekend with the added pressure of not having enough of the pain medication that she had given me. Even though it wasn't holding back the pain near enough, it was definitely better than nothing. She was really upset that I hadn't heard and asked whether I would mind if she chased it up further for me? As if I would mind??? I gave her Marie's mobile number which was given to me under strict instructions to never reveal to anyone. Funnily enough when Vanessa gave me hers she too mumbled something about "you didn't get that from me" type of thing. Even funnier was that Sharon - Guardian Angel had given me hers some months ago with even more to risk if she was found out as she was actually not allowed to do so. I couldn't help laughing as I gave Sharon Marie's number and said "I really hope she doesn't get angry with me for this", it just struck me as terribly funny (in a bordering on hysteria kind of way) that all these women wanted to be there for me but felt they had to keep it secret, even from each other, even though they were all trying to help me...Anyway, with some trepidation, Sharon rang off to go and call Marie.

About half an hour later I got a phone call from Marie, she was on her mobile, in her car and had come from another meeting with Vanessa. She was sorry she hadn't been able to have got it all done before now but she had a plan for me. I was so relieved to hear that voice I can't even express it. I don't think I even realized how much I rely on her judgement, her common sense, her intelligence and the fact that she knows everything about my situation from start to finish. She knows me, she trusts me, she respects me and she makes all of this very apparent. Anyway, she gave me the lowdown very quickly and concisely about what to take, when and how much etc, etc. It was very, very different from what Vanessa's plan had been which I must admit did inspire me with confidence, as, no offence to Vanessa who did a wonderful job considering this was the first and only time she has ever seen me and she is not an Oncologist as Marie is, Vanessa's plan hadn't held the pain nearly enough for me. Marie then told me how she and Vanessa had gotten together to discuss everything but they had had to work around each other. Vanessa was working out of two clinics and also trying to pick up some of the slack for Marie's patients as well so it was amazing that they even managed to make time to do this for me at all and I am so grateful. Marie then proceeded to voice to me how wonderful my Guardian Angel Sharon is, and what a supportive, kind, selfless human being she is, I think they really clicked with each other. I love how the world works sometimes. I no sooner got off of the phone from Marie than it rang again and it was Sharon. I told her about my conversation with Marie and thanked her for calling her for me and telling her I was getting desperate etc. The next lovely thing was that I listened to Sharon tell me how wonderful, supportive, kind and selfless Marie is. She just couldn't speak highly enough of her and I was thrilled as Marie had said almost identical things about Sharon. I felt so ridiculously proud that they had finally spoken with each other, of course I had been raving to each of them about the other for a long, long time but never really ever imagined they would ever connect with each other, even if only over the phone, but yes, I felt so proud for want of a better word that they took so much delight in each other. This was the part of the entire painful past days that has stuck with me the most. The fact that these women wanted so desperately to help me, that they admired their own qualities in each other. It didn't completely end there, Marie phoned me again later that evening to make sure the knew plan was working which it was, much, much better and we talked about what she thought was causing it and we are on the same page regarding that. Sharon phoned me both Saturday (a couple times) and Sunday to check in on me. All this weekend from about 2.00pm on Friday afternoon, Sharon was not officially working. She did what she did for me all from home on her weekend off out of the goodness of her very big heart. She has three children, the youngest of whom is 5 and she made sure to call me each day and chat to me, I mean really chat to me and gauge where I was at. Truly amazing women, each of them. I don't think I have put into words quite how wonderful Vanessa has been in this too, I just feel I have mainly focused on Sharon and Marie, however, I just want to say that Vanessa was wonderful! She didn't know me at all, she was way out of her depth in regards to my illness and yet she took me in on a moments notice as soon as Leslie (receptionist) explained to her what was going on and who I was in regards to Marie's patient. She jumped me way up the queue, she trusted me to know how much pain was too much, to give me so many different pain products, she offered to come to my home without charge to give me injections if I needed them, she didn't charge me a sent to see her in her rooms, she generously gave of her time to speak with Marie about me and there were a few times that I think I forgot to mention when she did call me too to see how I was doing. So all in all it's been an amazing journey these past few days. The pain is a sort of mist that floats around these amazingly beautiful things that have happened here this weekend. Like these woman are an island and the pain is the mist. I thank you if you have hung on throughout these very long posts, I just needed to share the goodness, the love, the positive that is all around us even in the midst of something terrible, like disease and cancer and pain. I choose to take these beautiful moments away from it all and I hope there is something healing in doing that, it feels right, it feels almost mystical somehow, unfortunately I am not a better writer in order to explain it more fully than this but it is something huge, I recognize that. I guess some folks will get what I am saying here and some won't but the point is that I do and in getting it I have healed in some way far beyond just the pain.


  1. Dearest Jen-
    Thank you for sharing your story with us here. I love this story. You are inspiring to me and I am so proud to call you friend. You find the joy in even the worst of circumstances--the beautiful amidst all the ugly.
    A healer I once knew and worked with at the Center for Integrative Medicine at George Washington University here showed me a study that documented how patients with high high levels of chronic pain who wrote about it were better able to heal from their pain and showed remarkable progress. So keep writing sister! I am so glad that you are able to put pen to paper--or hands to keyboard--to share this story.
    There really is such love in the world and often we are unable to see it until we are in such pain. I love the story of how TeamJen came through to support you and how you felt so cared for, loved and supported by them. And I love how they in part also felt nourished and loved by each other too!
    Sending love your way

  2. God Bless you, dear. I can't stop crying reading all of this...

    How do you do it? Where do you find the strength?

    (((((Jen))))) virtual hugs

  3. Oh,Jen. Wish I had been a reader of your blog when you posted this. I would have given you a virtual hug xo