Learning to let go

Since radiation started last week, I sleep ALL THE TIME. I am for the most part getting people to drive me to the Alfred for my appointments and yesterday when I did the bulk of the driving myself I know that I won’t be able to drive there myself any more, as I was so fatigued on the way home it frightened me. Only five more sessions – five more times of asking people to go seriously out of their way to take me. I have such a wonderful support network, but gosh, am I wearying of asking for help all the time. Knowing I will never get my full independence back, well, it hurts.

I know, though, that I just have to suck it up, and am in the process of asking for all the help I can get, with Georgia especially. Referrals are going in here and there, and help is on the way. She is the most adorable scallywag at the moment, she is 8, but like 2 I guess, and now she is all about the house (which is exactly what we wanted), destroying everything in her wake. If you are cooking, you can always count on her being at your side, pulling all the pots and pans down from the shelves next to you! At 8 years old, she needs someones eyes on her basically all the time – I’m childproofing the house as I go along. It’s been a long time since I had to do this!

Before we went to Thailand, the organisers of the trip, Lea and Geoff from Hello Me (you can find them on facebook and lots of pics of our trip if you would like a look) conference called me to see what they could do to make the trip easier for me. It was so lovely of them, but I was all like no, no, I am fine, I can do everything myself. I was so bloody determined that just one more time I would feel what it was like to be totally independent, to hop on and off planes like a pro – like I used to! I was fucked right from Melbourne airport. I missed the plane by a few minutes (my fault, not blaming anyone else). The staff of the airline were quite unpleasant to me, and I totally lost my shit, and was sobbing by 6.30am. It really didn’t bode well. I bought a ticket for the next flight and checked in my luggage. This was a no frills airline and I had to put my luggage on the scales myself lol, who would have thought 15 kilos could be so heavy! Then when I collected my luggage in Sydney, I had to take it from the domestic terminal to the international one, which was about 6 kilometres away on a bus! I thought any weight in a suitcase on wheels would be doable, but it was exhausting pulling this fucker around with two pieces of hand luggage! When I got to the international terminal, I went and changed my clothes and put on more make up and tried to pull myself together, though at this stage I was completely fucking enraged, with myself, with cancer, with all that I had lost. I got in mobile contact with one of the women I was travelling with and she told me what check in counter to head for. When I got out of the lift I found that this was the last check in counter and I just couldn’t do it. I stopped halfway there, dragging this big load of bricks and rang this girl back, who came and rescued me with the case. When we got to the check in queue it was HUNDREDS of people long. Remembering that I have two hip replacements as well as terminal cancer, this was the time to play the “cancer card” if there ever was one and try and expedite myself to the front of the queue. But NO. Not silly old me, I stood in it for an hour and a half like everyone else, and I was in so much agony at the end, sweat pouring out of me from the effort of trying to deal with the pain (liver stabs and hips burning). I found a couple of the girls again and swallowed a heap of opiates and cried in pain, which is something I rarely do. Frustration yes, pain, no, not usually. We went through customs, and then realised the walk to the gate was really going to be too much for me, so I allowed one of the girls to get me a wheelchair. I can’t imagine how high maintenance they thought I was going to be at that stage, I am sure the other 10 girls thought there goes our relaxing holiday, gonna be fun dealing with this one! And that was exactly what I DESPERATELY DIDN’T WANT. So I got even more upset. The 10 hours on the plane was challenging to say the least (it deserves a blog post of it’s own), and then we touched down in Thailand’s incredible humidity at what would have been well after midnight Aussie time, and I had been up since 4am. I am not sure, but I think I might have SNAPPED at poor Geoff, who is an absolute saint and gorgeous man – it would have been just brief if it happened, but I remember thinking to myself fuck I wish I had not come on this holiday, I was absolutely beside myself at this point. If the prospect of another 10 hours on a plane hadn’t been going to tip me over the edge, then I think I would have just turned straight around.

Thankfully, as soon as we got in the bus on the way to the resort, I rallied, and I think that everyone will agree that I was a normal person’ish for the rest of the holiday and didn’t cause anyone any grief whatsoever. But there is a moral to this story. If you are in a position like mine, then no matter how much it hurts, you MUST let people help. Lea and Geoff weren’t having any of my bullshit on the way home and organised assistance for me (and gave it to me themselves by accompanying me personally on all parts of the trip home as far as Sydney) for every point in the journey. As soon as we got to Phuket airport there was a wheelchair for me, and this man took me through customs, immigration, filled out the boarding card for me, and wheeled me all the way to the plane. I didn’t even have to get up to go through the body scanner, this lady just came and gave me a sort of pat down in the wheelchair. The flight home was heaven, as they had managed to get me a seat with no one next to me and I could stretch out a bit. Then at Sydney, there was another wheelchair, all the way to the bus to the domestic terminal, and Lea and Geoff took me there and waited with me until their flight home left. I was given a full row of seats again, at the front of the plane, and when we landed in Melbourne I was met again by another wheelchair. As it turned out, this terminal was right down the end (geez, i can pick ’em), and it would have been, without a word of a lie, about a kilometre to where Gaz and the kids were waiting. The trip home could not have been more different to the trip there, but I had to let go of something that was very important to me. My independence, or at last the illusion that I have much anymore. I had a cry to Geoff at Phuket Airport about it – realising how much easier accepting help made my “journey” in more ways than one, but how incredibly hard it was to NEED help. I just want to be like everyone else again – so much. But those days are gone forever, and it’s just another thing I have to let go of.

I am so tired at the moment that I cried to Gaz last night that maybe this is the beginning of the end. Who can sleep this much? But this was already happening to a smaller degree when the SIRT was working and my liver function was perfect, so it is probably premature to be worrying that I am in liver failure and about to die. When you are so tired it is difficult to get some perspective on anything to be honest. And I am not in any pain at all, just mind and bone numbing fatigue. This morning I forced myself to the supermarket after the school run to get a few days worth of food for easy evening meals and I am going to attempt a cook up today. If I manage it, it will be the most exciting thing that has happened to me all week, because it will mean I have been awake for a few straight hours! I hope some of this wears off after radiation finishes. I do remember it did after my bowel radiation finished, and I have been told that this targeted radiation I am getting at the moment is 11 times the strength of that.

Some Thailand pics at least! My friend Dani came over from her home in Singapore, where she is doing the expat thing, to stay with me for two days, it was the BEST!

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She bought me new bathers, and heaps of new kaftany type things, she spoiled me rotten to be honest! Rack alert!

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On the way to Phi Phi Island with all the girls:

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Ya think I didn’t love this pool bar sick? Me and my mate Mrs Woog, hamming it up:

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It might surprise you to know only one of these is a woman! Geoff and I at the ladyboys show:

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Our very own Ketut:

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Mrs Woog and I, being sausages, and having a read of each others books. Such a fun photo shoot, that was! Mucho grinning:

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Thanks for staying awake with me all that time! I’m off to cook!

12 Comments on “Learning to let go

  1. Radiation is really tiring. It is NORMAL to be exhausted. Once this shrinks those nasties you will rally and life will shine a bit brighter xxx

  2. Hi Julia

    It is humbling to give up independence, but you just have to do it to save your sanity. Just don’t stress. (Easy for me to say!) My daughter in law has Myalgic Encephalopathy which has robbed her of a lot of dignity. She’s been ill with this for about four years now, and there is no sign of her improving any time soon. My son has nursed her through this during his teacher training and now working. He is chief cook and bottle-washer, shopper, cleaner, fetcher and carrier. And he does it without complaint. Her main activity is bathing herself, and that leaves her spent. Any special event requires amazing planning and forethought, with the full knowledge that the next several days will see her horizontal.
    The statistics on this illness is a four to seven year timeframe for most sufferers. Occasionally, there is no recovery and it is a lottery as to which option sufferers get.
    DIL has learned that she had to give in, as ME is a cruel task master, just as all the cancer treatments have been for sufferers.
    You learn who your true friends are in times of crises. You seem to be blessed with some really wonderful people around you. The only thing they will ever expect from you is a simple thank you.
    I love your raw honesty in putting your feelings out there and letting people see the humanity in your illness. Don’t confuse stoicism with being stubborn! One is the thin edge of the wedge of the other. :)
    Much love XX

  3. Hi Julia, l just love your brutal honesty and if letting go of your independence for the time being gets you to the other side of radiation then take all the help you can. I know how hard it is to ask for and accept help but it’s what will get you through this tuff time, so just ask. I love the photos of the trip you look so happy and relaxed, take care, cheers Veronica XOXOXO

  4. Hi Julia,
    I havent met you, but know you through getting your book from the library, and have followed your journey since. You are amazing!! You are such an inspiration to us all. I will always remember your tenacity and strength, to hang onto Life and your independence. Please dont feel you’ve let yourself down, by asking for help. Remember, YOU are giving THOSE people a chance to be kind, and we all want to be able to do that for others. i’ve loved getting to know your family, through your book and blogs, and you are all in my prayers, now and forever. God Bless you and He is just a prayer away… I hope you know that. Lots & lots of Love, Margaret, xoxo

  5. Beautifully written, it really spoke to me. Hit the nail on the head. Thank you so much for sharing.

  6. You write so well, honestly and succinctly. Don’t be too hard on yourself. Remember how good others feel when they are allowed to be of help – it’s what friends do for one another. Bless you heaps. Debbie

  7. I totally get it. Cancer takes so much away, independence is the one thing you want to hang on to. But you know sometimes, and now is one of those times, asking for helping isn’t a weakness, it’s a strength. Bring on Bali, that’s what I say! xx

  8. Dearest Julia
    It’s so hard for a proud, independent woman like you to surrender and ask for and graciously accept help, but this seems to be one of your bigger learning/challenges so do your best to embrace it and relax. You will use less negative energy that way honey.
    Also I have a similar story to Robyn (second post) as my darling daughter in law has had ME?Chronic Fatigue now for 15 years and is now bedridden, and my son (bless him) is her main carer, the cook, shopper etc while running his own artistic business form home and teaching. Luckily they adore one another and have the assistance of her mother and me to get by. But she too (a gorgeous tall, model like beauty who is beautiful inside and out) has had to just surrender and allow help in. She can barely walk to the toilet and needs help being lifted off.
    So really many people, no matter their condition have to ask for help and accept graciously because we all want a chance to give and receive and we will all learn that somewhere in our lives. It’ll get better once the radiation fatigue has worn off hopefully honey……thinking of you, love Jan xxxx

  9. Wouldn’t have missed that few days for the world my girl…..I’m in awe of your attitude lovely lady – it will see you go far. <3 Dano xx

  10. Julia
    The biggest high five you have put to shame so many people! You will always be in your children’s lives promise! I lost my son to this fucking awful disease in may 2014. Never a day goes when i don’t think about him. Your book was in library and it was like a magnet i picked it up you both shared so many of the same dreadful challenges. Your writing will never fade. A big hug XO XO

  11. How beautifully written. I can’t imagine what you would be feeling, and how important your independence is to you. But it seems as though you are giving a lot to other people, from your positive approach and your care and your fight for life – maybe recognising that might help with accepting the gifts of help from others? So glad to hear the holiday went well!

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