An extract from “The Big C: Memoirs of a Carer”

29th May 2007 
My goodness!! So much has happened since my last entry on 16.5.07. I’d better re-read that entry to see where we were at at that stage…

So I am pleased to say that that all-consuming terror that I had been feeling is the exception rather than the rule these days…despite the fact that the diagnosis has turned out a little worse than we expected. I definitely have sad times, but that deep, dark, terrifying place I was at doesn’t happen too often. I think I have accepted that she has cancer, and am currently just focusing on her treatment options.

The weekend was pretty tough. On Friday night she had about 4-6 beers with her best friend Wai, and Jay, and didn’t eat despite our encouragement to do so. She ended up throwing up at 2.30am and really suffered for the remainder of the weekend. On Saturday night she was crying in pain (across her back and where the para-aortic tumour is) and I just couldn’t bear it. I ended up crying with her. When I woke up at 6.30am the first thing I did was go to her room to see how she slept and to see if she was in pain, and she slept poorly and was in pain, and I just cried. In the end, when Jay got out of bed to get ready for work, I jumped in and snuggled up with Mum for an hour or so. It was so yummy!! 

On Sunday we convinced her to try taking the oxycodon that had seriously made her throw up, and although she felt a bit nauseous and “heady”, it stopped the pain which was good. The more she took/takes it, I think the less nausea she felt. She also started taking my Fiorinal that I take for my neck, and has had two really good night’s sleep. When I hear that I  smile. She’s also eating better…not having the heart-burn so much etc.

I still think and talk about it all quite a lot…but then sometimes also get sick of talking about it. When I do cry, it tends to be a brief outburst, followed by calm….so I guess you could say I am not in shock anymore. I guess we should enjoy this time before the chemo starts in some ways? As it will bring with it some challenges as well as some success with controlling the tumours.

We went to the oncologist last Thursday only to find out that the PET scan results were worse than expected and that there was “multiple boney tumours”. Also that the primary cancer had not been identified and that more tests were required. Whilst we understood the need to identify the primary, another week of waiting was not ideal. But here we are, close to the next appointment where I am sure he will tell us the primary has been located. This will bring the best possible outcome as they can treat it very specifically and appropriately, which will achieve the best outcome.

I am sitting here in the quiet of my place for the first time in ages. It’s actually nice to be “home” and not to be living out of bags and between my place, Brad’s and Mum’s. I must make a point of being here more, and getting time on my own more. It’s actually nice to have some “me” time. I probably should be in bed!!!!

On that note, I’m going to go now! Night night 

Love you Mum. I am sending you lots of love and healing light. Xxx

3rd July 2008 
It’s been ages since I wrote in here, and that’s not at all how I hoped it would be. When I started this I thought it would be a space to record every up-and-down of this journey, but there have been so many up’s and down’s and lefts and rights that I don’t think there’s been time TO write in here. My goodness – this is only the second time in more than 3-4 weeks that there has been the time and space (and inclination) to put pen to paper.

Mum’s in bed asleep I hope, though when I saw her to say goodnight half hour ago she was feeling very uncomfortable – it kinda seems like it’s the constipation from the morphine, but my gut feeling tells me it’s actually the fact that there is a tumour inside of her, just under her diaphram, that is taking up space where there is no room. She says “I feel like there’s a big lump stuck just there” (pointing to where the para-aorta tumour is) and that’s because there is. I know it’s an awful thing to wonder, but I wonder how you die of her condition? Will it just grow so big and push on her lungs/heart? Does it produce gases or something that cause undesirable reactions? I don’t know what sort of a journey lies ahead.

We had our first consult with the oncologist today since chemo, and since getting out of hospital. For the first time, she asked “how long have I got?”…well, she said something like “I haven’t got six months to live have I?” i.e. it’s not THAT serious? And he said “you’ve talking months not years most likely”. She was shocked. She really didn’t think it was that bad. I think that she thought she’d have chemo and it would go into remission for years and then maybe have to have it again years down the track. He said:
-it’s extensive
– it’s incurable

I say:
it sux
it’s hard
it’s sad….REAL sad!!!
It’s frustrating
It’s a gift (in disguise??)
It’s…not long enough
It’s a waste…and not, if we make some good decisions
It’s one hell of a mother fucking journey
It’s better than her dropping dead suddenly without notice one day, leaving lots of unfinished business
I love her so much I don’t want her to die

Mandala inverted 920 360

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Eulogies: A Collection

Recently, on the “Dying To…” workshop I have been running over a 3 week period, a participant shared her fears about one day having to write a eulogy. That got me to thinking: maybe I should start a collection of eulogies, and share them. That way, we can get used to them. They can become a beautiful recalling of the memories that helped make up the life of our Loved One passed. So here’s the first one. MY first one. Written for my beautiful Mamma many years ago now (though in many ways it feels like yesterday). If you have one you would like me to include here on my site (without identifying information if desired), please send it to kim@pickledtink.com.au  x

“Firstly I’d like to thank you all for coming today.

As I am sure most of you would know by now, Mum and I had an amazing trip to Nepal in March and April this year….in fact she had her 64th birthday there. She was not feeling well both before and during the trip, but we were unaware of her illness at that time. Some days she was as pale as a ghost and in a lot of pain, but still she was determined to go on that elephant safari through the jungle in search of wild white rhino, which we did in fact see, and to endure bumpy journeys by horse and cart, just for “the experience”. Sometimes I am awe struck by the timing and content of that trip. I don’t even remember why or how we decided to go – we just did. It could easily have turned into a trip involving others, like Jenny and Brad, but for some reason we were both determined to make it our special little adventure, just the two of us. It was truly magical, and even though some days I rated her only a 7 out of 10 as a travel companion, which initial disappointed her but became an ongoing joke, it was an absolute privilege to have had her by my side. In true Carole form, we shopped till we dropped, refused to purchased over priced samosas, made numerous friends along the way, and even stayed at a Buddhist monastry and meditation centre where she opened herself up to the experience in a way I had not expected her to.

 There is no doubting that the journey we have all walked with mum since her diagnosis upon our return from Nepal has been a challenging one….filled with heartache and pain on a variety of levels. It would be easy to feel that her illness prematurely robbed us of this amazing, loving, vibrant, unpredictable and caring woman, and that’s why I would like to spend some time talking about the gifts I feel have been granted us while on this difficult road.

 Up until Mum became ill, even though she obviously loved me to bits, and I her, I think I subconsciously kept her at arms distance because she had a tendency to get very involved in my life, ever fearful that I would get hurt, and forever trying to shield me from making mistakes that may have brought me pain or sorrow. Through her brave and courageous journey with Cancer, however, she softened in a way I had not experienced her before, and this allowed me to fully realise, acknowledge, experience and express the depth of my love for her on a daily basis – and that love runs deep. She retained her determination, strength and stubbornness, but she also learnt to forgive more deeply…..For the first time in forever she allowed me and others to care for her….to give her gifts without saying “you shouldn’t have wasted your money”….and we had thousands of magical, loving, tender amazing moments that I believe would not have been possible without cancer. Without her illness I’d not have lived with her for 6 months….I’d not have had 3 months off work to spend with her…..I’d not have had the opportunity to change my purpose from caring for other families, to making my mother smile…whether that be by telling her a million times in one day that I love her, or by playing the fool. To be quite honest, without her illness, she or I may well have passed on never having fully shared and experienced our immense, sometimes overwhelming, and absolutely magical connection and love for one another, and that would have been a great tragedy.

 The nurses at the hospital said that to have held on for so long, she must have had a big, strong heart – but we already knew that! We joked though, saying that she was just giving heaven a chance to prepare for her arrival – lets face it, she could corrupt even the most angelic of angels, and Heaven just won’t know what hit it!! I don’t know if they sell camper-vans in heaven, but if they do, I can assure you she’ll still be getting the best price and probably would have doubled her money twice over by now!!!

I know that we will all miss her presence in our worlds, and life will never be the same again, because she touched us all so deeply on so many levels, but I urge you not to grieve too long, but instead commit to living life with gusto, in her honour. I can hear her now saying “life’s too short”….and she is right. When we phoned people to tell them that our beautiful Mamma had passed away, there were many hearts broken, and many more tears shed. When we told people that the service was to be here at home, this news seemed to come as a bit of a shock to some of you, however, Mum’s last words to me were “I want to go home bub”, which I now know was her last request of Lee and Jenny also. Upon her “living list”, which Lee and I helped her write some months ago now, also appeared “have a party upstairs”, so please lets all join together today to not only share our grief and love, but to truly celebrate the adventurous and often outrageous and unpredictable life of my beautiful Mamma.

 Thanks.”

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Emotional Wills

Tomorrow, August 8th, is Dying To Know Day. In honour of this awesome new day, that will soon become a fixture on the annual calendar of many people interested in talking more about death and dying, I have designed an Emotional Will form…something to get you thinking about what you might say in an Emotional Will. It was inspired by the Emotional Will found at the back of the Dying To Know book produced by Igniting Change.

Feel free to use it as it is…..use it as a starting point…a talking piece…..or edit it and make it your own. It is my wish that it facilitates valuable and much needed discussions about death and dying.

Emotional Will

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Welcome to Sacred Hunger

As you can see, my site is very much in it’s infancy. I do apologise. Thank you for your patience. Please drop by again soon.

In the meantime, my Facebook page is a little more developed and can be found via https://www.facebook.com/SacredHunger

Thanks,

Kim

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