11.25 am , phone rings . It's Birgitta , my Kurator / Counsellor .
Normally, I would be up and about having breakfast at this hour , but today I was just about getting out of bed having been up till 3 am
I'd called Birgitta a couple of times before Christmas as I needed help with organising pre and post operation care, but there was no reply. Turns out that Birgitta had come down with the flu . She was most apologetic. As we talked and she explained the system I began once again to get in touch with my frustration , overwhelm and inability to express what I want and need. All the f-ing details that most people seem to know and take for granted but talking about all the f-ing details don't come easily to an impressionist like me. Tears . The ugly cry, that makes communication even more impossible but does illustrate more clearly my vulnerability , both physical and emotional .
Since the last chemo , 9 /12 I have become more aware of the toll these treatments have had on my body . The wear and tear that makes itself apparent afterwards ; puffy eyes and face , aching joints and muscles in left thigh and leg , pins and needles in hands and feet , right knee ( old injury ) playing up and hurting , haemorrhoids hurting and bleeding . Sometimes it feels like my whole body is falling apart and there is very little I can do to stop it IT IS ALL TOO MUCH !
Focusing on all that needs attention only seems to make it worse . I feel as if I am drowning, but on the other hand , how will people know if I don't tell them ? While talking to Birgitta , sitting on the edge of the bed, something in my right knee must have locked , because on getting up , my right leg was stiff and hurting and could hardly support me . Scary .
Anyway , my main worry is that my home should be prepared and ready BEFORE I go into hospital , but , bureaucracy says this is not possible and this will be done, efficiently , when I am in hospital and they see what my exact needs are . I still fail to see see how this will be possible as I will be less able to communicate my needs , all drugged up and in la la land the days after the op, less able to fend for my self and be clear about my needs.
What IS reassuring , is the fact that my own way of being and going with the flow , leaving things to the last minute seems to have worked quite well for me in the past . Birgitta reminds me to trust the process and my own built-in skills and resources . She seems to see them , but I don't.
So, trust the process, Mara. Make a list and take then to the pre-op meeting on 7 January at KS and then to meeting with Birgitta the next day , 8 January .
Sounds like a cunning plan , doesn't it ?
I dedicate this blog to my bladder story and journey. " A tale told by an idiot , full of sound and fury , signifying nothing. " Bladder cancer is a challenge . Problems shared are problems halved. It is my sincere hope that my sharing here will be therapeutic and inspiring , for me and also for you. Namasté ! Pssst ... to leave a comment , please click on ' no comment '. You can be anonymous if you like , or leave your name together with the comment . Thanks x
Monday, 29 December 2014
Friday, 26 December 2014
Christmas Eve to Boxing day
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| Crescent moon , Christmas Day 2014 |
Hiya blog and readers ,
22:44 Feels like I have been on a retreat these past three days.
It's been a beautiful period of silence and reflection and being guided from one moment to the next.
I have sent a lot of telepathic messages to friends and I hope I will get round to sending real messages soon .
This afternoon , I did the laundry , baked bread and had a wonderful chinwag and sharing with a dear friend who happened to drop in and a Skype call with Dace
Physically , the aches and pains in my left thigh are getting better every day . I think the muscles have been inflamed and rest and warmth of being indoors and hot baths has helped enormously.
Hair is still falling out and thinning , but I wearing a hat indoors and out helps.
The catheter is irritating me, some days more than others, but I keep reminding myself that without it , I'd be lost . Swimming naked in a warm Mediterranean sea is a blissful memory. Freedom taken for granted.
BUT .... I LOVE LOVE LOVE this going with the flow and feel so blessed.
Sunday, 21 December 2014
Sunny Sunday Solstice
I love Solstice energies. Woke to a sunny Sunday with rainbows dancing around my room . A good start .
Slept well and dreamt a lot . Among other things , in the dream I was being paid for cherry stones ! You know how you can get the deposit back on bottles and cans , well in the dream , I was paid for every cherry stone ! lol Curiouser and curiouser as I speed down the rabbit hole lol xx
Slept well and dreamt a lot . Among other things , in the dream I was being paid for cherry stones ! You know how you can get the deposit back on bottles and cans , well in the dream , I was paid for every cherry stone ! lol Curiouser and curiouser as I speed down the rabbit hole lol xx
Logged on at 11:11 and felt uplifted by the rainbows dancing round my room.
Happy Solstice , everyone !
Happy Solstice , everyone !
Friday, 19 December 2014
Aches and pains
Aches and pains in my joints and bones today so I am hobbling around feeling grumpy and sorry for myself , but it is quite bright and sunny outside for a a change so I pain or no pain I am am going to venture out to see if a bit of exercise helps . The pain in my left hip and thigh is persistent. Nuisance. I am hobbling along with the help of my stick
Monica phones while I am having breakfast and tells me that she has spoken to the authorities that organise post operative care and that I will get the post op care that I need . I am moved to tears and really grateful that she has done this for me. I feel that a huge weight has been lift from m shoulders . It feels so good. I can relax .
Thursday, 18 December 2014
8 hours of sleep , straight through
Eight hours of sleep , straight through.
Amazing
09:30 I am dressed and ready to tackle mundane things
It snowed yesterday and I can see that roof tops are still covered. Pavements are bound to be sloppy . Bloody nuisance !
Muscle in left hip has started to play up again , giving me grief and making me feel grumpy .... BUT .... that said I am also thankful for all the blessing in my life :
Champagne , flowers and chocolate with Christina last night , who also knows how the health care system works here and has given me a few tips which I have added to Monica's tips and advice.
I made dinner , fish baked in the oven served with roast parsnips, rice and sweet potato and a divine creamy sherry and veggie sauce . It was good , even though I say it myself ;-) Still some left for today 's dinner or lunch .
All this practical stuff is overwhelming and difficult for me , making the right phone calls to the right people , navigating the system and using the right words in Swedish. USCH !
An enormous CHALLENGE
I don't think that people realise just how difficult and frustrating it is for me . I must set them straight. People are not mind readers .
Phoned Birgitta , my Kurator / Counsellor and left a message.
Bye for now xxx
Amazing
09:30 I am dressed and ready to tackle mundane things
It snowed yesterday and I can see that roof tops are still covered. Pavements are bound to be sloppy . Bloody nuisance !
Muscle in left hip has started to play up again , giving me grief and making me feel grumpy .... BUT .... that said I am also thankful for all the blessing in my life :
Champagne , flowers and chocolate with Christina last night , who also knows how the health care system works here and has given me a few tips which I have added to Monica's tips and advice.
I made dinner , fish baked in the oven served with roast parsnips, rice and sweet potato and a divine creamy sherry and veggie sauce . It was good , even though I say it myself ;-) Still some left for today 's dinner or lunch .
All this practical stuff is overwhelming and difficult for me , making the right phone calls to the right people , navigating the system and using the right words in Swedish. USCH !
An enormous CHALLENGE
I don't think that people realise just how difficult and frustrating it is for me . I must set them straight. People are not mind readers .
Phoned Birgitta , my Kurator / Counsellor and left a message.
Bye for now xxx
Wednesday, 17 December 2014
Boosting my immune system
During chemo , I played by the rules , excluding all supplements since the oncologist said they might interfere with the treatments. Now that chemo is over and I have a month to go before the big op , I have decided to do what I can to boost my immune system by taking these supplements recommended to me by a healer and homeopath that I respect and trust . It is my Christmas treat.
From : http://in2herbs.co.uk
Interesting that conventional medicine regards homeopathic medicine as NOT affecting treatment . My personal experience from 25 years ago is that this is simply not true. I have had some very strong reactions from homeopathic medicines with symptoms flaring up and then disappearing as healing occurs .
I am my own guinea pig
Tuesday, 16 December 2014
Me and my wig
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| Hair is very thin on top , but not bald . |
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| Me and my wig . |
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