The journey actually started 8 years ago

Sunday , 19 April 2015

Hello blog, hello friends and readers.
I did intend to keep posting , but that simply didn't happen.
Why ?
Lack of energy
Mundane activities taking over
Incoherent and jumbled thoughts
Painful sitting down at the computer due to all the work done 'down there where the sun don't shine '
Spirit is willing but flesh is weak


A few dark days

Straight after the Big Op , 21- 24 January , there  were a couple of dark days, but thanks to help and support from the medical staff and a session with the counsellor , they turned out to be just bumps in the road.

An Earth Angel appears 

I am so grateful to Oscar , a male nurse , from the Philippines who popped in to see me on returning from his 4 days off .
"How's your tummy ? " he asks , in English , and not it Swedish , opening up a flow of words in me.
" You are starting your new life " he says matter of fact, and it all starts to make sense ,
The following day, the counsellor pops in to see me ,
I talk, she listens , and then wraps my story  up in words.

By the way , this past week , I've had a few concerns , upset tummy and temperature of 38.5 at times. Normally I would not be too concerned , but this living with a stoma is still new to me and so I decided to phone the hospital ward where I was admitted at the hospital , not wishing to brave the emergency department unnecessarily and all the waiting etc . 

I soon realised that the person who answered the phone on the ward was Oscar, the very same , who again talked to me about my symptoms and told me to take a couple of paracetamol for the temperature and call again in the morning. I liked the sound of this , preferable to spending an uncomfortable night at the hospital. By morning the temperature was down . 


An eight year journey 

This particular journey of mine , spans 8 years, starting in 2007 when a benign tumour  of " low malignant potential " was removed . Regular check ups followed and stopped , but peeing problems persisted.
Persisted and persisted , but no solution was forthcoming for my inability to pee and empty my bladder properly .

"Must be your fibroids " ( the size of a grapefruit ) - " Time to have them out "
So, on the 20th January, 2014, I had a total hysterectomy
Quite a big thing for a woman .
"LIV-MODERN  " in Swedish translates literally as "THE LIFE MOTHER"
I dreaded that , and sailed through the op remarkably well , but I still couldn't pee properly so ended to living with a urinary catheter and bag for a whole year . Another story .

Loss and grieving 

It became clear to me that, not only was I recovering from two big operations within the space of a year ,  I must also be grieving the loss of several body parts : uterus , ovaries, lymph glands , urethra , bladder and a considerable part of my vagina.

Home again

I was released from hospital on Wednesday , 28 January after negotiating a couple of extra days to sort out my support system at home .

At this point , I could walk, about 400 metres , but still quite wobbly .
My family welcomed me home with  cards , photos of grandchildren , fresh fruit and crusty bread and   food in the fridge .

My son arrived 5 minutes later with a two big bags of medical supplies from the pharmacy . Shortly afterwards , Gunilla arrived with cardamom buns- or was it Semlor ? . So we all had  tea . 

Everything seemed to be more or less as before .
Amazing. Truly amazing. 


WELCOME HOME , Grandma :-) 

There were a couple of dark days ...

There were a couple of dark days, but thanks to help and support from the medical staff and a session with the counsellor ,  they turned out to be just bumps in the road.

One  month after the big op , I was mobile .  I could take care of myself and daily hygiene , get out of bed, potter around , make meals , do my grocery shopping ,  go for short walks , meet friends and keep hospital appointments.

Nurses came daily to help me change my dressing. This was a MAJOR concern of mine - at one time I could not envisage taking care of things myself without assistance . 

At first I could manage the top part myself , so the nurse only need come twice a week on Tuesdays and Fridays to help me change the bottom part of my my dressing which is a bit fiddly.

Home help came  once a week for a couple of hours to do my laundry and basic cleaning. Bless. 

One day , while I was reclining on my bed and sipping tea , my helper , who looks 25 but has grown up children of 20 and 30 , stops for a chat . She asks me about my op and I wax on lyrically until she asks for a glass of water . It is then I notice that she is looking a bit pale and about to keel over  Oh dear ... too much detail . Sorry luv !! Xx

Hospital , stents removed , leaks and sushi

Yet another busy day . Taxi picked my sister and I  up at 8:30 am to take us to the hospital where I had an appointment to have the stents in my stoma removed and dressing changed. 

( The stents are like chords that go up the ureters to the kidneys and 30-40 cms ) I was told it wouldn't hurt and they would simply pull them out . Ok - i was sceptical . The nurse clipped the staple stitches and removed them all the while chatting in Swedish and English to my sister and me . And then suddenly I saw a wicked grin on her face as she was holding the two stents she'd whipped out while distracting me with talk LOL . Wicked lady. She was GOOD . 

After that we were given a cup of tea and I also had a large glass of water to drink as the wanted to see if things were flowing properly . And then we went home

Delicious sushi in the evening .

Shared my semla with Dace for dessert 

Dace skyped with hubby while I watched Emmerdale 

Drama around 10,30 pm when I noticed the stoma was leaking - urine seeping out from a loose part of the bottom disc. Decided to improvise taping padding around the leaks and wait for morning .

At times like this it is great to have someone around to share the drama and prevent panic . Everything was sorted out the next day on a return visit to the hospital where I was fixed up with an alternative solution . 

Dace and Penny

The day after I came home from hospital , Dace, my sister  from the U.K . came to stay for a week and the day be before she left for home , Penny, a dear old friend , also arrived from the U.K . Penny didn't stay with me , but popped in once a day for tea, a bite to eat and endless amazing and uplifting chats. 

These two weeks were a very special time in many ways and on so many different levels . I had not asked for this , but both ladies volunteered and wanted to do this. 

There's nothing quite like sharing stories and thoughts with friends you have known for years. It was an intense and heart warming , soulful time , that I shall always treasure. 

I've thanked both of you before , but I'll do it again .

Thank you. Thank you , Thank you - I love you !! 

Thank you dear friends

Thank you dear sweet friends for all love and blessings you have been sending my way.

I checked in at hospital this afternoon and they have been busy preparing me for the big operation tomorrow (20/1)

This is just to let you know that I am signing off and won't be back until afternoon on Wednesday 21/2. The operation takes 5 to 6 hours and I will be waking up slowly hooked up to machines and monitors that go 'PING'  before they wheel me back to my room on Wednesday 21/1

If you are curious and would like to know all the gory details , then  Google BRICKER - the chap who invented this procedure in the 50s  The surgeon uses robots for precision .

Until we speak again, know that I love you and thank you for loving me . All is well and all shall be well . ️Xxxx

Catching up before the big op on Tuesday

Hiya  Bladder Blog , friends and faithful readers ,

I've not forgotten you , it's just that for the past 3 weeks I have had other things on my mind.
It's felt like " Zombie Time "  days and nights flowing into one .

It all started the day before New Year's Even , when a tooth started to give me grief and pain .
An infected molar , lower left side.
Yet another challenge to keep me on my toes.
Not easy to find a dentist on New Year's Day, but I did find Folktandvården  2nd January." No appointments " they told me " just wait in the waiting room. We estimate it will take 3-4 hours "
I arrived at 2 pm and left at 9pm - a total of 7 hours.

Turns out that said molar tooth was infected .
Tooth was opened up , cleaned up a bit and antibiotics prescribed .
( Infection must heal before tooth can be root filled )


Two days of pain until antibiotics started to kick in and after some ringing around  finally found  another dentist and an appointment was made for root filling part 1 ,  5th January ,

The pre - op information  meeting was on the 7th January - HUGE amounts  of info to take in

Meeting with counsellor , Birgitta the following day on the 8th January

Root filling part 2 , 13th January

Root filling part 3 , 15th January  and a total bill of SEK 4,500

In between hospital visits and root filling, i did have nice visits from friends, laundry dates, recycling of paper , glass and plastic, food shopping, and checking family's flat . Daily chores made difficult by snow , blizzards , slush , ice and sleet . There were a couple of days I did not venture out , and slept all day.

Family  returned home from their travels on the morning of the 15th .
YAY ... hurray .. missed them so .
Had to hand over my set of keys as theirs were packed away somewhere in their luggage. hehehe
Never mind
Off I went to my root filling appointment leaving them to rest and unpack before being invited over for a visit , and showered with presents.

So that's it - we are practically up to date now .

Spent the weekend going around in circles , as I tend to do before a trip , gathering myself and also doing some clearing of emotional clutter .

Feeling apprehensive
Dreaming 'collage - like ' dreams and then forgetting them on waking
Sadness and some tears - energies in motion

Overnight bag is out ready to be packed tomorrow morning
Bills have been paid
I owe people emails - sorry
Experiencing overwhelm - some things on my 'to do list '  are going to have to be left to the universe .
I'm going to miss my computer

All for now -  can't think ........

Night night - may post again tomorrow before leaving for the hospital around 1:30 pm .
Checking in time is 2.30 pm
Operation is set for Tuesday , 20 January , probably early in the morning.

Wish me luck , and a graceful, pain free  transformation and healing .
It's been wonderful knowing you , darlings !
(((hugs )))))

Night night

Monday , Monday . The " in-between " days .

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 ? 

Christmas Eve to Boxing day

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. 

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

  

Logged on at 11:11 and felt uplifted by the rainbows dancing round my room. 

Happy Solstice , everyone !

It's VERY nippy outside , outside . Puddles are frozen.
I am walking very slowly and cautiously with the help of my stick , as every now and then the muscle in my left thigh and hip sort of gives way. 

I've resorted to Voltaren gel , three times a day . 

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 .

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

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 

Me and my wig

Hair is very thin on top , but not bald .

Wearing a wig takes some getting used to. It is like wearing a hat. I am always conscious that it might slip off or get blown away in the wind. I have been wearing it around the house and also outside shopping and at a party this weekend. 

Me and my wig .

Important information meeting at KS today : It takes guts !

My good friend Monica  and I were at KS  for two hours listening to the doctor/ surgeon and nurse who also answered practical medical details . 

Once again , it is a lot to take in , but I am feeling oddly calm , 

The operation will take 4-5 hours and will be done with the help of robots ( a robot machine operated by real , skilful , people ) 6 keyhole incisions plus 1 longer one , 4-10 days in hospital and 2 months convalescence . 

Looks like operation date will be 19 January 2015 

 An ileal conduit urinary diversion is a surgical technique usually referred to as the Bricker ileal conduit after its inventor, Eugene M. Bricker. It is a form of urostomy,^[1] and was developed during the 1940s and is still one of the most used techniques for the diversion of urine after a patient has had their bladder removed, due to its low complication rate and high patient satisfaction level. It is usually used in conjunction with radical cystectomy in order to control invasive bladder cancer.

To create an ileal conduit, the ureters are surgically resected from the bladder and a ureteroenteric anastomosis is made in order to drain the urine into a detached section of ileum (a part of the small intestine). The end of the ileum is then brought out through an opening (a stoma) in the abdominal wall. The urine is collected through a bag that attaches on the outside of the body over the stoma. The bag is changed every 3 to 5 days, or as directed by a stomal therapist. The risk of infection is actually quite small, but there is a high risk of stomal breakdown if not cared for correctly.

Sounds quite daunting , does it not ?
Yet , I feel calm and put it down to all the good vibes I have been receiving today.
What is the point of worrying ?
I would rather spend this month before the op , focussing on being happy and getting used to the idea, because I do believe, and experience has shown that ACCEPTANCE of what is , is key .

If you are reading this , please continue to send good vibes my way .
Thank you .
Love love love .........

THE SOUL SIGNATURE SERIES: Living Your Authentic Expression with Michael Bernard Beckwith

Check out this video on YouTube:

http://youtu.be/oURzTctx5DE


Sent from my iPad

Final chemo , 3:3

So tired after final chemo this afternoon It was a quick fix . Saline solution and Gemsar , taking about an hour

Atmosphere at the hospital was a bit nonchalant - not the  usual TLC that I 've become accustomed to .

Instead , nurse calls out my name and tells me to go along to room 2 -' I'll beright there ' she says .

Ok

By now know the drill , and get settled on my bed waiting to be hooked up to the meds-

Nurse asks the usual 'how have you been ? ' questions without really bothering to hear what I have to say . She inspects my arms ad decides on right arm , inside elbow as the safest bet . There are bruises everywhere on both arms from previous puncturing .

That done , I am all hooked up to the meds and monitor. nurse leaves and I close my eyes and drift off into partial sleep .

After half an hour or so, the monitor alarm goes off so I press my red alarm button expecting people to come running but nobody comes.


10 minutes  later still nobody and the alarm sound is making me nervous
I catch the attention of a passer by who promises he'll find my nurse
When Maria  finally arrives she tells me she was  distracted her way there.

A few more minutes and  i'm unhooked ready to go home .
The first bus is full and so is the second one.
At home I grab a banana and then make myself a cheese and tomato sandwich ... and then another one , followed by orange juice and then a glass of hot water followed by another glass of hot water as I am very thirsty and very tired.

Bath, relax and now for a nap
Peace zzzzzzzz

Wednesday , After chemo 3:2 , appetite for food .

Tuesday's chemo 3:2 was a quickie , just 1 hour , once we got going . I'd arrived in good time so waited patiently for 45 minutes  in the waiting room , avd 22, waiting for my turn. I don't mind waiting and drifted into a reverie watching a nature film on the TV screen opposite me. One after the other people got called in and disappeared with their nurse and I was still there . So, I checked. Turned out that nurse thought I was down for 14:30 not 14:00 and apologised. All's well after all.
Finding the vein went well too, but hurt more since she had to find a spot near my wrist and not take the nice vein in my elbow.

The hour passed by quickly.  Had a sandwich while waiting for the Gemsar to drip in. Nurse told me that my bloods were looking good and the platelet count was 450 + also good. YAY !

Took the bus home .

At home more food .
Started with freshly squeezed grapefruit juice
My stomach is a bottomless pit- this might curb the hunger .
My appetite for food that I like is INSATIABLE .
Even when I am full I want more .
What is this all about? I ask myself as I scoff my broccoli and mushroom pasta down..... with gusto !
craving more more more .
Tasted SO good.
Don't most cancer patients LOSE appetite and weight ? Not me .
Don't remember what I had after the pasta , but later on had a few ginger nut biscuits with a a couple of squares of dark 85% chocolate and tea .
Mmmmmmm

Did I have anything else to eat after that ?
Don't remember
Have blotted it out , deleted from memory and conscience
A few glasses of hot water , while watching Emmerdale and Holby city .
Television is full of references to food - subconsciously , I am affected , pulled in - but not by the nice  glasses of wine being poured that look so good, but no, not tempted . Eye candy only . Thankful for that !

13: 52 As I look to of the window I can see a little blue sky and fluffy clouds just before sunset. Nice

Dressing gown day has been devoted to downloading MP3's onto my iPad , tidying and organising stuff on my computer, iPad and iPhone and listening to calls that I've missed  Catching up. Restarting the computer cos I can't get things to sync and behave how I want them to. Control issues . *sighs* Would be great to be a techie whiz and just sort things out . A genie in the bottle - rub bottle and techie computer whizz appears " your wish is my command "

Bread dough is rising
Plan to make a chocolate cake too


Back feels fine apart from when I try to get up out of bed or out of my seat
Haven't taken painkillers

All for now ....TTFN.

Feeling wear and tear after two cycles of chemo and chemo 3:1

So far , I've completed two cycles of chemo and started the last and final cycle last Tuesday . 7  treatments, two to go. One tomorrow and then another one after that the following Tuesday.
 
It's beginning to get me down . Yep , knocked back yesterday, literally , falling flat on my back Slipped and fell flat on my back on wet laundry room floor.

OUCH !!
It was scary .
Winded me .

Fortunately I could get up and walk , but for a moment I thought I'd be stuck there unable to move until someone came to rescue me. I am feeling stiff and left arm is bruised adding to bruises from the multiple blood tests and attempts to find a suitable vein for chemo treatment last week.

Many emotions surfacing:  Irritation, anger , sadness , fear , apprehension - a right cocktail of energies in motion. Instability .

Yep , won't lie to you . Two cycles of chemo are beginning to wear me down.

Could do with an extra energy boost.
Feeling both fragile and strong.

Trying not to THINK too much and spin stories about what is happening and why but intending to FEEL and BREATHE  allowing the energies to flow .

Would appreciate extra love and good vibes.

Apart from that - I have consoled myself by scoffing down a LARGE sushi.

Here comes the sun .....

WONDERFUL to wake up to sunlight streaming in through the window .
It's been a while !
What a difference it makes to my mood.