Channelling the Fire Goddess...

We seek that which is lacking within us...

This is something I have learned in my experience so far and the synchronicity of healing and the paths we are steered upon. I had been buzzing about like a headless mosquito for too long, ignoring the pools of sustenance that lay before me; my life as a writer was waiting dormant in those pools until I had the courage to immerse.

My passion has always been reading and writing, I live for it so this period of convalescence has allowed me to be still like a great lake, breathing and adapting to its change of season. Summer has supported me well this year, the element of fire has complemented my earthly grounding, the irony of a cut ureter marking the water element in my chart and the gentle breeze of words rustling through my head as I read and read and read.

I keep getting hot flashes that rise up through my upper body and head, it could be the hormonal surges but may also be my body cleansing itself. It is not unpleasant and I prefer to call it 'channelling the fire goddess' - a much more positive take on the menopausal bad press of 'hot flushes'.

I have used sage tablets to calm the fiery goddess from getting out of control. Sage comes from the word salvere which means to be saved. So to all you glorious women out there who are channelling the fire goddess I wish you the silvery cool leaves of sage.

Sleep Deprivation

A woman without sleep is a shell...

You can tell a person who does not sleep well, their eyes are glazed and they have a demeanor that leaks energy, that is because sleep is so important, there are myriad studies on the benefits of sleep, especially following an illness or in my case, surgery.

Having been what I term a 'good' sleeper most of my life, I find lack of sleep or poor quality sleep most frustrating, affecting not only my physical body but my mental faculties and most importantly for those around me, my mood. The restrictions of abdominal surgery mean that certain positions are uncomfortable, and lying on my back is not my preferred position for sleeping; I am a curled cat, a foetal sleeper. I miss sleeping on my side.

Now, I am 7 weeks post-op but I've only really been active over the past two weeks and only pain-free for 1 week following the removal of the stent from my ureter.

My strategies for getting to sleep include the following (no sheep were involved in the counting):

• Listening to mantras
• Breathing slowly and deeply
• Counting down from 100
• Listing all the states of the USA in alphabetical order
• Numbering the alphabet e.g. Z=26
• Trying to remember the Capital Cities of Europe
• Pulling my hair out!
• Trying to lie really, really still

Drug free cinematography...

After the Stent...

I woke the day after having the ureteric stent removed with renewed energy and thankfully no nasty bits coming out when I wee. I can't believe the transformation from having it removed, which is likely to have been causing me all this discomfort over the past 6 weeks.

I feel now I can really concentrate on getting my body healed and well again without the restriction I've been feeling. I did a short walk to the local garage and back, very slowly but it was enough for one day. I knew when I'd done too much moving about the house as my abdomen gets really achy so I spent the afternoon watching TV. I'm at that stage of recovery where my mind races ahead of my body and I need to be mindful and take care. 

I have not received a follow up from my gynecologist yet and feel I've been overlooked by the system. This is not unusual apparently and it is worth taking control of your own healing administration, chasing appointments etc. (I am in the UK so this maybe different if you are reading from other countries). I have been disappointed with the lack of follow up following discharge from hospital when I was reassured that all the appointments would be made for me and I'd be notified by post. A phonecall in the early weeks would have been really helpful to talk with a nurse who understood about the recovery process just for reassurance if nothing else. I had no idea that a stent could produce such uncomfortable symptoms.

As well as reading I have watched the following films:

• 12 Years a Slave
• This is Martin Bonner
• American Hustle
• Blue Jasmine
• Inside Llewyn Davis
• August: Osage County
• The Counselor
• Now Voyager
• Back to the Future (1 & 2)
• The Italian Job (1969 original)

I'm partial to a Lamborghini-driving older man with his shirt sleeves rolled up - anyone?????

SOD (Stent Out Day)

Stent Out Day....

I feel ok about this 'procedure' as they call it as I've been feeling quite fed-up at 6 weeks post-op with nowhere near the levels of energy that I need to partake in normal activities. I still feel incredibly bruised in my abdomen and am probably being too impatient as it wasn't just a hysterectomy but the added complications of endometriosis and then my ureter being damaged.

Having the stent is causing me some discomfort almost daily, it a low ache that reaches up my side and is worse just after peeing. Right now I can't entertain walking for miles; climbing a hill; lying on the grass; sleeping in a tent; soaking in a bubble bath; doing yoga; flying round the world; belly dancing; doing a pilgrimage; all these things I want to do desperately but can't. 

So, the stent was apparently 30cm in length and is finally out of my body and it only took a few minutes in which the doctor placed a camera up through my lady bits to retrieve the stent from my bladder, ureter and right kidney. It was uncomfortable but I had no anaesthetic and I think I must have incredible high pain threshold due to years of living with endometriosis.

My bladder was really irritated afterwards and I had the urge to urinate for several hours which is not pleasant as you get to the toilet then nothing comes out. You know how it is if you've ever had a bladder infection (something I thankfully never had to endure).

I take more arnica homeopathic remedy when I get home to help the healing process. Joy of joys, I suddenly realise that after 6 weeks of intense trauma on my body I'm now totally organic again with no 'foreign matter' in or attached to me.

Don't over do it...

That's all I have to say on the matter....

Appearances can be deceptive when you are healing. I look well but I know my insides have a long way to go before they are fully healed. It is 5 weeks since the hysterectomy and I still have the stent inside me which is not pleasant, so there is still shock and trauma held at a deep level.

It is dry yet breezy today and if I'd have been well I would've been at our local village's Harvest Home celebration. This is a rural event upheld in small communities around the area I live in, dating back over 100 years. The usual characters all partake in these events including a big meal of local meats, salads and trifles followed by speeches then later an afternoon tea, games and a live band in the evening. All held in a large marquee in the middle of a field. 

I can almost smell the chunks of fresh bread, cubes of cheese, pickles and condiments mixed with the soft, country smell of the grass underfoot. Flowers dotted along the long trestle tables and the bustle of the feast as people consume jugs of ale and cider.

But as I said, there is no way my body could cope with that so I rest. And wait.

Stent Irritation

You cannot see inside your body...

but you can certainly feel it. I have never been very good with non-organic stuff and the stent sitting in my ureter latched between my kidney and my bladder is a prime example.

I had been considering the stages of healing following my hysterectomy knowing that it was not quite as straightforward as I anticipated due to the cut ureter and it's own healing process. Each day I felt less tired but it would creep up on me like the weather beside a British coastline, one moment the sun was out and then a bank of grey would loom over the horizon of my body. Tiredness creeps, it doesn't hit you like pain or emotion, it is a creature that leeches you like a parasite. 

After I wee my right side aches as if someone is drawing a sharp line with a blunt magnet, the tiny trickle is followed by a hot flash up my face and neck - this could be hormones or the elimination of drugs still working through my system.

Drinking only water helps - lots of it, to flush through and reduce the challenges my body is facing.

I keep to my mantra and listen daily to Deva Premal:

deva premal - listen

Pain v People

4am...

I keep waking in pain, or more of an ache really, the sort you get just before a period, but having a hysterectomy means I won't have to experience them again. I can only lie on my back as it is too uncomfortable to lie on my side with a 21cm incision (I have just measured it with a ruler).

My dreams are fleeting, last night I dream of my gynae consultant - he holds my hand and traces his index finger across my palm???? any dream experts out there, interpret that for me.

As an antidote to pain other than the usual self-medications of codeine phosphate, paracetemol and ibuprofen I have found that people are quite good at making me feel better (providing they are not extremely funny as it still hurts to laugh).

The weather is turning ready for a predictably unsettled August; it was really windy although still warm and today the clouds have amassed to a smoky grey wash. I feel the frustration at my practical limitations which restricts me but also reminds me to learn to surrender. There is no point straining and lifting and forcing something that only time will heal. I'm reminded so often of people saying 'listen to your body'.

A gentle circulation of friends throughout the week who visit and bring me lunch following my morning routine of breakfast in bed, shower, dress, walking about a bit, reading and writing my diary. My afternoons normally involve watching tv as my brain seems to stop functioning altogether and tiredness creeps up on me.

For the record, I do feel I am improving a little each day and in the right direction now but I have decided I'm not well enough to travel to a friends wedding, it feels too much of a challenge at this stage of my recovery. She is understanding and I feel so blessed to have such great friends.

Cystogram and sense of humour failure

Catheter remains after being told it can come out two weeks post-op....I am disappointed....

I drag my poor bruised body back to the hospital for a cystogram, which is a scan of my bladder and it's workings. First off, the radiographer says 'so we're scanning your left ureter today'. Uh no!! I say, I've been told it's my right one that has been cut. 'Oh well' she says, 'we'll soon find out' as if left and right were mere accidentals but I like to know the whys and wherefores having been told the reason  why it was cut. Thank god they aren't cutting off my leg or removing a diseased kidney - right, left, right, left, oh let's just toss a coin. Panic over, it is the right ureter and I see on the screen the stent posing ominously like a conductors baton in my waterworks.

Anyhow, it all seems to be flowing well with no leaks (I feel like I'm a washing machine and they are the plumbers), so I ask if they are going to remove my catheter now. She says they don't do that there and I'd need another appointment but she'd check for me to see if there was any space 'on the list' today. There isn't.

My heart sinks. So I go home with the plastic bag of piss still attached to my leg but hey ho, at least I know it's all flowing in the right direction. In a metaphorical way I am actually reflecting my predicament by feeling pissed off at the thought of another appointment on another day. It exhausts me.

Meanwhile in another department that morning I'm phoned by the gynecologist's secretary to say that my GP requested someone look at my wound while I'm at my other appointment. I know this is not how it works, so why didn't my GP know this, we all know departments don't talk to each other, a bladder is a bladder, a womb is an entirely different matter (not that I have one anymore).

The end result of the day is my sense of humour failure but underlying it all I still have a great deal of respect for those I meet and whose care I have received face-to-face. How can I not, I depend on them.

Checking the wound

I have come to terms with changing my own dressings and taken control...

I feel well in my head, I'm eating nutritious food, drinking lots of water, the pain of bowel movements is getting less and less each day although probably still 6/10 pain factor which is not something I want to get used to.

So the latest challenge is my abdominal scar bleed which happened Friday night and following a check-up at A&E I had the option of changing my dressings at home or waiting to see the doctor/nurse. I wouldn't mind coping with these sorts of changes if I actually knew what to expect or how to respond. So far I've had no follow up since my discharge from hospital and feel quite narked at not even getting a phone call. When I had my laparoscopy last year somebody phoned a few days after I was home to check how I was and this is far more extensive surgery.

Yesterday I woke at 4.30am to the dawn chorus so lay about ruminating my dreams - I was in Venice in a piazza with my parents and I divert to a path to meet a friend who is with 5 kids, two are hers and three of them are ugly and blind and I'm unsure why they are meeting me here when I just want to sight-see!

 I change my blood soaked dressing laying out the gauze swabs and adhesive dressings alongside the saline solution (made from Cornish sea salt and hot water!) I used to faint at the sight of my own blood but this just makes me feel like I have a job to do, licking my wounds I suppose. There is a little gap in the incision where the dark blood is oozing out but it doesn't look infected and I have embraced my body's cleansing function with stoicism. I need to find out how long it will bleed, if this is normal and don't seem to get any definite answers from the GP or the consultant's secretary who says I must get a referral from my GP to see him. To be honest I don't have the energy to push for appointments so I don't.

Later in the day I feel a loss of faith in my healing ability, yet I'm hard on myself more than others, I've never felt so bashed about in my life. I'm trying to be more objective and less self-focused.

Cloud scrying is a good way of getting out of your body, if there are clouds you can see from where you are. It is a way of finding shapes or images in the clouds, I saw a bearded Neptune and a lemur! My brain is working well then!

Panic! My incision started bleeding 2 weeks post-op

If it's going to happen it will happen on the busiest Friday of the year at 5pm......

I was daring to feel more positive about my body on its road to recovery, moving about more but not overexerting, resting a lot and eating sensibly. With support from my mum during the day I was really lucky, she had gone home and I pottered into the kitchen when I felt something dripping down my leg, looked down and saw blood - aaaarrrrghh!!!!

This is quite a shocking thing to happen when you think you're all glued up and told that nothing can drop out, but the blood was coming from my incision and had soaked through my dressing, saturating it and then when I stood up....drip drip drip....horror movie or what???

So my initial reaction was, 'ok I'm not going to die' so I shuffled back to the sofa and called my partner and my mum. Then I called 111, the NHS helpline and a nurse asked me several questions to ascertain what was going on. As the doctors surgery was shut for the weekend (this still makes me laugh as people get ill on a Saturday and Sunday too) I was advised to get to my nearest A&E or call an ambulance. So holding a towel against my belly I was driven to the A&E department where I hoped to get some treatment and also to find out why this had happened two weeks after my surgery. I have great respect for the medical profession but follow-up care is sadly lacking in the overstretched NHS.

After being poked, told that the gorier the better for one A&E nurse(!) and talked about while still in the room, I had my blood taken then waited 3 hours in a room with the door closed (and no call button) before having more dressings put on my seeping wound and told to come back tomorrow if it had soaked through. Apparently, a bit of blood can be trapped after surgery and needs to come out somehow, with me it chose to come out on a Friday evening. 

It was not an experience I ever want to repeat, not only was I told that someone would see me 'in a minute' (they didn't), they didn't let my partner and mum know I was waiting in the room alone and being an impatient patient I shuffled off the bed holding my belly like a pregnant woman (ironic as post-hysterectomy!) walked past at least 10 members of staff looking like death warmed up, and into a packed waiting room. I reckon if I was auditioning for a zombie movie I would get the star zombie role handed to me there and then!

I turned to mum on the way home in the car and said, if I need my dressing changed tomorrow I'm doing it, never, ever take me back there! I know I sound ungrateful but with the correct information and reassurance I would have been able to cope with what was happening to my poor healing body. If someone had said to me, it's just a part of the process, just allow it to drain and keep it clean, then I could have approached it with a better frame of mind. It's just as well I'm extremely positive and able to cope with these setbacks.

It started with a cyst...

I'm reminiscing about the initial diagnosis and urging all women out there to not be fobbed off by their GP, you know your body and if it doesn't feel right get it checked out....

It started with a cyst, on my right ovary, called an endometrioma. Following what was probably years of mis-diagnosis I had endured frequent comments from various GP's (both male and female) saying:

"every woman gets heavy painful periods from time to time"

"it's just something women have to put up with"

"backache is a normal part of life - nearly everyone has an episode of pain once during their lifetime"

"have you tried taking painkillers?" ???????????????

"I'm going to prescribe you....mefenemic acid....the pill.....the depo injection.. the mirena coil is a great preventative measure...how about a hot water bottle...!!!!!!!blah blah blah"

I lost count of how many days I had off school due to heavy periods, leaking blood everywhere, feeling as if my insides were going to explode, bending in half and crawling on the floor with excruciating pain, fainting and feeling lethargic most of the time. Not to mention my studies being affected by lack of concentration and my mental state being eroded by beliefs that it was "all in my head" and something all women have to endure for most of their life. When I tentatively discussed this with my peers they looked at me blankly as if I was exaggerating about the pain so in the end I just said nothing.

I missed social events and work commitments for fear of needing a toilet in case I was bleeding heavily, or not feeling well enough with such low energy I just wanted to lie down. When you live with something for so long it becomes a part of you and you begin to accept it as normal, yet the messiness, the inconvenience and embarrassment of having to make excuses not to do something is NOT normal.

It was only due to a very diligent and compassionate doctor who actually listened to me and suspected I might have a cyst that I was sent me for routine scan. I was not expecting anything to show up so was surprised when the nurse said you have what looks like a cyst on your right ovary, we'll send details of an appointment...then came the first diagnosis of endometriosis at the age of 37....

So I have no regrets about the decision I made to have surgery to remove those parts that caused me nothing but trouble. I only wish it was a more straightforward operation without the added complication of having a cut ureter and endometriosis.

About a Ureter

Until now I hadn't given my 'ureters' a passing thought.....now they are very much in my lexicon....

Ureters are the ducts that allow the flow of urine from the kidneys to the bladder, humans have two, I have a poorly right ureter as it was accidentally cut during surgery to remove my right fallopian tube and ovary. I was told there was some scarring possibly from the previous operation to remove an endometrioma, or caused by the endometriosis, which resulted in these parts of my body being stuck together like glue.

Being a fan of woo-woo and looking at all possible connections as to why this should be an issue for me, I turn to the queen of woo-woo, Louise Hay, who looks at the emotional connections we have with our physical body. Here is what I found:

Damage to ureter:

Fear of relationships / low self image

The bladder is about holding on, held anxiety. Holding on to old ideas. 

Fears of letting go.

Doesn't that pretty much sum up most of us if we live in the real world!

Then I'm told that the bladder asks us to be present. I'm all for that at the moment - what else can I do? I can't even walk to the bathroom without shuffling along and feeling like an old crone.

Oh, and each time new space comes into my life, something happens (what does that mean?) I suppose it means that when you have to sit still or lie still in my case at the moment, you are in a kind of enforced state of mindfulness, you have to listen to your body or it shouts back at you to STOP MOVING.

So here are some affirmations to combat this added challenge to my situation:

"I am strong and powerful and I have the knowledge and ability to handle everything in my life."

"I release all restrictions, and I am free to be me"

"I release the pattern in my consciousness that created this condition. I am willing to change. I love and approve of myself."

Imprisoned by my body

I feel yukky.....

Three days post-op and the dawning realisation that I am actually quite poorly has set in and my mind has decided to tell me that I actually feel really ill.

I feel imprisoned by my own body and it's attachments. The fucking drain, a subject of much discussion by the visiting team of urologists and gynaecologists is talked about, looked at and I'm told it can be removed but it hasn't. It sits in my side congealing making me feel sick, I'm surprised vampires aren't swarming around the ward - I'm easy pickings right now.

This catheter is hindering my already limited movement, on the plus side it is useful to not have to get up and down to have a wee. I feel sick today. It could be the thought of having to have a blood transfusion - do something new everyday - ok I'll have two big bags of someone elses blood please!

Oh and I feel dirty and smelly and can't do much about it other than sponge myself while sitting. My head aches, my neck is stiff from all this laying about. There is no striking pain but I feel grotty as if I've been put in a room with no air, had my insides ripped out, been drugged, and not washed for a week - I think that is pretty much what has happened.

Ok, enough of this negativity although I am justified to feel a little bit sorry for myself considering all the problems I've encountered with this hysterectomy.

THEN SOMETHING MARVELLOUS HAPPENED.....

I had a blood transfusion! If you can imagine filling up a car with petrol or a glass with some delicious nutritious juice or one of those charts you see on game shows where the tube gets filled up the more noise you make....that is what having a blood transfusion feels like.

Almost instantly my colour came back into my cheeks and I could feel my energy renewing. 

THANK YOU SO MUCH BLOOD DONORS OF THE WORLD - I REALLY, REALLY APPRECIATE YOU.

If you ever want to give blood (and you will definitely help people who are in need of it like me) then contact the NHS blood and transplant service.

Memorable moments of the day!

Please remember I am still prone in a hospital bed so any action is deemed as exciting....

It is useful to live in the moment, particularly after major abdominal surgery with problems, this includes being prosaic which can help you stay grounded and focused on your healing.

So I listed my memorable moments of the day, here there are (sorry about the crude language):

1. I farted! (major achievement for my poor bashed and bruised bowel)
2. I actually stood up for a while although had to cling on to my catheter bag on my right leg and the bag on my left side containing the blood that was draining from a hole in my abdomen (yuk!)
3. My brother visited me in hospital and made me laugh (laughing really really hurts)
4. I emptied my piss bag in the toilet, life skills are always worth adding to.
5. A cloud shaped like a love heart appeared in the frame of my window - nice!
6. Seagulls create good television if you like that sort of thing and have never watched television before and are shit bored!
7. My lovely partner declared that hospital icecream is the best icecream (he has obviously never eaten gelato in Venice then!)
8. The lovely health care assistant who brings me food and drink on a really noisy trolley is from Krakow, Poland (I love it there so we had a chat about the city and her home country)
9. 5pm - 2 paracetamol and 2 codeine phosphate = better pain relief. Sunday is a slow drug day.

and now a view from my window - can you see any seagulls???

Surgery date

Expect the unexpected.....

I had prepared myself mentally, emotionally, physically and organised my home and work life so I could heal with ease after surgery. I had pushed for laparascopic (keyhole) surgery as this seemed the less invasive and took less time to heal from. I was optimistic and had managed to reduce my anxiety by reciting some mantras and reassuring myself I had good support networks in place when I was discharged from hospital.

But the best laid plans as they say.......

I awoke in a morphine haze to find myself in a lovely room of my own in hospital with an ensuite wet room (nice you might say), however my surgeon was telling me there had been a few problems and unfortunately my right ureter had been cut, but it was ok as the urologist had been called in and repaired it so it shouldn't cause any long term problems! I'm not sure how much I was taking in at this point as the room seemed a bit transient through my drug induced state.

As you can imagine this was not a gift I had wished for or even imagined, a cut ureter, a large abdominal incision, a drain coming out of my left side to take away blood into a bag, a canula attached to some morphine, a fluid drip into another part of my arm and a catheter draining into a bag on my right. Not to mention bruises and a rorschach teddy bear in sepia staining into my hospital gown where my poor body was leaking!

The nurses were wonderful, checking on me throughout the night, taking my blood pressure and temperature and being kind and gentle.

Drugs were very much needed so I stayed immobile like a stranded seal on its back waiting for my family to turn up and survey the damage.