Hysteria...

I'm not talking about my state of mind, but the fabulous anthology containing the winning entries of the Hysteria Writing Competition.

And guess what? I won first prize with my poem!

A few months ago, I certainly wasn't thinking of winning a poetry competition, having just experienced some major surgery [you can read about this on the rest of my blog]. My life was put on hold. On reflection I was really poorly, although I make light of it in this blog. Pain is wearing, fatigue eats away at you. However, our bodies have a remarkable ability to heal and rebalance if we let them. Take time. Be patient as a patient.

I had been accepted on the MA in Creative Writing at Bath Spa University in March and my goal was to be well enough to enjoy it. I had no idea that in July & most of August I would be convalescing from abdominal hysterectomy. And up until September I still wasn't sure I'd be well enough. 

But I was. Somehow.

So, if you are entering that phase where you feel really poorly, slow and helpless, and can't even concentrate. Then, know it will pass. I did a little more every day, resting and having some gentle complementary treatments to aid the process.

Writing was also a great healer and this blog was a result of that period in my life. I'm really busy at the moment reading and writing on my course plus working part-time and I'm so thankful for all the help I received during my 'down time'.

I found the Hysterectomy Association forum a useful place to connect and talk with women of my age who were also encountering difficulties with their health.

If you want to read my poem then go to The Blog of Linda Parkinson-Hardman where you can download Hysteria Anthology 3.

Filling the womb space...

but you are not defined by a part of your body...

I read about this recently when looking at the forums for women who have had a hysterectomy and feel a sense of loss after surgery. I really understand this complexity, don't get me wrong, but women are more than just a uterus, we are living, breathing organic beautiful beings capable of being much more than the sum of our parts. Even women with healthy functioning wombs are often unable to conceive or have children so living without a womb needn't prevent you living a full life.

I suppose the closest I have come to the grieving process (and hormones play a large part in this) was after the final meeting with my lovely gynaecologist, who I still have a major crush on (for the record, he is strictly professional). I'm notoriously bad at letting go so any perceived ending or closure is very difficult for me. However, from the recognition that I was going through a process I could deal with it and look at it in a more positive role. 

Positive thoughts include:

• I am getting fitter every day
• My hot flushes have ceased completely
• I'm driving long distances again
• I can work 
• I'm following my dream of becoming a full-time writer by doing an MA in Creative Writing.
• I don't have debilitating, exhausting periods anymore! Hooray!

So, wherever you are in your story, believe me, it does get better. I am now 3 months post-op having had a TAH with a cut ureter so extra surgery was needed, catheter and stent during the 6 weeks following surgery - pain, discomfort, limited mobility, fatigue etc etc. 

Today I had a CT scan of my pelvis which is  a painless procedure and I have a follow up appointment in December with the urology consultant. The strangest thing today was being asked when my last period was (they need to check before a CT scan in case of pregnancy) and I cheerfully stated that I'd had a hysterectomy on the 4th July. It made me realise I'm not ruled by the cyclical symptoms that harangued me for most of my life and I'm focusing on filling my womb space with creativity and joy.

"Parting is such sweet sorrow..."

wrote some famous geezer once upon a time...

...and how right he is. Sorrow rises up to meet me. This is potentially the last time I will see Mr F, my lovely gynae consultant unless by some quirk of kismet we meet in Qatar! He is leaving me for the desert!

My follow up appointment has a sense of an ending, it is a closing of a chapter as I continue to heal yet I have been through such an intense process with this exceptional man, the connection is inevitable. 

Don't all women fall in love with their gynaecologist?!

So I leave the hospital with renewed hope that my body, now rid from endometriosis and the organ that produced it, is finally going to allow me to be as free & vibrant as my thoughts. Yet the loss prompted by this change overwhelms me and I spend the evening silently weeping; perhaps this surfacing melancholy is a sort of relief overflow from the effects of surgery and the energetic links that are created.

My osteo recently remarked that it is as if all my whole life has been leading up to this point, the start of wellness and a clearing of karma through intense pain and suffering. The shamanic tradition marks this as the 'wounded healer' archetype, and through experiencing this descent into the abyss of illness the young initiate will re-emerge into the world with vital information to share with others. 

"So, I thank you Mr F with all my heart for your commitment to me over the past two years, you have touched me way beyond the physical and above all you were the one that really heard me. I will never forget that."

And who could have predicted that my final gynaecology appointment would involve the mention of camels! 

Perhaps Mr F will be true to his word and bring me back a camel from Qatar.......however, I'll settle for diamonds!

Here is a photo of me on 'Skyjuice' the camel in Jordan.

Butterflies and the process of transformation

Butterflies teach us how to transform...

We can learn from creatures that transform drastically throughout their life cycle and a prime example of this is the butterfly. I have always been drawn to their subtle complexity, a life lived in apparent frailty but disguising great strength. I meet the owner of the Butterfly House and he shows me a Gold Rim Swallowtail caterpillar, it it black and bulbous with red spikes, and secretes a wax-like substance when under threat! I am reminded of the way my body oozed and expelled liquids post-op, something no-one ever discusses in conversation. The processes we go through when healing can be regarded as disgusting or they can be looked upon as a necessary part of transformation. As a butterfly.

The chrysalises hang apparently dormant in their cupboard at the back of the Butterfly House, they dance as if celebrating their imminent emergence into a new life. I spoke to many women before I had my hysterectomy and heard their experience of it, all of them said they didn't regret it and it was the best thing they'd ever done. I maintain that view also regardless of the complications that arose during my surgery and the pain I endured. I am grateful to those professionals who helped me to combat endometriosis, a debilitating and life-changing disease. I felt hysterectomy was the only option left to me if I was to lead a happy and fulfilling life.

I will leave you with a photo of the Tree Nymph butterfly, a gloriously large creature that flies as if it is tissue paper swimming on the breeze.

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.

Doing too much...

Pain in the neck?

My neck and shoulder ache is in response to my body getting back into alignment after so much contraction and concentration on my pelvic area. I can only describe this as a feeling of being pulled in at the middle by a tight elastic belt, it is uncomfortable and needs gentle easing rather than a sharp pull which would only snap. After all the pain I have endured over the years with endometriosis I find that the worst feeling is having pain in the neck or head area and being unable to get comfortable or think straight. 

When I do eventually get to sleep I sink so deeply that when I wake I feel paralysed by my inactive muscles as if they have petrified like a fossil. My dreams are crazy-vivid, full of people demanding me to be in control, to make decisions. In one I call an ambulance for a man who has a wooden stake through his right femur, it's dark and the door to the house is extraordinarily narrow. Then the ambulance drives past, missing the address and gets waylaid assisting a bunch of drunk men, I'm frantically trying to get their attention to assist a much more worthy patient and to hurry.

I have been having Cranial Osteopathy and my Osteo feels I'm doing too much, straining my body with too much action, yet I feel so lazy for sitting still, for gentle movement. This is a western trait in the glorification of  busy, why do we reward the process of accumulation, achievement by the amount we have amassed and how much we fit in to our daily lives. The aggrandisement of frantic living is definitely not for me, so just as well I live in a sleepy part of the countryside and can sink into the gentle pace that is so much more beneficial.

I need to reign it in and rest, rest, rest. 

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

'You are the doctor too...'

Have you got that jittery feeling?

Yeah, me too! Time has passed by so quickly over July and August perhaps because I'm willing my body to heal and function better than before I went in for my op. Yesterday proved how time is still needed and healing processes cannot be rushed even when  your head is telling you, 'get on with it'. I still feel a long way off from 'normal'.

Yesterday I took a trip out to a garden centre, ate lunch on a particularly uncomfortable chair, walked around a bit and felt bone tired and in need of rest after. I felt my demons surfacing, the usual self-loathing for not being as healthy as I want to be but a pep-talk by my partner helped. I am the only one putting pressure on me, no-one else is. I've allowed myself so far to surrender to the process and it really helps having a philosophical outlook. Talking really does help sometimes or you just let all the monsters sabotage your own unique way of approaching what your body is telling you.

If you start all actions with creativity then you will succeed. I start with nothing but that, it is a burning hole in me, the fuel that expunges the words from my soul. The poet, Rainer Maria Rilke, speaks to Franz Kappus about such a feeling advising him to:

"...remember that sickness is the means by which an organism frees itself of foreign matter; so one must just help it to be sick, to have its whole sickness and break out with it;...you must be patient as a sick man and confident as a convalescent;...you are the doctor too, who has to watch over himself. But there are many days when the doctor can do nothing but wait."

So I wait...settling into my solitude...

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.

My post-op reading list...

"There is no time for boredom"...

I have used my healing time also as a time to read, which is a great use of time. Here is a list of books I have read:

Life After Life - by Kate Atkinson
Perfect - by Rachel Joyce
One Hundred Years of Solitude - by Gabriel Garcia Marquez
Pride and Prejudice - by Jane Austen
The Great Gatsby - by F. Scott Fitzgerald
The Letter in the Bottle - by Karen Leibrich
Case Histories - by Kate Atkinson
A Cat, a Hat and a Piece of String - Joanne Harris
The Lover - by Marguerite Duras
The Luminaries - by Elinor Catton

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.

Turn your negative into positive...

Bio-oil and arnica cream...

after showering each morning I have my routine of putting arnica oil on my bruises (yes I still have them!) and then some bio-oil on the incision scar. I still feel very swollen and tender although I am progressing each day so trust in the process of time.

I've been having a bad time sleeping with the position I have to lie in, I cannot lie on my sides as it pulls too much on my belly so lying on my back is not ideal and causes my legs to become restless.

My mum comes to take me out as it is a glorious day, warm with sunshine so we sit outside at the garden centre. I feel quite lightheaded walking about and I'm SO SLOW even the old women with trolleys overtake me!

Tiredness overtakes me too, even the slightest activity leaves me knackered but I'm thankful for all the help I'm getting so far.

Holistic Treatments to help after hysterectomy...

Choose a holistic treatment to aid your recovery...

If you feel anything like me after having surgery you will want tender, loving care and not a full on massage which can probably be detrimental anyway if you are still bruised inside and sore outside too.

Some gentle treatments that can really help include reflexology and you can find one near to you via:

Association of Reflexologists

I am lucky enough to know therapists in my area who practice many different types of therapy so have found homeopathy, reflexology, cranial osteopathy and acupuncture all widely available and very effective at getting me back on track.

My homeopath has prescribed me:

Staphysagria - for post-surgical pain. read about it

Arnica - for bruising and trauma. read about it

Thuja - a fascinating remedy that taps into the divine feminine - read about it

Today I had my first cranial osteopathic treatment with one of the best practitioners I know. This is not to be confused with conventional click and clunk osteopathy that realigns the bones and joints and ligaments but a more gentle intuitive type of therapy. I have found it most effective in dealing with the excruciating symptoms of endometriosis in the past, especially chronic pelvic and back pain. If you are responsive to subtle, gentle approaches I'd really recommend finding a good cranial osteo and have some treatments. I find myself just wanting to sleep very deeply afterwards which seems to be my body's way of realigning itself, like a mini-hibernation.

Here is a link to my fabulous osteo

Be kind to yourself - treat yourself as you would a thing that you love most

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

POCT or Post-Op Commentary Talking

Talking to yourself is absolutely normal....

Today has been a real test of my energy level management - I love my friends but have found that talking and being present with them has left me floored for some time afterwards. I feel it's the actual process of concentration and being alert, plus being limited at movement prevents me to get up and play hostess.

My rational mind tells me I mustn't over-do it or I could set my self back so I talk to myself - a skill I learned on a workshop once called commentary-driving, only I call this Post-Op Commentary Talking. 

It goes something like this:

"I am now going to gently ease myself out of this chair and stand up. Now I am mindfully going to walk to the kitchen to fetch a glass of water. Oh look, there is a pair of shoes that have been carelessly left in the middle of the room but because I cannot bend down I will not attempt to move them but register that they are in my pathway causing me to navigate around them and not trip up and land flat on my face..."

Talking of limitations, obviously I'm aware that I can't hang out of upstairs windows to wash off the seagull shit so I ask my extremely keen to please partner to do it, as it is impeding my view of the clouds! (Actually he wasn't that keen - who would be?)

Going off on a tangent, can I recommend fruit to you. It's blooming marvellous considering nearly two weeks ago I was almost passing out on the toilet with 8/10 pain, this has reduced to 3/10 discomfort so 'well done body' - remember with POCT you can actually tell your body how well it's doing at healing.

Now for a fruit salad...

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.

Aren't showers blooming marvellous...

I feel clean clean clean clean.....

Hooray, hooray the catheter came out today nearly three weeks since surgery. Goodbye plastic friend who gathered my urine day in day out, I will not miss you one bit.

I cannot tell you how much freedom I feel and it really wasn't that painful (men make a bit of a fuss apparently due to the longer length - these were the nurses words not mine). I quaffed a jug of cold water and managed to pee exceptionally clear urine - twice - had an ultrasound and was told there was a little teaspoon left in there but it all looked fine.

The nurse also kindly looked at my scar which was clean and hadn't bled for 4 days so advised to leave the dressing off. So I did. Thanks nurse. What I didn't envisage was needing a wee so quickly after leaving the hospital so spend most of the journey home in agonies and had to rush (well shuffle at a quicker pace) up the stairs as soon as I got home.

Joy of joys I love to shower, it is so refreshing to feel clean running water wash away all the detritus associated with recovery.

The weather has been hot and dry so I can lounge around drying naturally and letting my body use the balmy air to soothe it. Summer is my favourite season, the light and heat a natural remedy. My pet cat is being careful and affectionate, using his innate intelligence to sense that something is not quite right with me.

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!

Anybody out there???

How many women feel abandoned after hysterectomy...here are some support options where you can join forums and chat to other women who share their experiences:

The Hysterectomy Association

Endometriosis UK

Hyster Sisters

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.

Almost everything hurts except my fingers...

I am acutely aware of all of my bodily functions right now....never ever take them for granted...

It is useful to remember that even though everything hurts it is hurting for a reason, to make you be still and heal.

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.

It's all about me, actually!

Getting well after surgery is a personal thing, some like company and lots of fuss while others (like me) prefer to quietly sit like a wounded cub licking her wounds....

The World Cup Final, not that I care in the slightest but some people do especially if they are Argentinian or German football fans. I wake from such a heavy dream filled sleep leaving my body set in concrete and aching in my abdomen, a dense kind of pain as if I'm drowning within myself.

Mornings are always so testing. I get up slow as a sloth and manage to empty my bowels without too much prolonged agony. I feel better after washing like a deranged bashed up old hag leaning on the sink and sponging my body.

The catheter sits like a plastic leech on my leg, now I'm producing warm elderflower cordial and find pleasure in categorizing my wee into various liquid refreshments as it is on display; rose wine, weak ribena, scrumpy medium cider, peach squash, lemon liqueur.

I enforce my boundaries to refrain from visitors which includes pretty much everyone except my mum. This is my surrender moment, a time to heal and I'm not going anywhere so there is no point in resisting it. 

If you resist what your body needs, your body will stop you and make you surrender in no uncertain terms. Be kind. Treat yourself as you would a dear friend.

I have found my diary or blog a preferred way of expressing all these inner feelings, a cathartic release of sorts. Naturally you will have friends who want to see you bearing gifts and tidings of goodwill but it's not about them. It's about you. If you don't feel up to visitors make that clear and tell them you're not ready. There's plenty of time to convalesce when you can enjoy their visits especially if they are offering you specific support. Fetching a few shopping items for you, making a bit of lunch, doing a bit of vacuuming or ironing can all help. 

You need to empower your inner manager and prioritize what it is you need right now.

My main reason for not seeing too many friends in the first week home was because they make me laugh.

"Laughing really hurts after abdominal surgery - stay miserable a little bit longer!"

Support and routine to aid recovery

Keep positive...you will get better....

Advice for a healthier recovery period:

• Drink water all the time - keep your body hydrated.
• Fuel your body with clean foods, fruits, vegetables, fibre, seeds, nuts, pulses.
• Mulkosan is a whey based nutritional drink that aids digestion - my friend gave me a bottle of this, you can drink with water or fruit juice.
• Ask for help - you will need it in the first few weeks after surgery to do the most simplest of tasks, like fetching you drinks, meals, washing up, cleaning the house, making your bed, lifting things, driving you to appointments and generally being there to help. 
• Have a routine, get up out of bed, it does make you feel better when you  are upright for a bit and gets the digestive gases moving down and out, if you get my drift.
• Be mindful that everything takes more time than usual.
• Sleep.
• Rest.
• Shower daily when you are feeling able to, remember to let your incision dry fully so it can heal well.
• Set daily aims no matter how mundane they may seem, every step towards recovery is a step in the right direction. I love reading, doing puzzle magazines, listening to music and watching films so if your operation is planned why not line up a few books, make some playlists to put on your ipod before you go to hospital, line up some films to view that you've been meaning to watch for years.
• Most of all - listen to your body -rest, move a little, eat, rest, cleanse, breathe slowly and deeply, sleep, hydrate, smile.....

Connecting to nature when recovering

Listen to your body, good advice on any occasion but especially following major abdominal surgery like hysterectomy....

When you leave hospital your biggest teacher and nurse is you - your very own body. I find that nature is also a great teacher, it has a natural process that when forced just doesn't work, for example, if you see a bud on a flower you know it will eventually open and become a full bloom with the right conditions, but if you try to force it open with your fingers the petals will bruise and be spoiled. That is how it is with all organic things including us.

The weather has been gloriously hot, sunny with a cool breeze today. I decide to sit outside in the garden which is slightly uncomfortable but pretty much everything is uncomfortable right now. My belly is distended, feels really tight and sore, I ache with every movement either standing or sitting but I know this will pass. The bruises on my skin will fade in time.

Outside in my garden our beautiful plants are in chakra colours, red, orange, yellow, green, blue, indigo and violet with white and pink all interspersed and healthy. I adore them all like my pets and feel so much gratitude for all the plants attracting butterflies and bees. For a moment the physical challenges of my body fade when I meditate on the movement of the insects around the flowers and the breeze through the branches of the trees.

In the words of John Denver - you fill up my senses.....

Bowel issues

Oh dear, my healthy appetite plus iron tablets plus abdominal surgery plus inactivity has led to this no laughing matter...let's talk constipation....

When you have not had a bowel motion for four days then seriously consider all forms of laxative or an enema. When I had endometriosis on my bowel I experienced severe pain but that was nothing compared to post-op  bowel blockage pain - it really, really, really hurts.

I have been drinking plenty of water, eating veg and fruit, natural foods etc but the effects of the iron tablets, codeine and surgery have bunged me up like a cork on a bottle that has been at sea for decades and nothing short of dynamite will ease its constricted state to release its contents. On that oceanic theme, I can tell you not to be regular makes me crabby  - it may sound strange to you but I can almost cope with all the other failings of my poor body when I've had a good shit!

Other things to consider while we're getting down and dirty:

• The catheter is my friend (at least at night time) - I've been sleeping like a log (not sure who first came up with that analogy as logs are the least likely things to sleep having all manner of insects crawling about inside them), so deep in fact that when I wake I feel strange and heavy (perhaps that's where the log theme comes in). For example, last night I weed 1000ml into my night bag so thank god I didn't have to get up and down to the loo.
• Feeling lethargic, breathless and broken from hours of surgery plus drugs plus a drain in my side, plus a catheter, plus a couple of canulas (one of which decided to eject itself from my vein thus depriving me of morphine), then my body being pricked for blood, injected with anti-coagulant, quaffing pills like a raver at a festival....
• Two bags of someone else's blood later and I'm told I'll feel like a new woman (that's infinitely better than being told I'll feel like an old woman or a used woman for that matter.)
• Poo Poo Poo Poo Poo - my specialist subject. Ask me anything about it - don't be shy, it's got to come out in the open sooner or later.

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."

Last day in hospital

Goodbye Room 25, I have written you a poem....

Seagulls patrol like marine creatures

Standing sentinel on roof tops twitching like robots

Lifting their wings like fins in a sea of expectancy

To catch the breeze. I lay stranded, a beached balloon

In a shroud,  pinned down by tubes and bags.

Clock-watching is my new hobby, 'time' they say,

'take it'. Two weeks, six weeks, one year. 

Me here, waiting for time to heal, listening to

the rattle of cups moving faster than I can.

The sky today is dusted with the promise of home.

I can hear it in my thoughts now the morphine

drip of the past has slipped from my vein to

leave a purple kiss on my wrist. My body

covered in the surgeons fingerprints, a dot-dot- dot,

dash-dash-dash of morse code on my skin.

I whisper thanks for the blood, the veins it has come from

to meet me here in this bed, in room twenty-five.

---

My last day in hospital so I haul myself into the walk in shower and sit on a chair to cleanse my body as best I can. These things take so much longer than usual. I decided to stay another night as I need to be more mobile if I'm to get home, walk up and down stairs and get myself to the bathroom. So I walk out of the room I've been in for 5 days, feel completely knackered, come back, sit down, watch TV, get up, have more blood taken to see that I'm ok after the transfusion, empty my catheter bag, sit down.

My friend visits me in hospital and I try to explain to her all that has gone on, I feel really tired when she leaves which apparently is normal. Anyway, I motivate myself to walk to the day room and back which is quite a long way down the corridor, I feel really hungry today. I am better when lying flat as when I sit I can feel my insides pulling and aching.

I dream of a delicious platter of organic salad: tomatoes; cucumber; sprouted seeds; grated carrot; rocket; black and green olives; red pimento peppers; feta cheese cubes; chives and olive oil. Mmmmmmmmm!

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.

A visit from my surgeon

Highlight of the day is....

chatting to my gynecologist, the kindest most compassionate surgeon I have ever encountered. He has a manner that refreshes like a cool breeze in a forest clearing, he makes me feel better just by being in the same room (bit ironic really), he is rare, a jewel, a shot of elixir in my veins (or it could be that the drugs haven't worn off yet).

It seems I am popular today, a delicious young doctor who hopes to be a GP when she has finished training comes to take my blood. She hardly makes a mark on my already poor bruised arm, it turns out I'm anemic which pretty much explains the woozy head when I stand up, the extremely low blood pressure and general feeling of being a transparent sheet of tissue paper.

I'm holding out for an egg mayo sandwich on brown, this is what I ticked on the menu sheet yesterday although what you select and what you get is a lottery. 

Oh and I stood up after shuffling on to the edge of the bed, then I sat down again! It is not easy being attached to tubes and bags filled with your own body's fluids.

Result: I get my egg mayo sandwich and a delicious pear! Little things and all that...

Here is my mantra for the day:

Every day I heal more easily and regenerate to become healthy and stronger. 

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???

Bed bound

Things you notice when you can't move....

As you've probably guessed I love writing so will scribble away about almost anything to pass the time and keep me sane. I had taken my notebook with me into hospital to record my account of having a hysterectomy obviously not expecting to feel as rough as I did.

So I just decided to observe those things around me and here is what I wrote:

...on my right side attached to a catheter, a bag of rose coloured pee, ranging from claret (yesterday) to elderflower cordial (today)...

...drugs have their place, thank you opium fields...

...on the wall of my hospital room I can see:

• a Danicentre glove and apron dispenser, blue gloves in the shade of the Caribbean ocean in small/medium/large. It looks like a 3-eyed old square faced man, its mouth set like a pith helmet.
• below, a green plastic dispenser called Clinell containing an open pack of wipes
• above the white ceramic sink, some Purell liquid soap and chrome fittings. A Gujo gel dispenser and Tork paper towel unit
• then some art as an antidote to the clinical fittings - a black framed photo print of a stream, green banks of long grass and luminescent weed travelling in gentle water. It speaks to me of seclusion, wildness, a brackish past set free by fresh flow. In the far right of the picture there is a turn in the path of the stream suggesting its history, it has come from somewhere unknown but will continue from this point I see before me. I am drawn back to the clump of long grass like a horses mane brushed by the current, coloured to a sandy stripe amid the dark water....

enough of that....

• there is a clock with 24 and 12 hour markings, the second hand in red.
• on the bathroom door is a wipe-clean 'Daily Aims Board', my daily aim for today is have a proper fart (there is a medical term for this but no-one ever uses it and anyway fart sounds more satisfying, it's proper onomatopoeic. I have achieved this daily aim. Another daily aim which seems an obsession also of every nurse who visits me is 'have you had a bowel movement yet?'. Sadly not. However, I have eaten half a weetabix with milk; 2 bourbon biscuits; some veg soup; cucumber; lettuce; tomato; some strong coffee; some herbal tea; cauliflower cheese and a hot chocolate.
• I am told I must 'mobilise' more before I'm discharged. This is difficult when I feel so weak every time I sit up or attempt to stand (more about this later).
• Next to the Daily Aims Board is  yellow sign with a drawing of a white toilet (clearly a male toilet as the seat is up!)