My mum is making good progress. Yesterday I suggested we just amble around the block and look at the gorgeous mountain that stands behind her village. The sun was out and we walked gently enjoying the day and the moment.
During the day she had some sharp pains and I was slightly nervous. But she showed no sign of temperature and these came and went quite quickly. We upped her fluids and food was made more sloppy for the day.
Today she had a few pains again but less than yesterday. I do go on high alert - I think I am actually extremely nervous. Hard not to be when she has been through so much. But I have to remind myself that actually the odd day of pains is not untoward at this stage of the healing.
We went out with a dear friend to visit some shops that have been built on the grounds of a magnificently renovated old mill. We ferreted around a bead shop and I bought some interesting bits and pieces. The idea is to sit at night and make some necklaces but the truth is usually at night I am dead tired. It was a long day but a lovely one. My mum walked a lot but we paced her quite well and took frequent breaks including a lunch break. I had pork with braised apples and cabbage - absolutely delicious but you know - cabbage is cabbage. And the DS is the DS. Say no more -lol!
At home our friend sewed me a stunning skirt in less than an hour! I had bought some fabric a beautiful shimmering brown texture and it looks terrific on. I’m dead pleased.
Spoke to my hubby tonight and suddenly a deep wave of missing overcomes me. This is the longest we have ever been apart but still I would not be anywhere else right now. Seeing my mum make daily progress is the best gift I have had in a long long time. I so enjoy her. We share the same humour and we do laugh a lot. We are very close. I think I said before that she is much more than just a mum to me.
She must be recovering for we pepper our conversations with dreams of spending christmas together in the UK or perhaps even traveling a little if she feels up to it by then. Today her protein intake worries me a little…she does need more but she just refused point blank to drink a fresubin. Can’t say I blame her - they are revolting drinks. I tease her - if she won’t rest she must drink two of the evil fresubins! If she won’t eat enough protein at her mealtimes that’s one more fresubin coming her way!
Seriously though, I think tomorrow I will make her a fresubin shake with ginger tea added and papaya. She takes it better that way. Milk is out for her - she hates it so it ain’t easy!
I only have around 13 days left now. So I must work harder to aid her recovery to the max before I go. I also need to do housework here - clean all her cupboards out and make sure the place can operate smoothly when I am gone. There is much to sort out still. What is rather dear is that today for the first time she attempted some light chores. She also bought a few things for her house to make her life easier. These are small things but they signify that she is starting to settle down not just into her body but also back into her life.
On and off I go out with friends in the afternoon. Her tenant then watches over her until I get back. I won’t leave her alone. It’s so comforting for me to experience the network of friends I have here - they are greatly supportive and wonderful people that touch me greatly by going out of their way for me and my mum. The support they have given both of us is just unparelled.
Last week I met a puppy at a friends house. A small but perfectly formed bull terrier. We have always loved bullies. We lost our special old Tao last year and we had felt to get another bully was out. We loved Tao dearly but justified not getting another based on the idea that we could never replace our love for her with another. Plus the constant white hair on our clothes had, although we chose to not fuss over it, driven us slightly crazy over the 16 years we had her…hence the Chih Tzu decision as they don’t moult much. Anyway - one look at the bully pup and I knew we needed to brush that aside (literally)and that a bully the next dog should be. This small white animal just captivated my heart so much & I had clear insight cuddling it. Who could resist these pups? They are a wonderful breed if properly bred and reared with care and understanding. Bully dogs are Pete’s soul dogs and also his childhood memory dogs so I called him to say when we could afford it, scrap the Chih Tzu idea, we would get a bully puppy after all. He was delighted and think relieved at my change of heart.
To cut a long story short yesterday my ma sent him the money for a bully. A hugely generous gift and one we can never thank her enough for. It was never expected in a million years but she was adamant. The excitement emanating from our home in the UK was tangible. Luke, my boy child was on the internet in minutes searching for just the right pup. So we shall in the next few months find Pete his bullie baby. I know it will be something he (and we ) will treasure all the years of it’s life, not just because we are getting our pup after all, but because my mum could not have done a more wildly generous loving and thoughtful thing for us. 
So we go onwards in life and I think it is rather wonderful how we have taken the disappointment of losing our scam Shih Tzu pup and ended up with the reality of being able to get Pete a breed of dog that he loves. I understood that the time was not right in the light of everything that happened to my ma, and I think it is profound how somehow the Universe, God, whatever, always shows me that in the end things really do work out for the best. At the time of disappointment we cannot possibly see the bigger picture of what lies ahead in life. I better begin to trust more in that bigger picture now!
Pete and our family will have our bully and even more importantly we also have our ma and grandma back from the many brinks…so I sit here writing and feel profoundly lucky & blessed.
I hope as I write this my mum is sleeping well and peacefully. I feel that we might at last be walking her back into life. I don’t dare hope to hard just yet but the signs are promising and her progress so far is really good.
I think a while ago I wrote somewhere that complications are merely statistics until they happen to you. I should add to that ‘or to someone you love.’
My poor mum has been through the doors of death three times and through surgery four times. The last 3 surgeries were days apart. At any age that’s some mean feat. At nearly seventy it begins to border on the extreme edge of human limitations.
The surgery was on her sigmoid colon to cure diverticulitis that was inflammed and which had bothered her almost all of her life.
I have lived out weeks in hospital, pacing the floors, waiting for yet more bad news or sudden crisis. It has been a nightmare born into reality. I’ve visited complication land from both sides of the coin now…both my own and my mums. I think I clearly needed to experience these horrors - perhaps the gods way of teaching me many lessons about endurance, compassion, the power of love, the hidden strength we do have deep within us, transcendence of what is irrelevant junk really even though we might think it so important. Such times strip things down rapidly until we percieve the finer more translucent qualities of human life in the opaque thickness of chaos and fear.
But I do wish the gods had rather left me content with a textbook or two. Or at least spared my mum from being unwittingly my greatest life teaching. Still, this was not the way it was to be. I think the gods must feel the best way with a thicko like me is to plunge me deep into the tacky mire of existential experience. Hands on - float or swim baby.
As it was I think I sunk more than I swam, watching my deathly ill mum struggle for her life, lips blue, skin waxen pale in a land of pethadine and pain. I have endless flashbacks…me standing helplessly by her bedside under flourescent lights with my heart heavy, my ignored bladder swollen with fear. Me exhausted from a rotten stressful flight and a tense ride straight to hospital, running up to the first floor of the hospital and there she lies, my mother, my pride and joy in my life. I barely recognised her, this frail delicate pale faced brave brave woman who in the height of terrible pain smiles at me somehow through the veil of perspiration that swathes her. I hold her hands willing her to pull through but I know this is very very bad, my heart is aching and aching to see her in this state. A long day where I cannot leave her alone but I also cannot relieve her suffering. I was never more aware of my metaphysical heart, it was knocked askew and flattened by that sight. Me on the phone to mum in the hospital chatting merrily about her happy recovery from op number two and then this shattering screaming on the other end ‘help me someone god help me someone’…and the phone hanging limply in the air as I hear voices and pandemonium on the other end. I spiralled right out of myself in those moments then got a grip and called the ward from another line yelling-begging them to call her surgeon quickly as quickly as they can. Then the silence when I stop yelling down the phone and the old familiar sense of helplessness and powerlessness in a surgical world gone crazy. I see my darling ma, tubes everywhere on life support machines and adrenaline that causes her to shake like an autumn leaf in a cold wind, her body still paralyzed from aneasthetic, her eyes glazed, yet I know she is with us. I try to reasurre her but tbh I am nearly crapping myself at the sight of her. I try to tell her that although she is paralysed it’s okay, she will soon feel her body again. She mouths at me with all her effort of will, tubes lining her throat ‘don’t go’ around the tubes….silent words. But the nurse must attend to her and I am forced to leave her in the drip and pulse of adrenaline, paralysis of the body and in the jacknife of fear that surgery borne out of complications is. Toughest moments. Sleepess nights. Ever waiting for the surgeons to come out of surgery and please dear god tell me she is okay. Please please. And this timelessness, I forget hours and days. I can only think of pulling her through all of this somehow, of what I can do to make it all a little bearable. I have no other focus. I forget everything else…my family go on the backburner, willingly and lovingly of course, my plans for the future are forgotten, scuppered they turn to dust in the face of this. My DS peers and dear friends are neglected. All else except her surviving, ceases to matter.
I wake up each morning and I am truly in the here now. There is no designer plan for complications out there. I do what I can moment to moment. That is all. It sounds simple but it is not. And I am not choosing it either at the time. It just happens.
Now that I breath easier I see that actually it is the right way to live because living like this has it’s own power. I got some clarity that ordinarily would not happen in the racing mind realm. I lived by intuition and this has a clearer intelligence I think than the way I ordinarily live..basically by trying to figure things out in a hyperkinetic mind funk.
I don’t recall dates or time. It’s a hazy blur of hospital smells. I did’nt eat well, I only just managed to remember my vitamins. I started to lose weight rapidly but was not cognisant of it until my jeans started to slipoff my waist. I sat myself down and reinforced that if I did not get with it I would be asking for more trouble and who needs more trouble after all of this? I started to pack the old nuts in the bag and drink copious bottles of revolting choc mint milkshake from the hospital cafeteria. I hardboiled eggs and cut thick chunks of cheese which I threw into a plastic bag for quick protein. And then my ma started to come back to us. Slowly through the glass doors of surgery number 4 I started to see her return.
Only then did my head fill with all the what if’s? All the guilt that I could have somehow pre-empted this all… I am brilliant so at the guilt thingie I should get an honorary doctorate!
The truth is complications will shake people upside down into another world. It’s hugely disorientating. There is no time to sit and ponder the lillies. There is no expertise in us relatives who watch helplessly and sometimes hopelessly and our power is so very very limited. Decisions are made in the breath of dying light and fading bodies & hope is just a desperate prayer in the long days and nights. It’s a god defying feat to push emotions away in a bid to find clarity and logic in a world that is to be blunt, terrifying. It can’t be controlled and the speed and velocity at which things change is unbelievable. There’s no choice but to enter the very moment of now fully and to let go and go with what is. I learned a big lesson. As usual.
How quickly we wake up to the light of other peoples complications fingers pointed with all our impartial observant judgement of ‘why on earth did’nt they?’ ‘If only they’d xyz…it would never have happened!’
I’ve seen it before. I always thought it but now I KNOW that all of this is useless rubbish anyway. The best researched can and do lower the risks significantly but even then - it could happen. One might not be spared. One might pound away at ones self with the old hatchet of retrospect and dwell on the past all one wants - but the thing about complications is this, complications only exist while they are actually happening and that’s the reality. And that is where they shift in a weird transformation from being the stuff of abstracts into being concretely and horrendously real. There’s no handbook written about how one should act or what one should do, for the layman anyway.
And here I might add that the risks of most surgeries are indeed small compared with the benefits. I don’t mean to scare anyone, or create untold fear for those who are pre op. Most people walk through the door of surgery smoothly and recover uneventfully. Most have the odds stacked for them, not against them.
But I tell my story not for those people anyway. I relate it here honestly and after much thought, because I always have been for us talking these matters openly. Just because risks are generally low, does’nt mean we should sweep these things under the proverbial carpet. I always felt that and I have always opened my big fat mouth about it.
But also, I am thinking right now of those people that are currently undergoing their own worst nightmare and I am thinking of those who love them, who must witness and journey with them through the dark nights. Who must cling to shards of hope and who lose the very time of day.
This blog is for you. I want to dole out all manner of good advice and comforting words now that I sit in the aftermath and my ma is miraculously still here tucked in her bed, peacefully sleeping tonight, but I know it just is not that simple for you right now. All I can say is that I wish you strength and love. Deep down these are the only constants for us that witness or undergo complications. So stay close to these qualities through the difficult and often confusing times. Clarity will come of it’s own accord and then you can truly be there as a loving presence for your loved one. I remember how very much this comforted me when I was going through my twisted bowel experience. Much more than I could ever tell my husband and children in words. Loving presence is everything in a sterile world. It gives one the strength to continue trying to live.
And stay calmly with the facts. Even though the facts might be scant they are much closer to the truth in such situations than emotions.
Remember my mum is still here and so am I - survivors. So it is possible to get through these things and to live yet another thankfilled wonderful day.
My mum is home now and as I write the struggle for her to regain her health continues. Her wounds became infected, she has a deep hole and a lesser one that need irrigation & packing and she has had to adjust to a colostomy bag. She also usually is an energetic doer of a person and so finding herself in a body that refuses to live by her will, is sometimes very trying for her. Her nurse comes daily to dress & pack the wounds and sometimes I still get gripped by fear for her and all of us when she has an off day or too many night sweats.
Several things about her surgeries bothered me and I had lost some confidence in her surgeons. More importantly so had she. I won’t go into details as of course it might be that she was just ‘one of the unlucky ones’, and it is possible that because I read her so overcarefully and nitpick by nature that I see things in a bigger light than they might medically be. And then at nearly 70 years old the already big risks of diverticulitis surgery are even riskier. Complications can occur in the most expert hands, I know this. I don’t harbour any ill feelings towards her surgeons at all, nor does she. To a degree it’s natural for the patient and patient’s family to have faith compromised when surgeries fail, and it is very difficult to decipher these situations. Fear is not pleasant to live with and one has to try to get a steady allround picture before one starts a blaming game unless the care has been blatantly negligent. I’m still not sure it was. But I also can’t say if it was blatantly adequate either.
Still, my questions were too many to be answered and things started to come to light that we never anticipated and that could not have been anticipated either. So after deep deliberation we decided to move her into the care of another practice. It is one heck of a tough call to transfer to another surgical team. Instinctively one clings to one’s surgeon after any trauma. So this in itself is a very stressful move at such a delicate post operative time and possibly even risky in itself, but I had plenty of universal prompts in this surgeons direction. Thick I might be, but I believe in the power and direction of guidance & synchronicity and I recognise it when it is coming at me.
Still it was a hard call. I could not really understand before how a patient, clearly suffering and clearly miscared for could remain firmly loyal, and sometimes even sing the praises of a surgeon against whom the evidence appeared negatively stacked. I think I understand better now. Fear makes one cling. Being in the unknown, makes one need that which is known. Being weak and ill makes finding another surgeon a formidable task, just the sheer stress and energy required to do it is frightening in itself.
Many times as I stressed over the decision to transfer her at her most vulnerable, I realised the true value of a forum such as our WLSinfo that allows the patients to get unique insights and to do a proper portion of research (note a portion, not the whole mcoy!) before surgery. Here in South Africa such forums don’t exist, certainly not for colorectal patients. Here politics in the surgical field still runs rife. People still rely heavily on their GP’s recommendations. Research is very very limited and word of mouth prevails.
Anyway long and short of it - I’m relieved we did because her care is now extremely thorough and of a very high standard. Her current surgeon only specialises in colorectal surgeries & has a very good reputation. I’m still aware that with research being very limited here I can’t get blase just yet but just the actions of this surgeon hugely reassure me. I believe the thorough check-up he did at her consultation via endoscopy very possibly nipped another potential problem in the bud which might have ballooned into another major crises for us. Yup, I hypothise as usual but the situation is still just too delicate for me to think that left as she was, she’d have been fine.
For the first time we have real optimism on our side about both her recovery and her future. Getting her into the hands care of this surgeon was a relief for her. I swear she just seemed so much brighter and more confident after the shift. Our optimism may be tentative after all this trauma, and it’s early days still, but it’s there. After all of this it’s good to feel a seed of hope rather than of despair.
Best of all she is taking those babysteps we all know so well, back into LIFE. And believe you me she get’s in her protein and nutrition for tissue repair and wound healing everyday, because the protein dragonlady is on her case!
I am grateful for every hour of the day I spend with her. She delights me with her sassiness and humour in the face of great adversity. I chuckle when I think that even when she herself was so frail and ill, she still wanted to know how the other patients in the ward were doing. She still had the greatest empathy for others and even though she was so weak she could barely speak, she always put kind supportive words out to others in need. She took the time out and made the effort to ensure the ward nurses had a cake for their tea to thank them. She even consoled visitors who were clearly distressed to see her in the state she was, for goodness sakes!. She took things in her stride even when she was extremely traumatised. She was simply bloody magnificent and her wonderful spirit shone through all of this. I’m proud to be made of her blood and bones. She’s the biggest inspiration in my life, my mum.
