One thing is for sure: we’re still losing the battle…but we aren’t giving up.
Hana’s Hypothalamic Obesity…
Hana hit 51.4 KG this week. So she’s gone from 21.4 KG January 2014, to 51.4 KG in just over 12months. Can you imagine what that must be doing to her body on the insides? It makes me feel sick to think about her liver, her heart and the threat of Type 2 Diabetes looming on the horizon. She had an oral glucose tolerance test a few months ago and this showed that her body churns out enormous levels of Insulin – both fasting and with glucose stimulation. What this means is that her brain is stimulating her Vagus Nerve – which connects to her Pancreas – to constantly pump insulin. This contributes to her sensation of constant hunger but high levels of insulin can also cause weight gain, brain fog and irritability…
My aim for this blog is to have fun. To recount the fun experiences of my own life and mostly that is humorous, delightful and fun, even in the face of adversity we try to laugh. It isn’t always easy. Life can also be difficult and challenging, as I am sure you will agree. So, today, I am sharing a posting by my inspirational step daughter, Naomi. Today, she and her daughter Hana, appeared on Sunrise channel 7 in Australia, talking about Hana’s medical condition, which many of you who read my blog or visit my Facebook page will be familiar with.
Hana was diagnosed with a brain tumour just over a year ago. We all hoped that the removal of the tumour would be the end of the problem but sadly the problems really only then began.
In Naomi’s own words ‘
‘When damaged from a tumour, surgery or an accident, the Hypothalamus can go totally crazy and for some really, REALLY cruel reason seems to do all it can to make that person morbidly obese. 75% of children become morbidly obese within the first six months after their craniopharyngioma tumour is removed.
Firstly, the appetite control centre messes up. People, kids, like my daughter, stop receiving messages of ‘fullness’ after eating. In addition, hormonal signals such as ‘leptin’ from fat tissue stores also get ignored, these signals would usually inform the brain that the body doesn’t need to eat. The result is a brain that thinks the body is physically starving. Now, we all know how hard it is to concentrate on anything when we’re really hungry. A brain that thinks the body is starving will only be able to think about things other than food for short periods of time. My daughter asks for food every few minutes of the day and, when one meal is over, will immediately start planning for and asking for the next meal.
Hana is getting bigger with each day. I saw Hana eighteen months ago four months before her tumour was removed. It breaks my heart to see what is happening to her. I’m uplifted whenever I hear her mother speak. I’m in awe of Naomi’s tenacity in the face of what must, some days, feel like such hopelessness. She never gives up.
The way I feel we can help is by sharing her blog posts and her Facebook updates. It may just reach someone who can make a difference.
I’ve posted the link to the video, please watch it if you have a spare moment. You can read more about Naomi at her blog Nurse Naomi here. I am re-blogging the most recent posting. I hope you will take the time to read it.
How to write about dementia? How to write about your own mother’s dementia? I’ve thought often about expressing my feelings and putting them onto paper and then publishing them on my blog. I’ve then thought no, this is a blog about fun, about humour. But you know what? There is humour in Dementia. In fact there is humour in everything. It isn’t always easy to see but it is there if you look. I’ve just returned from watching ‘The Theory of Everything’ and there was plenty of humour there. Of course, it isn’t easy to see humour in tragedy but it is the best way to get through life.
Writing about dementia and writing about mum is particularly hard as I’ve never shared much about her. Of course when one has a family member with dementia the fear is always there that dementia will get you too and what is most likely simply forgetfulness becomes a churning fear in your stomach. Am I stressed? Am I just doing too much, or could this be the start of dementia? It’s most likely the beginnings of old age but, of course, the fear is there.
The worst thing about having a parent with dementia is when you want to ask them something about the past. This can be heart breaking. A year ago I decided to look into our family tree and then realised I couldn’t. Those that could tell me things were either dead, or like mum, have dementia. I have no way of learning about the past. I have some photos of mum but I’m sure there were more but I can’t ask her what happened to them. I’ve recently become curious about how my parents met, what their life was like before they had me. Mum told me some of this many years ago but of course as time goes on all kinds of questions are raised in your mind. For example, I’ve just started learning to play the piano. I remember my mum playing. I have vague memories of her telling me about my grandmother’s piano (my maternal grandmother died before I was born) I now desperately want to hear my mum play the piano again. Ask her how she learnt. I never listened enough because I always thought there was plenty of time to ask questions. I never knew that time was limited. That she would still be here but her mind would not. I want to ask her things about my dad, who died five years ago. There are so many questions and no one to answer them.
Mum was a great reader. She read books that I struggle with. I remember her reading ‘The Cancer Ward’ by Solzhenitsyn and telling me how good it was. This was a woman who had very little education but she knew a well written book and read many classics.
Mum’s dementia seemed to strike suddenly but of course it didn’t. People have a wonderful way of hiding these things from you. I always thought her misunderstanding of things was to do with her increasing deafness. It wasn’t until dad became ill with cancer that we realised mum’s forgetfulness was not a simple symptom of age. Sadly dad’s illness and the stress of it tipped her over the edge. I knew it was more than bad memory when I visited one evening and asked dad if he felt he could eat something. It was 6 pm, winter and dark outside.
‘I can manage some scrambled eggs, perhaps.’ He said.
‘I’ll do them,’ said mum, except she got as far as beating the eggs in a dish and then would forget what she was doing. By the time I went to the kitchen to see what was happening with the food. Mum had three dishes of scrambled eggs on the go. I offered to make dad some cereal and she then panicked.
‘Is it that time already, I’ll make us breakfast.’
It was difficult explaining to her that it was still the evening. I then discovered numerous boxes of washing powder in the cupboards, tins and tins of cat food and replicas of just about everything. It seemed my ex-husband who had been helping with the shopping had been buying everything she wrote on a shopping list. Within minutes she forgot what she had in the cupboards and requested it all again.
I now feel sure my dad hid my mother’s condition from us because he didn’t want her being taken away from him and put in a home. My dad died at home as he would have wished. The day of the funeral my mum acted very strangely and I queried would she be okay on her own. We tried to get her to stay with my sister but she wouldn’t, insisting she was fine and wanted to be alone. There was aggressiveness about her at this time which I now know is not unusual in dementia patients who have a UTI (urinary tract infection). She was insistent we leave her. That night mum was found wandering in her nightie on a dual carriageway near her home. We think she was looking for her cat but we’ll never know.
She never returned home. She was in hospital until we could find a caring home for her. During this period she was very aggressive and gave one nurse a black eye after punching her. She wanted to go home but she was not safe at home alone and none of us were able to be with her twenty-four, seven.
Five years on and she is very happy in her home. Medication keeps her calm. She sings a lot and laughs a lot. She doesn’t know me anymore. Although she tells me she loves me and I’m very lovely. When I visit with my sister she seems to know that we are sisters but not that we are her daughters. Sometimes she’ll tell me that she had daughters. She’ll kiss me and let me hold her hand. She does not know that I am an author and that my books are in the bestselling humour chart. Although, like me, she always dreamt this would happen. My mum loved books. But I cannot share mine with her or any exciting news that happens regarding my work as a writer. I miss talking to my mum, sharing confidences with her and learning about her. I miss telling her my news. She will talk to me for hours about the same things. Her dead sister and her dead brother, her mum and her lover which makes me smile. I presume the lover is my dad but who knows? Who will ever know, in fact? She sits holding hands with her best friend Doris and I take comfort in this. I know if anything happens to Doris, mum won’t grieve because she will not remember her. Such is the blessing of dementia in one sense. The humour is there too. She tells me that the men chase the woman around the dining area and it is tedious because at her age she doesn’t need it. Mum is 89! Recently when the doctor visited her and leaned close to her to check her eyes, she asked ‘Are you going to kiss
I hope she makes 90. I’d like to have a party for her and maybe play the piano for her and see if she remembers that she once played.
I’d love to hear her play the piano again and to hear my dad play the spoons one more time.
Life is hard but if mum can keep smiling then so can I?
I’m walking through Laos and not looking in the least like Karen Blixen, or Meryl Streep come to that. But it’s not like the doctor is looking like Robert Redford is it? More like Michael Douglas on a bad day maybe. I’ve not slept for 12 hours and sadly it shows. Note to self, go back to Nivea cream because that bloody expensive Rodial cream obviously isn’t working. All this ‘Come off your flight looking as fresh as a daisy.’ I look more like a wilted daffodil, which is the story of my life. To top it all guess what Lynda, who packs the house when she is going away, forgot to bring? I’ll give you a few seconds. I didn’t bring my sunglasses. It’s hitting the 30’s here and I didn’t bring sunglasses. It’s not like I don’t have enough. I have about three pairs (all back home, of course). We look at The Mekong river which is beautiful and see all the restaurants along the river front. If I felt just a little better I could enjoy this but all that is on my mind is the tatty hotel we have to go back to.
‘Are you hungry?’ asks the doc.
‘I’d rather find a hotel first,’ I say.
So, we continue walking and by now I am starting to feel like we’re doing a Kilimanjaro climb.
‘I can’t go any further,’ I groan. ‘I’m so knackered and I feel rough.’
We’ve stopped outside a small hotel with vacancies. I’ve never rushed into anywhere so fast in my life.
‘We have one room, only tonight but tomorrow we do have room.’
Am I so sleep deprived that I’m not hearing people’s words properly.
‘Can we see the room?’ asks the doctor. ‘Or do you not actually have a room.’
‘Oh yes, we have a room.’
Thank goodness for that.
‘Can we see it?’ asks the doc again.
Ah smart idea Dr Watson. We don’t want more toilet seats in our hands. Or, should I say my hands. He happily takes us to the room, which is actually perfect. Nice loo, seat stays on. Apart from the wailing rabid cat outside it is perfect. You get used to wailing rabid cats in Asia so that’s okay.
‘We’ll take it,’ we say in unison.
‘And tomorrow night?’ asks Andrew.
‘I have other room for you. I show you.’
It’s getting better and better. We accept both rooms and I trot away happily with Andrew to the first hotel, trying to work out how we will explain to the owners, or should I say the young girl who doesn’t speak any English why we don’t want their room. We can’t very well say it’s grotty can we? Meanwhile my phone bleeps with another update on Bendy.
‘Hope you got into Laos fine and were able to catch up on sleep. Attached are some photos of Bendy today, relaxing with me in the lounge and eating again.’
Oh James, you have no idea.
We arrive at the other hotel and the girl isn’t there.
‘What do we do with the key?’ I ask nervously. ‘We can’t just leave it on the desk, someone might steal it.’
We creep upstairs like burglars and quickly pack the few things we took out of the suitcase and drag all our stuff back downstairs. We peek around the corner to find the girl still isn’t there and hurry out. We decide to take the key back the next day.
Finally we fall into bed and can you believe this? I can’t sleep. Meanwhile the doctor snores contentedly beside me. The cat howling like a banshee and a dog barks in sympathy. I pop a sleeping pill into my mouth, ear plugs into my ears and finally sleep.
I awake to no sign of the Doctor. This is not unusual. I often wake to no sign of the doctor. He isn’t one for telling me where he’s off to. At least not all the time, and I blame it on him being a man.
I’ve just showered and dressed when he rushes in.
‘I’ve found us an even better room I think,’ he exclaims.
‘Oh,’ I say.
Three rooms in 24 hours, this is amazing.
‘This American guy named Andy owns a place but he’s booked, unless, of course you don’t mind sharing a bathroom.’
My look must have said it all.
‘No, right, I thought not,’ he says quickly. ‘But his brother has a place, we can go and look at the room there.’
So, off we trot. It’s hot and I still don’t have sunglasses but things are improving you have to agree. And the Mekong river looks beautiful.
Andy is very nice, if just a bit excitable and maybe a touch over friendly but you can’t have everything can you. The room is nice too.
‘Ooh, this would be nice for tomorrow night.’ I say.
‘It’s very quiet,’ Andy assures me.
Oh Good, no banshee cats then.
‘Come round for chocolate pancakes and coffee. My wife makes the best.’
Sounds wonderful. To good to be true in fact.
‘For a small charge,’ he adds.
You see what I mean, I’m never wrong.
He advises us where to get sunglasses and we make that our next stop before deciding to go back to the original hotel, you know the one don’t you? I know it’s hard to keep up but do try. After all it’s not that many hotels is it? We arrive and again there is no one there. A guy sitting on the wall outside asks if he can help. Andrew explains and hands back the key and we begin walking back to our current hotel, you know the one? Mind you, I’d understand if you don’t because even I’m getting confused now and it happened to me. We get part way up the hill when the guy comes running after us waving the key.
‘Mister Andrew, you went to wrong hotel.’
We turn and stare at him.
‘No, that’s the key to the room at your hotel,’ says my very confident clever husband.
‘No, no,’ insists the man. ‘You went to wrong hotel last night. You not booked here.’
He points to the hotel next door. And let me tell you this is a very nice hotel too.
‘You booked in there,’ he says.
‘But,’ begins Andrew.
‘Me thought you Andrew Hall.’
Andrew who? I don’t believe this. We wander slowly into the hotel and check if we have a reservation.
‘Yes sir, for four nights,’ says the man behind the reception desk.
‘Can we see the room,’ asks Andrew.
I’m getting a sense of Déjà vu.
We check the room and it’s perfect.
Somehow in less than twenty four hours Andrew and I had managed to book ourselves into four hotels.
‘I suppose that means the chocolate pancakes have just flown out of the window?’ I say.
There is something about holidaying in Asia that always makes me feel a little like Karen Blixen, you know, the woman depicted in the film ‘Out of Africa.’ Different continent I know but you get my drift.
It is rather romantic to think of myself as like her of course, aside from the syphilis, hers that is not mine. Let’s clarify that before rumours start and as lovely as Andrew is, he isn’t Robert Redford.
Anyway, back to holidaying in Asia. I always transgress as you know. So, let me tell you a little about the romance of our holiday shall I? Be prepared. It isn’t anywhere as romantic as ‘Out of Africa’ I mean, really, did you expect it to be? This is me we’re talking about. Let’s face it starting a holiday with your other half sniffling and coughing is no fun. The Doctor (aka Andrew) decided to catch the flu before we left. Okay, he didn’t exactly decide to. That would be a bit silly wouldn’t it? The point is we became those passengers from hell. You know the ones? The passengers everyone avoids. The passengers you dread will be your seating companions. That was us. Of course, you try to hide it. But it is a little impossible when Andrew had a choking fit and I’m doing my first aid bit in an attempt not to have him die on the plane. We finally arrive in Bangkok where we have a seven hour stop over and I get my first update on Bendy from my stepson James.
‘Hello, just to say Bendy is well and enjoyed the biscuits, treats and milk earlier, as you can see in the photo here. He spent most the day sleeping in the lounge, although is always welcome to go upstairs for quiet time.’
I feel a little better knowing Bendy the cat is okay but by now I’m feeling a bit rough myself and the Doctor is barely able to speak for the pain in his ear and sinus and I start wondering if he’s perforated an eardrum. That’s just wonderful. He claims never to hear me half the time as it is. Now he’ll have a really good excuse to claim he doesn’t hear my nagging. We trudge to the departure gate for our next flight. It’s now pm and we have six hours to wait for the flight to Laos in South East Asia. I’m so tired but the air conditioning is so fierce that all I can do is shiver. The Doctor lays himself out on three seats and tries to sleep. Everyone avoids us which is good in a way because at least we have plenty of seats to ourselves. If only it weren’t so cold. Seven hours later (the flight is delayed. I bet Karen Blixen never had these problems) we finally board our flight to Laos. It will take one hour and the time there is pm. We’ve lost a whole night’s sleep and feel crap to boot. But at least the Doctor is out of pain. He can’t hear a thing mind you but he’s out of pain. We both just want to get to Laos, to our hotel and to crash out. Well, that’s simple, I hear you say. You’ve no idea. This is us we’re talking about Lynda and the Doctor remember, not Meryl Streep and Robert Redford.
The plane lands and we depart with throbbing ears and sinuses and queue for our visa. We then collect our suitcase and It looks less bulky to me and I say as much to the Doctor.
‘Don’t be silly, it’s your memory. It looks the same.’
It doesn’t you know but who am I to argue with the doctor. We get a taxi to the centre and tell the driver where our hotel is. We’re dropped off and walk up a short hill and Andrew says,
‘This is it.’
I’ve never felt more relieved in my life. I trip over a stray cat and follow him to reception where a young girl greets us. She doesn’t speak English and just looks curiously at us. After trying to make her understand that we have booked a room for three nights she finally makes a call from her mobile. A man talks to Andrew in broken English. Andrew gives his name and the man says,
‘Ah yes, Andrew. No problem.’
The phone is handed back to the girl, who takes a key and leads us through a dingy kitchen, out to the back and then into the tiniest room I have ever seen. She closes the door and I look around me. The bed linen looks like it hasn’t been changed in weeks and there is a strange musty smell about the place.
‘We’re paying thirty dollars a night for this,’ I say, struggling to keep my eyes open.
The doctor looks like he couldn’t care less.
‘I’m too tired to care,’ he mumbles.
I trundle to the loo and stare at the dingy shower. Oh God, is that a cockroach making itself at home. I don’t believe this. I’m feeling decidedly jet lagged now not to mention shivery and achy. Now my stomach feels dickey. I’ve been here two minutes and I’ve already got deli belly. I lift the lid of the toilet seat only to have it come away in my hand. What the…
‘Andrew,’ I begin angrily, ‘the toilet seat …’
At that point I sit on the loo only to have it break underneath me. I’m halfway between the floor and the loo when the doctor walks in.
‘What are you doing?’ he asks to a chorus of wailing cats from outside.
What does he think I’m doing? Toilet seat yoga? Honestly men!
I burst into tears.
‘The toilet seat broke and don’t say it is because I’m overweight. I’m not staying here,’ I blurt out. ‘It’s a dump. I want to go home.’
I want to go home? Have I gone mad? It’s nearly killed me to get this far. If I have to do a return journey now it will be in the body bag our insurance agreed to pay for. Can things get any worse? Andrew sneezes loudly.
‘Let’s go and explore and if we see another hotel that is nicer then we’ll check out of this one.’
If we seriously don’t see another hotel nicer than this one I’m likely to slash my wrists. I swallow my malaria tablet, dash to the useless loo one more time and tiredly follow him out for a walk.
To be continued.
Part 2 A new hotel and a promise of chocolate pancakes with a twist.
Only I can mess up the school run, although I do wonder why it’s called the school run. I don’t recall there being much running this morning, at least not at the start anyway. Oh no, I hear you groan, what went wrong this time? Are you sitting comfortably? Then I’ll begin.
My grandson and I get on really well. We make cakes together, go for walks together and do arts and crafts together. Of course, these things are quite easy to do aren’t they? We’re going to the library together later, which is fun. So, I imagine my stepson thought who better to ask to take him to school than Lynda. Of course, normally they take him in themselves but Monday morning saw an important appointment come up and you know what happens if you cancel appointments. You end up waiting until you’re eighty for the next one to come up. I readily agree. I mean, how hard can it be, right?
Monday morning arrives and I drag my hung over body from the bed. Okay, okay, so Sunday night saw me consume just a little too much wine. I am allowed you know. It’s not like I’m going to drive him to the school under the influence is it? After all the school building is right next door and before you ask, yes, I do get up early some days and some nights I work late and get up later. A writer’s life is a complicated one. I wander downstairs where grandson is sleepily eating breakfast.
‘Good moaning,’ I smile.
Nothing, absolutely nothing.
‘He’s a bit dopey in the mornings,’ says stepson.
Dopey or grumpy I want to ask. But I just swallow two pain killers instead.
‘Will you be okay?’ asks stepson.
‘Sure,’ I say, more confidently than I actually feel. ‘Just remind me what I have to do.’
Although it can’t be much can it? Seriously, I just throw him into the classroom don’t I? I hear your gasps. You don’t really think I’d do that do you?
‘Take him in at about 8.45 and he’ll show you where his bag, coat and water bottle go. You can then sit with him until the music plays. That’s the time for parents to leave.’
How sweet. They play us out to music.
At twenty to nine I do battle with the shoes. Tuck him warmly inside his coat, hand him his satchel and off we go, straight next door. He excitedly shows me where his coat goes. I follow and say hello to his teacher. This is dead easy that I could do it with my eyes closed.
‘This is where my bag goes and this is …’
He turns and looks accusingly at me.
‘Where my water goes,’ he finishes.
‘Where is my bottle of water?’ He asks accusingly.
Good question. Where is the water bottle when you need it? still sitting on the table in our living room if I remember correctly. Damn it.
‘Don’t go anywhere, I’ll be right back.’
Did he roll his eyes?
This is when I did the school run. I fly back to the house, grab the bottle and fly back to the school where he is waiting in the same place.
‘Where does it go?’ I pant.
He points to where a thousand other bottles sit. Okay, maybe not thousands but you get my drift. How can this be so difficult? I flop into the chair beside him and start helping him with his numbers. This is better. I can cope with this. In fact I get so into it that I even help the little girl who sits opposite. Then, before I know what is happening, grandson is standing up and pushing me.
‘You’ve got to go now. Go on, go.’
I hear the music playing and realise all the parents have left. Trust me to be last. They could at least play the music at decent volume. My grandson is blanking me now. I’m just one big embarrassment. I sneak out of the door and breathe a sigh of relief.
‘How did it all go,’ stepson asks me later.
‘Great. It was good fun this morning wasn’t it Matthew?’ I say to grandson.
He harrumphs and continues building his Lego. Oh, well, you can’t please all the people all of the time. However he loves me when we make cake.
To celebrate the release of ‘Fudge Berries and Frog’s Knickers’ next Friday the 23rd Jan, we have a fab competition on my Facebook author page. It is open to anyone who wishes to take part. I’ve published some of the entries. Good luck. Don’t forget you can order the paperback now! Go here.
Here’s the competition. A bit different to those I usually have. There will be several winners so do take part.
It’s easy. With this post I’ve posted the book cover for ‘Fudge Berries and Frog’s Knickers’ To take part in the competition all you need to do is take the picture and make a fab picture with it of your own. I’ve attached one I’ve done using http://photofunia.com/ There are many other sites you can find on Google or you can do your own using a photo programme. You can post as many pictures as you like on Twitter and Facebook. Just be sure to mention me on twitter @lyndarenham and share with me on Facebook so I know what you’ve done and post it on here the author page. Each photo you do gets you a token to go into my draw. The more pictures you do the more tokens you get and the higher the chance of being drawn from the hat. I have pens, key rings, mug and signed books to give away. You can start now but remember to tell everyone in your posts that the book is out on 23rd Jan. If you post after that make sure you mention that the book is now available. The competition is open until my birthday on the 10 February. Good luck. I can’t wait to see your photos. If you’re not on Facebook or Twitter, simply send them to me at email@example.com and I will post them and pop a token into the draw for you.