Something interesting happened at gin on Friday. Mad Lucy noticed it. It was that no one drank any gin! She is well upset. Thinks that the gin club is in jeopardy. That we might have to start calling it a ‘Ladies Club’ instead. I think this could be quite a hoot. We could even start to accept our advancing years and go for tiny glasses of sherry, such fun!
My friend Claire-who-lives-in-Ireland (not Turbo-Pimms-Claire nor Flute-Pupil-about-to-have-a-baby-that-is-light-Claire) messaged me on Facebook to say she was sad because she didn’t have a gin club. I told her that all you need is a bottle of gin and one friend. (Hell not even a friend, an acquaintance will do as they will surely be a friend by the end of the night.) ‘You make it sound so easy,’ she said. Lol. You’d think they’d have Guinness clubs aplenty in Ireland, who needs gin?
I’ve been thinking about all the activity that has gone on around this cancer thing. (And I’m not talking about the fact that if a day goes by and I don’t go out for lunch I feel hard done by.) I get appointments piling through the door for the Breast Unit, the Day Unit, Oncology, scans etc. The Breast Care Nurses phone up to tell me an appointment has changed. The trial nurse is really keen that I bring urine for her. If I compare all this to what Tabby has been offered since her Type 1 diabetes diagnosis in January it is really shocking. Absolutely nothing, is what she has had. She got out of hospital on the 26th January and she has seen nobody since, not a soul.
Most of our friends and acquaintances know what happened to Tabby, but in case you don’t know: a week after New Year Tabby took to taking a bottle of water everywhere with her as she felt so thirsty. She mentioned it to me a couple of times. The third time she said ‘I’ve been getting up four times a night to refill my water bottle. My eyes have gone blurry. I feel so, so sad for the poor African babies who don’t have anything to drink.’ I suggested she look up the symptoms of diabetes as the thirst thing kind of rang a bell. She came downstairs minutes later and said ‘Mum, I’m ticking six out of six boxes for diabetes.’
Seven thirty the next morning we were queueing at the doctor’s. At ten past nine she was seen. She said to Dr Hunukumbure: ‘I think I have diabetes. I am extremely thirsty, I wee all the time, I have no energy, I have dry skin, I have blurry vision and I’ve lost weight.’
Oops. We forgot that they really don’t like self-diagnosers. The doctor said, ‘I’m not convinced. You should drink less so you wee less, put E45 on your dry skin and go to the optician for your blurry vision.’
How interesting that a doctor wants to split up symptoms that clearly go together. The complete opposite of what a homeopath would do.
Tabby persisted: ‘I haven’t eaten anything since eight o’clock last night so can I have a blood test now?’
‘No,’ said the doctor. ‘You can come back next week for a blood test.’
Tabby was too ill to fight and came out in tears feeling humiliated and stupid. We now know that a finger prick blood test would have taken about twenty seconds to do. Tabby now has to do it seven times a day after all.
A week later the doctor had the blood test result and called us to speak to Tabby. ‘She’s too weak to come to the phone, she’s in bed,’ I said. The day before I had had to pick her up from school for the first time ever as she felt weak and sick and could not see properly in her drama class.
‘You should come in tomorrow and speak to the diabetes nurse as her blood glucose is very high,’ said the doctor. She did not tell us to go straight to A and E then, which was another unforgivable error.
The next day we queued again from half past seven in the morning, outside in the cold with Tabby leaning on me, pale and covered in weird spots. Saw the nurse, who was suddenly terrifyingly nice. Like, gave us her personal phone number?! Accompanied Tabby to have more blood taken with her arm around her?! She tested Tabby’s urine for ketones which were all positive. Having high blood sugar for such a long time (the thought of that extra week makes us seethe) had given her ketoacidosis of the blood, when your liver is breaking down fat due to the inability of your cells to access energy. This meant she was dangerously ill, but nobody told us that at the time. Alarm bells did start ringing when the doctor called through to the nurse’s office and spoke to me on the phone. ‘Are you going to be alright driving her to Harlow A and E?’ she asked.
I paused. Did this mean there was another option? Was she half offering me an ambulance? ‘Yes, I am’, I said finally, wondering how the hell ill was my daughter and thinking, ‘I can get her there fast, let’s not wait for an ambulance.’ The A and E people said she was so ill her organs could have shut down in which case an ambulance would have been a better option. I think the doctor did not want to make her mistake more obvious by sending her in an ambulance. Crazy, because if Tabby’s organs had shut down as I was driving her there, that would have been another dreadful mistake she would have had to live with.
Tabby was in the Trauma and Resuscitation Room for ten hours wired up to lots of machines. Doctors kept trying to get blood out of her veins but there wasn’t any. She lay there crying in shock and murmuring ‘I knew I was ill. I knew that doctor was wrong.’ She was on a ward for a whole week on two drips to restore her glucose levels to normal. She has to test her blood seven times a day and inject insulin four times a day for the rest of her life.
One thing I keep in mind all the time. Nothing that I have had to do so far with this cancer is as bad as your child being dangerously ill. I held her rag-like hand and wished and wished that I could suffer her illness for her.
The day of Tabby’s discharge, the 26th January, a diabetic specialist came to her bedside and talked for an hour, and a dietitian stopped by and explained some sheets with lists of different foods and how much insulin you would inject for each. That was the last time anyone from the system volunteered information or interest about her diabetes. We queued again at the doctor’s the week after Tabby got out of hospital to request Addenbrooke’s for clinic visits. There is a teenage diabetic clinic there and Tabby is interested in taking part in trials. A card eventually arrived with an appointment for mid-May. So, get this: the system sends you home, fresh from a two-week-long life-threatening health scare, to three and a half months, that’s sixteen weeks, of absolute vacuum where you are effectively learning on your own how to fulfill the function of your newly dead pancreas.
Elliot’s mum, who is a diabetic nurse, says that something must have gone wrong. She maintains that a diabetic specialist should be phoning Tabby up every third day to check up on her. I don’t know, but I heard on Radio 4 that there are too many new patients and too few specialists so this sort of neglect is unfortunately becoming commonplace.
Of course, when the system fails the community luckily kicks in. Kindly friends have put us in contact with long-term diabetes patients who have printed out reams of information for us. Other knowledgeable friends have run round with blood testing strips late at night and have given advice and comfort.
It’s gutting though to realise how much illness can strip us of who we are. When Tabby was but one year old she was not afraid to speak her truth. We turned up for a visit at Great Granny’s house. There was nothing Great Granny liked more than our visits, a chance to admire the babies and have wonderful lengthy conversations about Jane Austen, Latin, writing, politics. I often found visits slightly stressful, as she had jolly high standards. I had to scrub the kids up and make sure not too many heaps of rubbish fell out of the car as we arrived. Tabby was clutching her dolly. She had three dollies: Gangan Wawa (the one Gwanny gave her), Mama Wawa (the one I gave her) and Baba Wawa (the baby dolly). Today she had brought Gangan Wawa with her. We were still out on the street when Great Granny spotted the dolly and exclaimed brightly ‘Oh, and who do we have here?’
Tabby said, ‘Dat moy Gangan Wawa.’
‘Oh, dear,’ tutted Great Granny disapprovingly, ‘That’s not a good name for a dolly! We’ll find a proper name for her. Why don’t we call her….Emily? ‘
Tabby locked eyes with Great Granny and announced very clearly, ‘DAT…MOY….GANGAN….WAWA.’
Great Granny, despite being a formidable character, knew when she was beaten and, muttering ‘Well! Some of us know our own mind!’ stepped down.
Here is a picture of Tabby when she was about two. Does it look like you can mess with her?
Interesting then that the seventeen year old Tabby knew she was very ill, yet allowed the doctor to dismiss her symptoms. She should have said to her ‘DAT…MOY….DIABETES….TAKE…BLOOD…NOW….MORON.’ The problem being, of course, that you mostly only go to the doctor when you are pretty ill. And when you are ill you don’t have the strength to stick up for yourself. She came out in tears to tell me about the E-45, the optician and having to drink less so she would wee less. Wow. You know, both of us knew it made no sense. We didn’t want a diabetes diagnosis, but we just knew it was a diabetes diagnosis. But we put up and shut up. Because part of us still believed (not any more) that after all those years of training, the doctor must know best.
So, the lesson: we have to remind ourselves all the time that we are a hugely valuable part of our own medical team. After all, only we know how we are feeling. Apparently patients who the doctors remember, the ones who make a bit of a fuss and ask lots of tricky questions, do better. We should remember that this whole diabetes/cancer thing is evolving. We can be part of new discoveries and new ways of doing things. We must keep a critical eye, keep on the ball, be proactive, research things, ask other patients. And keep hearing Simba’s daddy’s voice: ‘Remember whoooo yoooooo aaaaare!’ Don’t let the bloody illness strip you of Whooooo Yooooo Aaaaaare.
Phew, all that was quite heavy, so I’ll reward you with another daft lols story from the Tingey archives. On another visit to Great Granny’s I was carefully pouring the tea out of the beautiful tea-pot that she had brought back from China. Great Granny had nipped off to ‘visit the downstairs bathroom’. To my horror, I heard both Chloe and Tabby, aged three and one, hammering on the door of the bathroom.
‘GWEAT GWANNY? ‘ they shouted. ‘ARE YOU DOING A WEE WEE…..OR A POO POO?’
There was a stunned silence from within. ‘Girls…girls!’ I hissed, ‘Shhh! Come here!’
‘GWEAT GWANNY!!’ knock knock, ‘CAN YOU NOT HEAR US? ARE YOU DOING A WEE WEE….OR A POO POO?’
A faint voice came from behind the door. ‘I don’t discuss such matters.’
Eek, aaargh, big cringe. Great Granny and I both made sure we got back on the subject of Jane Austen pretty quick. Chloe and Tabby sadly never found out if it was a wee wee….or a poo poo.
At a lovely supper last night at Nellen’s I met up with a friend, Colleen. She loves the blog. She said that once we get to forty five we have an advantage over the youf as we are not afraid to ‘tell it as it is.’ I didn’t really realise that I was ‘telling it as it is.’ But now I know and it kind of makes sense. And though Great Granny would maybe not approve of me choosing the stories above over all other possible stories, she was a writer all her life, she absolutely loved high drama and a good story and I think she would have approved of the general attempt to tell things as they are.