New Year 2010/11, Alpha Thalassaemia, Depression & More DIY


I will have mentioned this before, but it is still foremost in my mind; four years ago, soon after Big Ben struck in 2007, Paul suddenly collapsed and died. Consequently this is – and always will be, the worst time of year for me. I struggled through Christmas Day, but wanted to stick my head in the sand over this 24-hour period and had declined an invitation to dinner. My friends Dot and Pete usually drop in after taking Dot’s stepmother to Accrington, but this year they were spending it with Pete’s brother in Scotland. Fortunate as it happened, as Mum had an appointment at the hospital to see the vascular surgeon at 4.20 – and it could take up to three hours, as she would need a pre-op assessment and scan.

At 9am I received a call from the department, asking if I could take Mum for an earlier appointment at 1pm, as the scanning department would probably be closing early for the holiday. ‘Yeah – right!’ – and they didn’t understand why they had given a new patient an appointment so late, anyway.

I was glad of the earlier appointment, as it took me further away from midnight where I had spent those awful hours four years earlier. We made our way to a totally empty waiting room, which didn’t fill me with confidence. I sat there listening o the staff wishing each other a happy new year and all the best and all the other greetings heralding in the coming year and the parting of the old one. ‘Please, will someone get me out of here!’ Eventually a tall slim nurse strode towards us and I realised it was Paul’s relative – another reminder of his funeral. She took the notes through to the consulting room, but then returned to tell us, that having read the notes, the earlier appointment hadn’t been necessary, as Mum would not be having the scan etc. She apologised profusely and offered to make us a cuppa, as the vascular surgeon wasn’t yet due in.

Fortunately the surgeon did arrive early and we only waited about an hour. Given my mum’s age, he didn’t think the surgery was a good idea and I concurred, but said my concern was due to the GP telling me that if the aortic artery ruptured, an internal bleed would be very painful. He agreed with this, but said if it just leaked, then medication could be given for the pain, but if it did rupture, then it would be over very quickly. However, he was obliged to tell me that this condition usually ran in families and there is a one in four chance of me having the same condition. As I was 65 he asked if I wanted a scan. Deja vu! Some 12 years earlier when I had my dad at the hospital regarding his many blood tests, it was discovered he had the genetic condition, alpha thalassaemia and after a subsequent blood test, it was discovered I carried the disorder too. At the time, the surgeon said it was in no way dangerous, unlike beta thalassaemia, and would only mean we could be (and often were) inappropriately prescribed iron supplements, which had always made Dad and me unwell.

Later, when I was to research the condition on the Internet, I discovered that in fact it results in less oxygen to the brain. As Dad was suffering from dementia I felt really depressed regarding my old age and especially now that Mother has a mixture of dementia and Alzheimer’s, so my future really looks bleak. Apart from that, my research told me that I could also have passed the gene to my sons and if they do have it, then so could their children. (Now the nasty bit) …

What is alpha thalassemia?

Thalassemia is an inherited disorder that affects the production of normal hemoglobin (a type of protein in red blood cells that carries oxygen to the tissues of the body). Thalassemia includes a number of different forms of anemia. The severity and type of anemia depends upon the number of genes that are affected.

Alpha thalassaemia

The alpha chain is produced by four genes and the severity of the condition depends on how many of those genes have been mutated.

  • If one gene is mutated, there is little or no effect.
  • If two genes are mutated, there may be symptoms of mild anaemia. This condition is known as the alpha thalassaemia trait. If two people with the alpha thalassaemia trait have a child, there is a one-in-four chance that their child will inherit the most severe form of alpha thalassaemia (see below).
  • If three genes are mutated, the result will be a condition called haemoglobin H disease. People with haemoglobin H disease will have lifelong (chronic) anaemia and may require regular blood transfusions.

If all four genes are mutated, the result will be the most severe form of alpha thalassaemia, known as alpha thalassaemia major. Infants with this condition are unable to produce normal haemoglobin and are unlikely to survive pregnancy. There have been some cases of unborn babies being treated with blood transfusions while still in the womb, but this type of treatment has a low success rate.

(Excerpt from NHS Choices).

Neither of my sons has taken the test!

Having told the vascular surgeon that I would like the scan to ascertain whether I have an aortic aneurysm or not, I drove away from the hospital wondering whether, in fact, I should. Would it affect my holiday insurance (it is already loaded on account of my cancer) in the unlikely event of me getting out to Hong Kong next year – or any holiday, for that matter? What would happen to my mum if I had to go into hospital? Wouldn’t I just be better popping of quickly without knowing about it? So many ifs and buts!

I tried to do some retail therapy on the way home from the hospital, but everywhere was gridlocked and I only got as far as Matalan where I found nothing to buy in the short time I could allow myself in the store, with Mum waiting in the car. I found a purple hat at £2.50, which I quite liked, but when I saw the queue I returned it to its rack.

Feeling really depressed we continued home and I looked in the freezer for something for dinner, but found nothing other than a breast of frozen goose that I had bought for Christmas – before Adrienne had invited Mum and me to hers, some pork sausages, some vegetarian sausages, some ice cream, some mussels (which Mum won’t eat), two packs of salmon, but although I could have quickly defrosted them, I didn’t feel like peeling vegetables to make a meal. Otherwise there was some bread and a large pack of ice cubes! No frozen dinners for Mum – so clearly I hadn’t been concentrating on my last visit to Iceland!

I was starving, having had an early lunch of a pack of crisps and four Tuc crackers. My mum was only slightly better off with having a cheese sandwich and a mince pie! Now feeling really down, living every moment of the run up to that New Year four years earlier – ‘what if – what if?’

I defrosted a couple of sausages for Mum and did a fried egg for both of us. Mum had bread to dunk in the yolk and as I was still peckish I had a chunk of cheese.

Now heavily into the Crabbies Mac I was becoming more and more maudlin. Everything I watched on TV had a New Year’s party in full swing, till at 10.30 I could take no more and got Mum and me ready for bed. I had the common sense to take the hands free phone with me – on the off chance that I got a midnight call, totally forgetting that my mum, now sleeping in the small bedroom where the computer is, can also be disturbed by the phone.

Just after midnight the phone rang – Stewart with his best wishes and telling me they were watching the fireworks at Edinburgh castle, which they could see from Isabella’s bedroom. When he hung up I had to go and get mum back to bed and no sooner had my head hit the pillow than the phone rang again, ‘hello, hello’, but nobody answering. Thinking it was a wrong number I stayed silent for a few minutes hoping to receive an apology from the caller, but none came. The racket continued and I realised I recognised those voices – they belonged to the revellers at Craig and Tony’s dinner party – that meant (probably) it was Adrienne phoning me. ‘Adrienne, Adrienne, I can’t hear you, can you hear me?’ Still nothing, but then I heard her voice talking to someone and it was then that I realised that perversely I had been thrown into the midst of the dinner party that I had declined, because this night is one of those when I just can’t cope with the jollities! I text Craig to ask him to tell Adrienne her phone line is open.

Sleep now eludes me, as it does Mum. I toss and turn all night long and Mum is up and down too. Morning comes, but it is so dull and dismal that I don’t realise the time and drift off to sleep again – only to be disturbed once more by the phone. It’s Joan, very kindly phoning from Zambia. I don’t tell her that I am still in bed, but of course the phone has disturbed mother too, so I have that to contend with.

We chat away and I tell Joan about last night and my Christmas Eve up the ladder etc and she says I really do have rotten luck. I say that in the grand scheme of things it isn’t too bad – like I haven’t just had a daughter murdered, or other family tragedy. I have a home, heating and everything we take for granted, but the little things that go wrong are relentless and slowly grinding me down. I always knew how good Paul was around the house, but now I am constantly being reminded.

Craig responds to my text from last night and I call him back. He says how perverse that I was unwittingly thrown into the dinner party that I was so anxious to avoid and through no fault of my own. Like I am viewing it from some parallel universe.

I have texts at midnight from Cath, Leo and Justin, but haven’t responded to them because I was otherwise occupied with the Adrienne phone call. I reply to Justin and Cath, but the one to Leo doesn’t go and I receive a message that I don’t have enough credit!

Eileen calls me and I have a nice chat with her. She knows where I am coming from and the emptiness of being a widow.

Come 2pm I asked Mum if she needed the toilet, as she hadn’t been since lunchtime. She looked at me as if I was off my trolley – how could I possibly imagine she needed the loo? Even with all her protestations, I insisted she go and what a good thing I had, as she was about to do a monumental crap. A crap that just emphatically refused to flush away even though time after time I tried!

Just after dark I remembered what was lurking in the porcelain and so I went upstairs to try again, flicked on the bathroom light switch and all the lights in the house fused! Now whereas most people can go and trip a switch on their consumer units and lights are restored, I cannot do that. I have to pull out the correct fuse from the electric box, get a screwdriver and loosen the screws, then take out the broken wire, cut a new piece of the correct wire, thread it through the holes and tighten the screws without breaking the wire again. Hardly difficult to do and I’ve done it once before, but not easy in the dark. As today is the anniversary of Paul’s death – the day my lights went out metaphorically, then it seemed symbolic to sit in semi darkness for the rest of the evening. I fixed the fuse next morning.

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willosworld

Born in Liverpool at the end of WW2, but raised in Skelmersdale. I first studied art in Southport from 1960-63 and worked in graphic design till I married. In December 1969 I moved to Zambia with my husband and two young children. There I taught art in the local girls school, illustrated for the National Correspondence College and did all sorts of other artwork, paid and unpaid. In 1978 I divorced and remarried in the summer of 1980. In 1985 I became ill and the following year cancer was diagnosed. There was no treatment available in Zambia and so I had to go to the UK. After recovering from a radium needle implant I went back to Zambia, but 18 months later the cancer recurred and it was off to the UK again for radical surgery. This time I realised I must stay in the UK where treatment was available, so I never returned to Zambia nor my husband. A few months later I applied for a degree course, but two years later the disease metastasised and I spent most of my final year in and out of hospital. It’s been a long hard road, but I’m still plodding on and it is now 24 years since my last cancer treatment. Because of my experience of cancer and surviving against the odds, I try and help others cope with their devastating diagnosis and prognosis.

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