Our extraordinary daughter Becksy

You guys know we have 3 wonderful daughters and that our eldest, Rebecca, who has Down’s syndrome, been back living with us since Xmas time. The care company who were looking after her in independent living in Twickenham, called us up to say that they were struggling to offer her adequate care. It was suggested we should re-take the care of her after 8-9 years living independently. Serious stuff. She came back to us 3 stones overweight, heavily anxious after 2 years of being kept indoors during the covid situation, and we couldn’t recognise  the carefree, confident, smart, happy and adventurous young women we’d known since childhood.

It was very scary to be honest. She wouldn’t sleep, staying up all night propped up in her bed and we couldn’t really raise her from her bedroom doing the day. She’d stopped showering at her care facility and had been ignoring her personal hygiene (including dental care) and we were really having to insist on her getting up to look after her personal hygiene. It came to a head one day when she went into melt down and we had to call the GP in to check her over. This ended up with her being admitted to Warwick Hospital via an ambulance – after a 14 hour wait for the vehicle – it took 3 hours to get her into the ambulance because of her anxiety. You have to understand that she has a massive fear of hospitals and all things medical. So getting her there was a huge struggle and a little triumph.

But typically she became the life and soul of the party on on the ward and we were able to take her home the next day with a new regime of medicines (which have worked really well since then). We had a follow-up appointment at Stratford Hospital for a CT scan for Becksy, to try and identify any brain symptoms causing the anxiety issues. But after an hour or more of trying she simply was too fearful of the procedure and we had to abort it.

Then in February she had the accident on the stairs in a hotel whilst we were visiting Carol’s brother and she badly damaged her already degenerative knees. This was a major setback of course requiring wheel chair support and walking aids. But before we reached that point she had a series of major fainting sessions in the bathroom because of the pain getting Into and out of the bath. We had to call the ambulance service again one day when we simply could’t raise her from the floor.  Again another major problem getting her into the ambulance (a neighbour was held up 3 hours getting out of her driveway but she was lovely over it). More medication – mostly strong pain killers.

The good news was that Becksy was shedding weight with a proper diet  (over 3 stone since December) and her anxiousness was massively reduced. She’s been sleeping well for months now and her happy nature has returned thankfully. And physiotherapy with the lovely  K at Stratford Hospital was really helping.

But in August we received the appointment for Becksy to attend  Kings College Hospital for major dental  surgery. We’d been chasing this for at least 3 years, not helped by covid,  as her dental condition had deteriorated  under care. Long story short she needed to be treated under GA and had 7 teeth extracted, 4 fillings and some abscessed jaw bone removed under a fairly major procedure. It’s taken almost 3 months of taking salt water swills to ease the discomfort but thankfully she’s eating happily again.

Despite this her health seemed to be progressing nicely, especially her improved mobility until about 3 weeks ago. That’s when Carol noticed how pale Becksy was looking and took her to our GP for a check up. She was concerned and did an immediate blood test. We then heard from Warwick Hospital at 9.30pm later the same evening that they wanted us to take her into the hospital urgently. I explained that both she and Caz were in bed  and asked if we could delay things until the morning  (especially as I know from experience that nothing would happen on a late w/e evening).

So next morning we took her in again and it took another 5 hours of procedures to go through A&E to get her onto a ward. This is the problem constantly. Anyway it became clear that Becksy had a major problem – her blood level was incredibly low and her haemoglobin/iron levels within her bloodstream were dangerously low. She needed more blood tests and a cannula to be fitted. Because of her anxieties this was a real ordeal but eventually they got it done. She received several transfusions over the next few days to boost her blood and iron levels.

She was actually a week in the hospital and as ever she was the star of the ward and the doctors/nurses  loved her. But, whilst she got her levels rebalanced, there was still the need to identify the cause of the blood/iron loss. A CT scan would be the first step. We tried twice more to get her to have the scan; once with me by her side and secondly with her fave doctor. But we couldn’t overcome her fears on either occasion sadly.

During her 6 day stay we noticed her cannulated arm was badly swollen and reddened. We pointed this out to the nurses and doctors several times but they kept saying it was just a circulatory problem. Increasingly Becksy’s arm became sore to touch and they still denied it was an infection. Becksy was allowed to return home after 6 days. At the first opportunity we took her to our GP to assess the arm; she couldn’t believe the hospital had not noticed the obvious infection and gave us a heavy prescription of antibiotics. Sigh.

Two and a half weeks later the infection has gone but she still has poor finger movement and painfulness in her right arm. We just can’t believe our daughter  can come out of hospital in a probably worse condition. To compound this lack of competency we received an outpatient appointment for Becksy to have a CT scan at Stratford Hospital a week or so ago. The doctors has suggested we give her fairly strong sedatives an hour before the scan to ease her anxiety. We got to hospital, only to find out that Warwick Hospital had cancelled the appointment without informing us. And we’d administered sedatives to Becksy unnecessarily.

You kind of start to lose faith in the NHS system when this shit happens. We then got an appointment for a 5th CT scan back at Warwick Hospital earlier this week. She wanted her sister Sarah to be there and with the help of some really helpful staff we got Becksy to actually do the scan. Wey hey.

All we have to do now is await the consultant review and hopefully it’ll demonstrate a simple medical issue curable by medication.

We are just in awe of our daughter. She’s full of life again incredibly. The doctor at the hospital told us he would have collapsed with Becksy’s blood levels. She’s tough as teak but we just can’t help thinking that she deserves a health break now. She’s put up with a lot and still comes up smiling. As soon as possible we want take her somewhere nicely recuperative.

Love my daughters

pp

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Never heard of it!

Picture the scene; one minute I’m fast asleep in bed, the next I’m shocked awake having landed elbow first on the floor with my face smashed into a basket of toiletries. Bang. I hadn’t just rolled out mistakenly; there’s a sixth sense that stops you doing that. I think I’d been dreaming and had leapt out. I have this recurring dream that I’m being attacked by a gang of people armed to the gills with axes, machetes, knives, hammers etc and I have to fight them off night after night. And I always just about do that but often I have to leap out of the way of a slashing blade. I’m sure that’s what was going on when I leapt subconsciously from my bed.  There’s probably some deep psychological issue waiting to be explored but it can wait. Anyway I didn’t die of shock, obviously, but I did give myself quite a start plus a scratch or two to the face and one pretty sore elbow.

Covid – up close

Regular readers might remember that on a trip down to Italy a few years ago I somehow managed to get pleurisy on the drive down and spent a coupled days in Como hospital getting it under control. The doctors reckoned that spending 8 hours cooped up in an air-conditioned car might have been the cause. It turned out to be a traumatic trip which you can read here if you’re interested but it’s a sad story. I got over the pleurisy but I remember the painful discomfort all too well. So what? you ask. Well a week or so ago after our first long drive in months to go and see daughter Becksy in London I started to get this hurting feeling in my chest and back which slowly got more uncomfortable as the week wore on, not helped by a second longish drive to visit Becksy on Sunday, lovey as it was to see her. I woke up yesterday morning and after a really troublesome night’s sleep I thought I’d better get it checked out. I called my GP and she advised me to go to Horton hospital A&E straight away as it could be covid-related or a heart issue or a return of something more sinister. Oh lord.

Life

Today would have been my youngest brother’s 60th birthday, sadly we lost him very suddenly and shockingly 3 years ago after he was diagnosed with incurable cancer. The same cancer as I had. My lovely sister, the baby of the family, is currently undergoing really difficult treatment for a nasty form of spinal cancer. She’s managing the situation with courage and lots of strength. My dad in his late 80’s had a procedure to remove a cancer spot only recently. My wife’s sister and brother have both overcome having the disease and her niece has similarly come through the experience successfully. Yesterday we spoke with a dear dear friend who is recovering from having a major operation to remove cancer and in a week or so’s time she’ll resume her chemo treatment. The operation went as well as could be hoped and we’re crossing everything that the prognosis remains entirely positive and her recovery continues totally. It’s a horrible horrible disease but I’m in awe of the work that the NHS does in helping people deal with it. I know they get lots of stuff wrong and I’m the first to complain when their admin is hopeless, they postpone procedures at the drop of a hat, and keep you waiting endlessly. But they saved my life at least 3 times and many people we know have cause to thank them too. I wanted to post something uplifting to celebrate people fighting and winning their battles with cancer but wanted to avoid something mushy like ‘You raise me up’. I thought this might be approriate especially since anyone who’s had to spend the night on a hospital ward knows, no-one sleeps…

 

 

Cruel world

Last week in August we headed down to Italy for a week’s break to get some hard work done on the house before the winter. Regular readers will know there’s usually a bloody drama with our visits but this time there was no sense of looking back afterwards and smiling wistfully.

The C word

Well I think most people will have twigged by now from the occasional asides I’ve been dropping into recent postings that I was diagnosed with cancer a couple of months ago. Bummer eh. Anyway 7am tomorrow I’m off to hospital for surgery to remove the carcinoma from my bowel and any surrounding tissues. Then 6 months of chemotherapy beckons. I’ve had lots of cards, calls and texts today from friends and family wishing me well which is very kind. Then tonight a pleasant evening’s few drinks and meal at the infamous Anglers with my family. None for me of course.

great genes

Medical update…….Gary Neville’s first punditry footballing words; ‘be careful what you wish for’. He was talking about a new manager. It’s so banal but so relevant to my own situation.

I had a sigmoidoscopy a week or so ago. I was reminded of Gary’s words before I spoke to the registrar yesterday after she’d consulted on my stomach problem. I was delighted to be told I didn’t have diverticulitis as I really didn’t fancy the idea of having that as an ongoing problem. The downside is I do have something else and I’m guessing it’s not good. And now I need a CT scan and another invasive filmic examination up my back passage, this time to the far far reaches of my colon. Oh deep, deep joy.  A slightly inflamed bowel lining seems like a not-too-bad condition now I think about it.

I’m not trying to anticipate  what the prognosis might be but here’s the deal. I know I inherited my father’s hair gene. The one which resulted in near baldness at 30. Thanks Dad. But is that the worst that can happen in life? Of course not. Believe it or not full-headed readers but being shaven-headed is massively more appealing to me than struggling with creeping baldness (though a lot of frigging extra shaving work).

My dad and his forbears I forgive. I can live without hair.  The problem is that I have more than likely inherited my mother’s Smith family gene for susceptibility to cancer.  It’s taken my mum, her brother and sister and own mother. I don’t know for sure as yet but I kind of suspect it given the coded language in which I’m being spoken to and the almost menstruating quality of my early morning sessions on the loo. Sorry to be so graphic readers. Would it have been so bad to have been blessed with my mum’s luxurious hair gene and Bob’s mild stomach issues? Lawdy where were you when it came to overseeing my family’s natural selection processes eh? I think the Great Architect must have had his back turned sorting out those pesky Yorkies when the Lancashire Smith family genome was being assembled.

Hey ho. Another bulletin this time next week folks

pp

it’s sick man

As well as being one of my grandson’s favourite current phrases, perversely meaning that something’s actually rather good, in old-speak it’s also a literal way to describe my situation and our household’s over the last week or so.  And it kicks off chillingly with my daughter R.