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



NHS; the good, the crazy and the comm’s overload

So I’ve not been posting for a while. I always admit that this thing comes and goes like our bloody weather. But I’ve had an excuse as I’ve been under the weather a tad. I posted a few weeks ago about a painful back/chest condition which necessitated a visit to my local A&E where I was diagnosed with something called costochondritis – an inflammation of the breastbone area. It was nothing too serious and I was prescribed with painkillers and ibuprofen. But after 3 weeks I felt no better, in fact the pain was worse. In the meantime I received a letter from Chelsea And Westminster Hospital Trust, who handled all my cancer surgery and chemo treatment and follow up, that due to a change in Trust guidelines, my colonoscopy procedure scheduled for 20121 had been cancelled. Nothing more than that other than if I had issues I should take it up with my GP. Oh, thank you and good night.

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NHS and the BBC

I’m in awe of the people who are leading the fight against covid-19 in our hospitals and care centres. They aren’t receiving the PPE and testing they need from our bloody Gov’t but they keep working to keep us alive and too many of them are paying the ultimate sacrifice. Never will they be taken for granted again I hope. And let’s not forget our other key workers like postmen, refuse collectors, delivery and transport drivers, retail store workers, teachers and many more who are battling on, keeping essential life still available to us

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And another thing Mr Hancock

I almost forgot to mention the other thing that really got my goat up with the Minister for Health’s pronouncements this week. Basically we all wanted his answers to two key questions:

  • when will the NHS staff in all positions of the service get their essential personal protective equipment?
  • when will we have sufficient stocks of testing equipment available firstly to carry out essential tests on all NHS staff and then on the general public to meet and if possible exceed the target of 100,000 per day?

and as I’ve made clear in the earlier posting he couldn’t give any clear reassurances on either. But to deflect attention he then proceeded to play to the public gallery and vilified footballers for not accepting substantial pay cuts at this difficult time, when many people are being laid off etc. It’s such an easy target and I thought it was a really cheap shot.

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Good and sad news

Thursday was an interesting day. I had my 3 month review with my lovely oncologist following the end of my chemotherapy treatment. Apart from the drugs causing me to lose sensitivity in my fingers and toes (which causes them to feel cold all the time), I’ve been feeling great for a while now but I still went to the consultation feeling slightly apprehensive of course. Anyway the outcome of all the recent tests I’ve undertaken is that there’s no significant sign of the cancer having returned. Woo hoo. So I’ve been given a 3 month pass before I start the round of tests and consultation again. My wife C and I were very happy to tell our daughters the news this time as you can imagine.

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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. Continue reading

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