The family has not had the best start to the year ….. things can only get better. We’ve a lot to thank our wonderful NHS for. Loads of scans – MRIs, CTs, PET/CT, mammogram – plus ECG and echocardiogram. But there’s definitely some good stuff to look forward to.
So, a health update first, starting with Christmas.
Alex started feeling poorly on Christmas eve after we got back from the annual feudal (James’s wording) carols, mulled wine and mince pies hosted by Lady Willoughby de Eresby at Grimsthorpe Castle. We were all up at 4.00am, not through excitement in anticipation of ripping open presents, but Alex in pain with parotitis …. again … poor lad. An out of hours appointment arranged at Stamford Hospital – (hurrah for our NHS) – a massive rib of beef was hastily ensconced in the oven. Getting that appointment proved a lot easier than finding an open pharmacy. Then he got shingles closely followed by mumps. Both twins have had their MMR vaccinations – Danny was protected but Alex was one of the 22% who aren’t. My generous grandson passed his shingles onto me! Thanks, Alex.
A real shocker was Jo being ambulanced into hospital. She’d been under a lot of stress meeting the deadline to have edits finished for book number two, Safe House, and two days later she had a TIA (mini stroke). Her blog tells the story How a ‘Year of Yes’ backfired She’s doing OK and is being kinder to herself. Not easy …. she’s a perfectionist with her work and does so many rewrites, never being 100% satisfied! And a bit of a control freak. Having to let go and allow other people in to help is alien to her. But a lesson we should all learn from.
Both me and Jo have had head MRI scans …… and 2 totally different experiences. Hers was post TIA. Mine was to investigate weird sensations and aches in my face – long term effects of previous cancer treatment? Or something else? The question needs an answer…… We both had our MRIs on a Saturday – no problems with parking or waiting times! I know I don’t cope well with the MRI scanner. I don’t suffer from claustrophobia but the first time I was slid into the tube it felt like being put in a coffin. Panic button pressed and a second scan appointment made, this time accompanied by Valium. So, I was prepared this time, took 2 Valium, changed into NHS ‘pyjamas’ and hopped onto the scanner bed. Panicked again! Luckily, I had 2 more Valium in my bag. I mentioned to the team I wish I’d brought an eye mask with me. ‘Oh, we have one if you want’. Eye mask put on. I mentioned that I’d had music played before to help counteract the noise. ‘Oh, we can play some music if you want’. Music put on ….. and then it stopped. Horrible, long experience. But job done. Jo went in to her MRI expecting it to be difficult. But what a difference a team makes. She was given ear defenders (I wasn’t) AND told there was a mirror inside the scanner, angled so that she could see her feet at the bottom of the tube (helps to relieve feelings of claustrophobia). Why didn’t I know that? Something else to put in the book me and Sian are writing – ‘For cancer patients, by cancer patients’.
Results are back. Jo’s was clear. Mine showed a ‘post pharyngeal suspicious mass’. Head and Neck appointment arranged which was a bit of a waste of time. The registrar was very nice but hadn’t read my notes. I must admit I didn’t feel like making it easy for her. ‘You have a problem with your teeth’. Yes, due to radiotherapy damage, teeth have to be removed at the hospital. Still waiting for an extraction date. The CNS was sent off to find out about the delay. The chair they use has been broken for 3 weeks and they don’t know when it will be fixed. ‘You’ve been having problems with feelings in your face’. Yes, that is why I was referred for an MRI. So, then we finally get to the scan results. After a feel around my neck, she goes to get the consultant. Mr Laugharne discussed options – but it was rather disappointing that as I hadn’t yet been discussed at the MDT, nothing had been decided. Mmmm. Booking the next clinic appointment was hilarious. The receptionist only spoke to Jo … it was a bit like ‘does she take sugar?’ …. as if I wasn’t there. Communication skills training required, I think. Anyway, I phoned after the next MDT as instructed and was told I’d have an ultrasound and FNA (fine needle aspiration). A bit surprised as that was one of the options I’d thought we’d dismissed – ultrasound by itself doesn’t show if it’s cancer and an FNA doesn’t always hit the right spot. I was expecting either a PET/CT or regular MRIs to monitor growth. But I got a letter from Nottingham PET/CT Centre – that’s what I wanted – and had that done yesterday. I was late – there is no signage at Nottingham City Hospital for the centre. It’s tucked away separate from the hospital …. the receptionist came out to find me. The patient information on their website ‘Reducing Patient Anxiety’ is fab ….. if only they’d included a map of how to find them! Excellent facilities, lovely staff, on time, vein for injecting radioactive fluid found first time. InHealth are a private company, you can tell the difference. The scan not too harrowing, better than an MRI, worse than a CT. But no Valium needed. Apart from being radioactive for a while, feeling headachy and wobbly (partly because I had to fast) and the stress of being late, it all went smoothly. I’ll get the results at clinic on Monday. An anxious wait – it could be breast cancer metastasis (possible), linked to previous Parotid cancer (unlikely), a 3rd primary (really unlucky!) or …. just a lump. Fingers crossed!
It’s a bit of a long update (sorry) but I’ve been waiting for a gap in rotten stuff happening which hasn’t appeared. But there have been some good bits!
Jo’s book ‘Sticks and Stones’ was released in paperback 2nd May – I bought yet another copy in Sainsbury’s and proudly paraded up and down the aisles with it in my trolley!
New additions to the family! Welcome to the world, babies Finn and Rosie – and congratulations to Jo and Libby.
I did my bit helping to raise cash for Marie Curie (not the most flattering outfit I’ve ever worn). We raised over £800!
Me and Guillaume went to see John Fairhurst – an amazing guitarist and singer/songwriter, the son of two of Tony’s oldest friends. Plug – his new album ‘The Divided Kingdom’ is out now. He’s been called the British Jimi Hendrix and son of Eric Clapton. If you’re off to Glastonbury, he’s performing there again this year.
Danny came 2nd in the Derby Arts competition, despite hating the piece he had to play – In the Hall of the Mountain King – and having done minimal practice.
A big thank you to Robbie for MC’ing our Burn’s Night supper – fab job and he still looks good in his kilt. The haggis received lots of praise – ‘the best I’ve had’, ‘I didn’t think I liked haggis but ….’. A big thank you Manthorpe butchers. The St Patricks’s supper was a great sucess too …. though it took some time for me and Mary to recover from cooking Irish stew for 50+ people.
Lots of visitors and meals out. A few special mentions for a few special folk – Fran, Gill, Dave and Jenny, Ruth and Johnny, Fr Pat and Sue, Pete and Jan, and the girls (Heidi, Nat and Char).
I’ve taken on a couple of new roles: I’ve been appointed to the NHS England PPV (Public and Patient Voices) Cancer Forum and the NCRI CTRad Group. Mental note: must take heed of Jo’s advice on not doing too much!
Good things on the horizon! Looking forward to cruising up the fjords with sister Dottie in a couple of weeks. And off to see Fleetwood Mac in June.
Apologies for the long blog …. next one will be shorter