Yup, that’s pretty how much it feels right now.
Remember the old adage: “Don’t worry, it could be worse”? Well, we didn’t worry… and sure enough, it was worse.
First there was the cancer… and we think we dealt with it, and are still dealing with it, quite well.
Then there was the mini-stroke… and we think we’re still adapting and dealing with that reasonably well.
So what could possibly happen next? Well an extensive blood clot, that’s what.
Our wonderful physiotherapist, Kayleigh, was very pleased with the motion of Jimmy’s right index finger but was quite concerned that his right leg from calf down to toes was quite swollen, and tender and warm to the touch. To date it had been thought of as merely water retention. She said she didn’t want to worry us, and took a long intake of breath before saying it might even be “DVT”. So we asked the obvious question “What’s DVT? And should we be really worried? Deep Vein Thrombosis, that’s what… a blood clot. She got in touch with our GP surgery out of hours service, expecting them to send someone out to see me, but they couldn’t do that and we got a phone call resulting in Val having to go down and pick up a prescription for pills that would be prescribed if it did indeed turn out to be a blood clot, and that I should start taking them immediately.
The following morning the District Nurse called to take a blood sample – that was almost farce-like. Jimmy hates needles, and she was apparently the expert who dealt with people with fears and phobias. Well, it took her four goes, the last one with Jimmy clinging desperately to Val with his good arm while the nurse managed to extract from the bad one.
That afternoon we had a meeting scheduled with Angela, our Macmillan Nurse. She decided to find out if more could be done regarding physiotherapy and also said she’d put in a request for an electric reclining armchair so that Jimmy’s right leg could be elevated above hip level. Shortly after that we had an appointment with our GP to discuss the right leg and also review the medication regime – we ended up putting Jimmy back on the steroids and increasing his basic morphine tablets for pain management by 33%. We thought that was it for the day but later got a phone call from the out-of-hours team from the hospital lab where they had analysed the blood samples – was I in pain? Was I having trouble breathing? What medication was I on? Were there any other underlying medical conditions? Satisfied all was OK he then said that the indications were that there is indeed a blood clot and that my GP should get the leg scanned ASAP.
Next morning we got an early phone call advising us of an appointment that had been made that afternoon! We had planned to attend the last Positive Steps session in our course at St Oswald’s Hospice, but that was firmly bashed on the head when the radiotherapist announced “There is an extensive clot, and you should get back to your doctor immediately. I’ll fax my report to them and speak to someone”. We drove back to our local surgery and, of course, they had no record of any fax and we were invited to wait in the waiting room… and wait we did until a GP came out and said he had seen the fax and advised we stop taking the tablets and immediately start a course of daily injections… self… administered. Well, as Jimmy only has one good hand he wouldn’t be able to do it and the onus therefore fell on Val. We got the prescription (syringes pre-loaded with the medication) and then we headed down to the local medical centre so the on-duty nurse could show Val how to do it. This she did and we headed home in disbelief at what we’d been told and shown. And Val continues to do the daily injection and Jimmy hardly feels a thing. We’ve been told that these daily injections will need to be done for the rest of his life!
We managed to get to St Oswald’s on Thursday and enjoyed our complementary therapy. Jimmy had his usual Reiki after an initial session of massage for his right arm and hand and Val Reflexology which she finds very soothing. Another trip to the swimming pool for Val that evening where she managed two additional lengths (16 altogether) in the same time it has taken her to do 14. She did ache a little the next day though!
Anthony John and Julia came to see us on Friday morning and it was lovely to catch up with them and chill for a few hours and on Saturday Jim and Allyson called by. They were just back from their holidays in the south of France.
Work continues apace with the website commission and the end is in sight… we’ll be sure to let you know when the site goes live.
So why two fingers? Well this afternoon Jimmy managed to move not only his index finger but also the ring finger on his right hand and we looked at each other in amazement. Wonderful!!! There is a lot of feeling and sensation in the hand and things are definitely coming along well. We suspect Kayleigh will be pleased with progress when she sees us next week.
So here’s two fingers to whatever the world tries to throw at us, and here’s a celebration of the two fingers that Jimmy can move.
Jimmy & Val (jiva)
Last week’s stroke (is it really nine days ago?) has set us back considerably. It is hard work for both of us to witness Jimmy trying his best to be independent and do things without the use of his right arm and – Val always at the ready to help if needed, but not wanting to step in unless asked. It’s an odd sort of existence, but we do have some exercises that the physiotherapist (Kayleigh) gave us to do. So empty moments (as if there are any) are spent with Val massaging Jimmy’s right arm from shoulder down to finger tips and back numerous times… that way the brain is reminded that there is a whole system from shoulder to elbow to wrist to knuckles to fingers and that they are all connected. Then there’s Jimmy doing his part by trying to move his index finger to remind the brain that fingers are meant to move. And today it all came together – the right index finger moved 1/4 of an inch! Not a lot you might think but we were delirious – laughing and kissing with the occasional tear dribbling down the face.
Progress on stroke recovery has been somewhat overshadowed by the backward steps in relation to his cancer. We had a really good August, but September has been a poor month for us. Jimmy’s health has been giving us concern as he’s back to needing to sleep more during the day, and his concentration span while awake is waning somewhat. Even with the extra two or three hours sleep per day he is still very tired by early evening, and by bed-time he is often almost too tired to keep his eyes open. But he still gets up two or three times during the night, sometimes to go to the loo or sometimes just to relieve his abdominal pains in trying to find a comfortable sleeping position.
All of this is sometimes difficult to cope with, but we do have each other to lean on … right now though Jimmy is doing most of the leaning and Val is holding up remarkably well even though she’s under a constant barrage of stress – not just from Jimmy’s condition but other things too!
As you will appreciate, we aren’t getting out very much right now but that doesn’t mean we’ve not been busy at home.
“One More Story To Be Told” – our behind the mic folkumentary about the life of singer/songwriter Anthony John Clarke is now at last available to purchase from the Albums page of Anthony John’s website…
The result is a DVD, just short of an hour, which contains:
- some performance footage (although it is certainly not a full length concert DVD)
- some anecdotes and insights from Anthony John
- thoughts and recollections from family, friends and fans
- and, being Anthony John, it wouldn’t be complete without a touch of humour!
It is basically our own sensitive and personal look at the life of the songwriter, folk singer and performer. Anthony John quietly demonstrates that, although it may not be a bed of roses, there are still enough laughs to go round.
Honest, compassionate and to the point!
Click the link to see the “official” trailer on YouTube – www.youtube.com/watch?v=KsTiFeIQoK8
And also the website commission we’re working on is inching closer to completion too (watch this space and we’ll be able to reveal all when the time is right).
Val has worked for over a year on organising and promoting and ticket designing and selling and programme designing as well as answering a multitude of enquiries for Allan Taylor’s 70th Birthay concerts in Brighton and at the Troubadour in London.
Today (Sunday) sees the last of the concerts and she deserves a huge round of applause for everything she’s done.
Walking backwards can often be difficult and painful, but not necessarily always so:
Jimmy & Val (jiva)
Again we’re a bit late with the blog, but it’s been slow going typing one finger at a time with the wrong hand. More anon…
The events of the week have been overshadowed by a major health update, so there’ll be no “Other Stuff” section while we come to terms and adapt to what this update means for us. So… Friday morning all was well, the usual after breakfast music session by Val playing guitar (yes, that one) sounding wonderful.
When she had finished, Jimmy took out his phone to check emails and found he couldn’t properly grip the stylus… strange. Maybe he’d been sitting funny, possibly pins and needles or something like that – so we headed upstairs to the study… curiouser still, he couldn’t grip a pen properly and couldn’t apply enough pressure to write. OK then, what about the mouse? Nope, couldn’t press down any buttons. Eeek!!! Starting to sound serious, so we phoned Angela, our Macmillan Nurse, and also phoned our GP.
Two minutes later Angela rang back – ambulance on its way, blue flashing lights. Be ready, they’ll be taking you to hospital for a brain scan. And, even before we were ready, there they were at the door. They asked a few questions then both of us climbed into the ambulance, Jimmy was put onto a trolley/bed with some wires attached to his body and off we went. They thought Jimmy had probably had a stroke, so it was protocol that they use flashing lights and sirens as time is of the essence in such cases. Wayne and Diane, our ambulance crew, were wonderful keeping us informed with what the readouts were and about the number of false alarms they get called to etc.
Once in the hospital (the brand new purpose built Northumbria A & E at Cramlington) things slowed down to a normal pace. There was blood taken for various tests, and checks on Jimmy’s eyesight and facial muscles and strength in the right side of his body. And then the brain scan – yes he does have one, and the good news is that there’s no evidence of the cancer having spread to the brain. Not so good news is that there was some internal bleeding and he has indeed had a mini stroke.
Then they wheeled him up to the stroke unit and gave him a bed by the window but, having been laid flat on his back for hours, he just sat in the chair instead. Two physiotherapists then came and checked his ability to grip, push, pull, raise arms, co-ordinate hand to eye movement and finally to walk on the flat and up and down stairs. Most of it was reasonably OK apart from the ability to pick up and hold items.
So he was discharged and we were ferried home by taxi paid for by the NHS. When we got home we were both somewhat exhausted and very much shocked by the whole ordeal… Jimmy was almost hyperventilating, he couldn’t quite believe it after all that we’ve battled through together. The next shock was actually trying to climb the stairs, something he had done with relative ease for the physios in the hospital just a few hours earlier… good foot first going up… and holding onto the bannister just in case, and alternating between good hand and bad hand. Major setback, the bad hand just didn’t want to play – it kept sliding off the bannister unable to either grip or even rest on the rail. Undeterred, we got up the stairs just using the good hand… and into the study. And to cap it all he missed his comfy executive chair by a good six inches or so.
Unsurprisingly, he let out the anguish he’d been feeling and heaved a few tears of frustration. We’ve been battling our way through this sodding cancer for months, and he’s been feeling in a good place for ages, looking really healthy… and now, there he was dumped on the floor of the study. OK, yes, he got up and sat there feeling frustrated and a bit silly, but also a bit worried about what the hell happens next.
We had been warned that things might get worse, or even better, by the morning so we had a relatively early night. Not as easy as you might think… how do you turn over to get comfy when dragging a deadweight arm which won’t respond when you try to move it? And after seven or so hours, some of it actually asleep, it was time to get up. That brought its own problems – you can’t really wash that well with only one hand working and the other swinging limply by your side. Drying is a bit awkward too. And then there’s brushing your teeth… getting the toothpaste on the brush would seem to be an art in itself. And deodorant. And then getting dressed. Good job we weren’t in a hurry!
It took a while to get through to the stroke unit on the phone, and they said just come in to A & E. After breakfast Val drove us to the hospital and we checked in with A & E where we were seen within 20 minutes. The doctor and physios confirmed that they didn’t think it was a second stroke but that it was just the first stroke carrying on from where it had left off. Jimmy did some of the exercises with the physios which showed that he had indeed lost power to his right hand and arm and we were discharged and would be contacted by the Community Response Team very soon to arrange a home visit to see what could be done.
We’ve been working out ways of coping with doing things one handed and that’s where we’re at now.
Let’s hope no more blues and twos in the near future.
Jimmy & Val (jiva)
A week of slight improvement for Jimmy. The medication tweaks that help force his digestive system to do some of the things that his beleaguered pancreas isn’t doing appear to be slowly getting there. No we’re not out of the woods yet – and, to be perfectly honest, we cannot expect ever to come out at the other side. But we’re not dwelling on that. Suffice to say we’re in a slightly better place than we were last week.
Thanks are due in no small part to the care and diligence of our Macmillan nurse, Angela.
Sunday was a smashing day. Luthier and friend Mark came to visit, and was positively agog at Val’s birthday present Taylor PS14CE guitar – and, no wonder. It is the most gorgeous looking, gorgeous sounding and gorgeous craftsmanship that most folks will ever get to see in a lifetime. Are we blowing our own trumpet? YES! And why not? And blowing Taylor’s trumpet loud and clear. True, having the best guitar in the world will not turn you into the best guitarist in the world… but if you can play, and you do perform in public, we firmly believe that you owe it to audiences to give them the benefit of the best sound you can produce… no exceptions… keeping the “good stuff” at home while performing with “the poorer quality stuff” (if you have any) is an insult to your audience.
On Monday we met up with Jimmy’s son, Lyndon. Having recently re-discovered his appetite, Jimmy has taken a fancy to tapas – and so we booked a table at El Coto in Durham and spent a very enjoyable evening eating and drinking (well, not a lot of alcohol due to driving and also medical restrictions) and catching up on goings on and holidays and future plans, etc. We decided on the specials menu – three tapas for considerably less than buying them as three separate items. Wikipedia says of tapas:
Tapas are a wide variety of appetizers, or snacks, in Spanish cuisine. They may be cold (such as mixed olives and cheese) or hot (such as chopitos, which are battered, fried baby squid). In select bars in Spain, tapas have evolved into an entire, sophisticated cuisine. In Spain, patrons of tapas can order many different tapas and combine them to make a full meal.
For the second time in a row we have been amazed at the size of the tapas dishes – we think here in the UK they have evolved into almost a full course for each tapa. Val had a salad as her first tapa and it was huge. Jimmy and Lyndon opted for bread in various dips for starters. And then we piled in for a mix and match feast of six more between us including the likes of skewered chicken, lamb meatballs, breaded salmon, chorizo, potato dips. Phew!
After all that food it was just as well that we had earmarked Tuesday as a day with nothing specific in the calendar – not that we sat around and did nothing. Oh no, that wouldn’t be jiva – we carried on working through design options for our latest website commission. It’s quite incredible how much we learn when faced with a seemingly insurmountable problem (pretty much like life in general really). We do try and remember to take time out for breaks, but there’s always so much we want to achieve, and so little time in which to get through it all (again, pretty much like life in general around here lately).
Wednesday turned out to be less full than we had anticipated – both the presenters/facilitators of the Positive Steps course at St Oswald’s Hospice were unwell and this week’s session therefore had to be cancelled. This left us with a big hole in the afternoon which Val put to good use practicing guitar (she’s concentrating on D-A-D-F#-A-D tuning at the moment, and it’s sounding lovely… we’re hoping that Val will continue with this to make it a feature of her future performing). And so then, what of Jimmy? He continued delving deeper and deeper into the intricacies of HTML and CSS and responsive web design… he likes to get right into the coding and understand what’s happening and why it’s happening… none of this template-driven malarkey of “press this button and it just works” for him… no no no… he needs to understand it in order to be able to fix it and improve it.
For the second week in a row Val went swimming on Thursday evening. And what of Jimmy? More HTML etc, but some relaxation in the form of reading the advanced manual for our hi-fi AV receiver/amplifier and trying out some hidden options relating to music streaming and Bluetooth and our home network of PCs and servers and mobile devices (phones and tablets). He knows how to have fun, eh?
Friday was an interesting day. It began in panic mode when Jimmy finished a 10-capsule strip of his prescribed painkillers and, on opening the box, found only one strip left… ten capsules at six per day… ooopsss! We would run out on Saturday… and a repeat prescription normally takes three working days to be issued… ooh, err… what a to do. So, straight on the phone to our local General Practice. “We’ll need to get that agreed and signed by one of the doctors.” Yes well, normally the three day turnaround would be fine but in this case, that would be a major problem – no painkillers for half of Saturday, all of Sunday, and however many working days thereafter would be literally unbearable. Jimmy stressed the urgency of the situation and they said they’d see what they could do. We also rang our Macmillan nurse to explain the problem and she straightaway said she’d speak to someone and get it prioritised. Well, by the time we’d had breakfast, and Val had done her morning practice (yes, on that guitar) the phone rang – “Your prescription is ready to collect at the surgery.” Wonderful service. Painkiller stock level back to normal… must remember to phone on Monday for a repeat prescription for the acid reflux inhibitor stuff – there’s a full week’s worth left, but don’t want to leave it too late.
Then after calling in to see the Reverend Charles Hope at Prudhoe, and then a flying visit to a local hostelry, we spent the rest of Friday afternoon in a delightful tea shop at Blackhill near Consett (Sweethart Coffee & Cake – Coffee Shop & Bakery www.sweethartcoffeeandcake.co.uk) where we naively ordered afternoon tea for two – the menu did mention a selection of sandwiches and cakes, so we assumed it would be a relatively small amount of each… you know the saying “assume makes an ass of u and me”? Well, that was true, very true. Along with our drinks we were brought a platter with sandwiches and a delightful little savoury wrap and quiche and a small cheese platter (two cheese strips and crackers and a few grapes) to be going on with. Then, my goodness… a two-tiered array of the most delicious cakes plus scones and jam and clotted cream and strawberries too!. There was absolutely no rush – just as well… we had to keep pausing every so often, but somehow we managed. Val couldn’t find room for her last cake, so Jimmy ate it. Brilliant! And free glasses of sparkly wine to finish off. We will definitely be back there (always assuming that Jimmy’s appetite doesn’t disappear when he comes off the steroids – so far it’s been two weeks on two tablets per day, two weeks on one tablet per day, one week on one tablet alternate days and our Macmillan nurse is coming around on Monday to review the situation… Apparently, long term use of steroids will have a bad effect on Jimmy’s muscles – what’s left of them).
On Saturday we went to the Davy Lamp Folk Club where we saw Allan Taylor. As well as seeing him perform (including many of our favourite songs and some requests and the song he wrote for us as a wedding present back in 2009) it was great to catch up before the show and chat a while afterwards too. We also bumped into friends we hadn’t seen for a while so, all in all, we had a really good time… but, by the end of the night Jimmy was visibly tiring, so we were glad to be back home shortly after midnight. And, for the first time in months, we both slept solidly for eight hours… so, it seems we must both have been tired.
Which brings us around to Sunday – a lovely surprise visit from good friends Mike and Hazel rounded off another good week.
Life is good and, even in our current circumstances (or should that be especially in our current circumstances?), it does get better… slightly.
Jimmy & Val (jiva)