Month: November 2016

§ The Limbo Dance: signifying an emergence from death to life. §

5 September 2016: Email update to friends and rellies – coming home?

Dear all

Well, we’ve had an exciting few days!! 

 Hair………..

As you know, John was periodically pulling tufts of hair out of his head on Friday, which has now become a bit of a cascade and hair is floating everywhere! Taking a shower means that John is more hirsuit on his body when he leaves the shower than when he went in!!! And the caps we ordered to cover his embarrassment have not yet arrived, but the nice new slippers I ordered for him have (more on that in a minute)…..

Trip to the loo, my darling

The tests finally showed a urine infection of polyoma, which the doctors are not unduly concerned about, but either as a result of that or something else, they decided that John was deficient in magnesium so promptly filled him full of litres and litres of saline solution (again) with the magnesium in it. Consequently, nightly trips to the loo continue. Fortunately, the other problem regarding his toilet habits has now cleared up, so a bit of relief there.

 Morning and evening John has been hooked up to a drip of cyclosporine (the immunosuppressant) so it’s been fun, fun, fun when he’s needed the loo as his ‘friend’ has always gone with him.

Move over drip – make way for pills

On Sunday, however, a new and exciting development, as he was no longer on a hook-up to the drip and sadly, he had to say goodbye to his ‘friend’. Instead, a tub full of exciting pills (some of you may have seen these on Facebook, which John called his ‘amuse-bouche’ before his ‘main’ of an English breakfast) including the cyclosporine, is now being provided morning and evening. Meals are now very exciting with his assortment of ‘smarties’.

 Growing..growing…growing…

Every day, the nurses have also been extracting blood samples from his intravenous catheter, or ‘line’ as it’s called, as well as from a vein in his arm so that they can match the two to make sure nothing nasty is getting in, or was lurking anywhere. The samples are also tested daily for any signs of new white cells (of which he has been at zero) to indicate whether the transplant is working. Yesterday, Sunday, the doctor reported that instead of zero in the white cell department, John now has a reading of 0.3. Hip-hip-hooray!!! Zipper-dee-do-da!! Fanfare it from the rooftops!! John has some new cells!!! The transplant is beginning to do its work. When the reading is 0.5 he is no longer classed as neutropenic, so off the the endangered species list.

 Home James?

Today, the doctor and the nurses have been very upbeat, to the extent that they are talking of sending him home TOMORROW!!!! We’ll wait to see if it happens but we are very excited at the prospect of having him home. (Slight caveat to that, actually –  I had been hoping to get the house thoroughly cleaned and the carpets shampooed before he came home, which, of course, I haven’t done, so he will return to a grubby-ish house. Me? Worry? No…. not a bit of it!!)

 As I said before, we are in good spirits, and still enjoying a joke and a laugh – and it’s even better now that we have news of things working, although there is still a way to go in keeping the various viruses and bugs that seem to lurk everywhere away from John. I have my sword ready…….

 So the brand new slippers duly arrived – this is one of my attempts to keep John germ-free – and I have sent them across to the hospital today for Paul to deliver. They will, of course, be coming back tomorrow. And what’s the betting the germ-laden ones come back home too?? Hoping they’ll find their way to the bin by themselves. Now, if only the caps will arrive tomorrow, that would be good!! Otherwise, it’s a bobble hat he’ll have to wear……..(I’ll take photos, I promise!! Tee-hee!!)

 And now, it’s my turn for some attention

In the meantime, whilst John has been hogging the limelight, I thought I’d have a go at trying to get some for myself. As some of you may already have seen on Facebook, I decided to do a dance with the pavement in the hospital car park. The pavement won the competition and, having landed flat on my face I now have the most enormous black eye. Very pretty. I was, of course in the right place, and hobbled into A&E, only to be ushered over the Adult Walk-in Centre for minor complaints. Minor??!! Minor??? Excuse me……….Anyway, the staff were all very kind, said all the right things, patted me on the head and sent me on my way with sage advice of to rest……..Hmm…(well, I have done today, anyway!).

 Next instalment to follow

Will update you again once John is home or there is more news to tell. 

 Lots of love 

 A very excited Anne

P.S. John’s post on Facebook:

   Hopefully it’s my last day, so it’s boiled egg for breakfast!!!

§ The Limbo Dance: signifying an emergence from death to life. §

2 September 2016: Email Update to friends and rellies – no description needed

Uh-oh….. it’s started!! Hair today…………….gone tomorrow………we’ve just ordered a couple of fetching caps…….

 

Lots of love

 Anne

§ The Limbo Dance: signifying an emergence from death to life. §

31 August 2016: Email Update to friends and rellies – celebrating our wonderful NHS

Dear all,

Getting all the attention

John continues in good spirits despite being in isolation and, on the whole, is beginning to feel a bit better than he did last week. The nurses and doctors are still very attentive with their needles, drips, thermometers, blood pressure equipment, stethoscopes, pills and torches (for peering into his mouth in the middle of the night!!). And he is still chatting up the nurses. He has also had one-to-ones with the dietitian and the radiologist, and he will maybe see a urologist too in due course. No expense or effort spared – thank God for good people and the NHS!!!

 Is it working?

We don’t yet know whether the donor cells are doing to their business but we hope to see some development of a new immune system by early next week. At the moment, John is still zero white cells of his own and not yet counting any new ones. The doctors seem to think this is par for the course and they are not indicating any concern. The tummy bug seems to be more controlled and, having had a couple of good night’s sleep over the weekend, John is feeling a bit more human.

 Where’s my Sunday Roast?

He did finally get his scan the other day after the abortive attempt last Wednesday. But it was touch and go whether it was going to happen. He was just looking forward to his Sunday roast and about to order his lunch when the nurse piped through the intercom, ‘John, sorry, you’re nil by mouth now to go down for your scan this afternoon.’ Oh dear, he was very disappointed. Anyway, I arrived and we sat chatting while his tummy rumbled and, about ten past four we both realised it would soon be tea-time, no scan done yet and the looming possibility of no tea either!! I toddled along to find out when he was to be taken to the radiology department and the nurse was shocked he’d not yet been wheeled down to the department. As it was a Sunday, there were not many staff on duty and each department was stretched, so the radiology department thought the nurses from Ward 19 would take him down, and the Ward 19 nurses thought the porter from the radiology department would come and collect!!! All’s well that ends well though, as one of John’s flirts, Kim, wheeled him down for his scan and, like a Sergeant Major I escorted them both to fend off any germs that might be floating about. 

 Pesky Bugs!!

But, where do these pesky bugs come from??? We have wiped and wiped every nook and cranny we can see (well, I have anyway!) and John wears a fetching face mask whenever he ventures from his room but, having almost nailed the tummy bug, there is a suggestion that John has an urine infection now, so he spends a lot of time up and down to the loo!! Once again, the doctors are on it and investigating, prescribing the right pills and check, check, checking!

 Bored? Not likely!

Up until the weekend, John has been catching up on his reading, watching a bit of TV and, of course, chatting to me and the kids when we are there or on the phone, but we know he is feeling a bit better because this week he has started thinking about designing a bedroom – a project Michael gave him to occupy the quiet hours – and he has been issuing instructions to his minions for printing off material from the web, providing suitable paper and card, and bringing in drawing equipment, etc so we know he’s still got his thinking cap on!!!

Soft Hands……

 Lots of things make us laugh or smile as he goes through this process, and we know there’s quite a way to go, but we have both commented that we have never seen his hands so soft and clean!!! For the time being, no longer the hands of a practical man out solving other people’s problems every day, but the hands of a poet!!! Tee-hee-hee!!

Keeping up

 I will do another update when there is something to tell. For those of you who are hoping for more frequent or more personal messages from me regarding John’s progress, apologies but this is a much as I can do for now – I hope you understand. No slight intended to anyone if I don’t respond to messages, phone calls or emails, it’s just that I am not finding the time or energy to do anything more. Everyone is important, but no-one is more important to me than John.

 All for now then – and thank you once again for all the cards, good wishes  and prayers – we are truly grateful.

 Lots of love

 Anne

P.S. John enjoying the view from his hospital bed……me!!!!

 

 

§ The Limbo Dance: signifying an emergence from death to life. §

26 August 2016: Email Update to friends and rellies after the transplant

Dear all,

 Transplant Done!

John had the donor stem cells infused on Wednesday afternoon, following the previous six-day period of conditioning therapy and then the commencement of immuno-suppressants. The infusion went well with no ill effects on the day. He had litres and litres (it seemed like, anyway!!) of hydrating drip both before and afterwards which resulted in visits to the loo every hour, on the hour, during Wednesday evening and through the night. Consequently, when I saw him yesterday he was a tad tired!!! 

The German Connection

The donor cells have been sourced through the Anthony Nolan Trust and come from Germany. We keep teasing John that he will start talking German soon!

 It’s not all plain sailing…..

John was due to have a scan on Wednesday too, as they have found he has a tummy bug – probably something he ate when we had a barbecue on the weekend before  he went into hospital. Unfortunately, left hand didn’t quite know what right hand was doing on this occasion (which is pretty unusual in our experience of Heartlands Hospital) and the scan didn’t happen, leaving John shivering in a corridor for half an hour. He wasn’t too amused, as you can imagine. 

 As a result of the bug, campylobactor, John has been upgraded once again to another room all to himself with very attentive staff fluttering round him, and cleaners (including me!!) cleaning like crazy to remove any trace of anything that might infect John or the other patients. We even have an ‘in’ and ‘out’ airlock system to bring things into the room or take them out again, and lovely yellow aprons to wear and lots of scrubbbing of hands in an ante room before entering His Lordship’s boudoir.

 What to expect 

I spoke to the Consultant yesterday and, despite the bug which they are treating, he was happy with progress and told us that everything is on track. 

We know that the next seven to ten days will be fairly grotty, as the immuno-suppressants can make you feel very unwell and, in particular, generate a very sore mouth. We have taken all possible precautions to manage that though, so we are hoping it won’t be too uncomfortable.

 And how’s he doing really?

Despite feeling unwell at times, John is maintaining a wicked sense of humour and we are having a bit of a giggle about all sorts of things, and he is, of course, flirting with any of the attractive nursing staff!! With one particular member of staff he has regular banter going and it cheers them both up.

 And Thank You one and all!

John has been very pleased to receive Get Well cards from those of you who have sent them, and grateful for the messages in them, as well as the texts, emails and Facebook comments sent through. He is concentrating hard on getting better so not always feeling up to responding to the many messages he’s receiving, so apologies to anyone who might hope for a reply and doesn’t get one!!  He is not up to visitors yet – just me and the kids – but I will let you know when he’s free to entertain.

 I, too, am very grateful for the support people are providing me – from the messages, and love offered, to the practical things like supper when I can’t be bothered to cook for myself, tidying my house up and doing my ironing when it threatens to overwhelm everything!! Thank you, thank you – what wonderful friends we have.

 With love from Anne

 

§ The Limbo Dance: signifying an emergence from death to life. §

12 August 2016: an email update to friends and rellies – Heads up!! John’s going in!! 

Dear all,

Just to let you know that John is preparing to go into hospital next Tuesday, 16 August, ready for a stem cell transplant the following week, on Wednesday 24 August. 

Comms

To keep everyone updated and avoid a mountain of individual correspondence, I am sending an email to myself and bcc-ing everyone in, so that you know what’s happening and don’t all get to be overloaded with everyone’s email addresses. I plan to send update emails as often as I can for those of you who want them. If you’d rather not get the emails, please let me know – thanks.

 Preparing for the transplant 

John went to the hospital yesterday to have a Hickman Line put in ready for the delivery of the chemo needed in the first week to blast his immune system, and then to receive the donor stem cells, plus, of course any other drug or potions they decide to give him intravenously. The procedure went very well and he is feeling very well in himself, which is all good news. He is aiming not to do any work now until his transplant is all done, but he is already bored and champing at the bit to do bits and pieces!! 

 What next? 

We expect John to be in hospital for about 4 – 6 weeks, depending on how things go. He will be in isolation for some of that time, and we have yet to establish visiting rights – apologies to all those of you who have been asking!! As soon as we know who can visit and when I will let you know.

 With love, Anne

 

§ The Limbo Dance: signifying an emergence from death to life. §

Pills

After the horrible scare in November 2015, the doctors chose a new drug to control John’s leukaemia. The drug was Idelalisib and, if he could tolerate any side effects, they thought he may be well for three years. The only trouble was, they didn’t have three years’ worth of data to know for sure.

It started well…..

Initially, things went well and there seemed to be no real side effects of the drug. John got sufficiently stronger to engage with life in general – even doing one or two jobs to keep his hand in to support the running of the business he’d founded over ten years ago. We were very hopeful, and happy with the John’s progress and, despite fatigue, we were able to thoroughly enjoy Christmas.

But we’re reviewing the situation….

We had a long list of the side effects of the drug and were just congratulating ourselves on John’s progress when, after three months of taking Idelalisib, he started with griping tummy pains and the occasional diarrhoea. The doctors monitored what was happening for a few weeks, and then decided that probably a rest from the drug, followed by a resumption of it at a lower dose, might do the trick.

Beam me up, Scottie!!

We were both tired after what had seemed a long time without a break, so we proposed to take a week away in the sun. The doctors approved the proposal, suspending the drug for three weeks, with a view to picking it up again after our holiday.

We had a good, restful time on our week away, but John was incredibly tired. Walking anywhere was a challenge, so our lazy days consisted of sleeping in, wandering down to the restaurant/bar to eat/drink and sunbathing by the pool. I punctuated the lazy days by doing the running about if we needed anything – a drink (free beer on tap), a newspaper, the forgotten sun-hat and, to John’s wry amusement, persistent reminders that he keep his hands off everything since there seemed to be people sneezing and coughing everywhere. Infection can be a killer.

More Pills

Once we were back home, the consultant, Paneesha, reduced the dose of the tablets to see if John could tolerate them a bit better. For a while, it worked. But then came the tummy gripes and diarrhoea again. Hmmm, what to do?

Change of plan

Earlier in the year, Paneesha had discussed with us the possibility of a stem cell transplant – formerly known as a bone marrow transplant. At the time, it felt like pills were the better way to go, so John didn’t opt for it. Paneesha said he’d keep the options open and start looking for a donor anyway…………..

And now………

So here we are. Pills are not working well enough, and discussions focus on the quality of life and the likelihood of more of the same – fatigue, diarrhoea, tummy pains, plus whatever else was on the list, if we stick with the pills. John is offered the transplant, and in June 2016 we accept.

The Updates begin

The Blog idea came from a friend who thought my emails following John’s progress were a good read – so stick with it, folks, and enjoy the Leukaemia Limbo Dance we’re experiencing – sometimes it’s fun and amusing, other times it’s frustrating and angry-making, but it’s life!!!