Author: anniesleath@hotmail.co.uk

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

19 September 2016 – Email Update to friends and rellies – So, it’s not all plain sailing…. but thank God for the NHS!

OK. This isn’t at all what I intended to write this evening. I had a great summary of John’s progress planned in my head. But……

Where is my Sunday Roast?

……….we were just patting ourselves on the back that nearly a month had elapsed since transplant and no nasty surprises when, of course, a nasty surprise came along today – and John is currently residing in the hospital again!! (What were those stats again? And our hope he’d be in the minority who didn’t succumb to something horrid?). Hopefully it won’t be too long, but he has picked up something which has spiked his temperature and made him feel unwell.  Another Sunday without his Sunday Roast!!! (For those of you on Facebook, you will remember how disappointed he was to miss out on that a few weeks ago!).

‘Come on down’!!

Typically, he was hoping to hold out and not go to hospital, but we have been told, in no uncertain terms, not to wait but to get in touch with hospital immediately there is a sign of anything untoward. Fortunately, he was feeling too poorly to resist me today!! And, of course, as soon as the triage nurse heard the symptoms there was no hesitation in telling us, just like in a game show, to ‘come on down’.

A well-drilled team

Once again, the staff at Heartlands Hospital have been/are brilliant. We arrived at A&E, where they immediately set up the process to get John anti-biotic-ed, rehydrated, cooled down, blood tested, sampled, x-rayed and generally made more comfortable. All this, despite an overflowing A&E, much of it (it seemed to us anyway) full of very drunk and shouty people guarded by an army of police officers – but attended to by determined, professional, and caring medics.

Taking on The Hickman Line

Apart from this blip, John has been doing very well and his blood counts have been quite satisfactory. The only concern (other than the usual concerns with a transplant) has been the re-activation of CMV (see last update about this) because of the Hickman line which is still in place. John is due to have that removed on Tuesday in the Day Unit, so all being well that will still go ahead.

The Fairground Sideshow

The Hickman line (sounds like a railway line, or a song, doesn’t it?) does have other advantages though. It’s ‘easy and direct access’ to the delivery of drugs or the taking of samples. So it’ll be sad to see it go. Especially as, if a drip needs to be set up, or blood needs to be taken using the standard ‘stick a needle in your arm’, the poor doctors and nurses have the devil of a job with John:

a) trying to find a suitable vein (the veins hide); or, b) having found a suitable vein, trying to keep it going (the veins pretend to be nice and plump, but give up after a few seconds); and, c) keeping their patience as they search and rummage around one, or other, or both arms in all sorts of unlikely places.

Sometimes, a nurse will give up and pass him onto someone else to ‘have a go’!! Definitely a bit like a game show now – ‘Roll up! Roll up! Find the vein!! Great prizes to be had – cheers and laughter when you find one!!’

And d’you know what? It does sometimes seem like they’re trying to get blood from a stone! Much to John’s amused resignation.

Drips, antibiotics and monitoring

Anyway, at the moment, they have made him as comfortable as they can and are feeding him with drips and antibiotics to put him back in the right road. And we know he’s not neutropenic – which is a GOOD thing on the transplant scale of things.He has been moved up to the Assessment Medical Unit for the time being, and they will liaise with Ward 19 (the Haematology/Oncology ward) tomorrow to see what’s what.

Watch this space

So, for the moment, I won’t regale you with the fun stories of the last week (hats and maids outfits……say no more!), as it’s now very late (having just got home from the hospital) and I’m going to go to bed too, and hope/pray that the ‘John News’ is better in the morning and he’s thoroughly on the mend.

With love, Anne

 

 

 

 

 

 

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

13 September 2016 – Email Update to friends and rellies: He’s settling in……. and our wonderful NHS

Nearly a week has elapsed since the euphoria of John coming home and the mad rush-around to get the house cleaned as best we could before he got here. And so far, he’s not doing too badly. 

Keeping Clean…

We went back to see the consultant, Dr Paneesha, on Friday and the blood counts show that they are coming up, so we are on the right track…….. John is, of course, at risk of infection and Dr Paneesha said he wouldn’t relax until at least nine months had gone by and John was still fighting fit, not having succumbed to any dreaded lurgy. So we are cleaning, cleaning, cleaning; taking our shoes off at the door (something we slovenly Sleaths have never really done before); barring the cats from the house; no snogging; and washing, washing washing!!  Note to self and others: must keep this up for the next year, don’t get complacent………..

Being a ‘difficult case’

John still has his Hickman line in place, but the consultant said it should now be taken out as there is a risk of CMV (Cytomegalovirus), which John indicated positive for when he was ill last November, but then indicated negative for just before his transplant.

Dr Paneesha said he is ‘a difficult case’ – well, there never has been anything straight forward with John of course!!! He always like to be unusual – CMV can be prevented by thoroughly washing hands with soap and water (especially after changing nappies!!!) and avoiding coming into contact with the saliva of young children. No snuggles with Freddie for a bit then! Or changing his nappy – which, of course, I am sure John was planning to do!! 

Can we please be in the minority for once?

We have been reading that 8 out of 10 patients have to go back into hospital within the first month having caught something, and often during the first year following complications, but we are hoping that for once, he’ll be in the 2 out of 10 people who get through without too many hiccups.

Enjoying the garden…

John is enjoying his time at home but he is very tired and has some days when he feels better than others – this is to be expected for a good while yet. He has been grateful for the warm weather and the chance to sit out in the garden. He has also been grateful for the very many chairs I have placed in the garden over the years.  He can stagger from one to another without getting too tired – see how thoughtful I have been? (For those of you who know my obsession with chairs, I hope you find this as amusing as we have!!). And he has been admiring the garden and the house from every conceivable angle due to my generosity!!

He is also wearing his trusty new hat (which I have yet to take a photo of) because even the autumn and spring sunshine can stimulate Graft versus Host disease, where the grafted cells attack his own cells as the enemy and which could make him feel very unwell. They can treat such a thing, and they are monitoring him at the moment for this just in case as it is quite common. 

……And enjoying trips out

John is venturing out into the streets, too, and has made a few trips to the shops to buy a paper, and we even went to Baddesley Clinton National Trust property on Saturday for a walk in the gardens to see their rather famous dahlia beds. He managed all the way round the garden path (which I had led him up….) and through the woods round the lake too. He slept well that night!! It was a rather damp day, but that didn’t dampen our spirits – we enjoyed dodging the people who were coming towards us, and John made great use of his hanky whenever there were children nearby, just in case there was a cough or a sneeze or even a breath!!

Check Up

We are due back to the clinic again on Friday, having progressed through the clinics, from the Wednesday clinic for check ups and monitoring, through the Monday clinic (next steps, getting ready for a transplant) to the Friday clinic (BMT – bone marrow transplant clinic) where he will be monitored as often as necessary. This may be weekly at first then fortnightly/monthly depending on how things go.

Celebrating our wonderful NHS

I am busier than ever – I thought it would be just relaxing now John’s home and putting my feet up – but, of course, there are no nice cleaning people to swab the room, floor and equipment every day; or nice cooks who make lovely meals; or nice nurses who sort out the pills and take his temperature; or healthcare assistants to change the sheets, or bring a cup of tea and a biscuit and a chat. How wonderful the NHS is and how brilliant those people are as they go about their daily duties under pressure – John and I see it every time we are there and can’t help but marvel at how well trained and well-informed they are. As we develop our own routine at home, we realise just how hard they have to work to keep the nation’s (and John’s) health going. And we are truly grateful that they are there for us.

Anyway, all for now – here is a lovely picture of John at Baddesley Clinton wearing his old beanie faithful alongside the wonderful display of dahlias.

Love from Anne 

 

 

 

 

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

6 September 2016: Email Update to friends and rellies – Jonny-boy is HOME!!! 

 Dear all,

Jonny-boy is HOME!!!

And said fetching caps arrived on time today, just in time for him to choose one and wear it on the journey back. Photos to follow in due course!!

Early days and recovery to be made over the next few months, but he has done well so far – one of the nurses nearly fell offer her chair when she heard he was going home today. So onwards and upwards.

Thank you to every one who continues to send their best wishes, good, positive thoughts and prayers to us – very much appreciated – and please keep them coming!! 

Lots of love from Anne

§ 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!!!

 

How it all started

Ten years ago, my husband, John, was diagnosed with CLL (Chronic Lymphocytic Leukaemia). We didn’t log the journey of his illness when it first started. With hope and faith in our hearts we just got on with our lives, interspersed with hospital visits, treatment and periods of remission.

A bit of a crisis – 2015

Last November, however, things came to a head and John was seriously ill. He had started on a drug trial which the doctors thought would be just right for him. Unfortunately this didn’t prove to be the case, and his body started to object by refusing to make any red cells, leading to severe anaemia. So much so, that he ended up in hospital being transfused with blood every day. And the cancer was having a field day – with his bone marrow over 90% infiltrated with cancer cells.

Clearly it was a very anxious time for everyone, including John. He eagerly awaited the daily blood transfusions, knowing that they were keeping him alive. He got weaker and weaker, being bed-bound. Despite trying to stay cheerful and celebrating his 65th birthday in hospital among the family with a cake and candles, he started thinking about putting his affairs in order.

At that time, I was refusing to accept that things might be that dire, and did loads of research on the internet about the options available. But I needn’t have worried, the doctors were putting their heads together and had come up with a  plan. Instead of trying to stem the tide of ever-increasing anaemia, they put him back on chemotherapy to address the ever-increasing leukaemia.

It worked. He came back from the brink and back to the land of the living. Much to his, and everyone’s relief. He, nor I, believe his work is yet done on this earth. There is more to come – we just don’t know what yet.

And the blog…..

And I have started this blog to chart the journey. John tells me he is dancing with cancer. But what sort of dance is it? A tango? A jitterbug?

No – I think it’s a Limbo Dance. Why? Because traditionally, the Limbo Dance started with the bar at the lowest possible height before being gradually gradually raised, to signify an emergence from death into life.