Posted by: glenswatman | February 12, 2013

20130201-10 Family visit and home again


Friday 1 February 2013 – I pick David up for the journey to Leeds.  Steve is pleasantly surprised to see him and they put the world of football to rights.  We planned to go to the Chinese for lunch but when Steve mentions it to Nurse Luke he is told he can’t go out with the cannula in.  We explain yesterday’s saga and that the infection control Matron and Dr Gilleece have approved it.  This is not good enough for Sister Natalie who insists on making phone calls to verify it all.  By the time she gets back to us it is too late for lunch.  The bottom line is that we can walk anywhere within the NHS area but if we go out of it we must sign a disclaimer to say that we won’t sue the hospital should Steve get an infection, however they will treat him for it.  Utter madness or what?  David heads back and I walk with Steve, within the NHS boundaries, to the Robert Ogden Centre for his hypnotherapy appointment with Nick.  Steve goes in early and Nick comes out and tells me he has time to give me a session as well.  It’s not really what I expected but he asks about any concerns (I throw in my binge eating) then talks me through some relaxation.  I am fully aware of what he is saying the whole way through and the things he talks about are all I would wish for myself.  At the end he counts back from 5 to 1 telling me to come round in my own time.  I do feel quite sleepy and it takes me a couple of times to get my eyes to stay open but I really don’t feel like anything has happened.  Steve finds it all reinforces his new regime to stop worrying about things he can’t change and to concentrate on each day at a time and make the most of it.  Back on the ward Suresh has the results of the bone marrow extraction and lumbar puncture.  Its great news as there is no cancer showing and the stem cells look to be working well.  Couldn’t ask for more at this stage.  I call in to ASDA on the way home and knowing we have visitors for dinner on Sunday I can’t resist a selection of luxury desserts at half price.  Back home Steve calls to say there is now virus at all showing on the CMV tests and they plan to do another on Sunday and if the results on Monday are negative he can come home then.  I am so delighted with all this news that I celebrate with 2 sandwiches, 2 vanilla slices and 2 Cadbury crème eggs.  So much for the hypnotherapy!


SATURDAY 2 FEBRUARY – I plan an early visit knowing Steve likes to watch sport on TV in the afternoon.  It’s a sunny but cold day so we set out on a walk into and around Leeds.  We cover almost 5 miles without any problems.  When we get back we notice blood around the cannula site and Sister Honey checks it and says it is bent and must come out, hard to believe that the walk has caused it and more likely it has been when Steve was dressing.  It’s lovely to get home in the light and I make the most of it to create a feature by painting one wall of the bathroom blue.  Next I do as much prepping as possible for tomorrow’s dinner including making a marinade for the pork, then give the house an extra clean.  By the time I’m done it is 8pm.


SUNDAY 3 FEBRUARY – I put the pork in the oven at 100C as I leave at 8am.  Steve has only just been unhooked so I wait in the car park whilst he showers.  We arrive home at 10am and Steve initially says the house smells nice with the meat roasting.  Then we open the lounge door and find the room full of smoke.  The kitchen is worse so I turn off the oven and fling open the windows.  It would appear that the oven thermostat is not working as the pork is burn to a cinder.  Reckon we were lucky to get back when we did or we could have ended up with a fire.  Once we are freshened up and I’ve cleaned the wall behind the cooker I go out to buy more pork and pick up Daniel and Natasha and David.  Unfortunately Donna won’t be joining us for lunch as she has the back ends of a cold.  It was David’s birthday last week so I surprise him with a Fireman Sam birthday cake.  The second attempt at lunch works well and there is even enough to plate some up for Donna and Claire. David walks back to the studio whilst we settle down with the kids for a serious game of Canasta; they are both really good at it now.  Steve drops us at Claire’s’, where I am “babysitting” and staying the night then heads off to join David at The Royal Oak pub to watch the football.   Once the game is over he drives himself back to hospital and calls me to confirm he has checked back in.  Daniel cooks us some nachos for tea but other than that I don’t see them at all as they stay in their rooms.  Claire arrives back at 1.30am having been to Manchester to see a recording of “Britain’s got talent”.  Needless to say she is shattered.


MONDAY 4 JANUARY – I am woken at silly o’clock, something starting with 6.  Once the family have left I decided to doze a little and am amazed to find it is 9.20am when I wake.  My bus passes Sandra’s so I hop off for half an hour for a last chat before they head off to Tenerife tomorrow.  I arrive in Steve’s room when Dr Cook and other Doctors and registrars are there, had I not heard their light tone I might have been panicking.  Our Australian friend who had CMV linked to AIDS suggested we ask for CD4 and CD8 results and percentages to know how Steve’s immunity is doing.  Dr Cook says these markers are not used after a transplant but is intrigued to know why we ask and then proceeds to educate us all about the immune system.  If we ever get a quiz question asking what the second best immune defence is after blood we will now know it is the skin.  After lunch we head to the Robert Ogden centre for Reiki sessions.  We get back to the ward and hang around for Steve’s blood tests and discharge.  Time drags on and we are getting concerned knowing the lab shuts at 5pm.  By 6pm Sister Honey comes in to us and tells us it looks like Steve’s bloods have been lost so they will have to do another test tomorrow.  Very frustrating but Steve takes it in his stride whilst I head home.  I have bad connections and must catch a taxi in Keighley so dig out the fare and look for my keys.  At this point I realise the house keys are on the same key ring as the car keys and Steve has them.  Claire has spares but is out at an exercise class in Bingley so I opt to wait at Sandra’s.  Again I have bad bus connections and to avoid a half hour wait in the bus station head to Steve’s Mom and Dad’s.  There’s a cold wind and sleet coming down so I feeling a little sorry for myself and worse so when no one answers their phone or door bell.  I finally remember that Mom is in at Bingo so hammer on the window to get let in.  Half an hour later Claire’s friend Janine picks me up (Claire is going to Richards) with my keys and runs me home.  It’s almost 8.30pm and Steve’s best man Richard is coming to stay overnight but luckily has been delayed by snow on the way down from Glasgow.  I’ve just got time to make up the bed and prepare him a meal for his 10pm arrival.  We’re both whacked so bed down at 11pm


TUESDAY 5 FEBRUARY – Richard has to drop the car in Leeds at 8.30am and is up just after 6am showering.  I force myself out of bed to do his breakfast then crack on with washing when he leaves at 7am.  There’s been quite a lot of snow but over the next couple of hours we get heavy blizzards followed by sunshine then rain which washes it away and then the cycle repeats.  Again I have bad connections and it takes almost 2 hours for me to get to Leeds.  Steve’s confirms that they have lost his bloods from Sunday so took some this morning and are hoping to get the results tonight.  Lisa is on holiday this week so after lunch we drive over and spend the afternoon chatting and watching TV whilst being distracted by all manner of works vehicles passing her window as she lives on an unfinished housing estate.  Just after 5pm we get the great news that Steve’s tests were negative and he can check out.  We wait for Mick, Sian and her boyfriend Lewis to return and tuck into a roast dinner before heading back into Leeds.  His bags are packed but we are just leaving when I realise we don’t have his medication.  The hunt around and find it but the paperwork has not been printed off.  Sister assures me we can just use the labels on each prescription to know what to give.  Its 9pm when we arrive home with Steve really happy and me tired out.  Checking the medication there is confusion so we phone for guidance and will get full confirmation tomorrow.  It’s lovely to snuggle up in bed together but I feel like I am sleeping with an octopus as Steve’s limbs continually curl around me.


WEDNESDAY 6 FEBRUARY – I’ve decided not to leave the house or get dressed today so we are having a duvet day.  A number of phone calls later and Steve’s medication is sorted and we need to give him an extra tablet.  I give the bathroom a second coat of paint on the feature wall and the oven a good clean.  Steve enjoys his pork chasseur dinner and homemade tomato soup tea but as is often the case when he gets home he overeats and spends extra time on the loo.


THURSDAY 7 FEBRUARY – After lunch I do some shopping then we call in to Mom & Dad’s.  Dad is playing dominoes with a few other guys and is really enjoying it.  We’ve only been home a few minutes when Richard calls in, having missed Steve on Monday.  Settled down for the evening we get a call from Natasha to ask if she and Claire can call in for supper.


FRIDAY 8 FEBRUARY – Steve says he feels fine but is happy spending the morning in bed.  I potter around trying to fill my time constructively!


SATURDAY 9 FEBRUARY – We walk to collect the paper and then I do a bit of pruning in the garden.  Late afternoon Claire calls to say Daniel has the makings of a cold so do we want to cancel going round there for a curry tonight, sadly yes we do.  Next I get a call from Carol to say that they and the Evo’s are crying off on the visit tomorrow due to snow being forecast.  So much for our interesting weekend.


SUNDAY 10 FEBRUARY – We’ve had a little snow but rain has cleared most of it.  Steve’s not been feeling 100% since coming home and has headaches, stomach upsets and itchy skin, probably all part of slight graft versus host disease but we will ask more next Friday.  We’re already trying to eat a mixture of the “clean diet” recommended by the hospital mixed with an anti cancer diet.  The new craze diet where you eat very little on 2 days of the week and the rest normal sounds good so today we just have light meals.  All goes well until mid afternoon when I get hunger pangs and end up baking a sponge cake and filling it with banoffee spread. Think part of it is boredom with just hanging around home as cold wet days don’t tempt us to go out at all.




  1. Wow- what ‘ups and downs’ you are both experiencing- and managing to keep a cheery disposition too! Let’s hope the continuing improvement with Steve’s health does not have any more ‘blips’ and confusions with medication and blood test results- what is the problem these days with high tech data bases etc? It never ceases to amaze me!
    Let’s hope too that Spring arrives soon- altho I gather that it came briefly this wekend in many parts of UK!
    I was in Devon and the South the previous week- hence only just getting to respond to your extremely interesting and detailed blog Glen.
    Keep on ‘keeping us posted’- and don’t forget when the time comes and Steve can travel- you are always welcome !
    Love A and B

    • Hi Alison & Bob, great to hear from you. Life sort of settling down other than the blood test uncertainties but Steve is really well in himself and coping with a few minor side effects. Have just had 3 really nice days away in a Hotel and did day trips to the coast, our first coastal visit in this country! We do intend getting back to Spain for sure so appreciate your offer to visit and may end up wanting to rent your beach flat at some point, but first things first and we have to get Steve through is first year. Think he will be having his childhood injections soon which will be another milestone!

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