Posted by: glenswatman | April 10, 2012

20120401-10 ENGLAND a gruelling week of chemo

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SUNDAY 1 APRIL 2012 – Mum’s doing really well and already pottering around doing things in the kitchen.  I help out by cleaning the bathroom and our quarters and then put some plants in the garden for her.  Netty is out on her first 5km run and finishes in just under 30 minutes which is great.  We leave at lunchtime to go to Newport knowing Netty is ready to take over and has next week booked off work.  At Pete & Carols they have Rob & Justine round for lunch as well.  Pete has cooked a tasty beef bourginion and we all get stuck in.  We hear all about their recent wedding anniversary holiday where they got to the airport and found out they had a wrong passport.  Think Pete will be living off Carol’s error for years to come.  They are both really pleased to see Steve as we are to see them.  Our mutual friend Dave Williams arrives later.  He has battled through non Hodgkin’s lymphoma a different type of blood cancer but with many similarities in treatment so it is good for him to chat with Steve.  Next we drive up to Paul & Elaine’s and for their first time meet their youngest grandson Tom and also Jack when Vicki returns from a walk.   Paul and Elaine also have lots to tell us and even offer use of their holiday caravan near the coast in Wales when Steve is well enough to visit.  They’ve had a couple of new additions since we last visited an extension studio for Matthew and a new puppy Ruby, both of which are lovely.  I drive back and make it just before it starts to get dark.  We’re moving into the visitors studio at Farish House in Keighley and Mom & Dad are there to let us in and welcome us.  We have a double bed, lounge area with sofa, 2 chairs, computer desk and coffee table.  There’s a new modern kitchen (but no cooker) and toilet and sink with a communal shower room down the hall.  It’s really very spacious after living in a motorhome and I am sure we will be very comfortable.  Claire calls round with Natasha and Azura and brings some of our things.  I do a bit of unpacking before we settle to bed.


MONDAY 2 APRIL – Over at Bradford Royal Infirmary we park in our usual spot of Squire Lane in time for our 10am appointment.  They soon take Steve for his bone marrow extraction out of the hip.  He says it is more painful than the chest but not as bad as the lumbar puncture which is to come.  I get a visit from Vicky at MacMillan support.  She is the financial advisor, immediately offers us a disabled sticker for parking, gets Steve to sign a form for free prescriptions which lasts 5-years and talks through our immediate financial circumstances.  Basically because we have savings the only thing we may get is the non means tested disability living allowance which I have 6 weeks to claim because I already have a dated form and if we get that at one of the mid rates then maybe also carers.  DLA varies from £19 to about £120 so it could make a big difference.  Helen tells us that Kevin doesn’t match for bone marrow and neither the sisters on the retest but Leeds did do a quick check and there are many people on the register who do match if Steve needs a transplant later.  In the waiting room they bring round hot drinks.  Steve must wait for a blood test followed by the lumbar puncture and they say it will be another couple of hours.  I pop out to get us some food and return to find Steve has been provided with some very nice commercially packaged sandwiches.  I head off again to explore the area and feel much like I did the first few days in Alicante, I don’t manage to find the castle or beach but it still feels like being in a foreign country with all the Asians around.   I check out property rentals with a few estate agents and find a community centre with a nice lounge area and good meals.  MacMillan have a well being centre where they offer complimentary therapies like reiki and massage, Vicky shows me around and says someone will call next week to talk to Steve and I and get us booked in.  There is certainly a huge range of back up support on offer here which will be a great help.  Steve lies still for an hour after the lumbar puncture and intrathecal chemical injection so it is after 5pm when we leave complete with pain killers and caffeine to stave off the lumbar puncture 10 days headaches that Steve is prone to get.  He is aching and weary so I drop him home then nip out to ASDA for an attempted shop and do manage to bag enough stuff for our evening meal.  There is a free laundry here with commercial machines and tumble dryers and each flat has time slots allocated and some are free for all.  I notice no machines in use so quickly put in our towels etc which smell a bit fusty after being stored.  As soon as I have turned the machine on I see a sign saying the laundry is not to be used between 6.30pm and 8am as it disturbs the people living above – oops.  Stuff an apology note on their doors as we don’t want to get black listed before we start.


TUESDAY 3 APRIL – Steve’s cold is about the same whilst I still can’t shake mine off or get to grips with my asthma.  We trot down the corridor to the communal shower and also discover a huge bathroom, all spotlessly clean.  It’s much like being on a campsite but without having to go out in the cold.  I need to get some stuff bought but down town most of the shops don’t open until 10am.  I visit the housing department to check our council housing options and arrange to view a bungalow later.  We’ve to be at hospital for 11am so no time for anything else.  There are some staff problems at the hospital and the chemicals are not being sent up from the pharmacy on time.  One of Steve’s is tailor made to his height and weight and has a very short lifespan.  They say it will be around 2pm before they can start and take 3 hours.  I cancel the property viewing then drive down to Morissons to try and do a better shop remembering to buy basic stuff like salt and pepper, picking up a deluxe fresh ready meal for tonight but still managing to forget simple things like a can opener.  The chemo is given in a day room with 10 chairs and one bed so not only do you have to wait for your chemicals but also for a chair to become available.  Steve’s treatment starts with a flushing drug, then 250 ml of Cytarabine, a flush, 1 litre of Etoposide (which takes 2-hours to go through) then a final flush.  All told about 3 ½ hours and 2 litres of fluid.  I collect his prescription drugs from the pharmacy, an incredible array of essential stuff – tablets for anti fungal, anti viral, anti nausea, anti chest infection, sachets of stuff to ease the constipation that the other drugs will give him and special mouth wash to keep the ulcers at bay.   Again it’s after 5pm before we leave.  Mom and Dad welcome us back and we stop for a drink before dinner.  The Morrisons pork with apple in sauce and mustard mash is really nice and we realise that by sliding out the tray on the computer table and pulling up the arm chairs we have a good dining set up.  Steve feels whacked after all the waiting around, chemo and drugs so heads to bed.  I set about getting the kitchen in order unpacking the groceries and things like glassware that I have bought.


WEDNESDAY 4 APRIL – It’s been snowing in the night and I get a message to say the lady who was going to show the council house is snowed in.  I walk round to King Street and take a peak, reasonable location but even smaller than the studio we are in now.  I call in to notify Steve’s Doctor he is back.  The surgery computers are down and people can’t get in due to snow so he calls me in for a consultation.  I bring him up to date about Steve then he asks how I am doing. He listens to my chest and says the infection is gone but debris still there so prescribes a spacer to make my asthma spray more effective.  Checking out what is available at the DSS furniture warehouse I bump into an old friend Anne Sheriff, one of Claire’s swimming mates Mum’s.  At last a productive morning.  Call the hospital at 11.30am and they are ready for Steve. Due to the snow we take the main road rather than the short cut over the tops.  We can still see the morning’s problems up Cottingley Bank with many cars abandoned at the roadside.   Whilst Steve is having his chemo we get a call offering us a 4pm appointment at the Bradford and Airedale Cancer well being centre with Janet.  She talks through how we are coping, our health and mental issues then tells us what they can offer.  Each of us can have 6 free complimentary therapies such as massage, reflexology, hypnosis for relaxation etc. Also each Thursday is a well being class including yoga which I will attend tomorrow whilst Steve is having chemo.  When we get home Mom has unearthed a small slow cook pot which she has never used so we now have more scope for cooking proper food.  I meet Tracy at her daughters Anna Street house as a possible rental.  It’s nice enough but with the kitchen down steep steps in the basement, first floor only really having single bedrooms (could get a big bed in at a squeeze) and the main bed in the attic it may be a struggle for Steve but not totally out of the question.  At the moment I am really just gathering information for when we are ready to make further decisions – given a choice we would stay at the studio!  Pop up to Claire’s, she is full of cold so doesn’t want to see Steve.


THURSDAY 5 APRIL – I meet Maggie at the King Street house and whilst very small it has distinct possibilities.  It’s a small semi detached bungalow surrounded by communal grassy areas which in the future will be portioned into private gardens.  The kitchen is new, bathroom a good size and she would ask for a longer bath with over the top shower to accommodate Steve’s needs.  Biggest problem is that main room for the bed and lounge are small and a king sized bed would just about fill the sleeping area.  On the plus size the council don’t take a month’s rent as a fee, only need 1 month up front and although they prefer you to take it for a year you can get out with just 1 months notice.  Steve is feeling pretty unwell and I mention this at the hospital so they speak to his Doctor and before the chemo give him some extra anti nausea and headache drugs and prescribe different anti nausea tablets.  They say that all side effects must be mentioned as many are controllable with drugs and make the chemo treatment more tolerable.  When they weigh him he has put on 4 kilo’s since last week, more due to the sheer volume of chemo fluids rather than my feeding him up.  In the afternoon I go over to the cancer centre where just two of us take up Pat’s well being class.  It begins with a talk about water quality and health cooking then goes into a half an hour relaxation talk.  For parts of it I am able to clear my mind and it certainly beats sitting in the day room listening to everyone’s drip alarm going off!  Pat runs yoga classes in Keighley but the problem is you have to sign up for 6 week sessions and our timetable is uncertain at the moment.  We get home and the meal I left in the slow cooker is ready and waiting and has worked out well.  Soon after eating we get a visitor.  Steve’s old neighbour and best man Richard now delivers cars around the country and today has made a big detour to come and visit.  It’s been a few years since we saw him so lots to catch up and a nice boost for Steve.  Half an hour after Richard leaves Lisa, Mick and Sian turn up.  They are having a new house built so we get to see the plans and progress on the I pad.  Steve is pretty weary so retires to lie on the bed whilst we chat then make tentative arrangements to visit them on Sunday.  It’s not a good night for Steve with him feeling sickly again, headachy and unable to get any comfortable position.  We are also pondering the sad news that our friend Ron in New Zealand has just been diagnosed with cancer in 3 parts of his body, were hoping to see them when they came over to Europe later this year but their future now also looks uncertain.  I know we have heightened awareness but it seems that everything you read or hear about at the moment mentions cancer.


FRIDAY 6 APRIL – It’s Good Friday so traffic light and few people at hospital.  The day ward is closed and Steve is admitted onto the ward and given a bed.  We’re in a shared room with a man called Graham who talks nonstop.  He moans about all the ambulances arriving through the night to bring in people from nearby St Luke’s’ hospital which is closing.  He blames all the NHS problems on Margaret Thatcher, need I say more!  Steve finds the treatment more comfortable lying on the bed and even manages a nap.  He’s still whacked when we leave 4-hours later so I drop him home then head out to buy a birthday cake for Claire.  I pick up a kids fun lion shaped one which she is delighted with.  Richard and Azura are visiting and we sit around playing the card game Newmarket.  Later in the evening Claire and the kids call round to see Steve.  Anticipating a bad night I run a hot bath for Steve then we lie down listening to relaxation tapes which seem to help in getting Steve a little more sleep initially although he now has a lot of pain in his shoulder.


SATURDAY 7 APRIL – I leave Steve in bed and drive up to Claire’s.  Along with a friend and the kids they are taking the train to London for a theatre break to see “Les Mis”.  I drop them at the railway station then pick up Steve for his last chemo in this cycle.  There seem to be plenty of nurse and the ward quiet but it is still 1 ½ hours before they get around to putting a line in and starting treatment.  Steve puts the TV on so we can watch the boat race complete with swimmer disturbing the race, an oar breaking and one of the crew collapsing, feel sure this will come up in quizzes in the future.  We’re through by about 3pm and our next appointment is on Thursday for blood tests.  On the way back we stop at Nancy’s in Wilsden.  It’s the first time we have seen her since Rod died in February so quite an emotional time.  She seems to take comfort from relating the story to us and is obviously very angry that his death could have been avoided had full hospital checks been carried out.  We look at the photos of Michelle’s wedding last year and hear how well Jenny is doing at her pub.  By the time we have eaten it is getting on for 9pm and Steve is starting to fade so we head home.


SUNDAY 8 APRIL – Although far from perfect I have one of my best stretches of sleep for weeks; think it is the relief at getting this first cycle of chemo out of the way.  I get up early to bag a slot in the laundry, residents have their own time slots but visitors have to grab what they can.  Steve’s is feeling so well he suggests a walk, make it for about 1km but he is weary coming back.  In the afternoon we drive over to Lisa & Mick’s.  Netty, Mark and Jade arrive and it is a mad house.  We play a stupid game on the TV screen where you have to spot which things move or disappear and it does your head in.  Take a walk to see the foundation of Lisa’s new home nearby.  Order a Chinese take-away to eat before we leave.


MONDAY 9 APRIL – It’s not a pleasant morning so we drive out to visit John & Jenny.  Jenny has ovarian cancer that cannot be cured but has palliative chemo every few weeks.  It’s been over 4-years since she was diagnosed and they have had a rough ride but can still offer us a lot of positive advice.  I pick Claire and the kids up from the station and they have had a brilliant time in London and loved Les Mis.  Netty, Mark and Jade arrive at Mom and Dad’s and in the absence of all the computer technology Mark organise a “what am I” boxed game.  In the afternoon they join us in the studio along with Claire and somehow we all fit in.  Today Steve has discovered a rash with small scabs on his arm but it sounds like this is a side effect of one of his chemo treatments and nothing to worry about.  Steve’s a bit whacked in the evening so watches a movie with Dad whilst I go to bingo with Mom.  £3 buys you 10 games; I win a line and in fact win a double line but can’t spit out my claim quick enough and lose it as the next number has been called.  Reckon some of these old folks could teach me a thing or two.



TUESDAY 10 APRIL – It seems like quite a nice morning so I set out walking to visit a number of shops.  Got it wrong as the April showers soon kick in and I managed to get drenched 3 times.  Hit the half price bargain time at Morissons and we are spoilt for choice and end up with Thai chicken curry and a rack of maple coated ribs.  In the afternoon we pick up a few things from Claire’s including Daniel who comes back and plays cards with us.  He’s really good at Canasta and is soon well ahead of Steve.  In the evening Steve pops out to Mick Plunketts to watch Liverpool on TV.



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