Posted by: glenswatman | April 2, 2012

20120321-31 SPAIN then back to ENGLAND for new treatment

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WEDNESDAY 21 MARCH – With flights in place I am very pleased to get a message from Netty to say she will pick us up at the airport.  Using up left over ingredients I make a fruit salad soaked in brandy and custard to go on top and a batch of ginger biscuits.  Now the flight is in place I intensify my research on motorhomes and now have 2 good possibilities in Yorkshire both Bessacarr E435’s.  Chance of a bit of roof top sunbathing.  I give Steve his afternoon injection and he says he hurt less than when the nurse did it.  By evening his back is aching but he still manages to drag himself out to the pub, and then back early in agony.  When he left it was a draw but by the time he got home QPR had scored 3 more goals to win so he didn’t miss much.  Steve doesn’t know what to do with himself so I give him a couple of neurofen, massage his back then roll him into bed with a hot water bottle.  Dr Rivas did warn us of this side effect from the immunity injections.

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THURSDAY 22 MARCH – Steve is really frail, sleeps most of the way to the hospital then walks slowly to the blood clinic.  He’s so weary we just return to the car and he rests until his 12.45 appointment, will be most surprised if he is fit to fly.  Dr Rivas calls us in and says the platelets are holding up and his immunity is up a bit but not enough, but if I give him another injection this afternoon it should make him strong enough for the flight.  We collect his blood test papers and thank her for everything.  Now we are leaving we visit Dr Fernandez to thank him.  A second lot of blood test has arrived for Netty but they also don’t match and neither do Claire’s so it’s all on Kevin again.  We’ve got first refusal on the motorhome at Halifax and the women will even deliver it to Claire’s on Saturday.  I’m pretty keen to proceed but Steve’s in a bit of a mood and just can’t handle it and says we must wait until after Monday.  Shame as it would have been lovely to get back and have our new home waiting.  I give Steve his afternoon injection and decide that as he seems in pain and weak I will phone the airline about special assistance.  If we want it tomorrow we can have wheelchair assistance and priority boarding just by mentioning it at check, well done Easyjet. I send an Email to the woman selling the motorhome telling it like it is and will leave the rest to destiny.

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FRIDAY 23 MARCH – Steve is still aching a lot so decides to stay in bed to try and get fit for tomorrow.  The Halifax motorhome woman has written to me and said that as the other potential buyers are messing them around she would rather hang on until early next week and give us first refusal, she sounds like a really kind and understanding woman and based on that I have a good feeling for the motorhome. I take some boxes round to John & Shirley’s along with some homemade ginger biscuits.  In the afternoon I give my tan a last top up then give the apartment a final clean through.  We want to take John & Shirley out for a last meal and return to the Chinese with the €6.95 (£6) sizzling menu.  The food is all excellent but by the end of the meal Steve is whacked.

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SATURDAY 24 MARCH – We are away at 7.30am dropping of laundry and a few last things with John & Shirley.  Seems strange to be making our final drive to Alicante and I do just remind Steve to turn off for the airport instead of carrying on to the hospital.  After dropping the car off we check in an enormous back that John has given us to enable us to take some extra stuff back. We decline the wheelchair offer but take up the speedy boarding to keep Steve away from the crowds.  He is considerably better today but we still have concerns his defences are low.  Prior to boarding Steve puts on his mask as an extra precaution.  It’s only a 2 ¾ hour flight but to us seems to take forever.  Can’t believe we are landing in Manchester ENGLAND as it is warm and sunny.  Netty picks us up at the departure drop off point and fills us in on family news on the journey to Market Drayton.  Mum is pleased to see us and looks very well although she has a nasty lingering cough.  After chatting to her I face the unpacking and the mountain of paperwork.  Steve has a letter from the Christie including a brochure outlining all the hospital facilities etc, just like we had at Alicante – not.  Sorting out bags is going to be really difficult as we have no idea what Monday will bring so I opt to go for just 2 light travel bags and we will muddle through or buy whatever else we may need.  I walk round town and buy the ingredients to make us all a cottage pie served with carrots, cauliflower and broccoli and Steve really tucks in.  I am suddenly full of cold and spend a restless night whilst Steve is up half the night watching sport on TV – what a pair.

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SUNDAY 25 MARCH – Late morning I take Mum up to Morrison’s shopping.  We then call round to Netty’s new bungalow where she has recently had the hall plastered.  It is an old but substantial 2 bedroom bungalow and they have already done heaps to modernise it and it is easy to visualise how nice it will be once all finished.  I drop Mum at home and pick up Steve for a drive to Lazy Days motorhomes.  They are relocating to different premises and have huge discounts on their large stock of motorhomes but not a salesman in sight to show us or the many other viewers round.  At least Steve has a chance to see the possible layouts of a smaller motorhome and agrees with me that the dinette opposite a sofa and a rear kitchen will best suit our future needs.  We can also see that even with a £5000 reduction their T reg ones at £13950 don’t seem as good a deal as the 2002 one with solar panels; refillable gas bottles and inverter at Halifax for our negotiated price £15000.   In the afternoon Mum is doing a concert at the Festival Hall for the “old folks”.  At the last minute one of her singers has cried off with a migraine so I end up volunteering to fill in the time by doing 3 slots with jokes.  The concert is a good mixture of age groups of her pupils, piano, trombone and flute and singers.  Mum carries them all thorough and my age related jokes seem to go down well.  In the evening she complains her hip is aching so I settle her in the lounge with a hot water bottle.

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MONDAY 26 MARCH – We get an early awakening when the phone rings, Mum’s cleaner is sick and won’t be coming.  Mum gets up but doesn’t look too well.  I ask how her hip is and she says that’s not too bad but she is still feeling dizzy and struggling to breath.  I have already suggested she goes back to the Doctor for a check up as I feel may be her asthma medication is no longer strong enough.  I noticed how little she ate yesterday and suggests she may feel better after breakfast.  As the cleaner isn’t coming I am happy to help so begin by cleaning the cooker.  I’m struggling to find scourers under the sink.  Steve’s asks Mum what she is doing and I turn to see her leaning over the side of the chair – to look for scourers under the sink?  Suddenly she begins making a strange gurgling noise in her throat then pitches sideways off the chair and head first onto the floor.  It’s obvious something serious is wrong so I ask Steve to phone for an ambulance whilst I clear the food from Mum’s mouth, get her head back and tidy her up into the near recovery position to which she fell.  She’s no conscious but not really coherent.  Emergency services tell us to turn her to her left side and at this point we see the 2 grazes, bit of a cut and lumps on her head.  I have no sooner put an ice cream tub onto this area than the ambulance men appear – less than 5 minutes.  They check for other injuries then get Mum into a chair and establish there is a problem as her heart beat is very slow.  I have to leave messages on Netty’s Ian’s and Bobby’s answer phone.  We have to leave soon to get Steve to hospital and I am torn what to do.  Luckily I manage to get the prison where they get word to Netty who arrives just before the ambulance leaves.  Netty will nip home to get chance then go to the Princess Royal whilst Steve and I head to The Christie in Manchester.  The Christie is the largest dedicated cancer hospital in Europe and fairly new.  After Steve has checked in and had his blood taken we set out to explore.  There is an information room with lots of brochures and a Macmillan cancer nurse who sits and talks to you.  A nice conservatory with comfy chairs leads out into a lovely garden with lots of benches and as it is a hot sunny day Steve lays out on a bench whilst I check out the car parks for possible motorhome parking.  Security say we can park and stay in the motorhome we just need to notify them.  Just before Steve’s appointment a nutritionist comes to Steve and talks through chemo side effects, food that may help and other foods that should help him put on weight.  Basically he needs to load up on choc ice and chips and other junk foods.  Dr Samar Kulkarni insists we just call him Samar.  There is no rush at all during our consultation and he goes over the history then explains his protocol.  In England he says there is no proof that a bone marrow transplant increases survival chances of people over 45.  It also shocks us to learn that Steve only has a 30 – 35% chance of making it to 5 years.  Worse is to come, the treatment plan is intense but all as a day patient.  In all 70 day visits for chemo over the next 6 months plus other visits for tests in between kicking off next Monday with Mon to Friday chemo for 4 weeks.  After the 6 months we will go into maintenance therapy which will eventually reduce to a monthly visit.  He also says we cannot live in a motorhome as campsites in the country would leave Steve prone to fungal infection from the spores and pollen in the air.   Samar says we need to be living with 10 miles of the hospital so that if we need an ambulance it will take Steve to The Christie and suggests we rent something nearby.  From our point of view it doesn’t get much worse.  My initial Emails to Samar led us to believe the treatment would be similar to Spain so we were expecting 2 more doses of 24 – hour chemo as an inpatient and 2 more lots of 3 chemo’s as an outpatient.  Although Samar asks if we have more questions our minds are spinning and we take our leave with an appointment booked for 10am next Monday.  I speak to Netty and learn that Mum has had 3 heart attacks, sounds like the one at home, another in the ambulance and a 3rd when Netty was alone with her in A & E.  They have already fitted a temporary pacemaker which has made her feel much better and tomorrow will fit a permanent one including a defibrillator.  In fact they reckon once this has been done Mum will feel better than she has done for ages and be able to return home and continue living alone.  Netty and my concern is the fact that had we not been there this morning we doubt Mum would be have survived.  It’s a terrible journey back; my driving is terrible as my mind is all over the shop, one minute I am belting along in the fast lane the next dawdling at 50 behind a lorry in the slow.  We hit all the rush hour traffic and it takes 2 hours to get to Claries, there’s no way we can be doing a 2 hour journey about 100 times to make day visits to the hospital.  Natasha is surprised to see us as she didn’t know we were coming.  Daniel arrives later and takes it all in his stride.  Claire is also upset by the day’s events and like us can’t see a solution. I phone the hospital and learn that Mum is sat up reading and doing really well so seemingly one less worry.

KEIGHLEY 1

TUESDAY 27 MARCH – Not much of a night for sleeping so Steve and I have had many discussions.  At the moment he can’t face the intensive chemo programme and we are confused as to why it should be so different to Spain.  We speculate we would have been better staying in Spain but I quickly conclude we would have had to come back at some point and maybe all that time and treatment would have been wasted and also we have enough to contend with considering what forward choices we have rather than pondering the “should have’s”.  We realise a big factor in opting for The Christie was based on the fact they perform the bone marrow transplants there and that Steve was going to be in an inpatient.  Now the goal posts have moved we could maybe have his treatment elsewhere.  I get up when Claire and the kids leave and find I just can’t stop bursting into tears.  I’m full of cold, have a racking cough and feel at the end of my tether however my strong side takes over and tells myself there are more productive things I can do.  I speak to the hospital who tell me Mum had another turn this morning but they have shocked her and got her stable again and once the  implantable cardioverter defibrillator (ICD)  is fitted that will solve the problem.  Mum may feel a little shock each time it kicks in to regulate her heartbeat or a major one if it stops.  It’s still early morning so at random I contact anyone I think may help as I really feel at wits end which way to go.  I ask for a call back from Samar at The Christie.  Speak to a lovely secretary at the Bradford Royal Infirmary who manages to get us a 1-hour consultation with a specialist tomorrow morning to find out what treatment he would recommend and whether it could be done there.  I contact estate agents in Manchester but 1 bedroom (grotty) flats are from £450, they want 6 months’ rent up front, 1 months’ rent as their fee, £35 each for referencing and then we would have council tax and other household bills all to live in an environment where we would be unlikely to be happy.  Neil our friend and ex GP chats on the phone and say the quantity and intensity of the treatment suggest that Steve is a worthy cause – deep joy.  Steve and I jokingly suggest we could contact all the different hospitals to get a bid in for how many chemo’s they can treat him in – but then which do you go with!  I make arrangements for us to view a motorhome in Pontefract and contact a guy about another near to Doncaster.  With this a free day I feel we must pull out all the stops and explore as many avenues as possible so we have information to hand to make a quick decision when needed.  We pop down to see Mom & Dad.  Dad looks really well and Mom is teary to have Steve back.  We head off to Pontefract; I drive but am not enjoying it at all.  The 2002 Bessacarr E435 has a lovely layout but is pretty shabby.  Owner Carrie is a really nice lady and selling due to a divorce settlement but her ex won’t take any lower offer.  It’s still a contender but we are not jumping through hoops.  Claire phones with very interesting news.  She spoke to a visiting director from Manchester to see if he knew of any place we would park and live in a motorhome within 10 miles of The Christie and he has ended up offering us parking by his house, 6 miles away, at least for the first month so now The Christie is a viable option.  In Doncaster we view a 2001 Hymer 544b Swing, higher mileage, bit cheaper but 1 metre shorter and feeling a bit cramped in size.  Driving back we conclude that as the Hymer only has a 2 burner stove versus 4 burners, grill and oven in the Bessacarr that will be the one if any.  Mum’s op has gone well and they will be sending her home later this week.  Even though we call back again we don’t get to speak to Samar and this is now a concern.  I miss the motorway exit due to roadworks and we trail miles out of our way and add ½ hour to the journey.  When we get back Claire is still out as someone at work had a bad fall and Claire had to take them to hospital.  The kids are out tonight and Richard has offered to cook us all a meal and arrives with bags of groceries.  Claire gets back in time for us to feast on juicy thick steak with sauce, potato wedges, onion rings, mini sweetcorn, peas and mushrooms – a veritable feast.  Steve falls asleep watching football and I opt to sleep in Natasha’s bed whilst Claire takes Daniels and Steve has hers – musical beds.

KEIGHLEY 2

WEDNESDAY 28 MARCH – I’ve had a bit more sleep and although still full of cold feel quite a bit better mentally and back on track.  Mum’s doing well with the new device fitted and they should be sending her home tomorrow so one less worry.  It takes us less than ½ hour to drive to Bradford Royal Infirmary.  Parking is easy enough if you walk 5 – 10 minutes from a side street which we do.  Funnily enough we are at the bottom of a hill so I tell Steve we have plenty of time and will just take it steady.  It ends up with me wheezing my way along and telling Steve to go ahead.  BRI is an old hospital with long corridors and we get lost but ask a nurse who turns out to work on the “Annette Fox” haematology ward and walks us there.  Everyone is extremely friendly.  The ward is dedicated to haematology and has its own reception rooms, day clinic, blood clinic and wards.  We meet with Dr Sam Ackroyd and special nurse Helen who leases with patients.  Again we feel we are given time to talk but this time they seem to want to hear more of our versions and adding questions rather than telling their side.  Contrary to The Christie Dr Ackroyd says they perform bone marrow transplants on people up to 60 especially with a sibling match.  If we went down that path the operation could be done at Leeds or Manchester.  It’s all rather hard to explain but when they leave the room we both agree we have a good feeling and the “something we couldn’t put our finger on” with Dr Samar is not there.  We’ve already had time to consider the knock on implications of 6 months of frequent treatment and being near family and friends so both agree to make an immediate decision to switch treatment to here.  They are really accommodating and do an immediate blood test, book Steve in to start chemo on Monday, will deal with all the referral stuff from The Christie and are also gathering all the sibling bone marrow results to send together to the main specialist in Leeds for final checking.  Dr Ackroyd also said living in a motorhome is not out of the question but realising we are in for a very long haul we will put that on the back burner.  It is a bit frustrating though when we phone Carrie to tell her we won’t be buying as she has had a row with her ex and is letting it go for £12500.  We visit Mom & Dad to tell them the news; essentially they are just happy that Steve is back in England.  We return to Claire’s where Steve rests whilst I do jobs around the house and get spaghetti bolognaise cooked for tea.  The news has talk of a petrol strike and already there are queues at the pumps.  We wouldn’t normally take any notice but need to drive down to the Midlands tomorrow to get Mum out of hospital then return for Steve’s appointment so drive out to fill up.  We call in to Keith & Sandra’s on the way back.  They have just come back from a terrific Asia and Australia cruise which we love hearing about.  More importantly for us they are able to listen to our accommodation ponderings and help us to realise that we really should be looking to rent rather than buy which cuts my research to half.

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THURSDAY 29 MARCH – Unsurprisingly Steve is starting with my cold, Dr Ackroyd did say this type of thing would be unavoidable and not to worry which his easier as his blood tests yesterday were good.  Mum is doing well and they are sending her home so we arrange to pick her up.  Call in to see David and Donna on the way down.  It’s another glorious day and we cut through the country with daffodils and blossom making it a pleasant drive.  Mum is in the departure lounge, sorry discharge room.  Her face is a real mess of bruises and she looks eligible to join “egg heads” judging by the lump where the floor got the better of her.  They wheel her out to the car complete with Zimmer frame.  Mum is very pleased to get home.  Settled in the lounge we have a good chat and find out a little more about what has been happening although Mum herself is unsure and thinks she has been having blackouts.  One thing is certain she appreciates that had we not been there on Monday things would have been very different – destiny.  Ian & Netty call round in the evening. Ian has also lost a lot of weight due to his running, in fact out of the 5 of us I am the only one putting it on.

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FRIDAY 30 MARCH – Mum is feeling a bit strange when she gets up so I send her back to bed for tea and toast whilst I make arrangements for a visit from the Doctor.  Good job I do as an hour so later she has a bad coughing fit and thinks she may have dislodged the ICD as she his getting lots of small shocks from it.  I nip out and do a panic fill of petrol before the duty Doctor calls.  He’s a really nice guy and gives Mum a thorough check over and says she has pulled a muscle.  He prescribes additional antibiotics for her chest infection to reduce her need to cough.  Doctor asks if there is anything else he can do for Mum and she says yes can he sort me out as I am coughing myself sick.  I’ve got a chest infection as well and my asthma is so bad my tubes are all narrow making all problems much worse.  I’m happy to accept a quick fix prescription for anti biotics to get rid of the infection and steroids for my asthma.  We’ve already chatted about lifestyle and he can’t see why we couldn’t be living in a motorhome and asks if I would like one adding to my prescription – yes please.  I seem to spend the rest of the day serving patients needs in the coronary care unit in the lounge and haematology in the bedroom with brief respite in the coughs and colds kitchen department.  With luck my medicines will kick in soon and I will be able to cope better.

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SATURDAY 31 MARCH – Steve is getting a bit worse with his cold so will spend most of his time in bed building up his strength for Monday.  I’m worried about Mum as she is sleeping on her side and it’s hard to see if she is breathing and I dare not creep around in case I give her a shock.  Knowing Bobby & Steph are coming I give it until 9am then start making deliberate noise in the kitchen which does the trick.  Mum’s in quite a bit of pain and her chest feels tight but with a metal box the size of a mobile phone stuck in there it is not surprising.  We get her dressed and into the kitchen for some unwanted breakfast that makes her feel a bit better. Bobby & Steph stay for a couple of hours and we get chance to learn about Steph’s new job and their house hunting.  In the afternoon I do a grocery shop and call round to Netty & Ian’s for the internet.  Ian is busy painting the hall and it is easy to see how nice it will look.  I do Mum’s hair with the new dry shampoo and it looks much better.  Good timing as she gets a visitor shortly after, Pat a pupils Mum.  I cook us a pork casserole for tea making enough for Mum for tomorrow and she eats really well.

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