Posted by: glenswatman | June 1, 2012

20120521-31 Good times but with a bit of a scare thrown in for good measure

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MONDAY 21 MAY – We’re back at the hospital by 10.30am and Steve is on the ward where they have saved him a bed. They take his blood and clean the Hickman Line but then everything stalls a no one knows about the Hearth echo test, even though the Doctor said he was booked. Eventually we speak to Helen who tells us they can’t do it today but she will phone us with the blood test results later (Steve may have to be readmitted) but we can go ahead to Leeds where I have been offered an emergency dental appointment at 1.30pm. At the dental clinic they make various assessments considering it could be any of the 3 rear teeth causing the problem. Finally teacher Gillian suggests they drill out the filling that was done 3 weeks ago, replace it with a temporary one to work out whether tooth number 7 is the culprit or one of many. The injections seem not to be working and by the 3rd one I am getting in a bit of a state remembering how I had 6 injections in Spain to no avail. The student suggests rather than pull out he will call the teacher to try one more injection. This time she hits the spot (just a millimetre from where the student was aiming) and within a minute I am numb. From this I would conclude that the experienced German dentist in Spain did not have enough experience to know where to inject. They drill out the filling and put in a new one, by which time almost 3 hours have passed and my mouth is extremely sore. Based on this with give up on the vague idea we had to visit relatives in Wakefield and head back to BRI. Steve’s prescriptions were not ready earlier and still aren’t but someone from the ward goes to collect them. The downside of Steve being treated on the ward is that you have to wait for all the other patients’ prescriptions to be ready and they are done in bulk. I return to the car with 2 carrier bags full of stuff. Arrive home minutes after Adrian who is delivering the washer dryer I have bought from Sandra. It belonged to her Dad who died and looks great. Adrian and a friend fit it in place and plumb it in but we find a spare pipe. Adrian concludes this is for the hot fill but the pipe under our sink is missing a tap and this must be fixed before fitting can complete. In the meantime I try to use it but it won’t fill. On line I find out this model is cold fill only but that 2 cold pipes must be connected to the machine then through a “Y” piece to a single cold fill. Sandra & Keith call for a visit and none of us have the strength to make a secure connection in a fiddly area full of pipes so Sandra arranges for Adrian to call back tomorrow. We have some good conversation and laughs which makes us feel even better.

TUESDAY 22 MAY – At last summer has arrived. I head off to do some quick shopping including buying a 32” flat screen TV where ASDA have the Sharp on offer from £249 down to £197. When I get back Steve is out in the garden doing a bit of weeding, or maybe pulling up shrubs! We meet the neighbour behind us, Paul who runs a bar and restaurant in Shipley whilst his wife Carrie is away most days as she works for KLM airline. Our adjoining neighbour is Edna who lives alone. Her daughter Barbara is visiting and she has recently moved into a static caravan on Bronte Caravan car park. Our other neighbour Brigit we have already met along with her puppy Deano. It’s almost like the world has suddenly come out along with the sunshine. In the afternoon we are enjoying a walk around the area when Helen calls. Steve’s blood counts are coming up fast so they have him booked for heart echo; blood and eye test on Friday and will repeat the bloods on Monday with a view to starting the next chemo session on Tuesday. This is a 6 week regime with day chemo 2 or 3 times a week and other in tablet form plus some spinal injections and other delights. I mention we are out walking and she says because of the chemo it is not good for Steve to be out in full sun and he must use sunscreen. We make a quick short cut home. In the evening Adrian arrives along with his family, wife Louise and kids Zara and baby Ryan who I have never seen. He tightens up the washing machine connection sufficiently for me to use it but will pop back tomorrow with some tape to control a tiny leak. Within minutes I have my first load in. Finally I think I have gathered all the major items we want for the bungalow, probably at a cost of around £500 so not so much of an investment if we get chance to go roaming again.
WEDNESDAY 24 MAY – Making the most of the sun I crack on with washing and get it on the line. We put together a salad to take up to Claire’s’ for lunch as she is studying for her final chartered accountants exam tomorrow. In the afternoon Mom & Dad join us sitting out in the garden. I suggest a drive up to the Tarn for a walk. Mom & Dad manage to walk as far as the first picnic bench whilst Steve and I do a couple of circuits. In the evening Keith & Sandra pick us up to go the The Curry House as they have a Wednesday evening 5 courses for £7.95 deal. It’s obviously very good as the place is packed out and they cannot offer a table for 45 minutes. Opt to book for next Wednesday then go to Shimla for a curry. Steve and I have the award winning Dasi meals which are really tasty.

THURSDAY 25 MAY – Borrowing Keith’s step ladders I am able to finish the painting over the top of the wardrobes and put that job to bed. After my shower I am making the bed when I hear the shower turn itself on. Worse still it won’t turn off so Steve hops in and has his then we have to turn it all off at the mains. We report it to the council who will fix it later today – seems they are extremely efficient landlords. Early afternoon we head to Saltaire to visit fellow motorhome travellers Les & Margaret. Over the course of about 4-hours we hear many travel stories and enjoy a 3 course meal. Steve goes bowling in the evening, another late session with him arriving home around 11.30pm but he seems to have coped well.

FRIDAY 26 MAY – Steve is feeling so well he insists on driving to the hospital alone and drops me in town. I walk back and although it is almost a mile uphill I manage it in less than 20 minutes. Claire lets me know she has had the results of previous practical accountant’s exams so just needs yesterdays pass to be fully qualified. It’s another hot sunny day so I crack on with washing and clean the outside of the windows and frames. In the afternoon my bargain £25 fridge/freezer dies. I fiddle with the temperature dial, move it away from the wall and dust the fins but to no avail. On line I try to locate another second hand one, all around £100 but drop lucky at Harry’s (where I bought the cooker, arm chair and TV stand) and he has a Zanussi for £40 which I will go to see if Steve is back in time today or tomorrow morning. I fiddle around at the back of the freezer tapping things and jiggling wires but it’s no good. Whilst on my hands and knees cleaning the bedroom carpet I suddenly hear the fridge/freezer start up – deep joy. Have a feeling it may be on its way out as the motor never stops running but at least this buys me time. Steve gets back around 5pm. We already know the chemo is having effects on his body as the CT scan showed fluid on his lungs. Today the heart echo shows something unusual with a valve, his blood tests how his liver is not up to the correct level and finally the eye tests confirms there is damage behind his left eye. Suspect this will mean they will keep a closer eye on what drugs they are using and repeat these tests more often. The latest plan is for blood tests on Monday, in the hope the liver one has improved then 2 types of chemo by a drip on Tuesday then spinal injection on Wednesday, all part of the next 6 week cycle. Still feel very pleased at how well Steve is feeling this time and how much we are managing to do.

SATURDAY 26 MAY – I nip out for drinks and food before our guests arrive. First are Netty & Mark with Mom & Dad as they stopped over last night. Netty has brought up our Vienna wall clock that Kevin had been storing for us plus some things to hang on our walls. It’s another hot sunny day so we set out the garden chairs and also dining ones in the garden. Netty & Ian arrive shortly after, also bringing stuff for the bungalow – it’s like Christmas. They all seem impressed with how homely we have got the place looking. I serve most of us with sangria and we feast on pizza and quiche. Dad starts to feel weary so they head home for him to have a nap. Both the Netty’s are staying in hotels so leave mid afternoon giving Steve chance for a rest. In the evening we pick up Mom and Dad and head to the Liberal Club in Yeadon where Sian is having her 21st birthday party. There’s a disco and on the tables party poppers, balloons to be blown up and fired and snacks. Most of the family are there so we can have a good catch up and also meet Stacey’s boyfriend Paul. It takes a bit of organising but we manage to get Claire, Richard and the kids over after swimming then Netty & Ian join us. I remember the moves to a few of the cheesy dance songs and Daniel and the girls also join in. Just after 10.30pm both Steve and Dad are feeling a bit weary so we head home and Daniel decides to join us and check out the sofa bed in the lounge.

SUNDAY 27 MAY – Daniel says he has slept well on the sofa bed but is still unhappy to be got up early so we can drop him at home (at 10.30am). We continue to Ilkley where we have been invited to Cameron and Vivien’s for lunch. They live on the outskirts of town in a lovely house with great views at the back. Vivien says it is good to be able to chat about Steve & Cameron’s illness as they have few friends and don’t often air the subject. It’s actually quite funny over lunch when they begin comparing Hickman lines. We enjoy the roast beef dinner with real Yorkshire puddings, something I must perfect myself now I have an oven I can become familiar with. Vivien has bought us a house warming gift of some glass tumblers and also rummages through her cupboards and kits me out with some of her spare cookery trays etc. We should bump into them on Wednesday when Cameron is back in hospital for his last chemo cycle and Steve will be there for his lumbar puncture.

MONDAY 28 MAY – Steve’s only having blood tests today so drives himself whilst I chase up more stuff down town. Getting our address changed is easy with some companies and difficult with others and what they request as proof is completely inconsistent. Manage the walk back in 15 minutes. I’ve bought some water colours and set about transforming some triple scene pictures Netty gave me. They are the wrong colour and I manage to colour wash the green and cream ones turquoise to match our bathroom and the grey ones red to go in the lounge. Steve’s back early so we sit out to have our lunch. We’ve received our B&Q decorating voucher for £80 so use it to buy the paint for the white woodwork amongst other things. Late afternoon we take another walk to explore more of the area and are surprised at the housing estate opposite which is full of huge detached houses.

TUESDAY 29 MAY – We had a phone call yesterday saying Dr Ackroyd wanted to see us at 9.30am. We know Steve’s test results were not perfect but believed they were nothing to worry about in the whole scheme of things. Unfortunately all is not so with the eye test as they are now concerned that whilst the tests results may indicate scarring from a previous infection it may also mean the leukaemia has spread there. They say that the chemo is suspended until they find the exact reason as leukaemia in the brain area is much more serious and would completely alter the course of the treatment. They want to do an MRI scan tomorrow and if this is not conclusive the next procedure is using a needle to withdraw fluid from his eye. If they still can’t be sure they will have to do a biopsy from the back of his eye. Got a bit confused with all this info but know some of these results could take 5 days so we are in for a worrying time of things. In the meantime they will go ahead with the lumbar puncture and spinal injection tomorrow as this is the one that is supposed to protect the brain. They also tells us about his unusual heart echo results. From the main valve instead of all the blood pumping out there is a very small amount that goes in reverse. They believe this is something Steve has always had and are not concerned. The fluid on the lungs was caused by the excess fluids needed to flush through the Asparaginase chemical and will right itself and the liver damage is also due to this drug which won’t be repeated. We call in at Mom and Dad’s on the way back as they always want to know how Steve has got on. After lunch Steve has a lie on the bed whilst I do a bit of research on the Internet, and wish I hadn’t.

WEDNESDAY 30 MAY – At the hospital the first thing is to clean Steve’s Hickman line then insert a catheter in his arm for the MRI scan to put fluid in. The lumbar puncture goes well and Steve stays flat on the bed until it is time to transfer to a trolley for the MRI scan. I get a message to say the machine has broken down and he will be longer than expected. Helen tells us they may be able to phone us with some results on Friday and we will see Dr Ackroyd again on Wednesday to discuss the results and onward treatment. We’re home by 4pm just in time to watch the Olympic torch going through Newport. Unfortunately we are watching it on the laptop and the picture freezes when it gets to the main street. Steve’s feeling OK in the evening so we pick up Sandra & Keith and head to The Curry House for the £7.95 5 course Wednesday special. There’s a large party on the table behind us and they are pretty noisy. Coupled with the lack of fresh air Steve begins to feel unwell so I break off from my meal to drive him home. He feels he just needs to drive home and insists I return. It’s good to be able to talk through our concerns with Keith & Sandra but it’s still going to be another sleepless night. When I get home Steve is feeling much better lying down and I stay up until almost midnight to give him chance to hog the bed.

THURSDAY 31 MAY – It’s a rainy morning and from past experience Steve knows he is best to lie down as long as possible as when he is upright he gets the mother of all “ice cream” headaches. Late morning we are delighted to get a call from Helen telling us the MRI scan was conclusive in showing there is no leukaemia there, instead it is small blood clots from previous chemo and the lumbar puncture also shows no cancerous cells. They are so happy with these results that they don’t feel a need for the eye biopsy and have scheduled a talk with Dr Ackroyd on Wednesday after which Steve will resume the chemo schedule. Steve is still taking care after the lumbar puncture so basically stays flat on his back all day with the occasional shift from bed to sofa.


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