Posted by: glenswatman | February 1, 2013

20130121-31 Cannula confusion


Snow VW van 20130122 Keighley  Tarn (6) 20130122 Keighley  Tarn (5) 20130122 Keighley  Tarn (3) 20130122 Keighley  Tarn (1)

MONDAY 21 JANUARY – Our plan B had been to surprise Mum by visiting today on her birthday but heavy snow puts paid to that idea. It’s the most snow we have had this season but as we are on a bus route the snow plough keeps the road clear. Claire has walked to work and the kids are off school as we not by the number trooping past our window to go sledging the field nearby. I pop out and clear out path and the snow of the car and am amazed to note it is about 8” thick.

TUESDAY 22 JANUARY – The stumblers walk has been cancelled and with snow falling I am not even keen to meet Sandra down town. Things change mid morning when the sun comes out and the snow starts to melt. After lunch we walk up to the Tarn. It’s really pretty there with just 2 smallish pools of water and the rest frozen over and covered in snow. Back home “Incommunities” arrive to sort out the damp problem in the bedroom by putting extra insulation in the corners but the workman is not convinced that is the problem. In the evening Bradford City is playing Aston Villa and for the first time in over 100 years a 4th tier club wins through to go to Wembley.

WEDNESDAY 23 JANUARY – About to leave the house Steve cracks up laughing as he puts his shoes on a realises has his black long johns on but no trousers! After the 10am blood test we have to wait to make sure the results show he is well enough to have his Intrathecal (lumbar puncture) this afternoon. By 11.45 we give up waiting and head off to lunch. Return at 1pm but it is 2.45 before Steve goes in. Steve is still having discomfort from his bone marrow extraction and Suresh guesses they caught a nerve or he has a clot both of which could take days or weeks to ease off. The lumbar puncture goes well, Suresh had Steve lying on his side with his knees tucked up and Steve only really felt the first injection. Whilst Steve is lying on the couch recovering Suresh does his consultation. After he has left Marketa pops in to tell us last Friday’s CMV level was up to 4500 so to be prepared that this one will probably be over 5000 and Steve will get a recall notice. We dose Steve up with caffeine tablets and he reclines the passenger seat for the journey back. Past experience has taught him the longer he can stay flat the less chance there is of him getting the blinding “ice cream” headache that in the past has lasted for 10 days. Back home I get him set up on the sofa bed in the lounge and so far so good.

THURSDAY 24 JANUARY – Steve has a lie in until lunch time protecting his spine. After lunch I pickup Mom and we head to ASDA where I do a big shop. In the afternoon Mom enjoys watching the old home videos on the TV. Just before Claire arrives for tea we get a call from the hospital. Steve’s count has rocketed to 20,000 and they want him back in tonight. Somehow the Thai fish curry doesn’t taste as good as I was expecting it to and even my lemon soufflé goes flat. Claire offers to take us in her car so we drop Mom then continue to St James. Steve is back on Ward J89 in room 40again on the outside with a view which is nice. The nurses all welcome him back and soon have him settled in. Unfortunately Steve has his Hickman line taken out as week last Monday so now they will have to fit a cannula into his hand to give him the Ganciclovir. Once Claire drops me at home I set about cancelling things and re planning the new routine.

FRIDAY 25 JANUARY – I drive down to catch the 9.30am train and find that the day rovers have gone up to £7.50. Steve is still having his drip as they try to give it at 12 hour intervals and it was late last night when he got to hospital. It’s almost lunch time when they have finished flushing him out so he has his meal before we set out for a walk. It’s not a very nice afternoon and trying to snow so we call in to the Robert Ogden centre for a hot drink and to book some massages. I leave early as heavy snow is forecast and good thing I do as by early evening there is plenty of it coming down. Knowing that last time it took 4 weeks to get Steve’s count down from 6500 I look on line to try and find a studio or flat for short term rental in Leeds, not very easy as most are for a minimum of 1 month and even then the majority are aimed at students. We’re both feeling a bit down about this hospital stay as Steve had been and is feeling really well in himself so I must plan to do whatever I can to make the time as enjoyable as possible.

SATURDAY 26 JANUARY – The snow is really deep so I begin by clearing our path and a way through to the car. Next I brush the snow off the car but am pleased to see a bus come past as I am not keen to drive in this weather. I stand out waiting for the next bus but it doesn’t come and a neighbour tells me they cancelled them after the last one attempted the journey. I set off to walk the mile or so to the train station but it is hard going down a steep hill and me with high heeled boots on. By the time I get to the station I have blisters on both feet from my feet being pushed to the front of my boots. The 9.50 train is late and arrives at 10.25 so the weather must be affecting the trains too. At least the buses are running in Leeds. Steve is dressed and keen to get out and about so we set off towards the Armouries Museum just over a mile away. It’s heavy going trudging through snow and slush but at least it is all starting to thaw. We haven’t visited the museum for about 20 years so there are a few new exhibits and we enjoy the guided talk about King Henry VIII and his first wife Catherine of Aragon. Walking back is easier but wetter and along with my blisters I end up with wet feet. Steve’s quiet happy to settle in and watch TV so I head home. The first couple of buses don’t arrive so I get the next that comes but that leaves me with quite a walk to the train station from the bottom of the Headrow. I catch the train with 3 minutes to spare. Back in Keighley I wait for the bus outside the train station but give up after 5 minutes and walk up to the bus station where at least the bus home is running. Feel absolutely shattered when I get in and my feet are killing me. Know that Steve was also feeling a bit weary when we got back so I come up with a new plan for the next couple of days, I will get a hotel in Leeds and he can join me there in the day.

SUNDAY 27 JANUARY – After wishing David a Happy Birthday I set off to drive to Leeds. Steve is not feeling quite as well today as his insides feel strange and he is itching all over. He likes the idea of the Hotel and I am just about to book the Ibis Budget when Richard gets back to me and says we can stay at the much nicer Cosmopolitan on his mate’s rates. Manage to find it easily enough in the car but parking is a nightmare and we end up driving round the loop to find even the large market car park is full. Finally return and pay £3 for the day in a nearby parking area under the railway arches. We’ve been upgraded to a king sized room and it is lovely and cosy. Steve wants to eat but isn’t in the mood for anything much so the Greggs breakfast bacon sandwich and drinks at £2 fits the bill. Once back in the room we enjoy a wallow in the bath then just lying around watching TV. After Steve has watched Liverpool’s’ terrible performance we set off with Steve driving. Once we have got around the loop and he is on the road to the hospital I hop out and walk back to the Hotel.

MONDAY 28 JANUARY – Steve catches the bus down and joins me for a cooked breakfast. He’s a bit upset to find that if he comes out for the day they have to remove the cannula then jab him to refit one once he gets back. This is as well as taking blood from his arm at 5am each morning. Such a shame the Hickman line came out when it did. I speak to the Hotel Manager David to thank him for arranging the stay and the conversation gets around to Bradford City and he says as a season ticket holder he can get spare tickets for Wembley. Richard calls us later to say he has spoken to David who has offered the tickets for Steve and our David. We relax in the room then take a walk early afternoon. In Millennium Square they have set up the Ice Cube with a skating rink, snow slide and other winter attractions. At the end of the square is the City Museum where Prime Minister David Cameron is holding a special cabinet meeting about the high speed rail link. When Steve catches the bus back I pick up something to eat then settle in the room. Steve calls and suggests I watch a programme about protecting yourself against the winter viruses. This turns out to be a bad idea as it is clear that Steve cannot possible protect himself on a coach to Wembley nor during the match and when I speak to him later he can tell I am concerned about this. We agree that Steve will speak to the Doctor tomorrow for advice.

TUESDAY 29 JANUARY – I feel refreshed after a good night’s sleep. I meet Sandra at the train station and we head to the hospital. Steve tells me he has spoken to Dr Suresh about Wembley who says it is OK to go. I’m not totally convinced as Dr Gilleece is the main consultant and much more cautious. I suggest that she is the one to advise whether it would be wise for Steve to go or not. We walk down to the Oriental City for a Chinese 3 course businessman’s’ lunch, £5.80. When we get back there is a message from Dr Gilleece to say she does not recommend Steve going to Wembley especially as it is the virus season. He’s pretty upset but accepts the decision. Don’t think his mood is helped by Sandra saying Goodbye and that she won’t see him for 5 weeks as she is off to Tenerife on holiday. We leave as Steve heads off to visit Ruth the natural healer at the hospital. I call him after I get home and she has helped him see that he must let go of his baggage and live and enjoy each day as it comes. He says he has put Wembley in a bag and left it outside his door! The bungalow is freezing when I get in, around 10C and it takes ages to get warm even with the heating on full blast. I’ve come back early as they are changing our electric meter over between 1600 and 1800 hours. If they are done in time I shall meet Sandra to go to the cinema. Frustratingly no one shows up.

WEDNEDAY 30 JANUARY – Steve tells me his CMV results showed 1100 which is a good drop. Arriving on the ward Ruth is in giving Steve some therapy. The nurse tells me they have been having trouble with Steve’s cannula, difficulty finding a vein and then a blister forming necessitating removal and re insertion. Steve tells me that he is really fed up of being jabbed as he has blood from his arm each morning and then the cannula for the ganciclovir infusion. Dr Suresh visits and we talk about the cannula problems. He confirms that Steve cannot leave the hospital without having it removed and another put in but that they can stay in for 3 days. We ask about a PICC line but he says they don’t want to do that until they have had the next test results on Friday evening as if they are low then Steve could be home by Tuesday evening. Steve is also having problems with a rash and itching and they think this is an early sign of GVHD (graft versus host disease) and have prescribed a cream but it is out of stock. This morning they removed the cannula after problems so we take advantage of this to set out for a walk. We get as far as the hospital entrance to see it is blowing a gale and pouring down. Settle for an afternoon watching a movie and this is disrupted when the reflexologist arrives. In the evening I blanch a load of veg for the freezer and cook up a batch up leek and potato soup. I speak to Steve and they took 3 attempts to get the cannula in and he had to have his hands in hot water to produce a vein. He’s badly bruised and getting very upset by it all. Lisa and Mick visit in the evening and this helps to cheer him up. Throughout the night I lie awake fretting about the cannula situation and end up getting up at 3am to Email Dr Gilleece to ask if there are alternatives.

THURSDAY 31 JANUARY – I arrive at the hospital in time for the 11am meditation group in the Faith Centre. Steve arrives with Sister Honey in tow. Apparently Dr Gilleece has been to see Steve about the cannula problem. She really doesn’t want to put in a PICC line but has and over ruled Honey in that she says Steve can go out with it in. Honey tells me she is sorry she didn’t understand the problem and in the past staff were able to spend longer with patients and pick up on this type of thing. We join in the meditation sitting in a group with Ruth initially talking us into relaxing and then coming round holding hands over each of us. When she is behind me I do get a strange tingling sensation down my arms and in my hands. Steve must be well and truly relaxed as at 10am he had a back massage from Nick. We head out for a walk but it is pouring down and very windy so we opt to return to the room and watch and movie. On the train home one of 3 elderly men sits by me and gets chatting. The 3 of them go out each Thursday to a different destination with a view of trying out real ale pubs and also doing something one of them has never done before. Today it was a ride on a bendy bus. They remind me of the guys on “Last of the summer wine”. David and Donna have arrived to stay at the studio for a few days so I pop in to see them. They are with Mom and Dad and with Donna and Dad having colds I end up speaking to Mom and Dave in the corridor.


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