Kippford Christmas

My day to day routine may appear very simply as a walk in the morning and a sleep in the afternoon but Monday’s 100 mile trek through blizzards over the Border Hills to the Glasgow clinic was something else again. The previous night having been a Sunday the road gritters never made it out to the minor roads which the snow on ice had made treacherous. Two lanes of the motorway were passable but a lorry had jack-knifed on the outskirts of the city causing the motorway to be closed and diversions put in place. We spent an extra hour sitting in traffic jams before finally making it to the hospital. The good thing was that the morning clinic was nearly over by then so there was less waiting between ‘observations’, consultation, and blood tests; so we were able to set off back not long after midday and get back in daylight.


If you do not have to travel anywhere, this weather must be one of the most perfect leading up to Christmas for many a year. It has allowed me lots of fresh air and exercise. Today’s glorious sunshine demanded a walk down to Kippford to see the tide coming in. The top of Screel was lost in a cloud bank but else where was bathed in sun. My legs felt like jelly walking back home up the hill out of the village but it was well worth it. I am on a decreasing dose of steroids now, so hopefully that will lessen the muscle degeneration I am struggling against just now.






Happy Christmas and a peaceful New Year to all blog followers out there from Rodger.

Sunday Snow

Christmas really has descended on us. An inch of snow descended after breakfast this morning and transformed the landscape. The temperatures yesterday had been down to -4 C so it fell on very firm and icy ground. By late morning the skies cleared and a Sunday walk up the hill beckoned for Christine and me. She suggested attempting the steep climb past the ‘very tall tree’ to the trig point at the top of Moyle Hill. That was quite an ambitious target for me and did require a few rest stops but we got there; 150 meters above sea level. The path on the other side of the hill drops down and meets the mountain bike ‘red route’ creating a nice circuit back down onto the forestry road. All around us there seemed to be snow clouds; beyond the Solway Firth the Lake District hills were lost in a great bank of them, but the Moyle was bathed in blue sky all the time we were out there.
Tomorrow it’s back to reality with a 2 hour trip to the Glasgow clinic starting at 8 am. I don’t think the driving conditions are going to be particularly good but the hospital have laid on special individual transport for me, so at least that takes the pressure off Christine. I will not be back until 2.30 pm, weather permitting, so probably no walks on Monday.

Transplant Day 57

The weather is being very kind to me just now. These clear frosty days have been continuing for more than a week, allowing me lots of fresh air and exercise. Today I walked with Christine, South down to Kippford, to see the spring tide full in at midday. The estuary has such a different feel in winter; with not a single boat left on the water it is so much more of an expanse. Meanwhile the yacht club jetty perimeter is crowded with boats all hauled out, high and dry for the winter.

Transplant day 56

Have five whole days passed since I last stopped to write? The weather has been very kind and gentle and I have managed to walk a couple of miles almost every day this past week; trying to establish a routine of a midday walk before lunch for 40 minutes so that I can fit in an hour’s sleep in the early afternoon. That works unless it is a Monday or Thursday morning clinic in Glasgow or Dumfries respectively (then it’s a late afternoon walk if there’s still light).

Today was a Dumfries Thursday clinic with the usual blood tests which were all quite good levels. (I am on a reducing dose of steroids that give a slightly artificially high white blood count). Today’s extra was the once a month inhalation of Pentamidine to protect my lungs; that took up an additional 20 minutes. Sister Liz Rae was dealing with me; she is very good at positive thinking and at making you feel special. According to her I am doing much better than an average transplant patient at day 56, which is most encouraging. Having so much caring support from Christine is such a help for me to focus on this whole long drawn out recovery business. But that’s another good week to tick off.

I have been home now for a whole week and am beginning to relax a little, instead of worrying about being whisked away back to hospital. It is now 51 days since the transplant and my 100 day target is suddenly looking closer. There is not much flesh on my bones just now; I only weigh 8 3/4 stones (56 kg) so I need to work on muscle regeneration. This is the perfect excuse to slip out of the house and up the lane into the forest. The weather over midday yesterday, and again today, has been perfect; clear skies and hard frost with grasses jewelled in the low sun. I just had to take a camera with me when I set off to stretch my legs and, when Christine saw what I was up to, she turned a key in the Pottery Showroom and hurried to catch me up. We are so fortunate to have such a fantastic walk on our doorstep. It’s almost exactly a mile to walk up the hill to the ‘Summer Seat’ but well worth the view. Enjoy.

Thursday 10 December

Today was a Thursday Clinic Day in Glasgow, which meant a 7.30 am start from the house in order to deal with traffic and the hundred miles to get there on time. It seems like a very long way to travel for a routine weight, blood pressure and temperature measurement, plus blood tests, which in total probably take up less than 20 minutes, including talking with the consultant.

Still the results were all good, neutrophil counts normal, platelet counts building up nicely, though still a way to go to reach something like normal levels.

The journey back across the border hills and down the motorway was particularly beautiful. The sky clear, with deep pockets of mist clinging to the forested slopes.

Monday 7th December

Being home has a very different feel to hospital when it comes to continuing with this blog diary. Not sure how well I’ll be able to keep up with it. Yesterday morning I put on hat and coat and had a sniff around the garden and raked up a few twigs and leaves which felt really nice. Then in the late afternoon I had to attend clinic at ward 10 in Dumfries Infirmary and see Dr. Thomas. The blood tests and liver functions were all good, so no worries what so ever. I’ve just got to sit tight and stay out of trouble, and avoid any high temperatures. So far so good.
This morning’s project was to write a letter to the Co-operative Bank to see if we could get a replacement Credit Card. There seems to be a problem with our credit rating which is a real nuisance. We’ve had a credit card for as long as I can remember. It was a real mission digging out all our financial information for the past 3 months and photocopying it all. Not sure whether anything will come of it; feels a bit like banging one’s head against a brick wall.

Saturday, December 5th 2009

Happy to be home, but pottering around is exhausting. Lots of naps, both full naps and cat naps are needed.

(Posted by Christine)

Home at last ! Christine had set off on the 100 mile trip North to the hospital before 8 am. so we had the room cleared, bags packed and ready for off by late morning. By 3 pm we were back home. I have now laid out all my pills for the coming days and there’s a boggling number to have sorted through. Nice to be back to some home cooking.

Today was dominated by fasting from 7.30 am onwards, prior to an ultra scan; which did not take place until after 3.30 pm. A long time to go without food and water. Fairly starving by the time I got back to my room. Any way the liver scan looked good; and all appears ready for discharge home tomorrow.

Today’s treat was for Christine to take me for an afternoon jaunt to the seaside at Helensburgh. Completely away from hospital for a few hours ! Here are the photos to prove it really happened.

Unfortunately the possibility of getting home today has receded to Friday now. Complications with a dip in my liver function need monitoring for a couple of days and require a scan tomorrow. Still I might be home for the weekend which would be a nice change. Keep fingers crossed.

The plug hole for the shower water managed to block itself this morning causing quite a flood out from the shower room, right across the bedroom floor, and out into the corridor beyond. I had to beat a hasty retreat as nurses banged on the door armed with blankets and sheets and started scattering them in all directions to mop up the mess.

Plans for discharged tomorrow seem to be moving on a pace but nothing is certain until they give the green light. This morning a top-up blood transfusion is dripping into me as I write, which should give me a boost for home. And a second bag has kept me plugged in all afternoon too. No nice visits to the ‘friends’ for coffee today I’m afraid.

Wow ! I am feeling like a different person today. A good nights sleep, no temperature, and a brain that feels calm again. Something is working it’s magic on me at last. I had a delicious cafe latte at the ‘friends’ without waiting for the doctors rounds which was a smart move because it is now way past midday and they still have not been round.

I spent last night in a completely different double bedroom. The room I have been in all the rest of the week has been cooking me with a defective thermostat that could not be turned down (not helpful if you happen to be running a fever). Do not know which room I will be in tonight, depends whether the electricians turn up to fix it I guess ? I’ve got clothes scattered in both.

Anyway, good news is that Doctors have now been round and seem pleased with the state of things, to such an extent that the possibility of getting home again in a couple of days has been mentioned. Yippee!!

Christine’s weekend visit was one with a mission: to buy a mini fridge like the one I’d had in my room in B8. It had been so handy to be able to save a yoghurt to have just when needed. I thought it unlikely she would succeed but I was proved wrong! So before she left for home she was able to stock me up with some PetitsFilous and other little goodies. Well done Christine, Argos on-line and google; a formidable combination.

Last night I managed to get through without any temperature spikes for the first time. Today’s latest development is the introduction of 30 mg of steroids to try settling the GvHD. So it will be interesting to see what the next 24 hours bring.

Saturday

Rodger says - Another day and nothing much seemed to happen.

But Christine says:

Rodger is still having spikes of temperature at night and during the day sleeps a lot, but we took a before supper shuffle down the corridor and found out that there is a mysterious 5th floor to the Beatson. Pauline says that she has never dared go up to find out. I shall have to find out if there is a Beast of the Beatson.....

On our return an ominous plate of supper was waiting - Scotch Pie, chips and beans. An unwise attempt at a mouthful was aborted in haste. A bit of Sainsbury’s fruit cocktail was a better option, soft and juicy seems to work better.




The growth factor injection of last night has boosted the unhappy neutrofils which had fallen to a sorry 0.7 and midday’s count was way up at around 4.25. So what with more red blood and a kick up the pants for theneutrofils he should be bouncing off the walls. Hmm, we will both have to learn exceeding patience I'm afraid.

Somehow I have managed to get through another day. Bit of exercise, coffee at the friends; despite fever again mid afternoon.

Two separate doctor’s visits today. The usual mid morning one, and a 1 pm visit from Dr. Andy Clerk, which was most enlightening. Yesterday’s CT. Scan gave no indications of underlying infection. There is only one last thing to rule out and that involves changing the anti-fungial over the weekend. More than likely it will make no difference to the temperature, and so on Monday they will start to treat this as Graft vs Host Disease and begin a course of steroids. The result of the skin biopsy may come back next week too but it may be inconclusive. It will not necessarily prove GvHD is present, on the other hand, it just might.

Temperature was still up in the middle of the night, despite change of antibiotic. I think the doctors are beginning to think more of GvHD as the likely cause, and may switch to use of steroids to combat it. However today’s wee adventure is to go for a CT. Scan yet again. So I have not been allowed any breakfast and have had to drink a foul tasting liquid trace at 6 am and again at 9 am. Now it’s a matter of waiting to see whether the porter is a friendly one or not.

Now it’s midday and I have just heard that the scan is to take place between 1 - 2 pm, which means no lunch as well as no breakfast. Not even allowed a glass of water, which seems ridiculous when I am fevered.

Well the scan eventually took place at 2.40 pm (friendly porter by the way); the ‘wee adventure’ has ended up dominating the day. When I got back an hour later I was offered soup and a sandwich; which I promptly vomited back up, so I am still running on empty. I am not having a good day. The view out of the window has been the best thing about today and that’s not saying a great deal.

Today I had a visitor. Grandfather travelled all the way up from Kelso in the wind and the rain to see me. He is so very good at having a chat and came with an M & S raspberry jelly in time for lunch.

After my usual afternoon snooze, Dr. Travers came in to take a skin biopsy. This consisted of cutting away a small piece from my stomach area followed by one stitch. The idea is to check for any signs of Graft vs Host Disease, which apparently can cause temperature spikes amongst other things. I was also switched to a different antibiotic at lunch time so I am hopeful that at last we may see my temperature coming down and I might regain a bit of brain power and a bit more ‘get-up-and -go’ physical strength. I really am struggling at the moment.

ps. yet another blood transfusion this evening, so that should be giving things a lift by tomorrow.

Well, here we go all over again.... back at the Beatson Glasgow and very glad to be here after a very shaky few days of uncertainty and feeling ill from a high temperature. I feel confidant things will get sorted out here, although it may take a day or two before they come up with the right combination of antibiotics.

It’s wonderful just to be free and no longer tethered to my blue robot. Free to swing both arms and stroll up and down the corridor; free to visit the ‘Friends’ for a morning coffee; and free to do some Tai Chi exercises for the first time in nearly 5 days. It’s amazing how weak I have become over that period. I had to take rests 3 times while trying to complete the tai Chi form (which normally takes 15 minutes). But I suppose that is also an indicator as to me being not completely well just now. Just because I have been given paracetamol to bring the temperature down.

Meanwhile outside the rain just keeps on falling.

The Beatson Shuffle

Perhaps the weekends low ebb spirit wise was not just the let down of finding himself back in hospital after such a fleeting glimpse of home, as by Monday morning Rodger still had a temperature which if anything was slightly higher. It was an early start, battling through Dumfries traffic, still chaos on the bridge after the floods, to drive him up to Glasgow for the first post-transplant outpatients appointment.

No car parking space as usual and as Rodger was clearly pretty shaky I dropped him off at the door and did a little admittedly creative parking at the back - in no ones way, off the pavement and no visible no parking signs, (more of this later), and ran back to ‘see’ him round to the outpatients.

It was actually a relief to both of us to be told that he should stay. It feels really safe here with its double air locked doors and specialist doctors and nurses. Ward 9, another identical room but this time with a car park view. Yes, getting back to car parks...... after the inevitable longer-than-hoped length of time it took to get thorough clinic waiting rooms, and re admission procedures, I had to run back down to the car to fetch the list of medications to show to the ward doctor. It felt like a real kick in the teeth kick to find a car parking ticket! Expletive, Expletive, how do they expect one to get a sick man to hospital, etc. etc. However a lovely medical looking woman I met in the lift saw both my ticket and my expression, and told me not to worry and led me round to the desk in the ward saying that THEY would sort it out for me. So from heartless to hearts of gold!

One of the discomforts for Rodger, probably from being hunched over with a sore stomach for so long followed by little exercise save the 'Beatson Shuffle' *, has been a grumbling sore back. Over the weekend it was clearly causing him some distress. So a big thanks to Samba Sister Anne who so kindly came over last night and gave Rodger a massage.

While I was out at the car making a phone call Rodger had a chest x-ray, this time with a high tech mobile x-ray unit which came to him. It sounded amazing, I was sorry to have missed it. After a sleep and some paracetemol he's feeling a little brighter and we await results and decisions.

*So named last week as we were leaving, spirits high, and we noticed a Rodger look-alike shuffling through the door of the 'Friends' last week. 'Look, he's doing the Beatson Shuffle', we joked!


Posted by the Secretary

Stop Press

Stop Press:

The latest news is that we have no certainty what so ever as to where I will be by tomorrow afternoon. CRP levels are staying above normal, temperature still proving erratic. The Beatson, Glasgow, may decide to readmit me when we get up there. So we are having to go prepared for any eventuality.

This is a photo of my little blue robot to which I have been permanently tethered for the past few days. Everywhere I go, it comes too; even in the shower (well almost). If I need to take a walk to stretch my legs I have to push the blue robot along beside me. It does feel like a bit of a restriction, but the nurses have given me no choice in the matter. Besides it is only for another 24 hours and then I will be discharged from the Infirmary and be driven up to Glasgow for the first of my regular Monday morning clincs. Hopefully after that I will be returning home once more; but for how long, this next time, is anybody’s guess.

Yesterday was a hard day to get through. The ‘carrot’ of being home, snatched away after less than 30 hours, psychologically destroyed me. And I was so tired from all the ‘middle of the night’ hospital induction processing.

I did not feel I could really set my mind to anything. There was a new novel to read but I could not get into it; and my eye lids kept clanging shut because I could not concentrate. I was a wreck. Let’s hope today proves to be better. The only good thing about yesterday was that I got to see both my boys, and Christine, all on separate visits. Oskar called in on on the way past, on one of his rare visits home from Sheffield.

I headed off to bed quite early last night but never got to sleep in it ! It is now 8.50 am in the morning and I am writing this from ward 7 of Dumfries & Galloway Royal Infirmary !

My strict instructions from Glasgow on discharge were to take my temperature at least twice a day and phone them if it went above 37.5 oC. Unfortunately last night it went up, and then carried on going up, so the emergency plan had to be rolled out. Christine drove me in through lashing rain, wind and floods at midnight. It was 3 am before the antibiotics were eventually given to me; and a second batch has just gone in to my arm. What a lark ! The joys of being in such a delicate state of health. Perhaps Glasgow discharged me a little prematurely but at least this is a change of scene.

I reckon I will be transferred to ward 10, haematology, later today. Not sure how long I’ll be here yet - could be 5 or 6 days at a guess.

What a sweet sight to come down to, after my afternoon snooze; Christine and Inigo side by side on the sofa, looking at web design sites on her new lap top, wirelessly connected to the internet. Thanks to Elizabeth and Philip - she loves it with a passion.

The first full day at home has been most relaxing, free from the constant monitoring of blood pressure, temperature, yet more tablets etc.; wonderful to be free of that hospital routine. Wonderful to be presented with some tempting, appetising home cooking.

Home!

This morning’s visit to the ‘Friends’ for morning coffee saw me making a new friend - Gobi. We have been saying ‘Hi’ to each other for several days and were already on first name terms but today he decided to come and chat and really get to know me. He’s a workaholic with ‘iPhone’ and 10” inch mini computer and is treating his stay at the Beatson for Chemo like an extension to his office. He is a Sri Lankan bio chemist working for the NHS and has attended lectures given by my brother-in-law in his roll as professor of psychiatry. Small world ! His field of study is the long term effects of binge drinking and its connection with dementia and the time bomb that is ticking for the NHS. Scary stuff.

This afternoon saw more signs of preparation to leave tomorrow. I had to breath in Pentamidine through a nebulizer for about 20 minutes. It’s to protect my lungs for the next month while I’m breathing ‘normal’ air; and then in a months time it will be repeated. This evening I am due the first of two bags of red blood cells to give my haemoglobin levels a wee boost prior to leaving. This could be my last night in here; how exciting after 5 solid weeks !

I am beginning to get excited at the thought of leaving Ward B8 and heading for home. I know that there will still be a long road to recovery when I get home. Everyone keeps saying try not to run before you can walk, but really I just need to get out of shuffle mode and into walk mode and I’ll be happy. Developing a rash yesterday afternoon was a bit dismaying; please do not let it cause delays to my discharge I willed the doctors on their rounds this morning. It could be the first sign of a little Graft vs Host disease (GvHD) or it could be a reaction to all the various drugs I’m on. The antibiotics finish today and then there will be 24 hours of monitoring to make sure the temperature does not go above 37oC. All being well, Wednesday could be release day.... yippee !

Well, Christine and I never smelt it, but one of the nurses decided she could smell electrical burning in my room, and she fetched another and another and suddenly it was time for fire alarms and the pair of us had to abandon my room.... permanently. We spent the next hour, when I usually have an afternoon nap, just moving every scrap of clothing, toiletries, CDs, books, posters and get-well cards from room 6 on one side of the corridor to room 9; it’s mirror image on the other side. Internally the room is identical in layout but when I leave it I have to remember to turn right instead of left; and the window faces South which means there is no reflected light from the building opposite. The best thing about the new room is that the air conditioning fan is quieter through working less hard because the door pressure seals are much better.
So eventually I got a late afternoon snooze and Christine went off for some fresh air and exercise down the road. Earlier the morning had been taken up by Christine and I having an extended coffee break c/o ‘the Friends’ and discussing all the previous day’s events down in Yorkshire, where the time had come for the clearing of my mother’s house, bless her. The family have all rallied round and managed to get the bulk of the sorting done, but there’s more going on today and tomorrow; while I am stuck here like a beached whale counting Neutrophils (which, incidentally, are back to a more expected 1.57)

Today's counts have just arrived. Hb - 91/ Wcc - 2.28/ Neut. - 2.04/ Plts - 20. Exciting to see neutrophils suddenly break through to 2+. Platelets still bumping along at a rather low 20, may mean help required unless they pick up by themselves over the next 3 -4 days.
At long last planet Rodg is beginning to recover from the effects of ‘the Melphalan Bomb’ all those weeks ago. The volcano has just about ceased it’s rumblings and the tension it was causing on the stomach muscles has begun to ease, and with it the quivering feeling of nausea. So all in all a good day. A simple and uneventful typical Saturday in ward B8.
There has been some curiosity as to the state of my hair loss. What seems to have happened is that the areas of most rapid growth in the past have been the ones most effected, while other areas still appear to be unaffected. So I have a rather moth-eaten stubble on my chin and a smooth back of the head, while still having a hairy chest, arms and legs. Whether that hair will go with time or remain is anyone’s guess.

Expedition number three to the ‘Friends’ proved interesting yet again. The coffee was equally good (tea still isn’t hitting the mark). This time I took a novel over with me and sat in the sun until I cooked and had to move to the shade. Not an option back in my own room.
When ‘Sue’(I think that was her name) came to take away my empty cup and half nibbled Kit-kat she struck up conversation. How far away I lived, occupation etc. ? Soon I discovered that Sue was a Royal Academy of Music violin graduate from here in Glasgow and had been taught by Hester Dixon, Christine’s Aunt on her father’s side.
Sue was now heavily involved in running the ‘Friends’ and with hypnotherapy for musicians as well as cancer patients. Hypnotherapy is not something I have ever experienced first hand and was keen to learn more. She was dismissive of the Derren Brown TV, ‘snap-of-the-fingers-and-gone’ type nonsense. But I may get to learn a little more depending on just how long I remain here next week. My Goodness it could get so interesting I might look forward to staying an extra day or so ! There’s positive reverse thinking for you ! The latest ‘maybe home’ date from a different, more senior doctor is next Wednesday; so still the illusive 5 day gap remains.

Today a possible return home date was mentioned for the first time -next Tuesday ! (if all remains well). Five days from now, maybe; if we can keep the temperature low and stable over that period. Fingers crossed for that one.

The rest of the day has felt like steady progress; I think Christine managed to inject a bit more of a spring in my step on her visit yesterday. And the blood counts have continued to make steady progress over the last three days. The haemoglobin holding steady at about 94 while the white count has shown small but steady progress moving from 1.63 to 1.70 of which the neutrophils moved from 1.47 to 1.52. Finally platelets have held steady at about 25 which has not been much of a fall away since the last transfusion, when they were 30. But still well short of a nice safe 80.

My adventure for the day consisted of an expedition to the ‘Friends of the Beatson’ for a repeat of yesterday’s delicious cup of Coffee Latte. I also went with my Mac iBook under my arm hoping to do a USB connection to a printer. However the place is run by a bunch of non tech women who have to call engineers out for all their PC machines. They were too nervy to let me start touching any wires what so ever, so I had to beat a hasty retreat; defeated I’m afraid. Pity they don’t just have a spare printer. I have so many fragments and ideas written out on the lap top it would have been nice to have them out in the real world to peruse at leisure.

Christine made the 2 1/2 hour trek up from Galloway this morning and arrived mid morning, she insisted that we should take a walk and see some new horizons. The sensation of walking, taking myself from A to B via C, felt like a new experience although perhaps more of a shuffle than a walk. The Friends of the Beatson brought us two delicious coffees on a tray, frothy with chocolate on top, which I tentatively tried along with half a kit-kat. It is first time I’ve had either for over a month. They went down surprisingly well. We sat by a window overlooking some gardens and views of snow on the distant Ochil Hills. It made for a very pleasant change from the claustrophobia of my room back away down the corridor. It also meant I did not need a sleep until 3 pm.!
The night before had been uneventful, as was early this morning, thankfully no nausea and no temperature. We just need a couple more days without spikes of temp. and they might start to reconsider a discharge date for me. I feel ready for a change. The place is beginning to weigh heavily on me. Three weeks now since Transplant and oh boy are the days beginning to tick by slowly.

And I just want to say a big thanks to all for the lovely get-well cards.

For those of you requiring continuity of plot line (and there’s more than one would imagine) here are the facts and figures that help outline just where we have got to in the space of a week. On the 2nd Nov, Haemoglobin was 94 it has held fairly steady throughout and on the 9th Nov. was 95. The white count was 0.11, of which neurophils made up 0.03, has now risen to 1.34, of which neutrophils now make up 1.18, so steady progress on that front. Finally platelets, were 15 then struggled to get to 19 then fell back to 13 followed by a platelet transfusion which has boosted them to 30 by the 9th Nov. So steady progress all round. Well short of normal counts but enough that by the end of another week they may well allow me out of here. If only we can clear up this grumbling infection.