Long lie in and not great when I got up. Stomach spasms and fatigue. Did manage to drive down to pick S+L up from town, but it was a struggle. Ate some lunch and felt a bit better but had to have an hours sleep about 4:00. Done nothing other than watch telly. Off to bed now.
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Monday 29 October 2012
Sunday 28 October 2012
Chemoed
Extra hours sleep, lie in and I still feel exhausted. Not done anything much at all. Feeling a bit yuk emotionally and physically.
But Sharon is roasting lamb and baking a cake, so things are looking up. Last cycle I was starting to feel much better by the weekend. This cycle I felt pretty good Thursday and Friday and not so good at the weekend. I am sure things will pick up this week.
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But Sharon is roasting lamb and baking a cake, so things are looking up. Last cycle I was starting to feel much better by the weekend. This cycle I felt pretty good Thursday and Friday and not so good at the weekend. I am sure things will pick up this week.
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Saturday 27 October 2012
Good day
Up early, Sharon was off out dog walking. Went to Deddington farmer's market for a mooch. Took the camera because the light was so nice.
Wore myself out walking round the village and had to have a sleep after lunch. Probably helped by the woodburner roaring in the front room. Spent the afternoon watching England thrash Wales at Rugby League, strange game. Got up long enough to walk over to Mum and deliver her some faggots from the market.
Sauscinni for tea. Still got the washing up to do. Not planning much else.
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Wore myself out walking round the village and had to have a sleep after lunch. Probably helped by the woodburner roaring in the front room. Spent the afternoon watching England thrash Wales at Rugby League, strange game. Got up long enough to walk over to Mum and deliver her some faggots from the market.
Sauscinni for tea. Still got the washing up to do. Not planning much else.
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Friday 26 October 2012
Feeling good
Fairly quiet day yesterday. Popped out to see The Colbournes over at Mums and walked back via Sainsbury's with Lauren. I had lit the wood burner in the morning so it seemed a shame to move away from it.
I have seen the district nurse and been out in the Land Rover today, so fairly active for week 1. Feeling pretty tired at the moment as it wasn't a good night, bloody steroids. The dosage is down today and I am feeling like I could sleep for England. Let's hope it doesn't wear off before bed. No sign of hiccups since about 3:00 pm.
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I have seen the district nurse and been out in the Land Rover today, so fairly active for week 1. Feeling pretty tired at the moment as it wasn't a good night, bloody steroids. The dosage is down today and I am feeling like I could sleep for England. Let's hope it doesn't wear off before bed. No sign of hiccups since about 3:00 pm.
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Wednesday 24 October 2012
Home!
Not a good night at Hotel Churchill.
But I was finished on the drips by 12:30 but departure was delayed by the lack of filgraston injections. The ones pharmacy delivered yesterday had gone missing and after much chasing we went to pharmacy on our way to the car park and were home by 3:15.
Have had something to eat, watched some telly and am soon off to bed. BUT the hiccups are here so may be on my own.
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But I was finished on the drips by 12:30 but departure was delayed by the lack of filgraston injections. The ones pharmacy delivered yesterday had gone missing and after much chasing we went to pharmacy on our way to the car park and were home by 3:15.
Have had something to eat, watched some telly and am soon off to bed. BUT the hiccups are here so may be on my own.
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Tuesday 23 October 2012
Round 5 Day 2
Never got my early night. A combination of circumstances meant it was 11:30 by the time I got to sleep. Woken at 3 am by someone trying to take my blood sugar level. Fortunately she realised she had the wrong man before she drew blood. Bag change at 4:00 am and wake up call around 7:00 from the cleaning staff.
Breakfasted by 9:00 and then disconnected for a shower. Reconnected by 10:00 so treatment continues. Seen the pharmacist and she is getting me some difflam throat wash, so that will save £5.50 in Sainsbury's. Should be able to get my GP to prescribe some for later weeks as well. My free prescriptions card turned up last week. 5 years of free prescriptions.
Frances came in to visit this afternoon. Good to catch up and find out she knows all the district nurses from her arm injury time. She has been staying away from me as she has been full of coughs and colds since the beginning of school term.
Lauren and Sharon are on their way down to see me. They won't be here long as Lauren has to get back for dancing lessons at 8:30.
Blood pressure is up. Fluid retention in action. Doctor has asked to see my data from home recordings to see if my medication needs changing. Sharon is bringing them in.
Not likely to get an early night tonight either as the rehydration will finish around 8:00 pm then 3 hours of chemo, then more rehydration starts. And rehydration will mean pee breaks every few hours. So not much sleep again.
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Breakfasted by 9:00 and then disconnected for a shower. Reconnected by 10:00 so treatment continues. Seen the pharmacist and she is getting me some difflam throat wash, so that will save £5.50 in Sainsbury's. Should be able to get my GP to prescribe some for later weeks as well. My free prescriptions card turned up last week. 5 years of free prescriptions.
Frances came in to visit this afternoon. Good to catch up and find out she knows all the district nurses from her arm injury time. She has been staying away from me as she has been full of coughs and colds since the beginning of school term.
Lauren and Sharon are on their way down to see me. They won't be here long as Lauren has to get back for dancing lessons at 8:30.
Blood pressure is up. Fluid retention in action. Doctor has asked to see my data from home recordings to see if my medication needs changing. Sharon is bringing them in.
Not likely to get an early night tonight either as the rehydration will finish around 8:00 pm then 3 hours of chemo, then more rehydration starts. And rehydration will mean pee breaks every few hours. So not much sleep again.
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Monday 22 October 2012
Round 5
Rang hotel Churchill just before 9 to see what time they wanted me in. They said not to get there until 1:00ish as beds were scarce and chemo drugs wouldn't arrive before then. So Sharon and I did the shopping in Sainsbury's.
Left home about 11:30 and arrived in the Churchill car park about 12:20. We went round to the parking office and got a new car park pass, this one lasts up to January. Then we went to the cafe and had some lunch. Arrived at the OWLS desk about 1:10. Still no beds.
Sat in the quiet room and did all the admissions paperwork and saw a doctor. Still no chemo drugs though. Got a bed about 3:30 but still no chemo drugs. Chemo drugs finally arrived around 5:30. Now hooked up and being poisoned.
Think it will be an early night. Feeling tired and there will be a change every few hours and pee breaks as there is a 21 hour rehydration. Such fun.
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Left home about 11:30 and arrived in the Churchill car park about 12:20. We went round to the parking office and got a new car park pass, this one lasts up to January. Then we went to the cafe and had some lunch. Arrived at the OWLS desk about 1:10. Still no beds.
Sat in the quiet room and did all the admissions paperwork and saw a doctor. Still no chemo drugs though. Got a bed about 3:30 but still no chemo drugs. Chemo drugs finally arrived around 5:30. Now hooked up and being poisoned.
Think it will be an early night. Feeling tired and there will be a change every few hours and pee breaks as there is a 21 hour rehydration. Such fun.
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Sunday 21 October 2012
Quiet day
Up early considering we didn't go to bed until nearly 1:00 am. Had to do the washing up after we got back from the gig. Walked Luckydog with Sharon.
Went across to Mum's and told her the chemo news, not sure she really took it on board. Did her shopping and then went back again to pick up some bits to survive on whilst I am in hospital.
Then I sat on the sofa and watched the final round of the BTCC. Great racing from Brands Hatch in the pouring rain.
Simon has just been round to catch up. He offered to pick me up from the hospital if it helps. He's a good mate.
Off to bed now. Haven't organised anything for tomorrow, I will do it all in the morning in a panic. Not looking forward to my mini break at Hotel Churchill.
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Went across to Mum's and told her the chemo news, not sure she really took it on board. Did her shopping and then went back again to pick up some bits to survive on whilst I am in hospital.
Then I sat on the sofa and watched the final round of the BTCC. Great racing from Brands Hatch in the pouring rain.
Simon has just been round to catch up. He offered to pick me up from the hospital if it helps. He's a good mate.
Off to bed now. Haven't organised anything for tomorrow, I will do it all in the morning in a panic. Not looking forward to my mini break at Hotel Churchill.
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Saturday 20 October 2012
Coming to terms with Friday
Sharon and Lauren went to Cambridge for a haircut. I stayed at home as Luckydog isstaying for the weekend.
Put a new rear wiper on Lauren's Clio. Not a fabulous piece of Renault design as the old one had an alloy centre that had corroded onto the motor spindle, but a bit of dremeling and some ingenuity got it apart.
Had a nap after lunch and then prepared tea for us and Karen and Kevin. K+K turned up about 5:15, we ate about 5:45 and then went down to The Mill to see The Blockheads. 35 years of touring as a band, in their late 50s and early 60s but still full of energy and the best jazz/funk band I know. They played all the hits and some of their recent compositions.
Feel an even stronger affinity with them now than ever before. The original drummer, Charley Charles, died of cancer. Sharon and I came back from our honeymoon to go to the benefit gig at The Roundhouse. And of course, the legendary Ian Dury died of cancer. I am going to beat it though and go to more Blockheads gigs. Even if I do have to stay on the chemo 'til Christmas.
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Put a new rear wiper on Lauren's Clio. Not a fabulous piece of Renault design as the old one had an alloy centre that had corroded onto the motor spindle, but a bit of dremeling and some ingenuity got it apart.
Had a nap after lunch and then prepared tea for us and Karen and Kevin. K+K turned up about 5:15, we ate about 5:45 and then went down to The Mill to see The Blockheads. 35 years of touring as a band, in their late 50s and early 60s but still full of energy and the best jazz/funk band I know. They played all the hits and some of their recent compositions.
Feel an even stronger affinity with them now than ever before. The original drummer, Charley Charles, died of cancer. Sharon and I came back from our honeymoon to go to the benefit gig at The Roundhouse. And of course, the legendary Ian Dury died of cancer. I am going to beat it though and go to more Blockheads gigs. Even if I do have to stay on the chemo 'til Christmas.
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Friday 19 October 2012
Sh*t Happened
Well I was all psyched up for this being round 5 of the chemo and it all being over in 6 weeks. Then I went to see the consultant this afternoon. It was Professor Hassan, the expert. He said that clinical trials indicate that rabdomysarcoma is best got rid of with lots of maintenance chemotherapy. When we started he wasn't sure if a man of my age would cope with this as all the clinical trials and experience is with children and young men. Remember, I am one in a million and he has never seen this type of cancer in a man of my age. I have been so resilient that 'we' have decided that I will have a series of maintenance doses. Basically this means that I will continue with chemo until the new year with two nights in hospital every 3 weeks.
One dose would be due on December 24th, but he has said we can skip this one. Radiotherapy will then commence in the new year some time. I have to say, I am devastated. I have been planning everything around it all being over in 6 weeks and now I have the rest of the year to look forward to.
I say 'we' decided. It was a bit like the PICC line discussion, when a leading world authority says it is the best way forward, I wasn't about to disagree. It has risks, it can have adverse impact on my heart and my bone marrow, but he reckons I am coping with that. The heart scans show that the treatment so far has had no impact on my heart, my blood tests show that my blood recovers between treatments, so here we go.
The blog will continue for much longer than originally planned. I will come to terms with it, but at the moment I just want to cry, and have been.
One dose would be due on December 24th, but he has said we can skip this one. Radiotherapy will then commence in the new year some time. I have to say, I am devastated. I have been planning everything around it all being over in 6 weeks and now I have the rest of the year to look forward to.
I say 'we' decided. It was a bit like the PICC line discussion, when a leading world authority says it is the best way forward, I wasn't about to disagree. It has risks, it can have adverse impact on my heart and my bone marrow, but he reckons I am coping with that. The heart scans show that the treatment so far has had no impact on my heart, my blood tests show that my blood recovers between treatments, so here we go.
The blog will continue for much longer than originally planned. I will come to terms with it, but at the moment I just want to cry, and have been.
Thursday 18 October 2012
Good day today
Had a lie in and a slow start. Was desperate to get out in the good weather before 3 days at Hotel Churchill next week. Was going to walk around Burton Dasset Hills but then I remembered something about it being Stratford upon Avon music festival this week and there being buskers in town. So I had a mooch round Stratford upon Avon and coffee and a cake in Costa. Probably walked too far, but hey ho.
Got home, called to see mum and Chris from the rally school turned up for a cup of tea. We chatted in the kitchen whilst I cooked stroganoff for tea. Planning to retire to the sofa for the rest of the day.
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Got home, called to see mum and Chris from the rally school turned up for a cup of tea. We chatted in the kitchen whilst I cooked stroganoff for tea. Planning to retire to the sofa for the rest of the day.
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Tuesday 16 October 2012
Regular Readers
Today I popped up to Kenilworth to the new Goodfoot office for a coffee and a catch up with Jeremy. I then popped into Kenilworth library for a look at the definitive map. It didn't have any routes on it I haven't already found though. On the way back, on the M40, the Polo exhaust fell off its rear mountings again. Fortunately my safety wire from the previous fix meant that I kept the rubbers on and it didn't fall off completely. Managed to botch it up and then called in at Simon and Pete's workshop to borrow a trolley jack and put it right back on. Lasted all the way home and it is still on at the moment. Planning to take it and put it on the ramp at Andy's tomorrow. That way if it needs major welding I am in the right place.
All in all a good day, but I am a bit tired now. Off to bed.
Monday 15 October 2012
Good day
Sat on the sofa enjoying a cheap french brandy and some dark chocolate. Went out this morning to do the food shopping and have been around the house for the rest of the day. Sharon went out for lunch with an old friend and they both came back home for a cup of tea. Ed rang me and filled in all the details from The Jersey Rally that I had to miss last weekend. All in all a pleasant day, kept going throughout. Must be week 3.
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Good day
Sat on the sofa enjoying a cheap french brandy and some dark chocolate. Went out this morning to do the food shopping and have been around the house for the rest of the day. Sharon went out for lunch with an old friend and they both came back home for a cup of tea. Ed rang me and filled in all the details from The Jersey Rally that I had to miss last weekend. All in all a pleasant day, kept going throughout. Must be week 3.
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Saturday 13 October 2012
Just when you think it's getting better
Was up late waiting for Sharon to come home safely then up earlyish this morning, so maybe I was just tired. We popped into town to go to The Royal Photographic Society International Print Exhibition and then to pop into Waterstone's to pick up some more reading material. Exhibition was fabulous, would like to have seen the prints better lit, but considering the number of prints and the size of the space they did pretty well. Bought JackKerouac's On The Road and Dave Gorman's Game.
Got home and had to sleep on the sofa for an hour. So maybe I am not doing as well as I thought. Frustrating really, want to get on and do things but when I do I wear myself out. Off out to the workshop with Si in the morning to see if we can adjust the Polobanger suspension to make it sit a bit more level and improve the lift off oversteer.
Got home and had to sleep on the sofa for an hour. So maybe I am not doing as well as I thought. Frustrating really, want to get on and do things but when I do I wear myself out. Off out to the workshop with Si in the morning to see if we can adjust the Polobanger suspension to make it sit a bit more level and improve the lift off oversteer.
Friday 12 October 2012
Fair to Middling week really
I have just realised that it is Friday and I have been quiet since Monday. That about sums the week up, quiet. I have had a sore throat and no voice for most of the week, I am bored and fed up but daren't go out and do things in case the sore throat and voice turns into something nasty. So I have been holed up at home, venturing out for a drive occasionally to enjoy the last of the autumn sun before the grey of winter arrives.
The District Nurse has just been to change my PICC line dressing. She was amazed at how well I look and, once again, confirmed that a positive mental attitude is the best cure you can have. I have struggled to stay positive this week, but that is mainly the boredom of it all.
Been relieving the boredom by playing with the Spotify music player this morning. Started by looking for a Rocket From The Tombs version of Sonic Reducer and also found their version of 17. That got me thinking and I searched for 18 and kept going until I got to 40, I will continue at some point. The years toll (to be continued) is a link to the playlist if you fancy something different, I have been my usual eclectic self. Found some very nice stuff in the searches.
The District Nurse has just been to change my PICC line dressing. She was amazed at how well I look and, once again, confirmed that a positive mental attitude is the best cure you can have. I have struggled to stay positive this week, but that is mainly the boredom of it all.
Been relieving the boredom by playing with the Spotify music player this morning. Started by looking for a Rocket From The Tombs version of Sonic Reducer and also found their version of 17. That got me thinking and I searched for 18 and kept going until I got to 40, I will continue at some point. The years toll (to be continued) is a link to the playlist if you fancy something different, I have been my usual eclectic self. Found some very nice stuff in the searches.
Monday 8 October 2012
Fair to middling
Not a good day, not a bad day. Mid afternoon nap and a sleep on the sofa this evening. Off to bed now at 10:15 pm. Had pains in the lower back all day, god knows what that is. Let's hope tomorrow is better.
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Sunday 7 October 2012
It's Canal Day
Watched the Morris Dancers, love the http://armaleggan.org/ gothic looking Border Morris. Lauren and her dance school had been thrown into chaos by the Canal Day organisers inability to plan, but someone stepped in and save the day, moving them to the same arena as the Morris Dancers and adjusting the schedule.
Had a very nice pork roll and a water buffalo burger for lunch. Saw some lovely narrowboats and generally had a good time. Only thing missing was a couple of pints of Hook Norton, but I had the car and I've not been well you know.
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Sunday Morning
Planning a lazy start to today. The week 1 sore throat has arrived (Difflam to the rescue) and I over did it yesterday. Mind you, over doing it improves the sleep. Went out like a light for more than 8 hours.
BTCC on the telly today and I might get brave and take a trip to Banbury Canal Day.
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BTCC on the telly today and I might get brave and take a trip to Banbury Canal Day.
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Friday 5 October 2012
Good day
Even without much sleep I have kept going all day. Nothing strenuous, just playing with a computer transferring vinyl to mp3, having my dressing changed and cooking steak hot pot for tea. Running out of energy now, hopefully the reduced steroid dose will let me sleep.
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Thursday 4 October 2012
Finaly
Got to sleep around 4:00 am. Woken at 7:00 am by hiccups! District nurse due at 9:00, dressing change and PICC line flush. Lauren has her manicurist visiting as well, make sure I get te right one.
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Steroid time
It's one am in the chemo house and the steroids are keeping me awake. Took them at 10 and 3 today as I was late getting going, but there is no sign of sleep at the moment.
Should have gone out for a long walk today to make me tired but my muscles are so out of practice I struggled to get across the road to the pharmacy. Should I be working out to keep some muscle or should I be taking it easy? What's best for me?
Sleep would be good, but no sign of it.
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Should have gone out for a long walk today to make me tired but my muscles are so out of practice I struggled to get across the road to the pharmacy. Should I be working out to keep some muscle or should I be taking it easy? What's best for me?
Sleep would be good, but no sign of it.
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Wednesday 3 October 2012
Hiccups AGAIN!
Had hiccups on and off all afternoon and evening. Calmed down about 10:30 pm so went to bed with Sharon. Awake around 2:15 am with hiccups. Moved into front bedroom to leave Sharon in peace. She says I went back to sleep and was snoring and hiccuPping. Awake again around 5:30 no hiccups so went back to bed with Sharon. Hiccups off again now at 7:30 am.
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Home!
Got home just after 10:00 am. So much better having a single room and reduced chemo regime. Nowhere near as tired and have managed to eat better today. Cornflakes for breakfast, crispbread cheese and olives for lunch and a cream soda float and jelly babies for high tea. Looking forward to Sausage and jacket potato for tea.
The rehydration routine keeps you on the move every 3 hours so I didn't have a great night. Topped up with an hours sleep on the bed with the sun streaming in the window to keep me warm after I had showered.
Lauren has just called in to see me so if anything exciting happens I will post again later.
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The rehydration routine keeps you on the move every 3 hours so I didn't have a great night. Topped up with an hours sleep on the bed with the sun streaming in the window to keep me warm after I had showered.
Lauren has just called in to see me so if anything exciting happens I will post again later.
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Tuesday 2 October 2012
Round 4 Day 2 Part 2
Nice quiet day of Chemo therapy, the joys of a single room. Have to admit my mental/emotional state is much better in here than it has been in the 4 person wards. That may also be because the chemo regime has changed, no Doxorubithingy, the one that makes you pee red. Haven't looked at the other side effects of that one recently but I know one of them made you prone to depression.
The alarm is going off on the drip at the moment, the Mesna has finished I think. Becky is busy doing someone else at the moment, but she will be along soon, in fact she has just arrived. Forgot to say earlier, being looked after by 2 Beckies (correct plural? What is the collective noun for Beckies?) today
Nausea levels are about the same as last time, the anti sickness medication has stayed the same. Really can't face much food, but cant take steroids on an empty stomach as they give you ulcers. So a rock and a hard place, eat and feel ill, don't eat and face ulcers.
Latest calculation of finish times says hat I should be done about 7:00 am tomorrow! The removal of Doxorubithingy has taken 8 hours out of the schedule, currently on 3 hours of Ifosfamide and then 12 hours of re-hydration and Mesna. So could be home for breakfast if I can get a lift off Sharon at that time of the morning.
The alarm is going off on the drip at the moment, the Mesna has finished I think. Becky is busy doing someone else at the moment, but she will be along soon, in fact she has just arrived. Forgot to say earlier, being looked after by 2 Beckies (correct plural? What is the collective noun for Beckies?) today
Nausea levels are about the same as last time, the anti sickness medication has stayed the same. Really can't face much food, but cant take steroids on an empty stomach as they give you ulcers. So a rock and a hard place, eat and feel ill, don't eat and face ulcers.
Latest calculation of finish times says hat I should be done about 7:00 am tomorrow! The removal of Doxorubithingy has taken 8 hours out of the schedule, currently on 3 hours of Ifosfamide and then 12 hours of re-hydration and Mesna. So could be home for breakfast if I can get a lift off Sharon at that time of the morning.
Day 2 in The Hotel Churchill
I know part of this is because I am in a room on my own, but this feels like proper care. Ali came in to say goodbye at the end of her shift and Becky came in to say hello and explain what is going on today.
Fairly good night considering there were 3 bag changes on the drip. Was feeling very nauseas last night before I went to sleep, much better this morning, I have managed banana and corn flakes for breakfast. Have now looked at the lunch and dinner menu for today and don't fancy any of it.
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Fairly good night considering there were 3 bag changes on the drip. Was feeling very nauseas last night before I went to sleep, much better this morning, I have managed banana and corn flakes for breakfast. Have now looked at the lunch and dinner menu for today and don't fancy any of it.
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Monday 1 October 2012
Got a bed!
Well I now have a single en suite room at The Hotel Churchill. Chemo is underway and everything is looking good for a reasonable finish on Wednesday.
Ali is on tonight, so all will be good.
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Ali is on tonight, so all will be good.
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Round 4
Arrived at Hotel Churchill at 10:15 this morning to find they don't yet have a bed for me. Junior Sister (see I corrected it Becky) Becky sent me away for a coffee so she could have her breakfast and then there might be a bed.
Went for a coffee and when we returned at 11:00 there still wasn't a bed. So we are now sat in a side room with no bed. Chemo will start, bed or not and a bed should become available during the day. If it doesn't I will sleep on the sofa in this side room.
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Went for a coffee and when we returned at 11:00 there still wasn't a bed. So we are now sat in a side room with no bed. Chemo will start, bed or not and a bed should become available during the day. If it doesn't I will sleep on the sofa in this side room.
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