Sorry not to have posted over Christmas - no time or energy really. Health wise I have been improving a little every day after the last lot of chemo and am starting to feel quite human again. (Apart from yesterday, when I had a day in bed feeling exhausted - I think I am fighting off a cold). I have been at the hospital regularly for blood tests: today for the first time since coming home I needed no treatment so got out of the hospital in a fairly record 1 3/4 hours instead of the 6 hours we spent there on Sunday (mix up over the lab testing of one of my sets of bloods...).
Christmas was very restful for me. Andrew cooked lots of fabulous meals, my daughters and mother-in-law variously wrapped presents and crackers for me, helped prepare food, washed up and did such housework as was essential (not much). We played a board game on Christmas Eve (Lyric - highly recommended), and had time to look at old family photos and record Andrew's mother's memories, and watched 'Paddington' together. Sadly I didn't make it to church, but each service attended was reported on by the girls. Apparently this year's nativity play on Christmas Eve was a classic with the angels only being able to find the letters O and Y in GLORY to start with so that the shepherds were summoned with a very suitable 'OY', and a very shy youngest king.
Two daughters and Andrew's mother have gone home today. We are looking forward to friends being with us on New Year's Eve and then chemo starts again on 5 January.
My overwhelming emotions from this Christmas are gratitude - to the medical staff who are overseeing my treatment, to my family, friends, neighbours, colleagues for their support - and appreciation of the little pleasures in life: watching the birds in the garden, seeing the full moon on Christmas Eve, hearing the church bells, finding primulas flowering in the garden...
Tuesday, 29 December 2015
Tuesday, 22 December 2015
Tuesday 22 December - home for Christmas!
Sorry about the gap in entries - I haven't really felt like writing. I came home on Sunday evening but spent Saturday and Sunday feeling pretty grim and some of it is still persisting. However, I know from the first dose of the chemo that it will pass. I have no more chemo now until 5 January so there will only be visits to the hospital for blood tests between now and then.
We are expecting all the family here by Christmas Eve. I hope you all have a very blessed Christmas.
We are expecting all the family here by Christmas Eve. I hope you all have a very blessed Christmas.
Friday, 18 December 2015
Friday 18 December - a day to be quiet
The chemo finished last night and I am now taking the folinic acid which should clear the rest of it out of my system. they do blood tests twice a day to check the levels of the drug in my system. It has to get below a certain level before they can let me home. I am still being pumped full of fluids to help with the chemo clear out.
As last time, I have been feeling rather queasy and slow today. I had a visitor and a phone call but have otherwise been quite quiet and snoozed a fair bit. I brought in the Lord of the Rings films to watch - excellent for hospital as they are so long! - so will watch the 3rd one later.
I continue to admire all the hospital staff who keep the place running and remain cheerful and helpful even when things are difficult.
As last time, I have been feeling rather queasy and slow today. I had a visitor and a phone call but have otherwise been quite quiet and snoozed a fair bit. I brought in the Lord of the Rings films to watch - excellent for hospital as they are so long! - so will watch the 3rd one later.
I continue to admire all the hospital staff who keep the place running and remain cheerful and helpful even when things are difficult.
Wednesday, 16 December 2015
Wednesday 16 December - peaceful day in hospital
I came into hospital yesterday afternoon and have now been on fluids since 4am today. I am hoping that they will start the 24 hours' chemo later today. So far I have had some blood taken and seen the doctor.
I have had an enjoyable day though, chatting to a young ordinand from Westcott House (one of the theological training colleges in Cambridge) who is on a week's placement on this ward prior to doing a day per week with the chaplaincy team. He and I have talked about all sorts of things - his 5 week old daughter, where he is going for his curacy, holidays in Germany, the Book of Common Prayer, what it is like to be a patient on this ward, his previous jobs, my job...I hope he wasn't bored, but he did come back voluntarily after lunch so probably not.
I have had an enjoyable day though, chatting to a young ordinand from Westcott House (one of the theological training colleges in Cambridge) who is on a week's placement on this ward prior to doing a day per week with the chaplaincy team. He and I have talked about all sorts of things - his 5 week old daughter, where he is going for his curacy, holidays in Germany, the Book of Common Prayer, what it is like to be a patient on this ward, his previous jobs, my job...I hope he wasn't bored, but he did come back voluntarily after lunch so probably not.
Monday, 14 December 2015
Monday 14 December - no bed today
Sadly no bed today for me. The upside is that I got another nice dinner at home with Andrew and Sarah - there is always an upside. So we wait to see if there is a bed tomorrow and if not I have an appointment for bloods on Wednesday.
Interestingly the last dose of methotrexate must still be having quite an effect as my anti-thrombin levels are still falling (requiring another dose of cybernin today) as are my neutrophils (requiring slightly more care over what I eat).
Plus points are that I have mostly finished writing the Christmas cards and have begun to clear out some of the old files on my computer - it's amazing what a little boredom can do!
Interestingly the last dose of methotrexate must still be having quite an effect as my anti-thrombin levels are still falling (requiring another dose of cybernin today) as are my neutrophils (requiring slightly more care over what I eat).
Plus points are that I have mostly finished writing the Christmas cards and have begun to clear out some of the old files on my computer - it's amazing what a little boredom can do!
Wednesday, 9 December 2015
Wednesday 9 December - a little more clarity about the rest of the month
Thanks to a call from my specialist nurse I have a little more clarity about the plan for the next couple of weeks. I am currently in Addenbrookes 3 times a week for blood tests. On Friday I shall also have another nuclear medicine test to check the rate at which my kidneys can clear stuff out so that the consultant can determine the necessary dose of methotrexate. Then I should be going in on Monday 14 December (always assuming there is a bed) for the second high dose of methotrexate with its attendant vast quantities of fluids, probably staying in Addenbrookes until Thursday or Friday next week. I can't decide if it is better to know what I'm expecting or not. I suspect it is, because at least I will take the right clothes and things to do with me (I'm thinking of taking the Lord of the Rings films...)!
At least this means that I will be home for Christmas week, though I imagine I might still have to trot in and out to Cambridge for blood tests. I am sorry that I will probably miss a good deal of the usual pre-Christmas activities - carol singing in the village, carol service, school carol service - either through not being here or not feeling well enough, though I hope to make it to church on Christmas Day. I am also very much looking forward to having all 3 girls and Andrew's mother here with us - we intend to take a look at some old family photos among other things.
At least this means that I will be home for Christmas week, though I imagine I might still have to trot in and out to Cambridge for blood tests. I am sorry that I will probably miss a good deal of the usual pre-Christmas activities - carol singing in the village, carol service, school carol service - either through not being here or not feeling well enough, though I hope to make it to church on Christmas Day. I am also very much looking forward to having all 3 girls and Andrew's mother here with us - we intend to take a look at some old family photos among other things.
Sunday, 6 December 2015
Sunday 6 December - lovely family day
It has to be said that I spent a great deal of yesterday in bed - didn't even bother getting dressed - though I did manage a reasonable supper without the sickness returning. Progress. Today was a little better in that I got up and had a shower and got dressed. Mind you, after breakfast I went upstairs to lie down for 5 minutes and woke up nearly 2 hours later with the scent of roast chicken tickling my nostrils. Some 5 minutes!
Because we hadn't had Andrew's birthday dinner on Friday we had birthday lunch today instead, and very nice it was too. A starter of coarse pate, a few cold cooked asparagus spears, sundried tomatoes and lemon and garlic olives with a piece of melba toast and then the chicken with all the trimmings. We were to full to have the poached plums for pudding so we'll have those tonight. We had Rebecca and Andrew's mother here so it was a very nice family lunch.
Because we hadn't had Andrew's birthday dinner on Friday we had birthday lunch today instead, and very nice it was too. A starter of coarse pate, a few cold cooked asparagus spears, sundried tomatoes and lemon and garlic olives with a piece of melba toast and then the chicken with all the trimmings. We were to full to have the poached plums for pudding so we'll have those tonight. We had Rebecca and Andrew's mother here so it was a very nice family lunch.
Saturday, 5 December 2015
Saturday December 5th - Home!
I was discharged from Addenbrookes yesterday evening (Friday) - what a lovely feeling. I had been brilliantly looked after but it was so nice to sleep in my own bed again. It was Andrew's birthday yesterday but I wasn't much company for him as I couldn't even eat supper, just watched while he ate his. We'll just have to treat Sunday lunch as his birthday meal instead (hopefully by then I will be up to eating again.
This lot of chemo has left me very tired and, for the first time very nauseous. I barely ate anything on Thursday and Friday and slept most of those two days. I slept much better last night and at least managed some breakfast and am now approaching some minestrone soup for lunch. I have no other side-effects but the exhaustion is quite impressive - I can do something for about an hour and then have to sleep. I have an appointment at the hospital at 09:30 on Monday - I hope I will manage to get out of bed for that!
So now there is about 2 weeks' wait for my counts, particularly my clotting levels, to recover and then we do it all over again just in time for Christmas. Now that I know how I will feel afterwards I need to start doing my Christmas prep now as I may not be here/fit to do it the week beforehand.
Just in a week here the leaves seem to have come down completely. The view from the bedroom window is now decidedly wintry, in that we can see all the way up the park (in spring and summer the hedge gets in the way). I find the bare trees have their own beauty.
This lot of chemo has left me very tired and, for the first time very nauseous. I barely ate anything on Thursday and Friday and slept most of those two days. I slept much better last night and at least managed some breakfast and am now approaching some minestrone soup for lunch. I have no other side-effects but the exhaustion is quite impressive - I can do something for about an hour and then have to sleep. I have an appointment at the hospital at 09:30 on Monday - I hope I will manage to get out of bed for that!
So now there is about 2 weeks' wait for my counts, particularly my clotting levels, to recover and then we do it all over again just in time for Christmas. Now that I know how I will feel afterwards I need to start doing my Christmas prep now as I may not be here/fit to do it the week beforehand.
Just in a week here the leaves seem to have come down completely. The view from the bedroom window is now decidedly wintry, in that we can see all the way up the park (in spring and summer the hedge gets in the way). I find the bare trees have their own beauty.
Thursday, 3 December 2015
Thursday 3 December - Addenbrookes Day 4
I have spent a large part of today asleep or at least dozing - the after-effects of the chemo I imagine. The other after-effect has been to feel really queasy so I have not eaten a huge amount since breakfast - ginger sponge and custard at lunch and 2 cream crackers and a piece of cheese at supper. But at least it has stayed down, and it won't hurt me to shed the odd pound anyway.
Good news is that I have been disconnected from the fluid drip! And better news is that the chemo levels in my blood have fallen below the level needed to send me home, so I have high hopes of going home tomorrow.
Good news is that I have been disconnected from the fluid drip! And better news is that the chemo levels in my blood have fallen below the level needed to send me home, so I have high hopes of going home tomorrow.
Wednesday, 2 December 2015
Wednesday 2 December - Addenbrookes Day 3
It was _lovely_ to see Eleanor this afternoon. We sat and chatted for 2 or 3 hours, punctuated by yawns as hospital is definitely a rather soporific place. I heard about her current work and plans for the next couple of months. A real treat to see her.
I didn't get nearly enough sleep last night. Between observations, antibiotics, folinic acid, new bags of fluids there was a lot of disturbance! By this morning I was so tired that when I came to at about 8am for the next lot of antibiotics I realised that I slept through the last fluid bag change completely.
So the good news so far is that my temperature is normal and the pH measurements have gone alkaline and the chest x-ray was clear. The less good news is that one of yesterdays blood cultures showed a bug, though the doctor this morning wasn't sure if this was a real bug or a contaminant and won't have the answer from microbiology until tomorrow. So if all is good and the blood results show that the methotrexate concentration is low enough the doctor thought I could go home tomorrow evening. If not, not.
So far the side effects are the usual tiredness and also a touch of queasiness that has put me off my food quite a bit. Thankfully no sickness yet, though.
I'm looking forward to a pleasant evening finishing my book and then watching the last episode of 'Call the Midwife'.
Thanks for all the lovely text messages I have had - really appreciate them.
I didn't get nearly enough sleep last night. Between observations, antibiotics, folinic acid, new bags of fluids there was a lot of disturbance! By this morning I was so tired that when I came to at about 8am for the next lot of antibiotics I realised that I slept through the last fluid bag change completely.
So the good news so far is that my temperature is normal and the pH measurements have gone alkaline and the chest x-ray was clear. The less good news is that one of yesterdays blood cultures showed a bug, though the doctor this morning wasn't sure if this was a real bug or a contaminant and won't have the answer from microbiology until tomorrow. So if all is good and the blood results show that the methotrexate concentration is low enough the doctor thought I could go home tomorrow evening. If not, not.
So far the side effects are the usual tiredness and also a touch of queasiness that has put me off my food quite a bit. Thankfully no sickness yet, though.
I'm looking forward to a pleasant evening finishing my book and then watching the last episode of 'Call the Midwife'.
Thanks for all the lovely text messages I have had - really appreciate them.
Tuesday, 1 December 2015
Tuesday December 1 - Addenbrookes Day 2 update
Still on the 5 bedded ward so presumably either someone else has the side room, or they've decided I am not a risk or they will move me in the middle of the night! A very cheerful radiology porter called Gary took me down for my chest xray - actual xray took all of 5 minutes. Also a very resourceful porter as he had to work out how to get my pump and drips on the wheelchair, which he did with speed, dash and accuracy!
I've had more antibiotics and am now having another drug with the pleasant thought of being woken at 2:30am for the first dose of folinic acid (designed to neutralise the toxic stuff I've had over the last 24 hours). Complicated stuff all this.
Looking forward to a visit from Eleanor (no 1 daughter) tomorrow.
I've had more antibiotics and am now having another drug with the pleasant thought of being woken at 2:30am for the first dose of folinic acid (designed to neutralise the toxic stuff I've had over the last 24 hours). Complicated stuff all this.
Looking forward to a visit from Eleanor (no 1 daughter) tomorrow.
Tuesday 1 December - Addenbrookes Day 2
So sadly I had a very high temperature overnight - 38.8. They get very worried here if your temperature goes over 38deg. Things swung into action - vast amounts of blood taken from line and vein, swabs taken, doctor seen, antibiotics prescribed. Thankfully by this morning the temperature had come down to a more normal level - 37.5 - and the swabs indicate a viral fluey cold rather than a bacterial infection. I don't feel too bad - just a bit hot/cold and achey - but they will send me for a chest xray just in case and also move me to a side room so that I don't infect anyone else.
Otherwise hospital is quite restful once you relax into it - the food is good (I had another pudding with custard today) and the staff are wonderful. I have read two books and started watching the first series of 'Call the Midwife' which I missed on tv. It is set in 1957, the year before I was born. How things have changed. I have plans for the afternoon - some sewing and making tags for Christmas presents - though I may also just read.
Otherwise hospital is quite restful once you relax into it - the food is good (I had another pudding with custard today) and the staff are wonderful. I have read two books and started watching the first series of 'Call the Midwife' which I missed on tv. It is set in 1957, the year before I was born. How things have changed. I have plans for the afternoon - some sewing and making tags for Christmas presents - though I may also just read.
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