Not a lot to report really, other than I'm still doing ok. It's day 13 post chemo now, so I'm nearly through the "crunch" time. Day 13 last time was when my neutrophils rose to the heady heights of 1.5! Day 14 was when I came out of hospital. Fingers crossed I don't get the cold that the boys have got - I'm still keeping them at arm's length, spraying with Dettol spray and wiping with Dettol wipes (told you I was paranoid)!
Had visitors today - H and baby Jessica. Both look brilliant, even though H would have you believe she's pigging out on chocolate (you're not doing bad on it, H!). Livi was home (sickness and timetable cock-ups at college) and held Jess for a while, until she started crying and then it was quickly back to H! Chris (working from home) also had to have a go and took her into the dining room, where he was playing some Lou Reed (she soon dropped off to sleep!).
After the visit, we went for lunch at the local garden centre. I managed to persuade Livi to put her Blackberry away and talk to us. This meant I had to ignore the text I received. Chris said he wasn't going to ignore his phone, but didn't receive any calls or texts anyway! And what look was the well dressed chemo patient going for today? Well, it was full make-up and 1 of Auntie M's scarf hats. Oh, and I drove. This is the first time for a while. Chemo and meds can make my head go a bit strange (mmmm.....no change there, I hear some of you cry), so it's not worth chancing it. It was fine though today. No excuse now for not picking the boys up from school each day. Although, Chris has gone today, as Vaughan is playing in a school rugby match and he wants to watch.
I watched the first 2 episodes of the first series of Damages yesterday (BBC1 are repeating it) and think I'm hooked (Rob - have you seen it?). So, I'm looking forward to more of that, along with Mad Men (mmmm......John Hammmmmmm......). Even Chris doesn't mind when that's on - not surprising with the likes of Christina Hendricks in it (remember her in Firefly, Rob?).
I'm babbling now (had a coffee at lunch), so it's probably time to go. Have to take Livi to work soon anyway (ooh, get me, driving again!). Post again soon.
x
Thursday, 30 September 2010
Tuesday, 28 September 2010
So far so good!
Mum left last night - "see you again next week", she said as she left. My god, that's coming round soon (no, not Mum coming up again, but the chemo!). Ah well, that'll be another session out of the way - half way there then!
The last few days have been quiet (well, "ish" it is the Tinsley house after all!). It's been mainly me and Mum. Even the weekend was quiet with Chris and Vaughan out most of the day on Sunday, Adam in bed with a cold and Liv in her bedroom doing god knows what.
I've been gaining strength daily, with no signs of neutropenia (actually, I probably wouldn't know what these were anyway!) or of infection. I'm still following the paranoia route - being careful what I eat and staying as far away as possible from anyone with any germs. This of course has been slightly difficult with Adam and his bugs (and now Vaughan!). I'm supposed to tend to my sick children, but am forced to treat them as pariahs at the moment! As Mum reminded me though, I'll have plenty of time to do that when I'm better. I know, I know, I don't want to end up drinking sterile water again!
The community nurses are coming in twice a week to flush my line and to change my statlock (yes, another new word!) once a week - Tuesdays and Fridays. This is a dressing that sticks like glue, with clips that line up with the PICC line and click into place to prevent the line from moving. They also cause everyone that changes them much consternation. The clips are difficult to open and close and apparently it doesn't take much for the line to become displaced and come out. Hence the worry when the statlock's being changed. This has to be done every 7 days, so 2 out of the 3 weeks are done in the community and then at the Chemo Suite when I have treatment. Still not getting any "drawback" from the line (no blood coming out of it with a syringe), so it looks like I'll have to be stabbed in the back of the wrist each time I have bloods taken. The community team are all really nice and I know some of them through work.
I must admit to feeling a bit low after this session of chemo (all to be expected I'm told), so I asked a friend for some positive thinking tips. She in turn has started another blog (made me cry when I read it Shell), which I've added to my blog list (Gaynor, you'll recognise who this is). The first post is spot on and so right. My dancing in the rain makes me feel drenched at the moment, but I'm sure in the not too distant future, those raindrops won't feel so heavy. Keep them coming Shell!
Mum leaving is sad, but gets me off my backside and doing more. I'm not incapable, so there's no reason why I shouldn't wash and clean and cook (woah, steady on girl!)! Still, I'm looking forward to her coming back next week (all being well)!
Talking of next week, my friend, Susie B, is talking about taking me out shopping! I've seen a Christian Dior lipstick (Rouge Dior) being advertised on the back of magazines and have fallen in love with the colour (can't seem to find out what the actual colour is, mind you!). Well, as I'm not going to the hairdresser's at the moment, I thought I'd get some nice make-up! So, watch this space!
I had another encounter with the postman this morning. This was the usual postman and I think he had a double take when he saw me. I had to sign for a small parcel, so answered the door as I was..............bald, no make-up and no prosthesis (scary)! I did however have clothes on, so there were some saving graces. Felt sorry for him really, but he didn't bat an eyelid - very professional.
The small parcel, by the way, was Livi's new Blackberry. She's sold her old phone and bought this - just got to change the price plan now!! She's been desperate for this for ages and well, it's her money. Much more acceptable than the piercing she's threatening to get (yes, we've had words!).
I've just realised, I use a huge amount of exclamation marks!!!!!!!!!! Will try and reduce, there really is no need I'm sure. Must try harder.................!
The last few days have been quiet (well, "ish" it is the Tinsley house after all!). It's been mainly me and Mum. Even the weekend was quiet with Chris and Vaughan out most of the day on Sunday, Adam in bed with a cold and Liv in her bedroom doing god knows what.
I've been gaining strength daily, with no signs of neutropenia (actually, I probably wouldn't know what these were anyway!) or of infection. I'm still following the paranoia route - being careful what I eat and staying as far away as possible from anyone with any germs. This of course has been slightly difficult with Adam and his bugs (and now Vaughan!). I'm supposed to tend to my sick children, but am forced to treat them as pariahs at the moment! As Mum reminded me though, I'll have plenty of time to do that when I'm better. I know, I know, I don't want to end up drinking sterile water again!
The community nurses are coming in twice a week to flush my line and to change my statlock (yes, another new word!) once a week - Tuesdays and Fridays. This is a dressing that sticks like glue, with clips that line up with the PICC line and click into place to prevent the line from moving. They also cause everyone that changes them much consternation. The clips are difficult to open and close and apparently it doesn't take much for the line to become displaced and come out. Hence the worry when the statlock's being changed. This has to be done every 7 days, so 2 out of the 3 weeks are done in the community and then at the Chemo Suite when I have treatment. Still not getting any "drawback" from the line (no blood coming out of it with a syringe), so it looks like I'll have to be stabbed in the back of the wrist each time I have bloods taken. The community team are all really nice and I know some of them through work.
I must admit to feeling a bit low after this session of chemo (all to be expected I'm told), so I asked a friend for some positive thinking tips. She in turn has started another blog (made me cry when I read it Shell), which I've added to my blog list (Gaynor, you'll recognise who this is). The first post is spot on and so right. My dancing in the rain makes me feel drenched at the moment, but I'm sure in the not too distant future, those raindrops won't feel so heavy. Keep them coming Shell!
Mum leaving is sad, but gets me off my backside and doing more. I'm not incapable, so there's no reason why I shouldn't wash and clean and cook (woah, steady on girl!)! Still, I'm looking forward to her coming back next week (all being well)!
Talking of next week, my friend, Susie B, is talking about taking me out shopping! I've seen a Christian Dior lipstick (Rouge Dior) being advertised on the back of magazines and have fallen in love with the colour (can't seem to find out what the actual colour is, mind you!). Well, as I'm not going to the hairdresser's at the moment, I thought I'd get some nice make-up! So, watch this space!
I had another encounter with the postman this morning. This was the usual postman and I think he had a double take when he saw me. I had to sign for a small parcel, so answered the door as I was..............bald, no make-up and no prosthesis (scary)! I did however have clothes on, so there were some saving graces. Felt sorry for him really, but he didn't bat an eyelid - very professional.
The small parcel, by the way, was Livi's new Blackberry. She's sold her old phone and bought this - just got to change the price plan now!! She's been desperate for this for ages and well, it's her money. Much more acceptable than the piercing she's threatening to get (yes, we've had words!).
I've just realised, I use a huge amount of exclamation marks!!!!!!!!!! Will try and reduce, there really is no need I'm sure. Must try harder.................!
Thursday, 23 September 2010
Brief update
Sorry it's been so long, but here I am.
The chemo session was actually quite good on Friday. We had a joke with the nurses and it was much more relaxed. This was just as well, as I'd spent the previous night on the sofa again (hope this isn't going to become a habit!) - a combination of me not being able to fall asleep and Chris' snoring and strange noises!
We managed to go out for a meal with Vaughan in the evening (I had no intention of letting him down), but I was glad when we got home. I was feeling a bit queasy and tired.
The day after wasn't too bad again. Wasn't feeling brilliant, but managed ok. Gave myself the Neulasta injection (brave eh?) and carried on with the meds. Had a few unexpected visitors and Mum acted as my guardian. Progress continued the same as last time i.e. I really felt it over the next 2 days. Was it better than last time? Mmmmm.......didn't feel like it, but on the plus side, I was eating and drinking better. To be honest, I spent most of the time alternating between bed and the sofa. When you feel like that, you just want it to finish. Every time I tried to compare it with last episode, it just made me feel worse (what a wuss!).
I expected to feel better on the Tuesday than I did. The extra meds made me feel drowsy, so I only took them when I felt it necessary. As the nausea wasn't as acute and only coming in waves, I didn't take many!
Wednesday was better again, apart from feeling absolutely knackered. God it really takes it out of me. I wish I was stronger. Had a bit of a down day as a result. Every time I look in the mirror I see a person with cancer, who's going through chemo and looks ill and I don't want to be that person. Solution: don't look in the mirror until I'm feeling better!! Yay!
Today I expected another improvement, but got up this morning and didn't find it. Even showering tires me out! I'd had problems yesterday with acid reflux, so decided to take some Omeprazole today, which has helped. Had another sleep mid morning and after lunch felt better. I just felt so drained this morning and had a fuzzy head again. Of course, my first thoughts are my neutrophils! It's day 7 now and it was day 9 when I was hospitalised last time. Is my count going down, is that why I'm feeling so tired.............Has the injection worked..................Am I going to get another infection................???? I'm probably being over cautious with food - no salad, all veg and fruit cooked. Daft really, but I couldn't stomach that bloody awful sterilised water in hospital again! The boys came home yesterday with tales of a diarrhoea and vomiting bug going round at school - just what I need. Ah well.....
One of Chris' colleagues sent round a lasagne and a crumble for tea last night. They were delish - thanks Michelle - and enjoyed by all who ate them.
Life in the Tinsley house continues as normal. Mum does the school and college runs, cooking, cleaning, keeping a warm and watchful eye on all of us. Chris isn't feeling too bright and thinks he may be coming down with something. We've hardly seen Livi, she's out most of the time. The boys (all the boys!) still need reminding to close the doors, turn the lights out, not to stomp up the stairs - the usual. It's all going on around me at the moment - I still have a voice though and put my two penn'orth in occasionally (more than some would like at times, eh Chris!).
Thank you again for the messages of support, especially when they make me giggle (see comment from the other Auntie Rita), the texts, phone calls and picture messages.
Finally, Emma, who inspired me to do this blog has reached her year anniversary of her mastectomy. She's finished chemo and radiotherapy, just has a few months of Herceptin to get through. She looks and feels fantastic and it's a reminder that there is an end to this and I will get better.
The chemo session was actually quite good on Friday. We had a joke with the nurses and it was much more relaxed. This was just as well, as I'd spent the previous night on the sofa again (hope this isn't going to become a habit!) - a combination of me not being able to fall asleep and Chris' snoring and strange noises!
We managed to go out for a meal with Vaughan in the evening (I had no intention of letting him down), but I was glad when we got home. I was feeling a bit queasy and tired.
The day after wasn't too bad again. Wasn't feeling brilliant, but managed ok. Gave myself the Neulasta injection (brave eh?) and carried on with the meds. Had a few unexpected visitors and Mum acted as my guardian. Progress continued the same as last time i.e. I really felt it over the next 2 days. Was it better than last time? Mmmmm.......didn't feel like it, but on the plus side, I was eating and drinking better. To be honest, I spent most of the time alternating between bed and the sofa. When you feel like that, you just want it to finish. Every time I tried to compare it with last episode, it just made me feel worse (what a wuss!).
I expected to feel better on the Tuesday than I did. The extra meds made me feel drowsy, so I only took them when I felt it necessary. As the nausea wasn't as acute and only coming in waves, I didn't take many!
Wednesday was better again, apart from feeling absolutely knackered. God it really takes it out of me. I wish I was stronger. Had a bit of a down day as a result. Every time I look in the mirror I see a person with cancer, who's going through chemo and looks ill and I don't want to be that person. Solution: don't look in the mirror until I'm feeling better!! Yay!
Today I expected another improvement, but got up this morning and didn't find it. Even showering tires me out! I'd had problems yesterday with acid reflux, so decided to take some Omeprazole today, which has helped. Had another sleep mid morning and after lunch felt better. I just felt so drained this morning and had a fuzzy head again. Of course, my first thoughts are my neutrophils! It's day 7 now and it was day 9 when I was hospitalised last time. Is my count going down, is that why I'm feeling so tired.............Has the injection worked..................Am I going to get another infection................???? I'm probably being over cautious with food - no salad, all veg and fruit cooked. Daft really, but I couldn't stomach that bloody awful sterilised water in hospital again! The boys came home yesterday with tales of a diarrhoea and vomiting bug going round at school - just what I need. Ah well.....
One of Chris' colleagues sent round a lasagne and a crumble for tea last night. They were delish - thanks Michelle - and enjoyed by all who ate them.
Life in the Tinsley house continues as normal. Mum does the school and college runs, cooking, cleaning, keeping a warm and watchful eye on all of us. Chris isn't feeling too bright and thinks he may be coming down with something. We've hardly seen Livi, she's out most of the time. The boys (all the boys!) still need reminding to close the doors, turn the lights out, not to stomp up the stairs - the usual. It's all going on around me at the moment - I still have a voice though and put my two penn'orth in occasionally (more than some would like at times, eh Chris!).
Thank you again for the messages of support, especially when they make me giggle (see comment from the other Auntie Rita), the texts, phone calls and picture messages.
Finally, Emma, who inspired me to do this blog has reached her year anniversary of her mastectomy. She's finished chemo and radiotherapy, just has a few months of Herceptin to get through. She looks and feels fantastic and it's a reminder that there is an end to this and I will get better.
Thursday, 16 September 2010
Here we go again!
Yesterday, as Chris has mentioned, we went to see the Oncologist and to have bloods taken. We were called into see the phlebotomist first, who took one look at my PICC line and told me she couldn't take blood from there and that I'd have to wait for a nurse to do it. We sat back in the main waiting area to, well, wait. My name came over the tannoy to go to the clinic area. So, bloods would have to wait, we were to see the Oncologist first. I hadn't seen this lady before (I'd seen a few on the ward), Dr Williams - she's one of Dr Newman's (my consultant) team. We discussed my admission, bloods, nausea, sore mouth and the solutions that Dr Newman had suggested. It seems I'm on a really strong chemo regime. It's all calculated on your height and weight - no wonder I'm on a strong dose!! Dr Williams wasn't keen on reducing the dose, so we'll wait and see if the extra medications that she's prescribed will do the job. I've got a longer course of 1 of the anti sickness meds and another to take after that has finished. She's also prescribed a single injection which should last until the next session. This is the one that should stimulate the bone marrow into making white cells quicker. So, fingers crossed I have a better experience than last time!
We were then taken to the Chemo Suite as that was the only place where a nurse could take bloods from my PICC. They were busy, so an Assistant Practitioner took over. She was supposed to be showing someone who hadn't done it before, but things didn't quite go according to plan - par for the course so far! Try as she might, she couldn't get the syringe to feed any blood through. It was flushing ok (fluid was going into the vein), but it just wouldn't draw any blood out. I stood, lay, coughed (??) and sat, but nothing. Here we go again thought I! Eventually, she gave up and had to go in on the back of my wrist with a butterfly needle, but she got it first time! So now I'm wondering if the PICC's still ok. Apparently this can happen, it can work 1 time, then not the next. Well, we'll find out tomorrow, won't we??!! After that was done, we had to wait for the blood results to see if Friday's session was a goer. The message about the bloods came back ok, so we settled to wait for the meds. We waited and we waited, eventually Chris decided to go and ask. Good job he did, as they hadn't received the script! The pharmacist went to ask Dr Williams, who said she was still waiting for some more of the tests to come back (my liver bloods had previously shown a few problems, probably due to the chemo). Anyway the upshot was that I didn't need the extra meds immediately and could wait to pick them up on Friday! You live and learn....
Mum arrived late last night, so the fridge is now full again!! We had a busy afternoon after a lazy morning.
In between taking and picking up from college and school, we went to 1 surgery and picked up my med certificate, then had a pub lunch and went to the surgery where I work to drop the certificate off. It was lovely seeing some of the girls. Everyone looked really well considering the realities of working in a very busy GP surgery. I'm just sorry I'm not there to help out. I wore my blue scarf with a knot on the side, which seemed to go down well (I'm convinced people are just being kind - wait 'til I go commando!). A brief visit and we were off on our next assignment.
Talking of scarves.....you know I wrote on a previous post that Auntie M had sent some knitted scarves? Well, we had a play around with them tonight. Luckily, she rang and with Mum on the phone giving me instructions, I managed to do it right (Mum had tried last night, but I looked like I had a tea cosy on my head!!). See what you think......
It's really comfy and Chris prefers it to the cotton scarf. I may well wear this one to chemo tomorrow!!
Ironically, today is probably the best I've felt since the last session, shame it'll go downhill from tomorrow (yes, glass is always half empty)! However, with my extra meds, it may be better (learning the half full approach)!
It's my biggest boys 16th birthday tomorrow and all being well, we'll go out for a meal early evening. I really need to make this happen as his Cornish Pirates home shirt hasn't arrived yet!
So for now, wish me luck (I know you do, I can't help being touched that so many people care - thank you).
We were then taken to the Chemo Suite as that was the only place where a nurse could take bloods from my PICC. They were busy, so an Assistant Practitioner took over. She was supposed to be showing someone who hadn't done it before, but things didn't quite go according to plan - par for the course so far! Try as she might, she couldn't get the syringe to feed any blood through. It was flushing ok (fluid was going into the vein), but it just wouldn't draw any blood out. I stood, lay, coughed (??) and sat, but nothing. Here we go again thought I! Eventually, she gave up and had to go in on the back of my wrist with a butterfly needle, but she got it first time! So now I'm wondering if the PICC's still ok. Apparently this can happen, it can work 1 time, then not the next. Well, we'll find out tomorrow, won't we??!! After that was done, we had to wait for the blood results to see if Friday's session was a goer. The message about the bloods came back ok, so we settled to wait for the meds. We waited and we waited, eventually Chris decided to go and ask. Good job he did, as they hadn't received the script! The pharmacist went to ask Dr Williams, who said she was still waiting for some more of the tests to come back (my liver bloods had previously shown a few problems, probably due to the chemo). Anyway the upshot was that I didn't need the extra meds immediately and could wait to pick them up on Friday! You live and learn....
Mum arrived late last night, so the fridge is now full again!! We had a busy afternoon after a lazy morning.
In between taking and picking up from college and school, we went to 1 surgery and picked up my med certificate, then had a pub lunch and went to the surgery where I work to drop the certificate off. It was lovely seeing some of the girls. Everyone looked really well considering the realities of working in a very busy GP surgery. I'm just sorry I'm not there to help out. I wore my blue scarf with a knot on the side, which seemed to go down well (I'm convinced people are just being kind - wait 'til I go commando!). A brief visit and we were off on our next assignment.
Talking of scarves.....you know I wrote on a previous post that Auntie M had sent some knitted scarves? Well, we had a play around with them tonight. Luckily, she rang and with Mum on the phone giving me instructions, I managed to do it right (Mum had tried last night, but I looked like I had a tea cosy on my head!!). See what you think......
 | |||
| another one to add to my wardrobe! |
Ironically, today is probably the best I've felt since the last session, shame it'll go downhill from tomorrow (yes, glass is always half empty)! However, with my extra meds, it may be better (learning the half full approach)!
It's my biggest boys 16th birthday tomorrow and all being well, we'll go out for a meal early evening. I really need to make this happen as his Cornish Pirates home shirt hasn't arrived yet!
So for now, wish me luck (I know you do, I can't help being touched that so many people care - thank you).
Tuesday, 14 September 2010
Sunday saw me braving the outside world again. We went for lunch at a village pub, scarf firmly tied onto my ever decreasing stubble. Same style, different colour. I've now exhausted my collection of scarves - not difficult as I've only got 2! Although, Auntie M has sent some hand knitted ones for me to try (thank you - love the colours!). They're designed to go round the neck, but I'll have a play and see if I can adapt them. Having said that I feel the cold on my neck, so even if I don't get them on my head they'll still come in really useful.
I have in fact been really brave and stood on the driveway with no scarf at all - or commando as we like to call it! Not sure yet if it's bravery or a perverse desire to see what reaction I get from people walking by. To do that though, I have to actually look at peoples' faces - I opened the door to the postman yesterday and had to gauge his reaction by his voice as I couldn't look him in the eye! Ha ha, will have to try harder next time!
My head is looking quite patchy now - white areas where there's hardly any hair at all. I want to rub it all off, but my head is quite sensitive and it gets a bit tender if I try that! It's surprising though how quickly you get used to having little or no hair. I've always changed my hair styles and colours, so I guess this is just another make over!
I felt tired yesterday so didn't do much. I feel like Samson - losing my strength since my hair's been chopped off! It's either a busy weekend or my body's reaction of things to come later this week.
Today, I had a visit from H and baby Jessica. She's so beautiful and slept all the time she was here. Chris was working from home and took hold of her almost as soon as they arrived! You forget that yours were that small sometimes (well one of mine was, the other 2 were 8lb+). I'm holding off cuddles at the moment - too much going on with the PICC line and shedding hair all over the place! H looks really well too (motherhood obviously suits you!!) and is settling back in to domesticity with ease.
I have a trip to the hospital tomorrow to see the Oncologist and have bloods taken. Hopefully things are back on track for chemo on Friday. I need to remind them of the stomach injections and also more anti sickness medication to see me through the rougher times. Mum's also back with us tomorrow, to help us through the next round. I'm really hoping I feel ok Friday evening, as it's Vaughan's 16th and it would be nice to take him out for a meal.
As it's Tuesday, Chris has to run around with the boys for various training sessions. Tonight though, Susie B is taking Adam, so Chris just has Vaughan to ferry about. She's got a lot on her plate too at the moment, which makes us even more grateful to her.
Boys are home and Liv is due soon, so peace shattered for the day - TV on and everyone talking over each other (NFT - Normal For Tinsley's)!
Thanks, by the way, for the messages of support re the hair - I'm sure you're all just being kind, but it does make me feel better!
I have in fact been really brave and stood on the driveway with no scarf at all - or commando as we like to call it! Not sure yet if it's bravery or a perverse desire to see what reaction I get from people walking by. To do that though, I have to actually look at peoples' faces - I opened the door to the postman yesterday and had to gauge his reaction by his voice as I couldn't look him in the eye! Ha ha, will have to try harder next time!
My head is looking quite patchy now - white areas where there's hardly any hair at all. I want to rub it all off, but my head is quite sensitive and it gets a bit tender if I try that! It's surprising though how quickly you get used to having little or no hair. I've always changed my hair styles and colours, so I guess this is just another make over!
I felt tired yesterday so didn't do much. I feel like Samson - losing my strength since my hair's been chopped off! It's either a busy weekend or my body's reaction of things to come later this week.
Today, I had a visit from H and baby Jessica. She's so beautiful and slept all the time she was here. Chris was working from home and took hold of her almost as soon as they arrived! You forget that yours were that small sometimes (well one of mine was, the other 2 were 8lb+). I'm holding off cuddles at the moment - too much going on with the PICC line and shedding hair all over the place! H looks really well too (motherhood obviously suits you!!) and is settling back in to domesticity with ease.
I have a trip to the hospital tomorrow to see the Oncologist and have bloods taken. Hopefully things are back on track for chemo on Friday. I need to remind them of the stomach injections and also more anti sickness medication to see me through the rougher times. Mum's also back with us tomorrow, to help us through the next round. I'm really hoping I feel ok Friday evening, as it's Vaughan's 16th and it would be nice to take him out for a meal.
As it's Tuesday, Chris has to run around with the boys for various training sessions. Tonight though, Susie B is taking Adam, so Chris just has Vaughan to ferry about. She's got a lot on her plate too at the moment, which makes us even more grateful to her.
Boys are home and Liv is due soon, so peace shattered for the day - TV on and everyone talking over each other (NFT - Normal For Tinsley's)!
Thanks, by the way, for the messages of support re the hair - I'm sure you're all just being kind, but it does make me feel better!
Saturday, 11 September 2010
Still at home!
Still here and still adjusting to life outside of a single room. I'm not doing bad though!
Friday
After a night on the sofa (courtesy of a noisy sleeping partner!), Mary, (district nurse and friend) came to change my PICC dressing. Naturally we had a good chat too while the deed was being done. Mary is one of the warmest, caring and unpretentious people I know, so I was really pleased that she managed to come and tend to little old me!
After her visit I suddenly hit a wall and had to sleep, which I did until Chris and the boys came home. After dinner, Chris and I went for a walk around the block. This is the furthest I've been in a week and of course it was done under the cover of darkness with a hoodie on. The last time we'd been for a walk was the day before I went into hospital and I didn't feel too good when we got back. This time I felt fine - bit out of breath, which is ridiculous after only going round the block, but otherwise ok. A good night's sleep followed, thankfully!
Saturday
Breakfast today included my first full pot of coffee. Those of you who know me, know how I love a strong coffee. Since chemo though, it hasn't gone down very well. Chris did a pot on Thursday, but I found it too strong (too strong for me!!!). So today I did it and ground less, making a weaker pot. It went down much better - hurray, back on coffee (for now at least)!
Early afternoon saw the arrival of DadD and Heather. Haven't seen them for a while so it was nice - shock for them, but nice for me! They insisted we go out for lunch (oh god how was I going to cope with this???!). As with everything, you can't pussyfoot around - just got to get on with it. So, scarf tied, make-up and earrings on, off we went! The result...........
We went to a farm shop with a cafe (a favourite of Chris' at the moment) and I had another coffee (woah, steady on Trace!) and a sausage butty (local sausages and homemade bread).
They've decided not to stay with us, but spent the rest of the day and evening at ours before pootling off to their Travelodge and we'll see them again tomorrow. Think I'll sleep well again tonight (Chris willing!).........
Friday
After a night on the sofa (courtesy of a noisy sleeping partner!), Mary, (district nurse and friend) came to change my PICC dressing. Naturally we had a good chat too while the deed was being done. Mary is one of the warmest, caring and unpretentious people I know, so I was really pleased that she managed to come and tend to little old me!
After her visit I suddenly hit a wall and had to sleep, which I did until Chris and the boys came home. After dinner, Chris and I went for a walk around the block. This is the furthest I've been in a week and of course it was done under the cover of darkness with a hoodie on. The last time we'd been for a walk was the day before I went into hospital and I didn't feel too good when we got back. This time I felt fine - bit out of breath, which is ridiculous after only going round the block, but otherwise ok. A good night's sleep followed, thankfully!
Saturday
Breakfast today included my first full pot of coffee. Those of you who know me, know how I love a strong coffee. Since chemo though, it hasn't gone down very well. Chris did a pot on Thursday, but I found it too strong (too strong for me!!!). So today I did it and ground less, making a weaker pot. It went down much better - hurray, back on coffee (for now at least)!
Early afternoon saw the arrival of DadD and Heather. Haven't seen them for a while so it was nice - shock for them, but nice for me! They insisted we go out for lunch (oh god how was I going to cope with this???!). As with everything, you can't pussyfoot around - just got to get on with it. So, scarf tied, make-up and earrings on, off we went! The result...........
We went to a farm shop with a cafe (a favourite of Chris' at the moment) and I had another coffee (woah, steady on Trace!) and a sausage butty (local sausages and homemade bread).
They've decided not to stay with us, but spent the rest of the day and evening at ours before pootling off to their Travelodge and we'll see them again tomorrow. Think I'll sleep well again tonight (Chris willing!).........
Thursday, 9 September 2010
Hair today...........
Update on the hair front (back and sides!).
Yesterday, the day I was discharged, I found that while I was washing my hair I was well and truly moulting! It's finally started then.
My head had been feeling a bit sensitive for a while, so I wasn't too surprised. Pulled a few more out (for the novelty) and then got dressed ready to go home.
I wasn't shedding as I walked around, so wondered how long it would be before I decided to have it all shaved off. In the end sooner than I thought!
I woke up this morning to it all over the pillow and knew that if I washed my hair it would clog the sink. Well can't be faffed with that every morning, so I asked Chris if he'd do the dirty deed.
How do I feel about it? Well, there were tears this morning when I saw the pillow (an end to those started in hospital yesterday) but none when I'd been shorn. I'd always thought it would be harder for me to have huge strands coming out and I was right. I'm going to lose it anyway, so why wait for it to go patchy.
Naturally the photographer in the family wanted before and after pics, so I obliged for once. Please note these are warts and all - no make up!!
I'll leave you with the results (think I need to practise with my scarves!!).
Yesterday, the day I was discharged, I found that while I was washing my hair I was well and truly moulting! It's finally started then.
My head had been feeling a bit sensitive for a while, so I wasn't too surprised. Pulled a few more out (for the novelty) and then got dressed ready to go home.
I wasn't shedding as I walked around, so wondered how long it would be before I decided to have it all shaved off. In the end sooner than I thought!
I woke up this morning to it all over the pillow and knew that if I washed my hair it would clog the sink. Well can't be faffed with that every morning, so I asked Chris if he'd do the dirty deed.
How do I feel about it? Well, there were tears this morning when I saw the pillow (an end to those started in hospital yesterday) but none when I'd been shorn. I'd always thought it would be harder for me to have huge strands coming out and I was right. I'm going to lose it anyway, so why wait for it to go patchy.
Naturally the photographer in the family wanted before and after pics, so I obliged for once. Please note these are warts and all - no make up!!
I'll leave you with the results (think I need to practise with my scarves!!).
 | |
| With hair - day after discharge |
 | |||||||||||||||||||
| After Chris' handiwork |
I'm back - again!
It's me - back again. Down but not out.
Well, I didn't expect that! An all inclusive stay at the RUH, ensuite room, waited on hand and foot.
I think Chris has kept everyone in touch, summarising what's gone on. Must admit, I feel a lot better than I have done for what seems like ages. Looking back, I think I must have been experiencing my white cells dipping from the beginning of the week. I wasn't feeling brilliant, but thought that maybe due to the ups and downs of the chemo (having never experienced it before). Friday, I decided it would be wise to take my temperature - shivering being more of a sign of infection than chemo.
After being told to go straight to A&E in Bath, I had to wait for Chris to get changed. He did this when I went into labour with Vaughan - I had to wait for him to iron his trousers (???!!!!). He in turn was surprised when I didn't pack a bag (I didn't expect to stay in!).
I went into A&E while Chris parked up and I was taken straight to a bay (didn't have to sit in the waiting room with everyone else). However, nothing was going to run smoothly for us from thereon in. Long wait, no veins for cannula, then a breach of wait times meant admission to the ward! Poor Chris didn't leave until gone 02:00. You've probably read his blog (makes me laugh that he was the one carrying the axe, not the nurse - I'm sure us amateur psychologists can make something of that one!).
The next few days for me were a blur of nights into days, being woken up at regular intervals for obs, antibiotics, trying to eat food (my mouth and throat by this time were really painful) and foul tasting sterile water. The PICC line came when I wasn't feeling at my best! Sat in a wheelchair being pushed along drafty corridors in my gown (!) and my fleece! The procedure was interesting though. Bit nerve racking, especially after the radiographer told me it was strange doing a left arm, they do mostly right. Oh, and the ultrasound showed that my veins are really deep and small.......and there's only 1 that can be used realistically, so has to be right first time. She had to be gowned up and wear lead aprons as X-Rays are used to guide the line through the vein (very interesting to watch!!) - it was hot for her, so the aircon was put on. I was bloody freezing, but didn't want to put her off, so didn't complain. Anyway, she did her best and got the line in - not as long as she'd have liked, but she didn't want to change it in case the vein shut down. As it was my only chance and I desperately needed IV abx (intravenous antibiotics) we're making do. Hopefully this should last until the end of my chemo (they'll take bloods and put chemo in here), but if not I'll have to have it removed and a Hickman line put in my chest. So, fingers crossed it behaves eh?!
New procedure, "PICC line" and new word, "neutropenic"! Neutrophils are a type of white blood cell and are part of the immune system. Normal ranges are between 2 - 7.5 and anything below 1.5 classes you as neutropenic. Mine went down to 0. So with that and the fever, I was confined to my room on IV abx. There were also certain foods I wasn't allowed, such as any salad stuff, bottled water, anything unpasteurised, basically if it wasn't cooked I couldn't have it for risk of infection.
After various consultations, bloods/urines, medications etc (and taking me off the IV abx too early), my neutrophil count rose to 1.5 and my temp finally stayed below 38. Dispersible aspirin and various mouthwashes had been a huge help with my throat and mouth and I was allowed home on oral abx (to be honest this is what I, naively, thought would happen in A&E on Thursday evening). After waiting all day for my meds to come up, we finally left the hospital at 16:15 yesterday - hurrah!!!!!!!!!
After consideration, they've decided to keep to my original schedule of chemo on the 17th (subject to blood tests on the 15th), same dose, but they're going to give me 5 days worth of injections designed to stimulate my bone marrow into making white blood cells more quickly after the chemo. Hopefully this will help reduce my risk of another nasty infection.
What's it like to be home? Brilliant - noisy, but brilliant. We've never been the quietest of households and after 5 days pretty much on my own, it was a bit of a shock to the system! Give me a couple of days and I won't feel as though I've been away at all...........
Well, I didn't expect that! An all inclusive stay at the RUH, ensuite room, waited on hand and foot.
I think Chris has kept everyone in touch, summarising what's gone on. Must admit, I feel a lot better than I have done for what seems like ages. Looking back, I think I must have been experiencing my white cells dipping from the beginning of the week. I wasn't feeling brilliant, but thought that maybe due to the ups and downs of the chemo (having never experienced it before). Friday, I decided it would be wise to take my temperature - shivering being more of a sign of infection than chemo.
After being told to go straight to A&E in Bath, I had to wait for Chris to get changed. He did this when I went into labour with Vaughan - I had to wait for him to iron his trousers (???!!!!). He in turn was surprised when I didn't pack a bag (I didn't expect to stay in!).
I went into A&E while Chris parked up and I was taken straight to a bay (didn't have to sit in the waiting room with everyone else). However, nothing was going to run smoothly for us from thereon in. Long wait, no veins for cannula, then a breach of wait times meant admission to the ward! Poor Chris didn't leave until gone 02:00. You've probably read his blog (makes me laugh that he was the one carrying the axe, not the nurse - I'm sure us amateur psychologists can make something of that one!).
The next few days for me were a blur of nights into days, being woken up at regular intervals for obs, antibiotics, trying to eat food (my mouth and throat by this time were really painful) and foul tasting sterile water. The PICC line came when I wasn't feeling at my best! Sat in a wheelchair being pushed along drafty corridors in my gown (!) and my fleece! The procedure was interesting though. Bit nerve racking, especially after the radiographer told me it was strange doing a left arm, they do mostly right. Oh, and the ultrasound showed that my veins are really deep and small.......and there's only 1 that can be used realistically, so has to be right first time. She had to be gowned up and wear lead aprons as X-Rays are used to guide the line through the vein (very interesting to watch!!) - it was hot for her, so the aircon was put on. I was bloody freezing, but didn't want to put her off, so didn't complain. Anyway, she did her best and got the line in - not as long as she'd have liked, but she didn't want to change it in case the vein shut down. As it was my only chance and I desperately needed IV abx (intravenous antibiotics) we're making do. Hopefully this should last until the end of my chemo (they'll take bloods and put chemo in here), but if not I'll have to have it removed and a Hickman line put in my chest. So, fingers crossed it behaves eh?!
New procedure, "PICC line" and new word, "neutropenic"! Neutrophils are a type of white blood cell and are part of the immune system. Normal ranges are between 2 - 7.5 and anything below 1.5 classes you as neutropenic. Mine went down to 0. So with that and the fever, I was confined to my room on IV abx. There were also certain foods I wasn't allowed, such as any salad stuff, bottled water, anything unpasteurised, basically if it wasn't cooked I couldn't have it for risk of infection.
After various consultations, bloods/urines, medications etc (and taking me off the IV abx too early), my neutrophil count rose to 1.5 and my temp finally stayed below 38. Dispersible aspirin and various mouthwashes had been a huge help with my throat and mouth and I was allowed home on oral abx (to be honest this is what I, naively, thought would happen in A&E on Thursday evening). After waiting all day for my meds to come up, we finally left the hospital at 16:15 yesterday - hurrah!!!!!!!!!
After consideration, they've decided to keep to my original schedule of chemo on the 17th (subject to blood tests on the 15th), same dose, but they're going to give me 5 days worth of injections designed to stimulate my bone marrow into making white blood cells more quickly after the chemo. Hopefully this will help reduce my risk of another nasty infection.
What's it like to be home? Brilliant - noisy, but brilliant. We've never been the quietest of households and after 5 days pretty much on my own, it was a bit of a shock to the system! Give me a couple of days and I won't feel as though I've been away at all...........
Tuesday, 7 September 2010
Last night?
Oh joy, neutrophils 1.5, nearly back to normal so my baby may be coming home tomorrow. I saw her this afternoon and she is looking much better. She should have a better night sleep as I brought her fresh PJ's. She will be going back on to oral antibiotics. I know we have been here before but this time it will happen.
Reasons why I know:
The sun is shining
Livi and Adam are arguing
I am listening to the Ting Tings
Life must be on the way up and up.
I am cooking tea, we have rugby and football tonight followed by shopping and cleaning. Talk again soon on my own blog.
Chris x
Reasons why I know:
The sun is shining
Livi and Adam are arguing
I am listening to the Ting Tings
Life must be on the way up and up.
I am cooking tea, we have rugby and football tonight followed by shopping and cleaning. Talk again soon on my own blog.
Chris x
Still me
Tracey's temperature went up again last night and she was put back on IV antibiotics. We were hoping to get her home today but now this is not possible, she is hopeful for tomorrow but don't hold your collective breath. It seems a long time ago but I think she has spent longer in hospital for this than for her operation. Our spirits are high though and I am sure she will be out soon and fighting fit.
Can anybody think of something to cheer her up? They don't do flowers in the ward and I am thinking of banning them from the home, she has some chocolates and a book and puzzler magazines. I am open to suggestions. I long holiday abroad is what she really needs, she will probably get a day trip to Chippenham (and I know how impossibly romantic that might seem to those of you from north of Birmingham but believe me it isn't).
Life goes on as usual at home, the boys have Rugby and football training at the same time this evening, I will have to lean on friends yet again. Adam told me this morning that he needs swimming goggles for tomorrow and Livi thinks she needs a doctors appointment as she is so ill. Vaughan got dressed late this morning and managed to get out of most of the cleaning duties last night by claiming homework.
We will get through this soon.
Chris x
Can anybody think of something to cheer her up? They don't do flowers in the ward and I am thinking of banning them from the home, she has some chocolates and a book and puzzler magazines. I am open to suggestions. I long holiday abroad is what she really needs, she will probably get a day trip to Chippenham (and I know how impossibly romantic that might seem to those of you from north of Birmingham but believe me it isn't).
Life goes on as usual at home, the boys have Rugby and football training at the same time this evening, I will have to lean on friends yet again. Adam told me this morning that he needs swimming goggles for tomorrow and Livi thinks she needs a doctors appointment as she is so ill. Vaughan got dressed late this morning and managed to get out of most of the cleaning duties last night by claiming homework.
We will get through this soon.
Chris x
Sunday, 5 September 2010
Yet another update
Adam and I visited Tracey today. She looks a tiny bit better. She is no longer on a drip, this is because she was having a problem with water retention, so she is now drinking her pure H2O. This tastes vile and we brought some juice to go with it. She is having her IV antibiotics which causes a bad taste in her mouth, so we brought some wine gums for her to chew on. She is still not well and doesn't expect to get out Tuesday at the earliest.
The good news is that she now has a neurophil count, very small at the moment but a count none the less. Perhaps this is the start of her recovery. The upshot of this setback is that she might have her next chemo put back a week from the 17th to the 24th. This is a small price to pay for her health.
This is only a short note so just one more point, she has he Iphone with her so she can read these blogs, even if she is not posting at the moment. If you want to leave her a message I'm sure it would cheer her up.
Chris x
The good news is that she now has a neurophil count, very small at the moment but a count none the less. Perhaps this is the start of her recovery. The upshot of this setback is that she might have her next chemo put back a week from the 17th to the 24th. This is a small price to pay for her health.
This is only a short note so just one more point, she has he Iphone with her so she can read these blogs, even if she is not posting at the moment. If you want to leave her a message I'm sure it would cheer her up.
Chris x
Saturday, 4 September 2010
Update
Tracey is still in isolation at the hospital. This slightly less dramatic than it sounds, her room is in an annex to the main ward and has certain restrictions, no flowers, no outside coats, but there is no limit on visiting, above the usual and there is a regular flow of staff. She has her own room which she is enjoying, with toilet and washing facilities. It is a bit like a hotel.
She is tired, the virus is wearing her out, the needles are wearing her out. She now has a picc line fitted (look it up) and is getting her antibiotics through it. Her left arm is black and blue from yesterdays needles. Because the picc line is fitted to her left arm and she had the lymph nodes removed from her right arm she is now having her blood pressure taken from leg which she thinks is very strange. Her temperature is still spiking and she is still unwell. The virus remains. We are hoping she will be getting back to normal by Monday or Tuesday and will be home then. We will have to wait and see.
At home we are coping OK. The kids still have to be carried back and forth. Livi was at work at 6:30 and Adam needed to go to Swindon for Futsal. Vaughan is starting rugby on Sunday. Luckily friends have been taking up the slack and I am grateful to them for that.
A letter of complaint to Wiltshire, who's idea was it to cut the buses between Corsham and Melksham? I went to visit Tracey on Friday and got a ring from Vaughan at 3:15 after school, there are no buses from Corsham to Melksham after 2:05 so I had leave the hospital and pick the boys up as they were threatening to walk the 5 miles home.
Our old friend from Plymouth Carole came round this morning with a friend. She stroked our rabbits and chased a cat. It was lovely to see her again.
I am going to see Trace again tomorrow, probably with Adam. She is feeling a bit down and is only seeing family at the moment. I will update you all again tomorrow.
Chris x
She is tired, the virus is wearing her out, the needles are wearing her out. She now has a picc line fitted (look it up) and is getting her antibiotics through it. Her left arm is black and blue from yesterdays needles. Because the picc line is fitted to her left arm and she had the lymph nodes removed from her right arm she is now having her blood pressure taken from leg which she thinks is very strange. Her temperature is still spiking and she is still unwell. The virus remains. We are hoping she will be getting back to normal by Monday or Tuesday and will be home then. We will have to wait and see.
At home we are coping OK. The kids still have to be carried back and forth. Livi was at work at 6:30 and Adam needed to go to Swindon for Futsal. Vaughan is starting rugby on Sunday. Luckily friends have been taking up the slack and I am grateful to them for that.
A letter of complaint to Wiltshire, who's idea was it to cut the buses between Corsham and Melksham? I went to visit Tracey on Friday and got a ring from Vaughan at 3:15 after school, there are no buses from Corsham to Melksham after 2:05 so I had leave the hospital and pick the boys up as they were threatening to walk the 5 miles home.
Our old friend from Plymouth Carole came round this morning with a friend. She stroked our rabbits and chased a cat. It was lovely to see her again.
I am going to see Trace again tomorrow, probably with Adam. She is feeling a bit down and is only seeing family at the moment. I will update you all again tomorrow.
Chris x
Friday, 3 September 2010
Hospital in a rush
Tracey had a headache last night, a sort of muzzy feeling and her temperature started to rise 38.5, 38.6, 38.7. She followed protocol, rung the cancer ward and by 9:00 we were in A&E. Tracey will, I am sure, tell you full story but bloods were taken, she is like a pin cushion, doctors should let nurses take bloods they are so much better. Her temperature started to go down and after waiting and waiting she was taken up to the William Budd ward at around 2:00. This is part of the cancer suite. So she has had an overnight stay. the blood test reveal that her neutrophils are at zero leaving her open to infection. This is apparently not uncommon for people on the first dose of this protocol. She will now have to have IV antibiotics. I am not sure how long her stay will be but she is in her own isolated room to avoid further infection. I will keep you all posted.
Since I first wrote this she has been put on oral antibiotics and will be in hospital until her white cells multiply.
Chris x
Since I first wrote this she has been put on oral antibiotics and will be in hospital until her white cells multiply.
Chris x
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