Day 4 after chemo 4.
Still well. I AM feeling the tiredness but even that isn't as bad without the debilitating effect of sickness. I had my follow up appointment with the consultant today, 10.45am, which was good, EXCEPT we've had blizzards and heaps and piles of snow. I managed to get the car out though and got there half an hour early. My notes weren't back from chemo so I ran (really!) upstairs to get them and nearly killed myself. Had to sit down to recover. Still. Good though.
I didn't actually see the consultant again; one of his assistants. Young, oriental, pretty, nice. She asked for my side effects and I rattled them off, randomly, haphazardly. I even flustered her I think. Oh for my MIND back!
Just BEING in that bloody hospital makes me feel sick. I hate it there. I got out as soon as I could and arranged to meet R for a coffee. Except I had tea. Earl Gray. Tastes better than normal tea at the moment. Now cooking dinner and feeling OK. Let it snow. Let it hail. Let it do whatever the fuck it likes. I don't care. I feel well. Ye bloody ha.
Monday, 29 November 2010
Friday, 26 November 2010
77. Day 2 (after chemo 4)
Well, well, well. Pretty much sums it up.
I lazed around in bed some of the morning, expecting to feel icky but didn't, much. Took ALL the anti sickness pills, had several drinks, ramped it up (ooooh, daring) to a little Heinz tomato soup and later onto a small bowl of my frozen lentil soup.
I felt OK. Hey, who'd have thought? Certainly not me.
Later, I braved going out to the supermarket with R. I found some new fluffy pyjamas AND managed to shop. And didn't collapse when I got home.
How can chemo 4 be better than any of the others? I kept expecting some sort of ill effect to kick in but nothing did. OK, the steroids DID keep me up half the night and I did need to up the anti sickness meds by the evening but nothing major.
Later, R's mate came round. I felt a prat sitting in my pj's in front of a bloke I don't know. Totally weirded out when he put his arm around me and pecked me on the cheek. He's a nurse, so I understand the compassion, but, really, NO!!!
I lazed around in bed some of the morning, expecting to feel icky but didn't, much. Took ALL the anti sickness pills, had several drinks, ramped it up (ooooh, daring) to a little Heinz tomato soup and later onto a small bowl of my frozen lentil soup.
I felt OK. Hey, who'd have thought? Certainly not me.
Later, I braved going out to the supermarket with R. I found some new fluffy pyjamas AND managed to shop. And didn't collapse when I got home.
How can chemo 4 be better than any of the others? I kept expecting some sort of ill effect to kick in but nothing did. OK, the steroids DID keep me up half the night and I did need to up the anti sickness meds by the evening but nothing major.
Later, R's mate came round. I felt a prat sitting in my pj's in front of a bloke I don't know. Totally weirded out when he put his arm around me and pecked me on the cheek. He's a nurse, so I understand the compassion, but, really, NO!!!
76. NOT so bad after all
4th chemo. I worried myself shitless about FEC 4 after I developed phlebitis after 3. By the week before it was due though, I gave myself a talking to; I was ruining my quality of life by worrying in between cycles. It worked reasonably well. Less worrying, more peace of mind.
Day before, I was still managing to keep my mind off it, just. Chemo day dawned though and I couldn't avoid it anymore. We arrived and were taken in 1/2 hour late. G, the male nurse I had for chemo 2. Well, he was fast and efficient at least. Knew well what he was doing, thank goodness after last time with the sister from hell, who it now transpires, may well have caused my phlebitis due to her dodgy needle insertion.
Anyway, my worst fears were avoided. G found another vein in my right hand, wrist actually (really fucking hurt, having a needle put into the wrist). He'd phoned the consultant and had been advised to give me a shot of hydro cortisone prior to chemo to stop any adverse reaction. I had my Emend anti sickness and off he went, a bit too quickly really as he hadn't given the anti sickness time to kick in. I was jumpy, nervous and scared. No two ways around it. G commented on it but continued. Half way through I developed a bad bout of shivering and was FREEZING. G didn't stop or appear unduly worried, but after he'd finished he tucked my coat around me. Very thoughtful.
Before I left, he went through my meds with me. I've got more now, to keep the sickness under control. As we left, I felt like shit and started to cry, so we sat down for a bit. Then I felt puky and thankfully made it to the loo in time. I felt much better after being sick, if still somewhat weepy. However, I could tell anymore exertion of any kind would set the nausea off again, so I sucked it up and went home.
I stayed on the sofa all evening. Tried to go to bed once but it was too noisy upstairs so went down to the sofa again. I briefly considered going home, but not a good idea really, being on my own on chemo day.
Day before, I was still managing to keep my mind off it, just. Chemo day dawned though and I couldn't avoid it anymore. We arrived and were taken in 1/2 hour late. G, the male nurse I had for chemo 2. Well, he was fast and efficient at least. Knew well what he was doing, thank goodness after last time with the sister from hell, who it now transpires, may well have caused my phlebitis due to her dodgy needle insertion.
Anyway, my worst fears were avoided. G found another vein in my right hand, wrist actually (really fucking hurt, having a needle put into the wrist). He'd phoned the consultant and had been advised to give me a shot of hydro cortisone prior to chemo to stop any adverse reaction. I had my Emend anti sickness and off he went, a bit too quickly really as he hadn't given the anti sickness time to kick in. I was jumpy, nervous and scared. No two ways around it. G commented on it but continued. Half way through I developed a bad bout of shivering and was FREEZING. G didn't stop or appear unduly worried, but after he'd finished he tucked my coat around me. Very thoughtful.
Before I left, he went through my meds with me. I've got more now, to keep the sickness under control. As we left, I felt like shit and started to cry, so we sat down for a bit. Then I felt puky and thankfully made it to the loo in time. I felt much better after being sick, if still somewhat weepy. However, I could tell anymore exertion of any kind would set the nausea off again, so I sucked it up and went home.
I stayed on the sofa all evening. Tried to go to bed once but it was too noisy upstairs so went down to the sofa again. I briefly considered going home, but not a good idea really, being on my own on chemo day.
Tuesday, 23 November 2010
75. Here we go again...
Chemo day after tomorrow. I'm trying REALLY hard not to think about it. WHERE are they going to put it in? Foot I could just about deal with. Don't want and am terrified of having a clavicle port. Equally worried about having a porto cath (arm?). Don't want my inflamed veins further damaged.
On the plus side, I'm making hats from a pattern recommended to me by a woman I met at the benefits and work workshop. VERY nice. I'm making them in jersey so they're soft. Very funky. I'd wear them even if I had hair, unlike the scarves and that damn wig. Have made 3 so far and have 2 more on the go. I'm sending one to Justine in the US and am gonna make one for my little pumpkin. Justine is having a seriously hard time which is both a lesson and a warning to me.
On the plus side, I'm making hats from a pattern recommended to me by a woman I met at the benefits and work workshop. VERY nice. I'm making them in jersey so they're soft. Very funky. I'd wear them even if I had hair, unlike the scarves and that damn wig. Have made 3 so far and have 2 more on the go. I'm sending one to Justine in the US and am gonna make one for my little pumpkin. Justine is having a seriously hard time which is both a lesson and a warning to me.
Wednesday, 17 November 2010
74. Reflection or moaning? You choose
So I've been reflecting on chemo so far. The things I hate are:
1 Seeing it put in. The sight of the red chemical is almost enough to make me vomit.
2 The chemo suite. I hate it. Really bad associations.
3 The nausea and sickness. Obviously.
4 The way the chemicals make my head feel. I feel swimmy and not like me. I get some sort of disorientating dizziness. Never again will I take anything willingly that alters my state of mind.
5 The way I have to be in bed for days afterwards. I suppose, strictly speaking, I don't have to be, but the only place I have any sense of comfort or normality is in bed.
6 The fear I feel before I have it. It terrifies me.
7 The sense that they are filling my body with poisons. Which they are.
Strangely enough, other things don't bother me. I don't really care about being bald although I do hate having to wear something on my head. I'm not too fussed about the ulcers that are trying to form at the corners of my mouth, or about my tongue feeling burned all the time. I don't really care anymore about my lack of libido (although, actually, it's come back for the time being) or even about other sensitive areas being a bit sore (I'm trying to keep this polite). Dry skin is no more than a passing irritation. The phlebitis is slightly annoying and I do worry I'll develop a clot from it but as far as my tolerance of it goes, it's OK. I don't actually like my boob being scarred and a different size and shape to the other one, but I can put up with it. Even the operation itself was OK. I think the upshot really is (so far) that I can cope with most things when I'm not actually at the hospital having chemo administered and the 48 hours immediately afterwards.
1 Seeing it put in. The sight of the red chemical is almost enough to make me vomit.
2 The chemo suite. I hate it. Really bad associations.
3 The nausea and sickness. Obviously.
4 The way the chemicals make my head feel. I feel swimmy and not like me. I get some sort of disorientating dizziness. Never again will I take anything willingly that alters my state of mind.
5 The way I have to be in bed for days afterwards. I suppose, strictly speaking, I don't have to be, but the only place I have any sense of comfort or normality is in bed.
6 The fear I feel before I have it. It terrifies me.
7 The sense that they are filling my body with poisons. Which they are.
Strangely enough, other things don't bother me. I don't really care about being bald although I do hate having to wear something on my head. I'm not too fussed about the ulcers that are trying to form at the corners of my mouth, or about my tongue feeling burned all the time. I don't really care anymore about my lack of libido (although, actually, it's come back for the time being) or even about other sensitive areas being a bit sore (I'm trying to keep this polite). Dry skin is no more than a passing irritation. The phlebitis is slightly annoying and I do worry I'll develop a clot from it but as far as my tolerance of it goes, it's OK. I don't actually like my boob being scarred and a different size and shape to the other one, but I can put up with it. Even the operation itself was OK. I think the upshot really is (so far) that I can cope with most things when I'm not actually at the hospital having chemo administered and the 48 hours immediately afterwards.
Sunday, 14 November 2010
73. Recovery
So. No sickness. I stayed at R's for the night but then, bingo, the next day, the stuff that passes for music that his son makes started. R was in town, and out to the pub that night so I thought that I might as well be at home. I was wobbly, but grabbed the nearest pile of my stuff and the meds and went home.
I was in bed mostly for 3 days. Eating was possible, because I wasn't vomiting but I did have intermittent nausea so didn't want anything with any lumps in it. Heinz tomato soup got a bit old after a while but L, the vicar from work, came round with some amazing lentil soup. I made it last for 3 servings it was so nice. It actually settled my stomach which was a relief. It was lovely to see her and hear her good news. She's been given a lottery grant so is starting a cafe, one day a week, in her local area. I'll definitely be there. They're amazing cooks!
Saturday, when I woke up, I realised my chemo arm was stiff and sore. I remembered that in the night I'd got up to go to the loo and thought I saw my veins turning brown along the arm. At the time, I'd dismissed it as a nightmare, but there was some discolouration.
I phoned the chemo ward and they told me to go to A&E. Could be infection, could be phlebitis. Thankfully, A&E next door (literally across the road) was still open, although due for closure a week later. I dragged myself round, exhausted and sweating by the time I got there. Sitting in the waiting room was hard, I could barely keep myself upright. It was the first real time that I'd felt like an ill person. I mean, I HATE chemo and it makes me feel like shit, but that is artificial illness. Chemo would make an athlete ill. But sitting in that dingy hospital, in a waiting room with people with cuts and broken bones, made me feel abnormal.
I was seen really quickly. The blood pressure machine wasn't working (either that or I was sicker than I thought). The doctor was a young girl who seemed very unsure, but she diagnosed phlebitis too and gave me antibiotics, instructing me to come back if it got worse and to contact my doctor if it didn't get any better.
Over the weekend I spoke to S. He said that a long line would be a good idea to avoid any more problems like this. At the time I didn't ask what this was.
Monday, day 4, I was still really tired. My arm was no worse but no better so I phoned the consultants secretary. She said that he should assess me in clinic that afternoon. Bugger. Got to go out again. My rent was due and the agent hadn't arranged a standing order mandate as I'd requested so I had to go out to pay it. I went to R's afterwards but he seemed pissed off so I went home again. Back to bed for an hour.
I had a taxi take me to the hospital. I couldn't face driving. The consultant didn't inspire confidence. He was distant and cold with a rather nasty patch of eczema on his face. He told me to discontinue the antibiotics and stick to ibuprofen. He made some changes to my anti sickness meds and that was it. I asked him how I'd get my chemo next time and he rather ominously said 'They'll get it in somehow.' Very reassuring. He did say that they should be able to manage side effects from the chemo each time but also said that I shouldn't feel as ill as I did on only cycle 3. He also mentioned a long line being fitted but said it could hopefully be avoided as I'd only got 3 cycles left.
R picked me up from the hospital and took me back to his. I felt I had to make an effort but really couldn't stay upright so went to bed. The sheets needed changing. I wanted to be at home. :-(
I was in bed mostly for 3 days. Eating was possible, because I wasn't vomiting but I did have intermittent nausea so didn't want anything with any lumps in it. Heinz tomato soup got a bit old after a while but L, the vicar from work, came round with some amazing lentil soup. I made it last for 3 servings it was so nice. It actually settled my stomach which was a relief. It was lovely to see her and hear her good news. She's been given a lottery grant so is starting a cafe, one day a week, in her local area. I'll definitely be there. They're amazing cooks!
Saturday, when I woke up, I realised my chemo arm was stiff and sore. I remembered that in the night I'd got up to go to the loo and thought I saw my veins turning brown along the arm. At the time, I'd dismissed it as a nightmare, but there was some discolouration.
I phoned the chemo ward and they told me to go to A&E. Could be infection, could be phlebitis. Thankfully, A&E next door (literally across the road) was still open, although due for closure a week later. I dragged myself round, exhausted and sweating by the time I got there. Sitting in the waiting room was hard, I could barely keep myself upright. It was the first real time that I'd felt like an ill person. I mean, I HATE chemo and it makes me feel like shit, but that is artificial illness. Chemo would make an athlete ill. But sitting in that dingy hospital, in a waiting room with people with cuts and broken bones, made me feel abnormal.
I was seen really quickly. The blood pressure machine wasn't working (either that or I was sicker than I thought). The doctor was a young girl who seemed very unsure, but she diagnosed phlebitis too and gave me antibiotics, instructing me to come back if it got worse and to contact my doctor if it didn't get any better.
Over the weekend I spoke to S. He said that a long line would be a good idea to avoid any more problems like this. At the time I didn't ask what this was.
Monday, day 4, I was still really tired. My arm was no worse but no better so I phoned the consultants secretary. She said that he should assess me in clinic that afternoon. Bugger. Got to go out again. My rent was due and the agent hadn't arranged a standing order mandate as I'd requested so I had to go out to pay it. I went to R's afterwards but he seemed pissed off so I went home again. Back to bed for an hour.
I had a taxi take me to the hospital. I couldn't face driving. The consultant didn't inspire confidence. He was distant and cold with a rather nasty patch of eczema on his face. He told me to discontinue the antibiotics and stick to ibuprofen. He made some changes to my anti sickness meds and that was it. I asked him how I'd get my chemo next time and he rather ominously said 'They'll get it in somehow.' Very reassuring. He did say that they should be able to manage side effects from the chemo each time but also said that I shouldn't feel as ill as I did on only cycle 3. He also mentioned a long line being fitted but said it could hopefully be avoided as I'd only got 3 cycles left.
R picked me up from the hospital and took me back to his. I felt I had to make an effort but really couldn't stay upright so went to bed. The sheets needed changing. I wanted to be at home. :-(
Saturday, 13 November 2010
72. 3rd chemo
Cycle 2 side effects
Severe vomiting (Unable to keep any fluids down for more than 30 mins)
Vomiting from 7pm on day of chemo. Hourly for 36 hours
and then every 3 or 4 hours for a further 36 hours
Moderate to severe headache
Hot and cold sweats for vomiting period
Moderate sore throat
Day 3/4/5 moderate to severe pain in stomach (from previous ulcer?)
Cycle 3
This is hard. Even thinking about it makes me feel sick. But...
Got to the hospital on time. Had to wait an hour, which was annoying because it took a lot for me to psych myself up to it in the first place. When finally I was taken through into the chemo suite, it was packed. One nurse off sick.
I'd had the local anaesthetic cream on my hand for 2 hours by the time the nurse got to me. She was disorganised and chaotic and didn't inspire confidence. She didn't bother with the hot water to dilate my veins and put the cannula straight in, complaining about the quality of the vein. Duh.
I waited about another 30 mins and a different nurse (thank goodness) came over. I gave her my pre-typed list of symptoms (above) and she went away. After another wait of half an hour, she came back with a pill (Emend) for me. I had to take it and wait another hour. I didn't hold out much hope of it reducing my level of nausea.
When finally she came to start my chemo, I already felt sick. As she gave it, I felt sicker and sicker. Eventually, I asked for a sick bowl. The thought of throwing up in front of loads of other people was mortifying but...
The injections went in slowly. The saline drip wasn't clearing easily and she had to keep waiting. But eventually it was done. I was given the usual anti sickness drugs and an additional two pill of Emend to take home.
We went back to R's. I sat on the sofa and dozed (thankfully). When I woke up at about 9.30 I took some sickness meds and went to bed.
No vomiting!
Severe vomiting (Unable to keep any fluids down for more than 30 mins)
Vomiting from 7pm on day of chemo. Hourly for 36 hours
and then every 3 or 4 hours for a further 36 hours
Moderate to severe headache
Hot and cold sweats for vomiting period
Moderate sore throat
Day 3/4/5 moderate to severe pain in stomach (from previous ulcer?)
Cycle 3
This is hard. Even thinking about it makes me feel sick. But...
Got to the hospital on time. Had to wait an hour, which was annoying because it took a lot for me to psych myself up to it in the first place. When finally I was taken through into the chemo suite, it was packed. One nurse off sick.
I'd had the local anaesthetic cream on my hand for 2 hours by the time the nurse got to me. She was disorganised and chaotic and didn't inspire confidence. She didn't bother with the hot water to dilate my veins and put the cannula straight in, complaining about the quality of the vein. Duh.
I waited about another 30 mins and a different nurse (thank goodness) came over. I gave her my pre-typed list of symptoms (above) and she went away. After another wait of half an hour, she came back with a pill (Emend) for me. I had to take it and wait another hour. I didn't hold out much hope of it reducing my level of nausea.
When finally she came to start my chemo, I already felt sick. As she gave it, I felt sicker and sicker. Eventually, I asked for a sick bowl. The thought of throwing up in front of loads of other people was mortifying but...
The injections went in slowly. The saline drip wasn't clearing easily and she had to keep waiting. But eventually it was done. I was given the usual anti sickness drugs and an additional two pill of Emend to take home.
We went back to R's. I sat on the sofa and dozed (thankfully). When I woke up at about 9.30 I took some sickness meds and went to bed.
No vomiting!
Thursday, 4 November 2010
71. Don't want to
R's birthday yesterday so he had some friends round last night. Should have been nice but wasn't because I'm dreading chemo today.
It's depressing me. I don't want to have stuff that is going to make me feel like death for 4 days. I'm scared. 2 days of vomiting every hour. I didn't want to get up. I didn't want to have to line up the medication ready for later. I didn't want to have to sort out my clothes because I won't be up to it for a week.
I HATE this.
Oh and my boob hurts. My underarm hurts. My arm aches. My libido is zero and I'm officially menopausal now. The TWO consultants I saw both said my lump is probably OK but I'm still scared and worried its another tumour. If they're wrong I could die. Nice gamble.
It's depressing me. I don't want to have stuff that is going to make me feel like death for 4 days. I'm scared. 2 days of vomiting every hour. I didn't want to get up. I didn't want to have to line up the medication ready for later. I didn't want to have to sort out my clothes because I won't be up to it for a week.
I HATE this.
Oh and my boob hurts. My underarm hurts. My arm aches. My libido is zero and I'm officially menopausal now. The TWO consultants I saw both said my lump is probably OK but I'm still scared and worried its another tumour. If they're wrong I could die. Nice gamble.
70. Practical shit
Went to a symposium on cancer, work and state benefits. It was mostly a lot of waffle but I did get to ask a few questions. Answers below.
1) It is typical for teachers to be discouraged to work during treatment despite periods of wellness. If I'm well enough to work, my employer should allow me to.
2) I'm entitled to Statutory Sick Pay as well as my salary (although, as I haven't seen my payslips since I've been off yet, don't know if I'm getting it at the moment or not).
3) My employer needs to make reasonable adjustments to my job to enable me to continue working when I'm ready to return (which may or may not mean I'll need to go part time, if I'm taking Tamoxifen (sic?) permanently).
4) Anyone with a cancer diagnosis at any point in their life has permanent disabled status, thus conferring extra employment rights (sounds nuts, but actually makes sense. To prevent employees missing out on promotions or being discriminated against when applying for new jobs because of the cancer).
5) I should get a phased return to work and need to have this specified in writing so there is no confusion about it.
************************************************************************************************************
As well as the information, I also noticed what a sheer relief it was to be in a room with people that all had/have had cancer. Although I was wearing a scarf, it felt symbolically as if I'd chosen to take off my head covering and sit bald, with no judgement. In that room, a bald woman with cancer was normal; in the majority. It's been 4 months since I've felt normal in any way.
I also talked a bit to a woman wearing a HOT hat. Turned out she'd made it herself. To date (27.11.10) I've made 5.
1) It is typical for teachers to be discouraged to work during treatment despite periods of wellness. If I'm well enough to work, my employer should allow me to.
2) I'm entitled to Statutory Sick Pay as well as my salary (although, as I haven't seen my payslips since I've been off yet, don't know if I'm getting it at the moment or not).
3) My employer needs to make reasonable adjustments to my job to enable me to continue working when I'm ready to return (which may or may not mean I'll need to go part time, if I'm taking Tamoxifen (sic?) permanently).
4) Anyone with a cancer diagnosis at any point in their life has permanent disabled status, thus conferring extra employment rights (sounds nuts, but actually makes sense. To prevent employees missing out on promotions or being discriminated against when applying for new jobs because of the cancer).
5) I should get a phased return to work and need to have this specified in writing so there is no confusion about it.
************************************************************************************************************
As well as the information, I also noticed what a sheer relief it was to be in a room with people that all had/have had cancer. Although I was wearing a scarf, it felt symbolically as if I'd chosen to take off my head covering and sit bald, with no judgement. In that room, a bald woman with cancer was normal; in the majority. It's been 4 months since I've felt normal in any way.
I also talked a bit to a woman wearing a HOT hat. Turned out she'd made it herself. To date (27.11.10) I've made 5.
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