Couldn't get to sleep tonight then got hungry so came downstairs at 1am to get a sandwich.
Switched on one tiny kitchen light. Yes that's right, one light, in my own home that I jointly own - no law against it, one would think.
Well, one would be wrong. First of all Bleddy Cat starts creating a huge noisy fuss out in the conservatory. Creating huge noisy fusses indoors during the night is how she ended up banished to the conservatory in the first place. Some never learn.
Simultaneously the baby starts crashing and shuffling in her cot and can be clearly heard shouting "Hiya!" in her room in the dark more than once.
The pre schooler coughed a bit but then sensibly decided to go quiet again.
Almost two hours later I have had my snack and would quite like to try returning to bed now but am afraid to move in case any noise I make sets off the same chain of events again.
And you thought having cancer was all doom and gloom. It's like Piccadilly Circus on speed here!!!
Wednesday 28 August 2013
Saturday 24 August 2013
Placebo
This is really weird. No nausea and no real side effects are happening yet at all.
Even checked with my friend's daughter (a nurse) earlier that I would definitely have had to sign something if I was volunteering for a possible random placebo trial. It's ok, she said I would know if I had.
I can only assume that it is the more than four times the normal dose of steroids that goes with this regime that is carrying me through so far. Anything that reduces the number of days of usual crappy first week side effects is good with me.
Had post chemo injection at hospital today. Nurse asked me again if I'd like to learn to do it myself. Said no again.
Stayed at my friend's last night while mum had the kids. It was lovely, so relaxing. Being at home with the kids is good but it can feel a lot like an unrelenting relay race sometimes. No sooner have you come out the shower, you can hear your other half hovering anxiously at the bottom of the stairs all the while you're getting dressed just poised for you to come down and "grab the baton" and start metaphorically sprinting around the childcare arena again so that he can move on to the next thing he has in his list of tasks, and vice versa, and repeat...
I'm sure lots of people know that feeling, it's not exclusive to us. But I hope my current situation will inspire my family and me to examine how everyone's interests, plans and expectations can be balanced home here without sinking to the relay race effect. I'm no expert, this is no earth shaking revelation and I'm certainly not proficient in this technique in real life myself (YET...) but I think communication has to be the key.
Even checked with my friend's daughter (a nurse) earlier that I would definitely have had to sign something if I was volunteering for a possible random placebo trial. It's ok, she said I would know if I had.
I can only assume that it is the more than four times the normal dose of steroids that goes with this regime that is carrying me through so far. Anything that reduces the number of days of usual crappy first week side effects is good with me.
Had post chemo injection at hospital today. Nurse asked me again if I'd like to learn to do it myself. Said no again.
Stayed at my friend's last night while mum had the kids. It was lovely, so relaxing. Being at home with the kids is good but it can feel a lot like an unrelenting relay race sometimes. No sooner have you come out the shower, you can hear your other half hovering anxiously at the bottom of the stairs all the while you're getting dressed just poised for you to come down and "grab the baton" and start metaphorically sprinting around the childcare arena again so that he can move on to the next thing he has in his list of tasks, and vice versa, and repeat...
I'm sure lots of people know that feeling, it's not exclusive to us. But I hope my current situation will inspire my family and me to examine how everyone's interests, plans and expectations can be balanced home here without sinking to the relay race effect. I'm no expert, this is no earth shaking revelation and I'm certainly not proficient in this technique in real life myself (YET...) but I think communication has to be the key.
Friday 23 August 2013
Survived Fourth Chemo
Went to hospital for fourth Chemo today. Got the needle and line plumbed in then the nurse gave me ondansetron (anti sickness) then piriton which added to the steroids is supposed to further prevent allergic reaction.
She told me that the usual dose of Piriton from the chemist was 4mg and that they warn it may make you drowsy. She was about to stick me with 10mg direct in to the vena cava via the jugular vein, so she had some concerns about me possibly driving afterwards.
Luckily my sister had already decided that morning that she would chaffeur me given that we didn't know what the new drugs would be like. So she was right.
The nurse also warned that I might fall asleep. I was determined that this would not happen on my first occasion of being left on my own in the public chair section of the Unit! I have never been able to sleep upright in chairs anyway.
The nurse starts the Docetaxel drip and I have my first go at wheeling the drip stand affair across the room. It was easier than I thought. I was set up in my reclining chair and started watching the machine count down the hour it would take for the bag to drip through. Got bored of that with 53 minutes still left so Helen took the opportunity to take complete advantage of my drugged up state by beating me at Monopoly for the first time in her life.
I didn't even know when it was my go. I might not even have had all my goes. I demand a re-match.
Of course one would think that the steroids might have helped with this, however I have established something else about them. Upon asking the nurse why I still didn't feel like training hard at the gym or doing excessive athletics she reminded me that there were different types of steroids and I then recalled that the steroids I am on are corticosteroids whereas the ones the naughty athletes (allegedly) take are anabolic steroids. So I want a refund on my ones now.
Anyway back to important stuff, I didn't have a drastic allergic reaction and I am still here. The side effects have not kicked in yet. Whatever happens I have been glad to see the back of FEC as the effects of that were becoming cumulative. The nurse thinks that I should avoid sinus pain getting worse again this time as that is mainly a characteristic of FEC, so fingers crossed. I also found out that the joint pain if I get it may only last 72 hours, not the entire three week cycle as I feared. So it's all good, but who knows what will come later on this evening...!
She told me that the usual dose of Piriton from the chemist was 4mg and that they warn it may make you drowsy. She was about to stick me with 10mg direct in to the vena cava via the jugular vein, so she had some concerns about me possibly driving afterwards.
Luckily my sister had already decided that morning that she would chaffeur me given that we didn't know what the new drugs would be like. So she was right.
The nurse also warned that I might fall asleep. I was determined that this would not happen on my first occasion of being left on my own in the public chair section of the Unit! I have never been able to sleep upright in chairs anyway.
The nurse starts the Docetaxel drip and I have my first go at wheeling the drip stand affair across the room. It was easier than I thought. I was set up in my reclining chair and started watching the machine count down the hour it would take for the bag to drip through. Got bored of that with 53 minutes still left so Helen took the opportunity to take complete advantage of my drugged up state by beating me at Monopoly for the first time in her life.
I didn't even know when it was my go. I might not even have had all my goes. I demand a re-match.
Of course one would think that the steroids might have helped with this, however I have established something else about them. Upon asking the nurse why I still didn't feel like training hard at the gym or doing excessive athletics she reminded me that there were different types of steroids and I then recalled that the steroids I am on are corticosteroids whereas the ones the naughty athletes (allegedly) take are anabolic steroids. So I want a refund on my ones now.
Anyway back to important stuff, I didn't have a drastic allergic reaction and I am still here. The side effects have not kicked in yet. Whatever happens I have been glad to see the back of FEC as the effects of that were becoming cumulative. The nurse thinks that I should avoid sinus pain getting worse again this time as that is mainly a characteristic of FEC, so fingers crossed. I also found out that the joint pain if I get it may only last 72 hours, not the entire three week cycle as I feared. So it's all good, but who knows what will come later on this evening...!
Thursday 22 August 2013
Help on the [Oncology] checkouts, please!
Went to see the Oncologist last Friday. I go there every three weeks. I see a different person every time. The person I see gets younger every time. It's a bit like going to the co-op, really!
They've started to get a rather apprehensive look on their face recently too, that sort of "don't ask a complicated question" face. I have decided that this is because head honcho Oncology Consultant is off on his holidays at the moment and his staff know that if it came down to it, they don't really know what the answer to a complicated question will be. We've all got to learn somehow, though so can't hold that against them. I expect their boss deploys the line "it will be good experience for you", too.
The chap I saw was very nice. He prescribed me pre chemo steroids which are compulsory for the next drug I am starting. Then he said that along with all the other side effects I have already been at risk of, Docetaxel comes with a possibility of joint aches and pains. He asked me if I wanted him to prescribe Co-Codamol as well.
What annoying sarcastic me felt like saying was: "No mate, don't bother prescribing me pharmacy strength Co-Codamol which will be completely free of charge, I will wait and see what happens and then if the worst occurs I will go to the chemist and use my own money to pay for lesser strength over the counter stuff."
What actual timid don't-upset-anyone-or-they-will-spit-in-your-cytotoxic-drugs me replied was "Oh, yes please, thank you!".
Finally, access to the good stuff. I am now packing 60 Co-Codamol and I'm not afraid to use them.
Went to hospital for the pre chemo blood test on Wednesday. Nurse complimented me again on my port - it's a "beauty" apparently.
Had some time to kill before that appointment so I went up to the Breast Care Unit to chase up some other dates I'd been waiting for. Luckily the reception area was not too busy for other patients' sake as I had forgotten the effect that seeing an obvious cancer patient with a headscarf swanning in has upon the poor ladies waiting for their routine mammograms! Of course I wouldn't know as I've never been in the situation of being called in for a routine mammogram. All my BCU appointments have been accompanied by a vague sense of dread. Looks of trepidation all round in reception - oops.
So first Docetaxel tomorrow. My sister is bringing me a Maccy D's brekkie to eat when I take my mental dose of steroids beforehand.
They've started to get a rather apprehensive look on their face recently too, that sort of "don't ask a complicated question" face. I have decided that this is because head honcho Oncology Consultant is off on his holidays at the moment and his staff know that if it came down to it, they don't really know what the answer to a complicated question will be. We've all got to learn somehow, though so can't hold that against them. I expect their boss deploys the line "it will be good experience for you", too.
The chap I saw was very nice. He prescribed me pre chemo steroids which are compulsory for the next drug I am starting. Then he said that along with all the other side effects I have already been at risk of, Docetaxel comes with a possibility of joint aches and pains. He asked me if I wanted him to prescribe Co-Codamol as well.
What annoying sarcastic me felt like saying was: "No mate, don't bother prescribing me pharmacy strength Co-Codamol which will be completely free of charge, I will wait and see what happens and then if the worst occurs I will go to the chemist and use my own money to pay for lesser strength over the counter stuff."
What actual timid don't-upset-anyone-or-they-will-spit-in-your-cytotoxic-drugs me replied was "Oh, yes please, thank you!".
Finally, access to the good stuff. I am now packing 60 Co-Codamol and I'm not afraid to use them.
Went to hospital for the pre chemo blood test on Wednesday. Nurse complimented me again on my port - it's a "beauty" apparently.
Had some time to kill before that appointment so I went up to the Breast Care Unit to chase up some other dates I'd been waiting for. Luckily the reception area was not too busy for other patients' sake as I had forgotten the effect that seeing an obvious cancer patient with a headscarf swanning in has upon the poor ladies waiting for their routine mammograms! Of course I wouldn't know as I've never been in the situation of being called in for a routine mammogram. All my BCU appointments have been accompanied by a vague sense of dread. Looks of trepidation all round in reception - oops.
So first Docetaxel tomorrow. My sister is bringing me a Maccy D's brekkie to eat when I take my mental dose of steroids beforehand.
Friday 9 August 2013
Assets
The seemingly never ending nausea is finally starting to dissipate now. I still have annoying sinus pain, if anyone is interested...
Quite glad to be seeing the back of FEC after three cycles given that the side effects have been worsening and going on longer each time.
Next time we move on to Docetaxel. Sounds like "docile", so benign and welcoming (??!). I'm sure it absolutely isn't, but at least I can hold out the hope that sinus pain will not be one of its pet side effects.
One of the components of FEC gave me a head freeze as soon as the nurse put it in me so fingers crossed it is that one causing the sinus business and that this side effect might therefore now eliminate itself.
Putting that to one side and moving on to the next set of concerns, then. The first is that I might die of an allergic reaction to Docetaxel. Now I didn't really think about this with FEC. I think what has set me off on this thought path is the fact that they make you take steroids before you even have the Docetaxel and I think this is to try and minimise the possibility of a reaction.
I can't change the prescribed drug though and I wouldn't want to because that is the course of treatment that has been chosen for me for a reason, so insert text of Serenity Prayer here, and let's move on.
The second is the internal debate of whether to bother painting my nails a dark colour. Now I don't usually do this as a) it stains the nails and b) if they have nail varnish on for too long it affects their condition. But there is a school of thought that suggests that the effects that Docetaxel can have on one's nails are caused by UV light and that if you can stop the light from getting to them by painting them dark then they are less likely to be affected. But would I want to risk covering my nails in polish for some two months, stopping the air from getting to them and having them deteriorate anyway as a result of doing that?
Strange that I am putting more thought in to this nail business than I did about the hair situation. Actually not that strange, given that my hair was massively unimpressive whereas my natural nails are f**king fabulous, even though I do say so myself. I had a manicure in one of those really busy places staffed by Chinese people and even one of the girls there said it wasn't often that they see natural nails like mine. Praise indeed.
So I am now facing the risk of losing one of my major assets. What to do, what to do?
#cancerdilemmasofthemoderngirl
Quite glad to be seeing the back of FEC after three cycles given that the side effects have been worsening and going on longer each time.
Next time we move on to Docetaxel. Sounds like "docile", so benign and welcoming (??!). I'm sure it absolutely isn't, but at least I can hold out the hope that sinus pain will not be one of its pet side effects.
One of the components of FEC gave me a head freeze as soon as the nurse put it in me so fingers crossed it is that one causing the sinus business and that this side effect might therefore now eliminate itself.
Putting that to one side and moving on to the next set of concerns, then. The first is that I might die of an allergic reaction to Docetaxel. Now I didn't really think about this with FEC. I think what has set me off on this thought path is the fact that they make you take steroids before you even have the Docetaxel and I think this is to try and minimise the possibility of a reaction.
I can't change the prescribed drug though and I wouldn't want to because that is the course of treatment that has been chosen for me for a reason, so insert text of Serenity Prayer here, and let's move on.
The second is the internal debate of whether to bother painting my nails a dark colour. Now I don't usually do this as a) it stains the nails and b) if they have nail varnish on for too long it affects their condition. But there is a school of thought that suggests that the effects that Docetaxel can have on one's nails are caused by UV light and that if you can stop the light from getting to them by painting them dark then they are less likely to be affected. But would I want to risk covering my nails in polish for some two months, stopping the air from getting to them and having them deteriorate anyway as a result of doing that?
Strange that I am putting more thought in to this nail business than I did about the hair situation. Actually not that strange, given that my hair was massively unimpressive whereas my natural nails are f**king fabulous, even though I do say so myself. I had a manicure in one of those really busy places staffed by Chinese people and even one of the girls there said it wasn't often that they see natural nails like mine. Praise indeed.
So I am now facing the risk of losing one of my major assets. What to do, what to do?
#cancerdilemmasofthemoderngirl
Sunday 4 August 2013
Blog updates ad nauseam? Excuse the pun...
This blog entry is for my brother-in-law who came to visit from London this weekend with several of his friends, all of whom were lovely chaps.
He asked me if I was going to put up another blog update. Now, I haven't had any hospital appointments today and I haven't got any planned until 16th August.
Given that my blog kind of revolves around these exciting hospital trips out, I'm not entirely sure what to write about.
Today I was awake at 7 ish when the kids got up. Mulled over the usual dilemmas and questions about life -
1. Am I drinking enough fluids?
2. Shall I bother taking the steroids today?
3. When will my skin stop smelling of chemo chemicals? This is not quite as bad as the rusty-gate-excessive-iron smell but I can still notice it.
4. Is it actually the steroids making me feel sick, or the sheer amount of fluid I am expected to force in to my body. 2 to 3 litres a day, WTF?
Dan and me pottered around and fielded kids' requests until 11.30 then I thought I'd better have a bath. Had the bath then required a lie down afterwards before actually getting dressed.
Low level but irritating nausea ongoing throughout the above described processes.
Had a wobble about going out to the restaurant this afternoon but felt better after getting dressed. Took the kids to my mum's (thanks mum) and then proceeded to collect the outlaws and drive on to the restaurant where we met up with my brother in law and his friends.
Really glad I went as I managed to drink a pint of orange juice and lemonade plus a coffee, thus staving off the "fluid intake guilt" for a while. Also ate a massive carvery. Remember, this nausea is like a hangover, it needs to be fed.
Listened to the MIL's stories about knowing Mick Jagger in her schooldays before he was famous and how she would love to go up to him and remind him about it if she ever saw him now. Made obligatory joke about Injunctions being available for that sort of conduct.
But the best bit was discovering that one of my brother in law's visiting friends had a small part in the film Snatch. He played a pikey and he showed us all a promo picture of himself stood next to Brad Pitt!
The other thing that happened was my dear husband telling me last night that he still loves me even though I am "faulty". I'm actually rather flattered - I always knew he was a "keeper".
He asked me if I was going to put up another blog update. Now, I haven't had any hospital appointments today and I haven't got any planned until 16th August.
Given that my blog kind of revolves around these exciting hospital trips out, I'm not entirely sure what to write about.
Today I was awake at 7 ish when the kids got up. Mulled over the usual dilemmas and questions about life -
1. Am I drinking enough fluids?
2. Shall I bother taking the steroids today?
3. When will my skin stop smelling of chemo chemicals? This is not quite as bad as the rusty-gate-excessive-iron smell but I can still notice it.
4. Is it actually the steroids making me feel sick, or the sheer amount of fluid I am expected to force in to my body. 2 to 3 litres a day, WTF?
Dan and me pottered around and fielded kids' requests until 11.30 then I thought I'd better have a bath. Had the bath then required a lie down afterwards before actually getting dressed.
Low level but irritating nausea ongoing throughout the above described processes.
Had a wobble about going out to the restaurant this afternoon but felt better after getting dressed. Took the kids to my mum's (thanks mum) and then proceeded to collect the outlaws and drive on to the restaurant where we met up with my brother in law and his friends.
Really glad I went as I managed to drink a pint of orange juice and lemonade plus a coffee, thus staving off the "fluid intake guilt" for a while. Also ate a massive carvery. Remember, this nausea is like a hangover, it needs to be fed.
Listened to the MIL's stories about knowing Mick Jagger in her schooldays before he was famous and how she would love to go up to him and remind him about it if she ever saw him now. Made obligatory joke about Injunctions being available for that sort of conduct.
But the best bit was discovering that one of my brother in law's visiting friends had a small part in the film Snatch. He played a pikey and he showed us all a promo picture of himself stood next to Brad Pitt!
The other thing that happened was my dear husband telling me last night that he still loves me even though I am "faulty". I'm actually rather flattered - I always knew he was a "keeper".
Saturday 3 August 2013
Holiday Embargo
Getting kind of bored of not being able to plan anything now. I thought it was difficult before with our house extension project dominating every weekend but cancer is a completely different ball game.
I hope to finish my chemo in early October and then be over the side effects by the end of that month. Book a holiday after that, one would think. However, getting an infection between now and then could mean that the schedule slides completely so that can't be relied upon.
Once chemo is finished I will be packed off back to the Breast Care Unit to get a date for my next surgery. Following that there will be another prolonged period of no lifting. Book a holiday during my recovery period? Yes but that would hardly represent any sort of holiday for my husband then unless a nanny was also supplied for tantrum calming and general junk hauling purposes.
Once I have recovered acceptably from surgery I will boomerang back to Oncology for radiotherapy treatment. I imagine that goes on for several weeks. Every day.
Add to that the wait for my genetic testing results plus probable further surgery to remove unnecessary and redundant reproductive organs (my personal plan, hopefully to be sanctioned by the NHS but will go ahead privately if not, only question being when to fit this in...) and I don't see anything except a very short very last minute holiday being a realistic prospect until next year!
Anyway, enough moaning about that, I am supposed to be moaning about the side effects from yesterday's chemo. Nausea, nausea and more nausea. In two minds whether to take the steroid dose with my breakfast today or not. I've been awake since 4.30am so I've had ample time to mull this over. No decision as yet.
Trundling off to the hospital at 3.00 today for my G-CSF injection. Seems to be working well each time so far, touch wood, or maybe I have just been lucky enough not to contract any infections in the first place. Asked about my blood results yesterday - all fine, just slightly "anaemic". I caught a glimpse of the figures and my hb (haemoglobin??) levels were 10 ish. That is normal for me! I think I do simply exist in a constant state of mild anaemia.
Told the nurse my hilarious anecdote of the midwives panicking about this during my first pregnancy and putting me on to iron supplements. Well that lasted five days before I abandoned it completely once my body emphatically confirmed that extra iron was not required thank you very much and started to process and excrete the excess levels out through my skin, giving me and my clothes the very unpleasant smell of a rusty iron gate. One of my dry clean only suit jackets never recovered from this.
I hope to finish my chemo in early October and then be over the side effects by the end of that month. Book a holiday after that, one would think. However, getting an infection between now and then could mean that the schedule slides completely so that can't be relied upon.
Once chemo is finished I will be packed off back to the Breast Care Unit to get a date for my next surgery. Following that there will be another prolonged period of no lifting. Book a holiday during my recovery period? Yes but that would hardly represent any sort of holiday for my husband then unless a nanny was also supplied for tantrum calming and general junk hauling purposes.
Once I have recovered acceptably from surgery I will boomerang back to Oncology for radiotherapy treatment. I imagine that goes on for several weeks. Every day.
Add to that the wait for my genetic testing results plus probable further surgery to remove unnecessary and redundant reproductive organs (my personal plan, hopefully to be sanctioned by the NHS but will go ahead privately if not, only question being when to fit this in...) and I don't see anything except a very short very last minute holiday being a realistic prospect until next year!
Anyway, enough moaning about that, I am supposed to be moaning about the side effects from yesterday's chemo. Nausea, nausea and more nausea. In two minds whether to take the steroid dose with my breakfast today or not. I've been awake since 4.30am so I've had ample time to mull this over. No decision as yet.
Trundling off to the hospital at 3.00 today for my G-CSF injection. Seems to be working well each time so far, touch wood, or maybe I have just been lucky enough not to contract any infections in the first place. Asked about my blood results yesterday - all fine, just slightly "anaemic". I caught a glimpse of the figures and my hb (haemoglobin??) levels were 10 ish. That is normal for me! I think I do simply exist in a constant state of mild anaemia.
Told the nurse my hilarious anecdote of the midwives panicking about this during my first pregnancy and putting me on to iron supplements. Well that lasted five days before I abandoned it completely once my body emphatically confirmed that extra iron was not required thank you very much and started to process and excrete the excess levels out through my skin, giving me and my clothes the very unpleasant smell of a rusty iron gate. One of my dry clean only suit jackets never recovered from this.
Thursday 1 August 2013
Blood letting and bonding
Went to the hospital for pre chemo bloods yesterday. Met a very personable nurse.
He got his little pillow out as he had obviously noticed that I had no PICC line in my arm. I didn't catch on to what he was doing at first but when I realised I was like "oh, no need for that, I have a port!". Whipped my top off quicker than a page 3 model - it's okay, I had a vest top on underneath too, didn't want to traumatise the poor chap at our first meeting.
He "accessed the port" (cue Star Trek theme toon again) and commented that they'd got a good vein there, presumably meaning one that blood actually freely flows from as opposed to the ones in my arms which have been so ineffective in the past they might as well not be there. Heard about a lady recently whose port became blocked. Now petrified that might happen to me one day and they might have to take it out and use alternative methods. Please don't let me be that unlucky. It's all character building, it's all character building, repeat ad infinitum...
Then we had a good old chat about what I do for a living, my fear of needles, his own personal big fear of having actual surgery, how brave he thinks cancer patients are - we really made the most of our actually quite short appointment!
When I was leaving he said it was nice to have met me. Fluffiness and feel good factor at the chemo unit, who'd have thunk it?!
He got his little pillow out as he had obviously noticed that I had no PICC line in my arm. I didn't catch on to what he was doing at first but when I realised I was like "oh, no need for that, I have a port!". Whipped my top off quicker than a page 3 model - it's okay, I had a vest top on underneath too, didn't want to traumatise the poor chap at our first meeting.
He "accessed the port" (cue Star Trek theme toon again) and commented that they'd got a good vein there, presumably meaning one that blood actually freely flows from as opposed to the ones in my arms which have been so ineffective in the past they might as well not be there. Heard about a lady recently whose port became blocked. Now petrified that might happen to me one day and they might have to take it out and use alternative methods. Please don't let me be that unlucky. It's all character building, it's all character building, repeat ad infinitum...
Then we had a good old chat about what I do for a living, my fear of needles, his own personal big fear of having actual surgery, how brave he thinks cancer patients are - we really made the most of our actually quite short appointment!
When I was leaving he said it was nice to have met me. Fluffiness and feel good factor at the chemo unit, who'd have thunk it?!
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