Monday is almost free of medical appointments (Zoladex jab - I made the mistake of looking at the needle and discovering it is really rather large) and it is also half term. After a weekend of DS being a horrible two year old (everything is "NO!"), TN is back to put things on an even keel.
The four of us have a lovely day, carving pumpkins, making Halloween decorations and biscuits and making the Christmas cake. Gloriously domestic and reassuringly normal. Another boost I badly needed after last week and good for the children to see Mummy being, well, Mummy for a little while.
Tuesday, 30 October 2012
Unexpected bonuses
The bonuses of the delay to cycle 2 are:
1) The portacath can go in
2) I have a prescription to sit down and rest
3) My taste for sweet things and wine has returned! Won't help with the weight, but helps with the head a bit...
1) The portacath can go in
2) I have a prescription to sit down and rest
3) My taste for sweet things and wine has returned! Won't help with the weight, but helps with the head a bit...
Plug and play
Immediately after the reflexologist comes the consultation with the radiologist, so back to hospital it is.
There's some suggestion that Tuesday's theatre slot, around which we have rearranged everything including my next Zoladex injection (not an easy task, had to play the chemo patient card for that one which I don't like doing but thank goodness it works and thank goodness it exists), may not be available. This renders DH, already grumpy about something completely unrelated, absolutely furious and leaves him making all sorts of super assertive noises about not putting up with this. I tell him to hold on until we know there's a problem.
He then further blots his copybook by answering for me every question the consultant asks. I have cancer, I am neither mute nor stupid as a result (although the drugs are messing with my memory. Well, that's my story and I'm sticking to it) so when the consultant pops out for a second I tell him to calm down and keep quiet unless I do miss something out.
The procedure seems both routine and straightforward, and they do it under sedation. This will be rather heavier than that for the colonoscopy; frankly I'm not too bothered as long as there's no Picolax involved. The portacath itself is bigger than I expected, being about the size of a ten pence piece around and about a centimetre deep. It's titanium, so fine with imaging machinery and airport scanners. It's also pink. I'm tempted to ask what other colours they have.
My line on the surgery - we have rearranged everything around a Tuesday date so please can we go with that - works and the date is duly confirmed. So no more hand cannulas for the rest of my treatment. This also cheers me up; I hadn't realised how much the cannulas were bothering me and had been bothering me since the CT scan.
There's some suggestion that Tuesday's theatre slot, around which we have rearranged everything including my next Zoladex injection (not an easy task, had to play the chemo patient card for that one which I don't like doing but thank goodness it works and thank goodness it exists), may not be available. This renders DH, already grumpy about something completely unrelated, absolutely furious and leaves him making all sorts of super assertive noises about not putting up with this. I tell him to hold on until we know there's a problem.
He then further blots his copybook by answering for me every question the consultant asks. I have cancer, I am neither mute nor stupid as a result (although the drugs are messing with my memory. Well, that's my story and I'm sticking to it) so when the consultant pops out for a second I tell him to calm down and keep quiet unless I do miss something out.
The procedure seems both routine and straightforward, and they do it under sedation. This will be rather heavier than that for the colonoscopy; frankly I'm not too bothered as long as there's no Picolax involved. The portacath itself is bigger than I expected, being about the size of a ten pence piece around and about a centimetre deep. It's titanium, so fine with imaging machinery and airport scanners. It's also pink. I'm tempted to ask what other colours they have.
My line on the surgery - we have rearranged everything around a Tuesday date so please can we go with that - works and the date is duly confirmed. So no more hand cannulas for the rest of my treatment. This also cheers me up; I hadn't realised how much the cannulas were bothering me and had been bothering me since the CT scan.
Reflexology
I had already booked the reflexologist for Friday afternoon, in the hope of helping my system cope with the immediate aftermath of cycle 2. Given the low neutrophil count, I reckon my system could still do with a boost and mentally I certainly could, so I go anyway.
The reflexologist is actually an old family friend who happens to live not far away. My parents act as the taxi as although I can drive myself the appointment had been arranged on the basis that I wouldn't be able to, and I reckoned Mum and Dad would like the chance of a catch up with her husband whilst she works her magic.
I have pretty clear lines when it comes to alternative medicine. Some is proven to work, or at least has some basis in reality and no negative side effects. Into this category fall acupuncture and reflexology, both of which I've had and both of which have worked for me before. Some therapies are just too "out there" for me and make no logical sense, such as reiki and crystal therapy. They work for some people, but they're a leap too far for me. Normally I'd go for acupuncture but frankly I've had enough of needles and all the practitioners I know are in London. I had reflexology when I was pregnant with DD, who was overdue and making me grumpy, and the reflexologist (same lady) pressed on a particular area of my foot, pointed out the swelling there and stated that that area was connected to my uterus. I was sceptical, until after DD was born when that swelling, which was very localised so not swollen pregnant lady ankles, disappeared. Proof enough for me, and anyway I like a nice foot massage.
She is gentle and soothing, yet still manages to tick me off for not resting enough! For 45 minutes she works on my feet, declaring that most of my organs seem to be ok and taking the time to give my kidneys and spleen a boost. She also picks up on issues with my sciatic nerve, which relate to poor posture when carrying my giant son (that classic sticking out of the hip to rest your baby on it is not, surprise surprise, any good for your back) that then causes problems in my calf when I run. I hadn't mentioned that to her at all, nor the upper back and neck tension I've been experiencing because of poor posture post-surgery owing to compromised core muscles and an old rugby injury that she also picks up on.
Interestingly she tells me to check the ingredients of the fruit tea I've been drinking as an alternative to regular tea, as I thought the fruit tea would be more hydrating. Apparently lots of them contain hibiscus, which can cause stomach cramps. When I get home and check, she's right. All of them do. More water, less tea then. Her other nutritional advice is lots of anti-oxidants.
When she has finished I feel much better mentally, and generally boosted. Even if nothing else happens, the mental boost is worth it. I hadn't realised quite how down I'd become until it lifted a bit.
The reflexologist is actually an old family friend who happens to live not far away. My parents act as the taxi as although I can drive myself the appointment had been arranged on the basis that I wouldn't be able to, and I reckoned Mum and Dad would like the chance of a catch up with her husband whilst she works her magic.
I have pretty clear lines when it comes to alternative medicine. Some is proven to work, or at least has some basis in reality and no negative side effects. Into this category fall acupuncture and reflexology, both of which I've had and both of which have worked for me before. Some therapies are just too "out there" for me and make no logical sense, such as reiki and crystal therapy. They work for some people, but they're a leap too far for me. Normally I'd go for acupuncture but frankly I've had enough of needles and all the practitioners I know are in London. I had reflexology when I was pregnant with DD, who was overdue and making me grumpy, and the reflexologist (same lady) pressed on a particular area of my foot, pointed out the swelling there and stated that that area was connected to my uterus. I was sceptical, until after DD was born when that swelling, which was very localised so not swollen pregnant lady ankles, disappeared. Proof enough for me, and anyway I like a nice foot massage.
She is gentle and soothing, yet still manages to tick me off for not resting enough! For 45 minutes she works on my feet, declaring that most of my organs seem to be ok and taking the time to give my kidneys and spleen a boost. She also picks up on issues with my sciatic nerve, which relate to poor posture when carrying my giant son (that classic sticking out of the hip to rest your baby on it is not, surprise surprise, any good for your back) that then causes problems in my calf when I run. I hadn't mentioned that to her at all, nor the upper back and neck tension I've been experiencing because of poor posture post-surgery owing to compromised core muscles and an old rugby injury that she also picks up on.
Interestingly she tells me to check the ingredients of the fruit tea I've been drinking as an alternative to regular tea, as I thought the fruit tea would be more hydrating. Apparently lots of them contain hibiscus, which can cause stomach cramps. When I get home and check, she's right. All of them do. More water, less tea then. Her other nutritional advice is lots of anti-oxidants.
When she has finished I feel much better mentally, and generally boosted. Even if nothing else happens, the mental boost is worth it. I hadn't realised quite how down I'd become until it lifted a bit.
Thursday, 25 October 2012
Snakes and ladders
And I just hit a snake.
Thursdays are always chaos in this house as commutes and school run and breakfast all collide with the cleaner coming in. This morning was worse as DD woke up last night with a temperature and was still suffering when she woke, so no school run, no activities for DS and DH at home to take me to hospital, which all adds up to a lot of people under foot by 8.30.
Despite this, DH and I make good time and arrive early. The room is stiflingly hot and right next to a building site, but at least has more natural light than last time. There's a weight check and blood pressure check and I am not particularly pleased to find that I've put on half a kilo since my last weigh in. According to the HCA who is doing the checks, some people lose weight and some put it on. Neither is in my plan - given that exercise seems to be a non-starter for me I guess that means a bit more diet control. However, all is within tolerance for chemo so we wait for someone to come and take the bloods.
One of the staff nurses, who I recognise from last time, comes to see me. She asks how I've been and I tell her about the side effects, all of which she indicates are perfectly normal. She puts the cannula in my right hand but seems to struggle to get blood out of it; even once it is flowing properly she finds flushing it afterwards tricky. Finally satisfied, she takes the blood off to the lab.
DH and I sit at opposite sides of the room, not really talking but playing on our respective phones. I read an Internet forum in an attempt to distract myself, but half of me is drifting off to sleep as the room is so warm. My lunch order is taken and coffee is brought - one thing the rest week has done is restore my taste for sweet things, coffee and wine. But nothing much punctures the minutes as the clock ticks on towards midday.
At 11.45 the staff nurse comes back. My neutrophil level - part of the white blood cell count - is 1.4 and the chemotherapy protocol requires that it be at least 2. No chemo today. The staff nurse pats my knee and says she will go and see what the arrangements are for fitting my deep vein line. When she has gone I have a proper cry. It's partly frustration at a set back at this early point and partly fury that next week's arrangements to go away are now completely messed up. It's also quite a lot of despair. How can I get over this, get on with my life, if I can't even get through one cycle of chemo?
DH is determined to be chipper about it all and tells me, in so many words, to pull myself together. I tell him I want to wallow in it for a bit and that frankly I'm allowed to. We go and have a nice lunch and do a couple of chores, including picking up our latest animation cell acquisition from the framers. The cell looks gorgeous and that at least cheers me up a bit, as does going and playing on all the motorbikes in the showroom whilst DH sorts out something with his bike.
But when I get home I'm shattered. Drained out behind the eyes. I make the calls I have to make to rejig the diary for the next few days then give up and go and sit on the sofa and watch telly with my children.
Thursdays are always chaos in this house as commutes and school run and breakfast all collide with the cleaner coming in. This morning was worse as DD woke up last night with a temperature and was still suffering when she woke, so no school run, no activities for DS and DH at home to take me to hospital, which all adds up to a lot of people under foot by 8.30.
Despite this, DH and I make good time and arrive early. The room is stiflingly hot and right next to a building site, but at least has more natural light than last time. There's a weight check and blood pressure check and I am not particularly pleased to find that I've put on half a kilo since my last weigh in. According to the HCA who is doing the checks, some people lose weight and some put it on. Neither is in my plan - given that exercise seems to be a non-starter for me I guess that means a bit more diet control. However, all is within tolerance for chemo so we wait for someone to come and take the bloods.
One of the staff nurses, who I recognise from last time, comes to see me. She asks how I've been and I tell her about the side effects, all of which she indicates are perfectly normal. She puts the cannula in my right hand but seems to struggle to get blood out of it; even once it is flowing properly she finds flushing it afterwards tricky. Finally satisfied, she takes the blood off to the lab.
DH and I sit at opposite sides of the room, not really talking but playing on our respective phones. I read an Internet forum in an attempt to distract myself, but half of me is drifting off to sleep as the room is so warm. My lunch order is taken and coffee is brought - one thing the rest week has done is restore my taste for sweet things, coffee and wine. But nothing much punctures the minutes as the clock ticks on towards midday.
At 11.45 the staff nurse comes back. My neutrophil level - part of the white blood cell count - is 1.4 and the chemotherapy protocol requires that it be at least 2. No chemo today. The staff nurse pats my knee and says she will go and see what the arrangements are for fitting my deep vein line. When she has gone I have a proper cry. It's partly frustration at a set back at this early point and partly fury that next week's arrangements to go away are now completely messed up. It's also quite a lot of despair. How can I get over this, get on with my life, if I can't even get through one cycle of chemo?
DH is determined to be chipper about it all and tells me, in so many words, to pull myself together. I tell him I want to wallow in it for a bit and that frankly I'm allowed to. We go and have a nice lunch and do a couple of chores, including picking up our latest animation cell acquisition from the framers. The cell looks gorgeous and that at least cheers me up a bit, as does going and playing on all the motorbikes in the showroom whilst DH sorts out something with his bike.
But when I get home I'm shattered. Drained out behind the eyes. I make the calls I have to make to rejig the diary for the next few days then give up and go and sit on the sofa and watch telly with my children.
Tuesday, 23 October 2012
A doctor calls
Tuesday evening and TN is just putting the children to bed whilst I idle around downstairs (gathering strength to put them to bed - I might be able to lift DS but that doesn't make him any easier to persuade to get into bed, particularly now we have taken the side off his cot so he is in a Big Boy Bed from which, unfortunately, he can escape) when the phone rings. It's the oncologist. She will be on holiday on Thursday so she wants to talk about the side effects I have been experiencing. I know she's busy, especially if she's ringing round all her patients, so I keep it to the key concerns that I was going to raise with her anyway.
Chief amongst these is the effect the iv had on my left hand. Two and a half weeks later and my hand is still feeling bruised. She surprises me by not suggesting what I thought she would suggest - turning the drip down - but rather that we put in a deep vein line, either a PICC or a portacath. Apparently she has been receiving more reports of this problem with oxaliplatin, and putting it into a bigger vein seems to help. The procedure is done under sedation; sadly it won't be for this time round but it will be for round three. Somehow talking to her makes me feel more positive again. She's on my side and understands. Not that lots of people aren't on my side - far from it - but she can fix stuff.
Chief amongst these is the effect the iv had on my left hand. Two and a half weeks later and my hand is still feeling bruised. She surprises me by not suggesting what I thought she would suggest - turning the drip down - but rather that we put in a deep vein line, either a PICC or a portacath. Apparently she has been receiving more reports of this problem with oxaliplatin, and putting it into a bigger vein seems to help. The procedure is done under sedation; sadly it won't be for this time round but it will be for round three. Somehow talking to her makes me feel more positive again. She's on my side and understands. Not that lots of people aren't on my side - far from it - but she can fix stuff.
Cycle two approaches
As cycle two approaches, my mood isn't getting better. I feel oddly bereft when I have no drugs to take in the rest week and I feel exhausted. At a guess, it's my body trying to recover from the two week assault but it is pulling my mood down as well. DH is working hard and late, and by the time he gets back I am too tired for much of anything so I'm in bed. I don't really want to grumble to him, anyway - it's not what he needs and it is only grumbling, I know I'll pick up.
I have been out and about and whilst that doesn't help with the tiredness it does help with the mood. A couple of nice lunches with old and good friends, who I can give the potted update to and then talk about rubbish and mindless gossip and things that can happen when all this is done. I also went to the hairdresser and, following the advice of the Macmillan nurse, got my long hair chopped short. It turned out that my hairdresser, who I've been seeing for years, has always wanted to cut my hair short and already had planned what he would do if the opportunity arose! Fingers crossed that will lessen the strain on the hair and less of it will break off. Although the Zoladex may have a similar effect - when I was pregnant I never shed much hair and never grew much either and my eyebrows don't seem to be growing as fast as usual so maybe the one will cancel out the other?
The sad thing was that my hairdresser, after he'd got over the shock of my news, said that he sees four women a year who are in the same position. That's one hairdresser in one salon in the middle of London. How wrong is that? How widespread is this shit?
I have been out and about and whilst that doesn't help with the tiredness it does help with the mood. A couple of nice lunches with old and good friends, who I can give the potted update to and then talk about rubbish and mindless gossip and things that can happen when all this is done. I also went to the hairdresser and, following the advice of the Macmillan nurse, got my long hair chopped short. It turned out that my hairdresser, who I've been seeing for years, has always wanted to cut my hair short and already had planned what he would do if the opportunity arose! Fingers crossed that will lessen the strain on the hair and less of it will break off. Although the Zoladex may have a similar effect - when I was pregnant I never shed much hair and never grew much either and my eyebrows don't seem to be growing as fast as usual so maybe the one will cancel out the other?
The sad thing was that my hairdresser, after he'd got over the shock of my news, said that he sees four women a year who are in the same position. That's one hairdresser in one salon in the middle of London. How wrong is that? How widespread is this shit?
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