Monday 19th December
I spent a pleasant morning at the hospital as I had 3 appointments, which were well scheduled in that I didn't have to rush hither and thither.
First was my heart echocardiogram. Once again the operator was behind me so I couldn't see the screen. The room is also quite gloomy, I suppose so the operator can see the screen better. Consequently the only thing to do is snooze. So half an hour later I'm all done and I proceed to my next appointment.
Second is the phlebotomy clinic, also known as the blood clinic. I still qualify for queue jumping which is really very handy. As per usual I warn the phlebotomist that she has her work cut out and that I usually have the needles they use on babies etc. How wrong was I! She says she can see a lovely big vein and uses a normal vacuum type needle. This is truly a milestone as it has been nearly a year since I have had my blood taken in this manner. Usually they have to use a syringe and literally pull the blood out of my arm. Clearly my veins are on the mend! Hooray!
Finally I go to see the delightful Dr. Denton, my oncologist. My appointment is scheduled for 11.30am I arrive at 10am. So I settle down with my newspapers and prepare for a longish, but anticipated wait. Whilst I wait only a couple of other patients are seen and each takes quite a long time. At a little before 11am she pops her head out of her room and says I should come in now as otherwise I'll still be there at lunch time. So we go through the usual questions of how I am getting on and if there is anything new or interesting to report. I'm getting on swimmingly and apart from the fact that my fingernails are disintegrating at an alarming rate everything else is tickety boo! I suspect that Dr. Denton quite likes me as a patient as I generally have little or nothing to report and am thus quick and straightforward.
Then off I go to the office, arriving there at the time I was scheduled to see Dr. Denton. Not a bad result overall.
Wednesday 21st December
The shortest day. Visit number 13. Only 5 left to go.
I arrive, as per usual, in plenty of time and get one of the electrically adjustable chairs, which I like even though, because they are quite high, I feel a bit like a three year old when sitting on them.
I am weighed and asked the usual questions regarding my breathing, heart, swelling etc.All of which are OK. I tell them that there are ECG and blood results to be had from Monday. All is well, in fact my heart percentage has gone up from 55% to 56%, and no I have no idea what that percentage measures exactly other than some kind of pumping rate/efficiency. In any event it is good. I should point out that I have done little or no exercise over the last few weeks, so clearly not doing stuff to boost your heart rate would appear to be a good thing for your pump efficiency. Then again I could be wrong!
The matron is my nurse of the day. She says that it is not necessary to immerse my arm in warm water. This is the first time I have not had to do this. She goes for the vein at the base of my thumb. It's not too bad but it is still bruised and although blood comes out the saline won't go in. So out comes the cannula and the search for another vein begins. I do have one stipulation and that is not the back of my hand. This is for two reasons, one it is one of the more painful places to stick a needle and two because they can only use my right hand it means that doing the crossword is really quite difficult. So lovely amenable person that she is she finds a location at the top of my forearm near my elbow. Now because she is the matron her time is always being called upon by doctors, nurses and all and sundry, so once the needle is in she disappears off to deal with a doctor. On her return she has to draw blood out and then push is back in to clear the cannula and vein before I can proceed with the various infusions of drugs. The rest of my session goes off without incident and I am home for another snooze by 1.45pm.
So that's it for this year. In comparison with last Christmas it is everything is looking rosy.
Wishing you all a Merry Christmas, and a Happy, Prosperous and Peaceful New Year.
Wednesday, 21 December 2011
Thursday, 8 December 2011
Collapsing Veins and Humble Pie
Thursday 8th December
I went to have my 12th round of Herceptin last week and it would appear that my last decent vein is slowly but surely giving up the ghost. A few days before this I had slipped down the stairs and smashed my right elbow in to the stairs. I did think for a short moment that I might have broken something, but fortunately not.
However, it occurred to me that had I broken my right arm this would leave no place to stick needles in. The nurse, expert that she is, did manage to stick the needle in my collapsing vein successfully. When I asked what she wold have done had I turned up with my right arm in plaster she mentioned something about legs and feet! I don't think she was joking, but I must tried to avoid breaking my right arm.
Yesterday I went to a different hospital to the physiotherapy unit for the pain in my neck. No not my children, they are the pain in my wallet!!! My neck pain I should point out is completely unrelated to my cancer or ongoing treatment, it's just the rest of my falling apart, slowly.
Anyway, whilst there I bumped into an old friend who I haven't seen in years. (I really must make more of an effort to keep up contact.) Well she has been suffering from lymphoma (cancer of the lymph system) and to cut a long story short, it took a while to diagnose as she did not display any of the typical symptoms. Upshot is she had in-patient chemotherapy, including spinal injections and because this is not a type of cancer you can operate on had to rely entirely on the chemo, which from the sound of it was very rigorous. She is currently in remission and is having physio for the after effects of the chemo and cancer, weakened muscles and the like.
Well, having spoken to her I felt unbelievably humbled by her experience and whilst I probably have a slightly better idea of what she has gone through than many of you, I can hardly begin to imagine exactly what she has endured. It makes my last year or so seem like a cake walk in comparison and I am beyond grateful that my cancer, diagnosis and treatment have all been relatively quick, straightforward and by and large, endurable.
Whilst I don't tend to like to play the Pollyanna Glad Game, every so often I think it is a good thing that something happens which puts my own situation very much in perspective.
I went to have my 12th round of Herceptin last week and it would appear that my last decent vein is slowly but surely giving up the ghost. A few days before this I had slipped down the stairs and smashed my right elbow in to the stairs. I did think for a short moment that I might have broken something, but fortunately not.
However, it occurred to me that had I broken my right arm this would leave no place to stick needles in. The nurse, expert that she is, did manage to stick the needle in my collapsing vein successfully. When I asked what she wold have done had I turned up with my right arm in plaster she mentioned something about legs and feet! I don't think she was joking, but I must tried to avoid breaking my right arm.
Yesterday I went to a different hospital to the physiotherapy unit for the pain in my neck. No not my children, they are the pain in my wallet!!! My neck pain I should point out is completely unrelated to my cancer or ongoing treatment, it's just the rest of my falling apart, slowly.
Anyway, whilst there I bumped into an old friend who I haven't seen in years. (I really must make more of an effort to keep up contact.) Well she has been suffering from lymphoma (cancer of the lymph system) and to cut a long story short, it took a while to diagnose as she did not display any of the typical symptoms. Upshot is she had in-patient chemotherapy, including spinal injections and because this is not a type of cancer you can operate on had to rely entirely on the chemo, which from the sound of it was very rigorous. She is currently in remission and is having physio for the after effects of the chemo and cancer, weakened muscles and the like.
Well, having spoken to her I felt unbelievably humbled by her experience and whilst I probably have a slightly better idea of what she has gone through than many of you, I can hardly begin to imagine exactly what she has endured. It makes my last year or so seem like a cake walk in comparison and I am beyond grateful that my cancer, diagnosis and treatment have all been relatively quick, straightforward and by and large, endurable.
Whilst I don't tend to like to play the Pollyanna Glad Game, every so often I think it is a good thing that something happens which puts my own situation very much in perspective.
Sunday, 20 November 2011
Routine, Menopause & Dr. Dennis Slamon
Sunday 20th November 2011
Those of you who have been paying attention will note that I have been a little tardy in posting about my most recent trip to the chemotherapy unit.
Well, to be honest it is now so complete uneventful that it would be dull and slightly boring to write about it. Indeed I could just copy & paste a previous entry and it would be pretty much the same. So that's good really.
Some time ago my Breast Nurse, referred me to the menopause clinic because I mentioned the annoyance that are hot flushes. Well I received an appointment accompanied by lots of forms at the beginning of this week for an appointment on the 17th.
The forms consisted of one A4 page for symptoms, more of which later, and umpteen A4 sheets relating to my nationality and my eligibility for NHS treatment. Now given that I have virtually lived at Northwick Park Hospital for the last 18 months or so this paperwork seems, firstly a little excessive and secondly a tad late. Still I filled it in as best I could, but did mention the futility of it when I went to my appointment, alas to no avail.
The symptoms sheet was altogether more interesting. Firstly I am clearly not suffering anywhere near as much as some, secondly there are some really interesting symptoms, my favourite being "Feelings of personal disintegration". It made me realise that I am clearly getting off quite lightly, however the hot flushes are extremely annoying and they are interrupting my sleep.
The woman I saw went through an extensive medical history, including whether I had broken any bones, and all my family medical ailments. I was then weighed and measured and had my blood pressure taken but this time with a manual machine. Apparently they are more accurate than the electric ones.
So what can be done about hot flushes? I can take any of the following, a mild anti-depressant, a blood pressure pill or an analgesic pill. All of which have side effects, primarily feeling nauseous to a greater or lesser degree.
I can also go down the alternative route. Yoga is apparently good for hot flushes, unless it's me doing it in which case it actually brings them on. I just love being special!
Acupuncture can help as can taking various supplements, such as red clover or black cohosh. However, I can't take black cohosh because of my breast cancer.
Things that don't work are evening primrose oil, lavender and something else which slips my mind. So I will be going with the red clover and I'll let you know how it goes. I should point out that much like any ailment, the simple act of booking an appointment with the medical profession tends to alleviate the symptoms, consequently I have had fewer and less severe hot flushes since I went to the clinic.
Who is Dr. Dennis Slamon? I hear you ask. Well he was played by Harry Connick Jr. in a made for TV film "Living Proof" which I caught the other day. Up until this point I didn't realise that I have much to thank him for. As you can probably guess he resides in America, California to be precise. This is the man who discovered Herceptin. So now you are as informed as I am, but probably not quite as grateful!
Those of you who have been paying attention will note that I have been a little tardy in posting about my most recent trip to the chemotherapy unit.
Well, to be honest it is now so complete uneventful that it would be dull and slightly boring to write about it. Indeed I could just copy & paste a previous entry and it would be pretty much the same. So that's good really.
Some time ago my Breast Nurse, referred me to the menopause clinic because I mentioned the annoyance that are hot flushes. Well I received an appointment accompanied by lots of forms at the beginning of this week for an appointment on the 17th.
The forms consisted of one A4 page for symptoms, more of which later, and umpteen A4 sheets relating to my nationality and my eligibility for NHS treatment. Now given that I have virtually lived at Northwick Park Hospital for the last 18 months or so this paperwork seems, firstly a little excessive and secondly a tad late. Still I filled it in as best I could, but did mention the futility of it when I went to my appointment, alas to no avail.
The symptoms sheet was altogether more interesting. Firstly I am clearly not suffering anywhere near as much as some, secondly there are some really interesting symptoms, my favourite being "Feelings of personal disintegration". It made me realise that I am clearly getting off quite lightly, however the hot flushes are extremely annoying and they are interrupting my sleep.
The woman I saw went through an extensive medical history, including whether I had broken any bones, and all my family medical ailments. I was then weighed and measured and had my blood pressure taken but this time with a manual machine. Apparently they are more accurate than the electric ones.
So what can be done about hot flushes? I can take any of the following, a mild anti-depressant, a blood pressure pill or an analgesic pill. All of which have side effects, primarily feeling nauseous to a greater or lesser degree.
I can also go down the alternative route. Yoga is apparently good for hot flushes, unless it's me doing it in which case it actually brings them on. I just love being special!
Acupuncture can help as can taking various supplements, such as red clover or black cohosh. However, I can't take black cohosh because of my breast cancer.
Things that don't work are evening primrose oil, lavender and something else which slips my mind. So I will be going with the red clover and I'll let you know how it goes. I should point out that much like any ailment, the simple act of booking an appointment with the medical profession tends to alleviate the symptoms, consequently I have had fewer and less severe hot flushes since I went to the clinic.
Who is Dr. Dennis Slamon? I hear you ask. Well he was played by Harry Connick Jr. in a made for TV film "Living Proof" which I caught the other day. Up until this point I didn't realise that I have much to thank him for. As you can probably guess he resides in America, California to be precise. This is the man who discovered Herceptin. So now you are as informed as I am, but probably not quite as grateful!
Tuesday, 25 October 2011
More Than Half Way There And It's Tediously Routine
Wednesday 19th October
For those of you who have been paying close attention you will note that almost a week has past since my last Herceptin treatment and I am only now updating my blog.
Have no fear dear reader, this is more to do with the fact that my visits to the chemotherapy unit are now monotonously routine rather than any more sinister reason.
As you will probably guess I have little or nothing to report.
I was not kept waiting, indeed the unit was remarkably under attended, which is a very good thing I think.
The top professional nurse found a vein first time and with little or no pain.
I am also now becoming impervious to the side effects of the pre-meds, so no mid treatment snooze.
Possibly the only notably thing that happened was that the blood pressure machine malfunctioned, either that or I was actually dead!
Interestingly when automatic blood pressure machines malfunction they simply keep inflating and deflating the blood pressure cuff. Now some of you might remember that I really don't like having my blood pressure taken, not sure why but I just don't. Anyway, having a slightly "mad" machine inflate and deflate ad nauseum did little or nothing for my actual blood pressure and consequently my final blood pressure reading was on the high side. The nurse seemed unbothered by this so I'm not sure now if I actually have high blood pressure or not.
Anyway, only another 8 treatments to go. I can only hope the remainder are as boring as this one.
For those of you who have been paying close attention you will note that almost a week has past since my last Herceptin treatment and I am only now updating my blog.
Have no fear dear reader, this is more to do with the fact that my visits to the chemotherapy unit are now monotonously routine rather than any more sinister reason.
As you will probably guess I have little or nothing to report.
I was not kept waiting, indeed the unit was remarkably under attended, which is a very good thing I think.
The top professional nurse found a vein first time and with little or no pain.
I am also now becoming impervious to the side effects of the pre-meds, so no mid treatment snooze.
Possibly the only notably thing that happened was that the blood pressure machine malfunctioned, either that or I was actually dead!
Interestingly when automatic blood pressure machines malfunction they simply keep inflating and deflating the blood pressure cuff. Now some of you might remember that I really don't like having my blood pressure taken, not sure why but I just don't. Anyway, having a slightly "mad" machine inflate and deflate ad nauseum did little or nothing for my actual blood pressure and consequently my final blood pressure reading was on the high side. The nurse seemed unbothered by this so I'm not sure now if I actually have high blood pressure or not.
Anyway, only another 8 treatments to go. I can only hope the remainder are as boring as this one.
Wednesday, 28 September 2011
Side Effects, Half Way There & The Problem of Oddness Appears to Disappear
Wednesday 28th September
Side Effects
I have had some interesting but not too intrusive side effects. I am not entirely certain if they relate to the Herceptin or to the Tamoxifen. In any event they are as follows:
Flaky fingernails - think I might invest in some Sally Hansen Hard as Nails. Let you know how that works out.
Painful feet and leg joint - have been taking super strength cod liver oil and that seems to alleviate the problem which means I don't tend to resemble a 90 year old arthritic woman first thing in the morning or when I first get up from sitting down for a while - which is good.
Cramping muscles in my legs - this hasn't happened a lot but it can be really quite painful when it does. Not sure what I can do to relieve this, any suggests most welcome.
Hot flushes and cold chills - this is because all the treatment I have been receiving has pushed me into the menopause. The upshot of the hot flushes and the following chills is that my sleep is hugely interrupted as I spend virtually all night fluctuating between being spread eagled with no duvet on or snuggled up with the duvet pulled up around my ears!
Immediately after the Herceptin my taste buds play up for a day or so making things taste different.
I also suffer the following day only from hot, red itchy cheeks on my face!
So that's the side effects dealt with, as previously mentioned any suggestions for a little light relief will be gratefully received, especially with regard to the hot flushes!
So today I had my 9th round of Herceptin only another 9 to go. Those readers who have been following closely will know by now that I feel more than a little trepidatious about my "odd" visits. However today was hitchless and given that I went by bicycle this was all the more joyful.
The reason for the bike is that I have been advised not to drive because I have Piriton as an anti allergy pre-med and my usual ride wasn't available. I have walked before but I thought it would be quicker if I cycled and in the event I wasn't up to riding back, wheeling the bike home wouldn't be too arduous. As it happens I appear to be developing a tolerance to the side effects of Piriton so I was not at all sleepy.
I was also seen at my appointed time and was in and out in under 3 hours which was fantastic. I can only hope that this has now set a new trend for my visits.
Side Effects
I have had some interesting but not too intrusive side effects. I am not entirely certain if they relate to the Herceptin or to the Tamoxifen. In any event they are as follows:
Flaky fingernails - think I might invest in some Sally Hansen Hard as Nails. Let you know how that works out.
Painful feet and leg joint - have been taking super strength cod liver oil and that seems to alleviate the problem which means I don't tend to resemble a 90 year old arthritic woman first thing in the morning or when I first get up from sitting down for a while - which is good.
Cramping muscles in my legs - this hasn't happened a lot but it can be really quite painful when it does. Not sure what I can do to relieve this, any suggests most welcome.
Hot flushes and cold chills - this is because all the treatment I have been receiving has pushed me into the menopause. The upshot of the hot flushes and the following chills is that my sleep is hugely interrupted as I spend virtually all night fluctuating between being spread eagled with no duvet on or snuggled up with the duvet pulled up around my ears!
Immediately after the Herceptin my taste buds play up for a day or so making things taste different.
I also suffer the following day only from hot, red itchy cheeks on my face!
So that's the side effects dealt with, as previously mentioned any suggestions for a little light relief will be gratefully received, especially with regard to the hot flushes!
So today I had my 9th round of Herceptin only another 9 to go. Those readers who have been following closely will know by now that I feel more than a little trepidatious about my "odd" visits. However today was hitchless and given that I went by bicycle this was all the more joyful.
The reason for the bike is that I have been advised not to drive because I have Piriton as an anti allergy pre-med and my usual ride wasn't available. I have walked before but I thought it would be quicker if I cycled and in the event I wasn't up to riding back, wheeling the bike home wouldn't be too arduous. As it happens I appear to be developing a tolerance to the side effects of Piriton so I was not at all sleepy.
I was also seen at my appointed time and was in and out in under 3 hours which was fantastic. I can only hope that this has now set a new trend for my visits.
Saturday, 10 September 2011
Routine and Mundane!
Wednesday 7th September
This is my eighth round of Herceptin, only another 10 to go!
Apart from a very long wait for a chair this visit, being an even event, went without a hitch. I really I starting to get very twitchy about the "odd" visits.
Anyway, as luck would have it I got to sit in one of the new, all-singing, all-dancing chairs. They are much higher than the old versions, but you can adjust the back and the foot rest to your heart's content. I found it immensely comfortable, although I did feel a bit like a three year with my legs dangling above the floor when I first sat down.
There was no trouble finding a vein and apart from the fact that it seemed to take much longer than previously it really was a most boring visit.
Still never mind there's always number 9 to look forward to!
This is my eighth round of Herceptin, only another 10 to go!
Apart from a very long wait for a chair this visit, being an even event, went without a hitch. I really I starting to get very twitchy about the "odd" visits.
Anyway, as luck would have it I got to sit in one of the new, all-singing, all-dancing chairs. They are much higher than the old versions, but you can adjust the back and the foot rest to your heart's content. I found it immensely comfortable, although I did feel a bit like a three year with my legs dangling above the floor when I first sat down.
There was no trouble finding a vein and apart from the fact that it seemed to take much longer than previously it really was a most boring visit.
Still never mind there's always number 9 to look forward to!
Thursday, 18 August 2011
Good News and Unlucky Number 7
Monday 15th August
I have an appointment to see Dr. Denton who gives me the good news that the results of my mamogramme and MRI were clear, which to be honest I was expecting this to be the case. Still it's good to know that everything is going well. She has a quick check of my lungs and stuff and then I am free to go.
Wednesday 17th August
Those of you who have been paying attention will know that my "odd" herceptin visits do not go smoothly and this being number 7 was to prove the case again.
Firstly, my appointment had to be moved back by half an hour to 11am due to the number of people needing chemotherapy and the limited number of chairs. I arrived at about 10.45am and waited. 11am came and went as did the next 60 minutes. The reason for the delay was, as detailed above lots of people and also the pharmacy was running slowly so it took a while for the chemotherapy drugs to get upstairs. So consequently I got a lot of reading done.
Once I got in the nurse tried for a vein, got the needle in but no joy, so off she went to get the matron who found a decent vein. However the pump to which I was attached kept beeping even after it was plugged into the mains. Apparently it needed a new battery and so another pump had to be found to replace this one. I really am not a very superstitious person but I am getting just a little paranoid about my "odd" visits to the chemo unit.
Anyway the rest of the session went off without a hitch. Once the herceptin has finished they push though some saline to flush through the vein. The nurse said she'd pump through about 100ml from a bag which contained 500ml and said I could drink the rest. I did point out that perhaps this would be a little salty at which point she fell about laughing saying what she meant to say was I should go home and drink lots of water.
So far everything is going well and in comparison with chemotherapy, herceptin is a doddle.
I have an appointment to see Dr. Denton who gives me the good news that the results of my mamogramme and MRI were clear, which to be honest I was expecting this to be the case. Still it's good to know that everything is going well. She has a quick check of my lungs and stuff and then I am free to go.
Wednesday 17th August
Those of you who have been paying attention will know that my "odd" herceptin visits do not go smoothly and this being number 7 was to prove the case again.
Firstly, my appointment had to be moved back by half an hour to 11am due to the number of people needing chemotherapy and the limited number of chairs. I arrived at about 10.45am and waited. 11am came and went as did the next 60 minutes. The reason for the delay was, as detailed above lots of people and also the pharmacy was running slowly so it took a while for the chemotherapy drugs to get upstairs. So consequently I got a lot of reading done.
Once I got in the nurse tried for a vein, got the needle in but no joy, so off she went to get the matron who found a decent vein. However the pump to which I was attached kept beeping even after it was plugged into the mains. Apparently it needed a new battery and so another pump had to be found to replace this one. I really am not a very superstitious person but I am getting just a little paranoid about my "odd" visits to the chemo unit.
Anyway the rest of the session went off without a hitch. Once the herceptin has finished they push though some saline to flush through the vein. The nurse said she'd pump through about 100ml from a bag which contained 500ml and said I could drink the rest. I did point out that perhaps this would be a little salty at which point she fell about laughing saying what she meant to say was I should go home and drink lots of water.
So far everything is going well and in comparison with chemotherapy, herceptin is a doddle.
Sunday, 24 July 2011
Getting Into A Routine
Thursday 21st July
As previously predicted this "even" round of Herceptin went without a hitch, relatively, and indeed was considerably quicker than usual. I have learned that Herceptin is put in a bag of saline, the amount of saline is 250ml, obviously the addition of Herceptin increases the amount of liquid in the bag. The pump is programmed to push through the given amount of liquid in a set time, in this instance 90 minutes. Previously, once the 90 minutes was up there was always some liquid left. The nurse who administered to me this time normally works at the Royal Marsden. She said that they always weigh the bag to get the "correct" amount in the bag and then use this figure rather than the nominal 250ml. Quite sensible really. Anyway, she estimated that it would be about 300ml and lo and behold the whole bag was done in the requisite 90minutes. I do hope that someone, somewhere shares this information.
As part of the Persephone trial I have to complete a form detail any side effects if any. The only side effect I seem to suffer from is unbelievably hot, itchy cheeks. My face feels and looks as though I have been deeply embarrassed, however this tends last for approximately 24 hours, so in the grand scheme of things it's not too bad.
With regard to going without a hitch, relatively, the veins in my arm are now in a truly parlous state, the ones in my hand are non-existent. Anyway, the nurse had to do a bit of wiggling of the cannula before she was happy that is was well sited. Consequently I now have the most spectacular bruise on my arm and I think that it might be even better than the one from last time when "tissue" was pushed through.
Those of you who have been paying attention will note that it is almost exactly a year since I was diagnosed. It's very hard not to dwell on everything that has happened over the past 12 months and indeed reading back through my blog there are so many things that I have forgotten about. Having said that at no time have I ever felt that I would be anything other than absolutely fine. I have another 12 rounds of Herceptin to go which will take me to April 2012, two years after I first discovered the lump, which wasn't the problem at all.
As previously predicted this "even" round of Herceptin went without a hitch, relatively, and indeed was considerably quicker than usual. I have learned that Herceptin is put in a bag of saline, the amount of saline is 250ml, obviously the addition of Herceptin increases the amount of liquid in the bag. The pump is programmed to push through the given amount of liquid in a set time, in this instance 90 minutes. Previously, once the 90 minutes was up there was always some liquid left. The nurse who administered to me this time normally works at the Royal Marsden. She said that they always weigh the bag to get the "correct" amount in the bag and then use this figure rather than the nominal 250ml. Quite sensible really. Anyway, she estimated that it would be about 300ml and lo and behold the whole bag was done in the requisite 90minutes. I do hope that someone, somewhere shares this information.
As part of the Persephone trial I have to complete a form detail any side effects if any. The only side effect I seem to suffer from is unbelievably hot, itchy cheeks. My face feels and looks as though I have been deeply embarrassed, however this tends last for approximately 24 hours, so in the grand scheme of things it's not too bad.
With regard to going without a hitch, relatively, the veins in my arm are now in a truly parlous state, the ones in my hand are non-existent. Anyway, the nurse had to do a bit of wiggling of the cannula before she was happy that is was well sited. Consequently I now have the most spectacular bruise on my arm and I think that it might be even better than the one from last time when "tissue" was pushed through.
Those of you who have been paying attention will note that it is almost exactly a year since I was diagnosed. It's very hard not to dwell on everything that has happened over the past 12 months and indeed reading back through my blog there are so many things that I have forgotten about. Having said that at no time have I ever felt that I would be anything other than absolutely fine. I have another 12 rounds of Herceptin to go which will take me to April 2012, two years after I first discovered the lump, which wasn't the problem at all.
Thursday, 7 July 2011
Wimbledon, Anniversaries & Irksome People
Tuesday 5th July
I had an appointment for a mammogram today so I thought I'd kill two birds with one stone and get my hair cut as well.
Whilst I admit it is not that long, the bits that didn't fall out are much longer than the new growth, obviously. So I went to see Karen again, who not only trims wigs but also sorts out post chemo hair. We did discuss holidays this time but only because I'm off soon and she had noted my previous comment regarding being a proper hairdresser. During the course of the hair cut I discovered I have more in common with Marina Navratilova than I first thought. Not only has she also had breast cancer, but she has also had her hair cut by Karen. During the Wimbledon fortnight, Karen and some other hairdresser "do" the competitors' hair. Other people lead such interesting lives.
I then went to have my mammogram. It is very nearly a year since this whole escapade started and to be honest the feeling of de ja vu was quite unsettling. The only difference now is having only one breast, it takes have the time and half the discomfort. I went home having been told that the results would be sent to my consultant.
Wednesday 6th July
Back again at the hospital. Soon they will start charging me rent. I am so glad that I live relatively close to Northwick Park Hospital as this makes my frequent trips there much less time consuming.
The nature of my cancer means that I have to have an MRI as well as a mammogram. I get there in plenty time fill in the numerous forms confirming my lack of metal bits and pieces both internally and externally and then wait. As I rest my head against the waiting area wall I notice that it is vibrating, clearly the giant magnet down the corridor has an effect on the whole building.
Eventually I get called in and told to remove all my clothes and put on the very fetching navy blue hospital gown, with the opening at the front. I have to have an injection of contrasting dye. As you will be aware I can only use my right arm and it is rapidly running out of useful veins. The nurse makes his first attempt near my elbow. Fails. He then questions me at length about why he cannot use my left arm and who told me that it couldn't be used. Whilst his manner was not aggressive it was somewhat patronising. I point out why it cannot be used, lack of lymph nodes, and who told me never to use my left arm for anything including blood pressure cuffs, the surgeon who removed the lymph nodes. I cannot believe that I am the first person he has come across who has this issue. I wasn't entirely certain that he believed me but I kept my left arm well away from him. His second attempt is the vein just below my right index finger, where there is very little padding and the skin is, apparently, quite tough. Success, albeit rather painful.
I go into the MRI room the nurse tells me to lie face down and place my breasts in the two hollows, I point out rather tersely that I have only one! The scanning begins. It is very noisy and again I have that unsettling feeling of de ja vu. The last time I was here was to have the biopsy which confirmed the spread of my cancer. It's hard not to dwell on what has happened over the last year especially when all I can do is lie face down with my eyes shut.
The scan or rather scans take about 30 minutes, I am then told to get dressed and go home and the results will be sent to my consultant.
I am hopeful that this now yearly event will get easier as my veins recover.
I had an appointment for a mammogram today so I thought I'd kill two birds with one stone and get my hair cut as well.
Whilst I admit it is not that long, the bits that didn't fall out are much longer than the new growth, obviously. So I went to see Karen again, who not only trims wigs but also sorts out post chemo hair. We did discuss holidays this time but only because I'm off soon and she had noted my previous comment regarding being a proper hairdresser. During the course of the hair cut I discovered I have more in common with Marina Navratilova than I first thought. Not only has she also had breast cancer, but she has also had her hair cut by Karen. During the Wimbledon fortnight, Karen and some other hairdresser "do" the competitors' hair. Other people lead such interesting lives.
I then went to have my mammogram. It is very nearly a year since this whole escapade started and to be honest the feeling of de ja vu was quite unsettling. The only difference now is having only one breast, it takes have the time and half the discomfort. I went home having been told that the results would be sent to my consultant.
Wednesday 6th July
Back again at the hospital. Soon they will start charging me rent. I am so glad that I live relatively close to Northwick Park Hospital as this makes my frequent trips there much less time consuming.
The nature of my cancer means that I have to have an MRI as well as a mammogram. I get there in plenty time fill in the numerous forms confirming my lack of metal bits and pieces both internally and externally and then wait. As I rest my head against the waiting area wall I notice that it is vibrating, clearly the giant magnet down the corridor has an effect on the whole building.
Eventually I get called in and told to remove all my clothes and put on the very fetching navy blue hospital gown, with the opening at the front. I have to have an injection of contrasting dye. As you will be aware I can only use my right arm and it is rapidly running out of useful veins. The nurse makes his first attempt near my elbow. Fails. He then questions me at length about why he cannot use my left arm and who told me that it couldn't be used. Whilst his manner was not aggressive it was somewhat patronising. I point out why it cannot be used, lack of lymph nodes, and who told me never to use my left arm for anything including blood pressure cuffs, the surgeon who removed the lymph nodes. I cannot believe that I am the first person he has come across who has this issue. I wasn't entirely certain that he believed me but I kept my left arm well away from him. His second attempt is the vein just below my right index finger, where there is very little padding and the skin is, apparently, quite tough. Success, albeit rather painful.
I go into the MRI room the nurse tells me to lie face down and place my breasts in the two hollows, I point out rather tersely that I have only one! The scanning begins. It is very noisy and again I have that unsettling feeling of de ja vu. The last time I was here was to have the biopsy which confirmed the spread of my cancer. It's hard not to dwell on what has happened over the last year especially when all I can do is lie face down with my eyes shut.
The scan or rather scans take about 30 minutes, I am then told to get dressed and go home and the results will be sent to my consultant.
I am hopeful that this now yearly event will get easier as my veins recover.
Friday, 1 July 2011
Oddness Of Problems, Problems of Oddness
Thursday 30th June
Now that I am on the Persephone trial I have to have more tests and stuff. So I meet with the Persephone lady at the blood clinic to have some blood taken.
My favourite phelbotomist is in attendance and once again performs the miracle which is getting blood out of a stone. Duty done, the Persephone lady takes away the two test tubes of my (hard won) blood.
I then have to have an echocardiogram. The clinic is located on the 9th floor. I decide to take the stairs, probably not such a good idea as when I arrive at reception I feel as though I'm about to have a heart attack.
I have to lie on my left hand side and the woman who wields the ultrasound probe is behind and leaning over me so I cannot see the screen. Last time the clinician was in front of me so I could see what was happening on the screen. Slightly frustrating but at least I can rest. I assume that everything is OK with my heart.
I then descend 3 floors to the chemotherapy unit to have my fifth round of Herceptin.
There are two new nurses in, who usually work up at Mount Vernon, consequently everything takes just a little bit longer. I am given all my pre-meds to stop the allergic reaction and then I have to wait about 30 minutes for them to "kick in" before the Herceptin can be given.
After the designated 30 minutes the pump makes a persistent beeping sound. This indicates that there is an air lock somewhere in the system and it won't pump until this is cleared. The nurse pushes various buttons, takes things out, puts them back and still there is a blockage. She then gets a syringe of saline and pushes this through the cannular in my arm. This hurts - a lot. Apparently there is "tissue" in the cannular, which given they use the thinnest cannulars available it is hardly surprising that it takes only a very small thing to block them. Anyway, once the blockage is cleared I can feel the cold saline going up my arm. This is a good thing.
Still the pump beeps and refuses to pump. Another nurse comes along pushes some buttons on the pump and all is cleared. The Herceptin can proceed. Hooray!
All of this blockage clearance has taken about half an hour and given that I didn't start being administered to until I had been in the unit for about 45 minutes, together with the 30 minute wait for the pre-meds to work and there is a further 20 minutes or so after the Herceptin has finished spent flushing saline through me, I actually spend very little time actually been given treatment!
I had arrived at the hospital at 10.30am. I leave a little after 4.00pm. It was a long day.
For those wondering about the title of this entry, I shall explain.
I am not by nature a superstitious person, being born on the 13th tends to put paid to that. However, I am beginning to notice a pattern in my visits to the chemotherapy unit.
Visit number 1: Severe allergic reaction
Visit number 2: Nothing
Visit number 3: 5 attempts at locating a vein, and a huge swollen vein in my hand.
Visit number 4: Nothing
Visit number 5: Air locks and blockages
I can only hope that the next 13 visits do not follow the above trend, because I can really do without the excitement.
Now that I am on the Persephone trial I have to have more tests and stuff. So I meet with the Persephone lady at the blood clinic to have some blood taken.
My favourite phelbotomist is in attendance and once again performs the miracle which is getting blood out of a stone. Duty done, the Persephone lady takes away the two test tubes of my (hard won) blood.
I then have to have an echocardiogram. The clinic is located on the 9th floor. I decide to take the stairs, probably not such a good idea as when I arrive at reception I feel as though I'm about to have a heart attack.
I have to lie on my left hand side and the woman who wields the ultrasound probe is behind and leaning over me so I cannot see the screen. Last time the clinician was in front of me so I could see what was happening on the screen. Slightly frustrating but at least I can rest. I assume that everything is OK with my heart.
I then descend 3 floors to the chemotherapy unit to have my fifth round of Herceptin.
There are two new nurses in, who usually work up at Mount Vernon, consequently everything takes just a little bit longer. I am given all my pre-meds to stop the allergic reaction and then I have to wait about 30 minutes for them to "kick in" before the Herceptin can be given.
After the designated 30 minutes the pump makes a persistent beeping sound. This indicates that there is an air lock somewhere in the system and it won't pump until this is cleared. The nurse pushes various buttons, takes things out, puts them back and still there is a blockage. She then gets a syringe of saline and pushes this through the cannular in my arm. This hurts - a lot. Apparently there is "tissue" in the cannular, which given they use the thinnest cannulars available it is hardly surprising that it takes only a very small thing to block them. Anyway, once the blockage is cleared I can feel the cold saline going up my arm. This is a good thing.
Still the pump beeps and refuses to pump. Another nurse comes along pushes some buttons on the pump and all is cleared. The Herceptin can proceed. Hooray!
All of this blockage clearance has taken about half an hour and given that I didn't start being administered to until I had been in the unit for about 45 minutes, together with the 30 minute wait for the pre-meds to work and there is a further 20 minutes or so after the Herceptin has finished spent flushing saline through me, I actually spend very little time actually been given treatment!
I had arrived at the hospital at 10.30am. I leave a little after 4.00pm. It was a long day.
For those wondering about the title of this entry, I shall explain.
I am not by nature a superstitious person, being born on the 13th tends to put paid to that. However, I am beginning to notice a pattern in my visits to the chemotherapy unit.
Visit number 1: Severe allergic reaction
Visit number 2: Nothing
Visit number 3: 5 attempts at locating a vein, and a huge swollen vein in my hand.
Visit number 4: Nothing
Visit number 5: Air locks and blockages
I can only hope that the next 13 visits do not follow the above trend, because I can really do without the excitement.
Saturday, 11 June 2011
Persephone
Thursday 9th June
For those of a classical mind, Persephone is the daughter of Zeus and the harvest goddess Demeter, and queen of the underworld, who was abducted by her uncle Hades, the king of the underworld.
For me however, Persephone is the name of the medical trial that I have joined.
Herceptin is generally given for 12 months, on a three weekly basis. A study in Finland discovered that the medical benefits of Herceptin could be just as good if given over a shorter period. Persephone is comparing a 12 month regime with a 6 month one.
The matron, bless her, was really hoping that I would be randomised to the 6 month basis. I think this may have more to do with the fact that I seem to be such a problematic patient, although this round of Herceptin nothing exciting happened at all, which was nice!
Anyway, once I had completed all the paperwork, the Persephone lady "asked" the computer to randomise me and as luck would have it I am on the 12 month basis.
So I will be around for a bit longer to vex the chemotherapy unit and its ever patient staff.
For those of a classical mind, Persephone is the daughter of Zeus and the harvest goddess Demeter, and queen of the underworld, who was abducted by her uncle Hades, the king of the underworld.
For me however, Persephone is the name of the medical trial that I have joined.
Herceptin is generally given for 12 months, on a three weekly basis. A study in Finland discovered that the medical benefits of Herceptin could be just as good if given over a shorter period. Persephone is comparing a 12 month regime with a 6 month one.
The matron, bless her, was really hoping that I would be randomised to the 6 month basis. I think this may have more to do with the fact that I seem to be such a problematic patient, although this round of Herceptin nothing exciting happened at all, which was nice!
Anyway, once I had completed all the paperwork, the Persephone lady "asked" the computer to randomise me and as luck would have it I am on the 12 month basis.
So I will be around for a bit longer to vex the chemotherapy unit and its ever patient staff.
Wednesday, 18 May 2011
5th Time Lucky!
Tuesday 17th May
Went for my third round of Herceptin.
As those of you who have been paying attention will know, the veins in my right arm, even on a good day, are rubbish, the chemo has properly done for them.
The usual procedure is to immerse my arm in a bucket of warm water to bring the veins up. This usually does the trick. However, this time not so much. The nurse tried to put the needle in a vein on the back of my hand, very painful and not successful. At this point I asked how many attempts were allowed, she replied "Two". I did wonder what happened after the second attempt, would I be sent home in disgrace with my pathetic veins and told to do better next time?
The second attempt was in the vein near the base of my thumb. Not so painful but still no joy. I was not sent home in disgrace, instead the nurse disappeared off to get the matron. Interestingly the matron arrived and made straight for me. I am clearly the most problematic patient they have.
The matron peered intently at my hand looking for a suitable vein. Apparently pulsing veins are not suitable as they make the needle "bounce", which I gather is not a good thing. She found another vein in the back of my hand and gave it a go. No good. as she withdrew the needle the vein ballooned rather alarmingly. Nothing to worry about apparently, it's just the blood rushing to the site to help the clotting and because I had a tourniquet on the blood had nowhere else to go.
Attempt number 4, also in the back of my hand, again not successful. The matron put lots of pressure on my swollen vein with a gauze pad and copious quantities of micro-pore.
Attempt number 5, this was done at the top of my lower arm and was thankfully successful.
The matron assured me that the swelling would go down within a day or so (which it has) and that she would have a look at it before I left and bandage it up so I would look like a proper patient!!!
The rest of the session passed uneventfully and very slowly. Lunchtime came and went. I had expected to be out of the hospital in time for lunch. so consequently had not brought anything with me to eat. Fortunately the wife of the man in the chair next to me took pity and very kindly gave me a packet of kettle chips. Manna form heaven!
Went for my third round of Herceptin.
As those of you who have been paying attention will know, the veins in my right arm, even on a good day, are rubbish, the chemo has properly done for them.
The usual procedure is to immerse my arm in a bucket of warm water to bring the veins up. This usually does the trick. However, this time not so much. The nurse tried to put the needle in a vein on the back of my hand, very painful and not successful. At this point I asked how many attempts were allowed, she replied "Two". I did wonder what happened after the second attempt, would I be sent home in disgrace with my pathetic veins and told to do better next time?
The second attempt was in the vein near the base of my thumb. Not so painful but still no joy. I was not sent home in disgrace, instead the nurse disappeared off to get the matron. Interestingly the matron arrived and made straight for me. I am clearly the most problematic patient they have.
The matron peered intently at my hand looking for a suitable vein. Apparently pulsing veins are not suitable as they make the needle "bounce", which I gather is not a good thing. She found another vein in the back of my hand and gave it a go. No good. as she withdrew the needle the vein ballooned rather alarmingly. Nothing to worry about apparently, it's just the blood rushing to the site to help the clotting and because I had a tourniquet on the blood had nowhere else to go.
Attempt number 4, also in the back of my hand, again not successful. The matron put lots of pressure on my swollen vein with a gauze pad and copious quantities of micro-pore.
Attempt number 5, this was done at the top of my lower arm and was thankfully successful.
The matron assured me that the swelling would go down within a day or so (which it has) and that she would have a look at it before I left and bandage it up so I would look like a proper patient!!!
The rest of the session passed uneventfully and very slowly. Lunchtime came and went. I had expected to be out of the hospital in time for lunch. so consequently had not brought anything with me to eat. Fortunately the wife of the man in the chair next to me took pity and very kindly gave me a packet of kettle chips. Manna form heaven!
Tuesday, 26 April 2011
The Calm After The Storm...
Tuesday 26th April
Well my second attempt at Herceptin went without a hitch.
This was down to the three lots of steroids I had to take beforehand, together with the intravenous Piriton (sorts out my hayfever as well!), intravenous hyrdocortisone and a couple of paracetemol for good measure.
So I will now embark on a 6 or 12 month regime of Herceptin (the duration of the course depends on what the clinical trial I am going on decides), and thus reduce of the cancer recurring in 10, 15, 20 years etc. to zilch - hooray!
As a general rule if it is a short post then things must be going well!
Well my second attempt at Herceptin went without a hitch.
This was down to the three lots of steroids I had to take beforehand, together with the intravenous Piriton (sorts out my hayfever as well!), intravenous hyrdocortisone and a couple of paracetemol for good measure.
So I will now embark on a 6 or 12 month regime of Herceptin (the duration of the course depends on what the clinical trial I am going on decides), and thus reduce of the cancer recurring in 10, 15, 20 years etc. to zilch - hooray!
As a general rule if it is a short post then things must be going well!
Sunday, 10 April 2011
Hair Raising...And How!
Saturday 9th April
As you will notice there has been a tremendous gap between this and the last post. This is because, medically speaking little or nothing has happened to me - fortunately.
My hair is starting to grow back everywhere. I thought I had a severe case of raging athletes' foot but it was just the itching from the hair growing back on my toes. Yes I have hairy toes. My arms are similarly afflicted as is the underside of my chin. Strangely my head has not itched at all, nor anywhere else.
Medically, I have had a heart scan and it appears to be working in the manner prescribed.
Yesterday I went back to the chemotherapy unit for my first round of Herceptin.
Herceptin is an antibody which promotes your body to attack the Her2 receptors on the cancer cells, assuming you have Her2 receptive cancer.
Some people have no reaction at all to Herceptin, some people have a mild allergic reaction to Herceptin and very few people have a severe allergic reaction to Herceptin. You can guess which category I fell into!!!
Those people who have a severe allergic reaction usually react very quickly and equally when given anti-allergy medication calm down very quickly as well.
I did neither of these two things.
The administration of the loading does of Herceptin takes about 90 minutes and like "normal" chemotherapy it is given intravenously via a drip.
Well the first hour of my treatment went without incident. I just sat reading my Boris Johnson book.
The weather was lovely and I was sitting near the open window. After a while I felt a little chilly and assumed (incorrectly as it turned out!) that it was because I had been sitting still for over an hour near the open window. The nurse nearest me asked if I was feeling OK. I replied yes but just feeling a little chilly. A few minutes later I was freezing and shaking uncontrollably. Both the nurses appeared at my side to administer intravenous counteractive drugs, namely Piriton and hydrocortisone, as well as a couple of paracetamol.
I was assured I'd be fine in a few minutes.
I was not! I continued to shake uncontrollably and my temperature and blood pressure were all over the place!
The matron arrived! For future reference the arrival of the matron indicates that things are considerably more serious than you would like to imagine!
I am still shaking.
They break open the adrenalin from their crash cart!
I can either have it in my thigh or my arm. I opt for the latter as I am absolutely bursting to go to the loo and I am not sure that the removal of my jeans won't have a catastrophic outcome!
I am put on 100% oxygen. My chest tightens.
I am still shaking.
I am told by the matron that if I am still not calming down after about 5 minutes they will have to give me more adrenalin and call the crash team!
I am still shaking but with occasional lulls.
We compromise and the doctor from the crash team arrives to "chat" to me! (General consensus is that he is very good looking, sadly I surmise that I am undoubtedly old enough to be his mother!).
As a rule the chemotherapy unit don't like calling out the crash team as the crash team have little or no idea about chemotherapy. Straight forward heart attacks they are brilliant with, adverse reactions to chemotherapy they are not!
Gradually my shaking subsides, although I am knackered, both from the shaking and the sides effect of the Piriton. All of this has taken up the time of two nurses, one matron and one crash doctor for the best part of an hour. The consequence of this is that all the other chemo patients have had their treatment delayed during this time. I apologise profusely.
I am then informed that because I have had adrenalin (albeit only one shot) I will have to stay in the hospital for observation for 12 hours. This I do not want.
We come to an arrangement. I have to stay put until 4.30pm (which I would have had to do anyway) and then I can go home on the strict understanding that if I have any sort of dodgy symptom, e.g. tightening of my chest, palpitations etc, I will come straight back to A&E. I am out of there at 4.35pm like a greyhound out of the traps.
The matron contacts my oncologist and she decides that because I took so long before any reaction happened, that it is likely that I will be all right for future doses, however, I will be given all the counteractive drugs beforehand, except the adrenalin.
I have to admit that I am in two minds about this and will be calling the delightful Dr. Denton later this week to discuss whether I really should be continuing with this course of treatment as it is intended basically as a belt and braces option. I'm really not sure that I want to go through the "nearly dying" stuff again.
As you will notice there has been a tremendous gap between this and the last post. This is because, medically speaking little or nothing has happened to me - fortunately.
My hair is starting to grow back everywhere. I thought I had a severe case of raging athletes' foot but it was just the itching from the hair growing back on my toes. Yes I have hairy toes. My arms are similarly afflicted as is the underside of my chin. Strangely my head has not itched at all, nor anywhere else.
Medically, I have had a heart scan and it appears to be working in the manner prescribed.
Yesterday I went back to the chemotherapy unit for my first round of Herceptin.
Herceptin is an antibody which promotes your body to attack the Her2 receptors on the cancer cells, assuming you have Her2 receptive cancer.
Some people have no reaction at all to Herceptin, some people have a mild allergic reaction to Herceptin and very few people have a severe allergic reaction to Herceptin. You can guess which category I fell into!!!
Those people who have a severe allergic reaction usually react very quickly and equally when given anti-allergy medication calm down very quickly as well.
I did neither of these two things.
The administration of the loading does of Herceptin takes about 90 minutes and like "normal" chemotherapy it is given intravenously via a drip.
Well the first hour of my treatment went without incident. I just sat reading my Boris Johnson book.
The weather was lovely and I was sitting near the open window. After a while I felt a little chilly and assumed (incorrectly as it turned out!) that it was because I had been sitting still for over an hour near the open window. The nurse nearest me asked if I was feeling OK. I replied yes but just feeling a little chilly. A few minutes later I was freezing and shaking uncontrollably. Both the nurses appeared at my side to administer intravenous counteractive drugs, namely Piriton and hydrocortisone, as well as a couple of paracetamol.
I was assured I'd be fine in a few minutes.
I was not! I continued to shake uncontrollably and my temperature and blood pressure were all over the place!
The matron arrived! For future reference the arrival of the matron indicates that things are considerably more serious than you would like to imagine!
I am still shaking.
They break open the adrenalin from their crash cart!
I can either have it in my thigh or my arm. I opt for the latter as I am absolutely bursting to go to the loo and I am not sure that the removal of my jeans won't have a catastrophic outcome!
I am put on 100% oxygen. My chest tightens.
I am still shaking.
I am told by the matron that if I am still not calming down after about 5 minutes they will have to give me more adrenalin and call the crash team!
I am still shaking but with occasional lulls.
We compromise and the doctor from the crash team arrives to "chat" to me! (General consensus is that he is very good looking, sadly I surmise that I am undoubtedly old enough to be his mother!).
As a rule the chemotherapy unit don't like calling out the crash team as the crash team have little or no idea about chemotherapy. Straight forward heart attacks they are brilliant with, adverse reactions to chemotherapy they are not!
Gradually my shaking subsides, although I am knackered, both from the shaking and the sides effect of the Piriton. All of this has taken up the time of two nurses, one matron and one crash doctor for the best part of an hour. The consequence of this is that all the other chemo patients have had their treatment delayed during this time. I apologise profusely.
I am then informed that because I have had adrenalin (albeit only one shot) I will have to stay in the hospital for observation for 12 hours. This I do not want.
We come to an arrangement. I have to stay put until 4.30pm (which I would have had to do anyway) and then I can go home on the strict understanding that if I have any sort of dodgy symptom, e.g. tightening of my chest, palpitations etc, I will come straight back to A&E. I am out of there at 4.35pm like a greyhound out of the traps.
The matron contacts my oncologist and she decides that because I took so long before any reaction happened, that it is likely that I will be all right for future doses, however, I will be given all the counteractive drugs beforehand, except the adrenalin.
I have to admit that I am in two minds about this and will be calling the delightful Dr. Denton later this week to discuss whether I really should be continuing with this course of treatment as it is intended basically as a belt and braces option. I'm really not sure that I want to go through the "nearly dying" stuff again.
Thursday, 24 February 2011
What's Really Annoying.
Thursday 24th February
Hannah asked me the other day what were the worst bits about chemo, so here they are.
Throwing up - for obvious reasons
Food tasting like cardboard - this coupled with the vague feeling of nausea makes eating a real chore. Even water tastes slightly muddy. About the only thing that tastes like it should are Honey Nut Cheerios. Fortunately the cardboard taste tends to fade after a couple of weeks.
Madly fluctuating body temperature - I seem to spend my days either freezing, huddled up under a blanket with a hot water bottle, or throwing of clothes, blankets, duvets and the like sweating like the proverbial pig. I never feel comfortable, temperature wise.
Pain - my right arm feels as though it has been passed through a mangle. The pain from collapsing veins is akin to very severe bruising. Currently my wrist feels as is I have sprained is and moving my hand in any direction hurts. Given that I am very right handed, this makes doing every day things much more laborious, even putting washing in the machine hurts.
My body not feeling like my own - I have bitten the inside of my mouth more in the last six months than in the previous six years. I think this is down to the fact that the inside of my mouth, especially my teeth do not feel like I think they used to. This is also linked to the cardboard taste as food does not feel the same in my mouth as it used to. My body also suddenly stops, I can be walking along quite happily and then a sudden and overwhelming wave of fatigue will engulf me. There is nothing I can do to overcome this other than stop.
Dried up mucous membranes - in the morning before I even open my eyes I have to wiggle them around so I can open my eyes without much pain. I have to unstick my tongue and lips from my gums and drink some water to lubricate my throat. I think this lack of moisture may also exacerbate the dry retching as sticking my tongue out more than a couple of millimetres feels the same as sticking your finger down your throat. Also I have noticed that I appear to have been suffering from a mild but chronic nose bleed. I suspect this is because the inside of my nose, which is also now hairless, has so little protection from the elements that it is effectively "chapped".
Generally I feel as though my life and body are not my own. Everything has to take my treatment into account. I realise that this is all for my own benefit but it is a little wearing after a while. I am having a few weeks off from stuff at the hospital, although I have to go for two heart tests to make sure I'm well enough for the next stage of my treatment.
I am really looking forward to the end of my treatment, which entails another 6 to 12 months of intravenous herceptin, if only because I really am totally fed up with people sticking needles in my right arm!
Hannah asked me the other day what were the worst bits about chemo, so here they are.
Throwing up - for obvious reasons
Food tasting like cardboard - this coupled with the vague feeling of nausea makes eating a real chore. Even water tastes slightly muddy. About the only thing that tastes like it should are Honey Nut Cheerios. Fortunately the cardboard taste tends to fade after a couple of weeks.
Madly fluctuating body temperature - I seem to spend my days either freezing, huddled up under a blanket with a hot water bottle, or throwing of clothes, blankets, duvets and the like sweating like the proverbial pig. I never feel comfortable, temperature wise.
Pain - my right arm feels as though it has been passed through a mangle. The pain from collapsing veins is akin to very severe bruising. Currently my wrist feels as is I have sprained is and moving my hand in any direction hurts. Given that I am very right handed, this makes doing every day things much more laborious, even putting washing in the machine hurts.
My body not feeling like my own - I have bitten the inside of my mouth more in the last six months than in the previous six years. I think this is down to the fact that the inside of my mouth, especially my teeth do not feel like I think they used to. This is also linked to the cardboard taste as food does not feel the same in my mouth as it used to. My body also suddenly stops, I can be walking along quite happily and then a sudden and overwhelming wave of fatigue will engulf me. There is nothing I can do to overcome this other than stop.
Dried up mucous membranes - in the morning before I even open my eyes I have to wiggle them around so I can open my eyes without much pain. I have to unstick my tongue and lips from my gums and drink some water to lubricate my throat. I think this lack of moisture may also exacerbate the dry retching as sticking my tongue out more than a couple of millimetres feels the same as sticking your finger down your throat. Also I have noticed that I appear to have been suffering from a mild but chronic nose bleed. I suspect this is because the inside of my nose, which is also now hairless, has so little protection from the elements that it is effectively "chapped".
Generally I feel as though my life and body are not my own. Everything has to take my treatment into account. I realise that this is all for my own benefit but it is a little wearing after a while. I am having a few weeks off from stuff at the hospital, although I have to go for two heart tests to make sure I'm well enough for the next stage of my treatment.
I am really looking forward to the end of my treatment, which entails another 6 to 12 months of intravenous herceptin, if only because I really am totally fed up with people sticking needles in my right arm!
The Morning After The Night Before
Wednesday 16th February
I wake after a fitful night feeling and probably looking like Quasimodo. The pain from my shoulder/neck actually makes walking difficult.
My appointment is at 1pm and as per usual we arrive in plenty of time. I sit and wait fully expecting to have to have another blood test and then be sent home.
The nurse asks to weigh me. This is a good sign. Apparently my neutrophils are up to 2.43 which just goes to show you never can tell!
The session goes off without a hitch although I am generally more concerned about the pain from my shoulder. Then that's it, it's done. No more chemo - EVER!!!
In spite of being given copious quantities of anti-emetics I still throw up a lot.
I also throw up the next morning, which as you can appreciate was really grotty as there was nothing to throw up. I seem to suffer from dry retching more this time than ever before.
The problem with the last chemo is that people seem to think that I am fine immediately, however, it will be a good 3 to 4 weeks before I start feeling normal again and possibly my hair growing back.
I wake after a fitful night feeling and probably looking like Quasimodo. The pain from my shoulder/neck actually makes walking difficult.
My appointment is at 1pm and as per usual we arrive in plenty of time. I sit and wait fully expecting to have to have another blood test and then be sent home.
The nurse asks to weigh me. This is a good sign. Apparently my neutrophils are up to 2.43 which just goes to show you never can tell!
The session goes off without a hitch although I am generally more concerned about the pain from my shoulder. Then that's it, it's done. No more chemo - EVER!!!
In spite of being given copious quantities of anti-emetics I still throw up a lot.
I also throw up the next morning, which as you can appreciate was really grotty as there was nothing to throw up. I seem to suffer from dry retching more this time than ever before.
The problem with the last chemo is that people seem to think that I am fine immediately, however, it will be a good 3 to 4 weeks before I start feeling normal again and possibly my hair growing back.
The End Is Nigh
Tuesday 15th February
Today is the day of the final blood test. The staff at the blood clinic would certainly win awards for getting blood out of a stone, it would certainly be easier than trying to get it out of me!
The squeamish may wish to look away now.
She sticks the very small, baby needle in my arm and pulls on the syringe plunger. (The usual vacuum blood collector things cannot be used as they rely on some internal pressure of which I have none.) Little or no blood comes out, she wiggles the needle around and tries again, a little more blood comes, more wiggling and pulling and little by little enough blood is extracted together with a lot of bubbles!
I am convinced that, given I have spent the last fortnight feeling like death warmed up with a monumental cough and cold, my neutrophils will be too low and I won't be given chemo.
Later that night I am sitting quietly watching the TV when I develop suddenly the worst stiff neck ever. The pain radiates from the back of my left shoulder down my arm up my neck to the back of my head and even gives me a throbbing earache! I don't sleep well that night mainly because of the pain from my shoulder/neck and also because for the first time I am anxious about tomorrow's chemo.
Today is the day of the final blood test. The staff at the blood clinic would certainly win awards for getting blood out of a stone, it would certainly be easier than trying to get it out of me!
The squeamish may wish to look away now.
She sticks the very small, baby needle in my arm and pulls on the syringe plunger. (The usual vacuum blood collector things cannot be used as they rely on some internal pressure of which I have none.) Little or no blood comes out, she wiggles the needle around and tries again, a little more blood comes, more wiggling and pulling and little by little enough blood is extracted together with a lot of bubbles!
I am convinced that, given I have spent the last fortnight feeling like death warmed up with a monumental cough and cold, my neutrophils will be too low and I won't be given chemo.
Later that night I am sitting quietly watching the TV when I develop suddenly the worst stiff neck ever. The pain radiates from the back of my left shoulder down my arm up my neck to the back of my head and even gives me a throbbing earache! I don't sleep well that night mainly because of the pain from my shoulder/neck and also because for the first time I am anxious about tomorrow's chemo.
Monday, 7 February 2011
Machines and Menopause
Monday 7th February
You will note that once again there has been a long gap between postings. This is because firstly, as stated before, chemotherapy is nothing if not monotonous and secondly I have been quite poorly, more of which later.
So the penultimate session. I arrive and there is no one there, the temptation to simply run away was overwhelming, but I didn't.
Previously the chemotherapy is injected into a cannula by the nurse. This time however I was attached to a pump into which the nurse attached the syringes and the pump mixes the drugs with the saline and then pumped it into me.
This had a very pleasant result in that previously when the first few milliliters of the drug were pumped in by the nurse I was overcome by a huge wave of nausea, although I never actually threw up and once the first bit was in the rest went in without any effect. Using the pump I had absolutely no nausea at all, which was nice!
My two days after were spent doing the usual of sleeping, eating and taking various anti-emetics and steroids. In fact I felt so well that on Friday I almost felt as though I could have gone into work. But I quickly dismissed this idea. In general I felt much better than previously although this may have had something to do with the fact that I am now on three different anti-emetics! Unfortunately one of the side effects of anti-emetics is that not only do they stop stuff coming out of the top they also stop stuff coming out of the bottom!!! More dried fruit and psyllium husks! Normal service was resumed within about 4 days!!!
Monday (31st) I started to feel that I was going down with another cold. I wasn't too bothered as the one I had had over Christmas wasn't that bad, however by the evening I was feeling particularly grotty and decided that I wouldn't go to yoga the following day.
Tuesday was spent in bed feeling particularly sorry for myself. By this time I had not slept properly since the previous Tuesday and my throat was beginning to feel as though I had gargled with broken glass and acid. So I spent the whole day wallowing in self-pity and trying to catch up on a little sleep. I reckon that having a minor breakdown once every six months isn't too bad! By Wednesday, whilst my cold wasn't much better my general mental well being was much improved.
On the whole my sleep has been appalling. This is down to several things, my cold, insomnia and the glory which are hot flushes!!! Chemotherapy puts you into the menopause with a vengeance. So far the only symptoms have been the hot flushes. They are however most annoying. I find that I also appear to be suffering from cold flushes. My body temperature is never stable. Whilst cold flushes are much easier to deal with, I just wrap up or snuggle down until they pass, hot flushes are a completely different kettle of fish. My head feels as though a thousand pointy footed ants are marching across my head, and no amount of fanning or removal of clothes alleviates the symptoms. If I am asleep it wakes me up and I have to throw off all the bedclothes and lie spread eagled until it passes and then I feel really cold so I have to throw on all the bedclothes. This can happen up to 3 or 4 times a night so you can see why I haven't been sleeping too well recently. What is possibly the most irritating aspect of hot flushes is that they occur much more frequently during the night than during the day, for every hot flush I have during the day I will have at least three after 8pm, which isn't too bad if I am up and awake but a pain in the proverbial if I am not.
Assuming that my cold does not prevent my next chemotherapy session going ahead as scheduled, you should all hear a very loud sigh of relief on Wednesday 16th February.
You will note that once again there has been a long gap between postings. This is because firstly, as stated before, chemotherapy is nothing if not monotonous and secondly I have been quite poorly, more of which later.
So the penultimate session. I arrive and there is no one there, the temptation to simply run away was overwhelming, but I didn't.
Previously the chemotherapy is injected into a cannula by the nurse. This time however I was attached to a pump into which the nurse attached the syringes and the pump mixes the drugs with the saline and then pumped it into me.
This had a very pleasant result in that previously when the first few milliliters of the drug were pumped in by the nurse I was overcome by a huge wave of nausea, although I never actually threw up and once the first bit was in the rest went in without any effect. Using the pump I had absolutely no nausea at all, which was nice!
My two days after were spent doing the usual of sleeping, eating and taking various anti-emetics and steroids. In fact I felt so well that on Friday I almost felt as though I could have gone into work. But I quickly dismissed this idea. In general I felt much better than previously although this may have had something to do with the fact that I am now on three different anti-emetics! Unfortunately one of the side effects of anti-emetics is that not only do they stop stuff coming out of the top they also stop stuff coming out of the bottom!!! More dried fruit and psyllium husks! Normal service was resumed within about 4 days!!!
Monday (31st) I started to feel that I was going down with another cold. I wasn't too bothered as the one I had had over Christmas wasn't that bad, however by the evening I was feeling particularly grotty and decided that I wouldn't go to yoga the following day.
Tuesday was spent in bed feeling particularly sorry for myself. By this time I had not slept properly since the previous Tuesday and my throat was beginning to feel as though I had gargled with broken glass and acid. So I spent the whole day wallowing in self-pity and trying to catch up on a little sleep. I reckon that having a minor breakdown once every six months isn't too bad! By Wednesday, whilst my cold wasn't much better my general mental well being was much improved.
On the whole my sleep has been appalling. This is down to several things, my cold, insomnia and the glory which are hot flushes!!! Chemotherapy puts you into the menopause with a vengeance. So far the only symptoms have been the hot flushes. They are however most annoying. I find that I also appear to be suffering from cold flushes. My body temperature is never stable. Whilst cold flushes are much easier to deal with, I just wrap up or snuggle down until they pass, hot flushes are a completely different kettle of fish. My head feels as though a thousand pointy footed ants are marching across my head, and no amount of fanning or removal of clothes alleviates the symptoms. If I am asleep it wakes me up and I have to throw off all the bedclothes and lie spread eagled until it passes and then I feel really cold so I have to throw on all the bedclothes. This can happen up to 3 or 4 times a night so you can see why I haven't been sleeping too well recently. What is possibly the most irritating aspect of hot flushes is that they occur much more frequently during the night than during the day, for every hot flush I have during the day I will have at least three after 8pm, which isn't too bad if I am up and awake but a pain in the proverbial if I am not.
Assuming that my cold does not prevent my next chemotherapy session going ahead as scheduled, you should all hear a very loud sigh of relief on Wednesday 16th February.
Wednesday, 12 January 2011
The Ups & Downs, Pro & Cons, Ins & Outs Of Having Little Or No Hair
Wednesday 12th January
So I have had very, very short, sparsely populated hair for a couple of weeks now. As I said previously Hannah had shaved off what was left of my hair using a number 3, so it is about half an inch long. This means that what now falls out is less noticeable and hopefully I won't have to shave it all off, but we shall see.
From my point of view nothing has changed. My head doesn't feel any different really. Occasionally I feel a little draughty around the back of my neck but that's about it. I am even getting used to seeing my altered reflection in the mirror.
Advantages of having no hair:
I never have a bad hair day.
The well know messy bed hair gorilla has stopped visiting.
It takes nano-seconds to dry my "hair".
I take even less time in the shower.
Wearing hats does not result in "hat hair".
Reduction in the amount of shampoo and conditioner used, obviously.
Disadvantages of having no hair:
None that I can think of, currently.
However, I am reliably informed by my brother (whom I now resemble) that banging your head hurts a lot more without the padding of hair and obviously sun burn is a risk, although not in the weather we're having at the moment!
So apart from wearing a woolly hat to keep my head warm when I go out I do not wear scarves, wigs or anything else to cover up my baldness.
Thus I have come to the conclusion that I possibly the least vain person I know as I am supremely unbothered by my current lack of hair. This may be because I am fairly certain that this is a temporary state of affairs. Or perhaps I am the vainest person I know as the thought of wearing a wig just fills me with despair.
Either way I came to the conclusion very quickly that when I am out and about wearing a woolly hat is easier as when my head gets too hot (which it does quite quickly, especially when entering overheated shops) taking off my hat is slightly less startling to those around me that whipping off a wig, which is infinitely more uncomfortable and hotter than my woolly hat.
So I have had very, very short, sparsely populated hair for a couple of weeks now. As I said previously Hannah had shaved off what was left of my hair using a number 3, so it is about half an inch long. This means that what now falls out is less noticeable and hopefully I won't have to shave it all off, but we shall see.
From my point of view nothing has changed. My head doesn't feel any different really. Occasionally I feel a little draughty around the back of my neck but that's about it. I am even getting used to seeing my altered reflection in the mirror.
Advantages of having no hair:
I never have a bad hair day.
The well know messy bed hair gorilla has stopped visiting.
It takes nano-seconds to dry my "hair".
I take even less time in the shower.
Wearing hats does not result in "hat hair".
Reduction in the amount of shampoo and conditioner used, obviously.
Disadvantages of having no hair:
None that I can think of, currently.
However, I am reliably informed by my brother (whom I now resemble) that banging your head hurts a lot more without the padding of hair and obviously sun burn is a risk, although not in the weather we're having at the moment!
So apart from wearing a woolly hat to keep my head warm when I go out I do not wear scarves, wigs or anything else to cover up my baldness.
Thus I have come to the conclusion that I possibly the least vain person I know as I am supremely unbothered by my current lack of hair. This may be because I am fairly certain that this is a temporary state of affairs. Or perhaps I am the vainest person I know as the thought of wearing a wig just fills me with despair.
Either way I came to the conclusion very quickly that when I am out and about wearing a woolly hat is easier as when my head gets too hot (which it does quite quickly, especially when entering overheated shops) taking off my hat is slightly less startling to those around me that whipping off a wig, which is infinitely more uncomfortable and hotter than my woolly hat.
Sunday, 9 January 2011
Well That's My Theory Down The Pan...Literally!
Sunday 9th January
My last chemo was on Friday 31st December. They had to use a new vein as my previous one has completely given up the ghost. I do wonder where the blood goes when a vein collapses. Answers on a postcard.
Anyway, I had assumed that since I had not thrown up previously that the cold cap was responsible for my nausea and sickness. How wrong I was! I threw up more this time than all the previous sessions put together and in fact generally felt much worse. Indeed as you will appreciate throwing up for the umpteenth time meant that I was throwing up on an empty stomach which is really the most awful thing ever. Added to this was the fact that any anti-emetics I had taken were chucked up as well before they had any chance to take effect, which probably made things even worse.
I can only attribute this to the following factors. Firstly I don't think I drank nearly as much water as previously and indeed Terry did comment on this after the event! Secondly, I usually have my chemo on a Wednesday so on Thursday and Friday I am alone all day and can, if not actually sleep, completely "zone out" as there is no one in the house to disturb me. This time however my two days after chemo were the weekend and although I did spend most of my time in bed the fact that there were people in the house, albeit quite quiet, I do not feel that I rested as much as I usually do. Thirdly I was getting over a cold and the effects of chemo might be cumulative, which doesn't bode well for the next two!
In general I have felt much more tired this time and I suspect this is entirely down to the lack sleep/rest in the immediate aftermath of the chemo.
Fortunately my next chemo is scheduled for Wednesday 26th January so hopefully all the above "problems" will be obviated.
The light at the end of the tunnel is nearly visible although Wednesday 16th February seems a long way off at times.
My last chemo was on Friday 31st December. They had to use a new vein as my previous one has completely given up the ghost. I do wonder where the blood goes when a vein collapses. Answers on a postcard.
Anyway, I had assumed that since I had not thrown up previously that the cold cap was responsible for my nausea and sickness. How wrong I was! I threw up more this time than all the previous sessions put together and in fact generally felt much worse. Indeed as you will appreciate throwing up for the umpteenth time meant that I was throwing up on an empty stomach which is really the most awful thing ever. Added to this was the fact that any anti-emetics I had taken were chucked up as well before they had any chance to take effect, which probably made things even worse.
I can only attribute this to the following factors. Firstly I don't think I drank nearly as much water as previously and indeed Terry did comment on this after the event! Secondly, I usually have my chemo on a Wednesday so on Thursday and Friday I am alone all day and can, if not actually sleep, completely "zone out" as there is no one in the house to disturb me. This time however my two days after chemo were the weekend and although I did spend most of my time in bed the fact that there were people in the house, albeit quite quiet, I do not feel that I rested as much as I usually do. Thirdly I was getting over a cold and the effects of chemo might be cumulative, which doesn't bode well for the next two!
In general I have felt much more tired this time and I suspect this is entirely down to the lack sleep/rest in the immediate aftermath of the chemo.
Fortunately my next chemo is scheduled for Wednesday 26th January so hopefully all the above "problems" will be obviated.
The light at the end of the tunnel is nearly visible although Wednesday 16th February seems a long way off at times.
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