I will deal with these in reverse order.
I have had some pain in my jaw, principally the left hand side, on and off for most of my treatment. As I have probably said, it is never really a good idea to read all the side effects of the drugs that are given as it is at best depressing and at worst incredibly alarming. The bone strengthener that I am given, Zometa, has a bizarre side effect of destroying the jaw bone. Whilst enjoying my French sojourn I finally worked out why my jaw was hurting or at least what was happening. Basically my lower jaw was gradually creeping forward meaning that my back teeth weren't coming together and my front teeth were coming together in a very annoying manner. Yawning was painful and I would get terrible cramping around my lower left jaw. Although, with a little bit of massaging, this alleviated the pain and my jaw kind of went back to where it should be. At my pre-assessment I mentioned all of this to the nurse and she took note. On the day of my treatment I mentioned it again and much consulting of the consultant took place. The upshot was it was unlikely to be osteonecrosis more likely an increase of calcium. It was decided not to give me Zometa this time round. I have had it every 3 weeks for about 11 rounds. Apparently, it should be given every 4 weeks, so I am well covered. Suffice it to say that even with the jaw pain my ability to talk and eat was not impaired in any way. No surprise there then! Well a week on and the pain has completely gone and my jaw is back to normal. As to whether I will continue with Zometa in the future I don't know.
My new drug, Kadcyla, has the most delightful side effect of constipation. Not only is this easier to spell than diarrhoea, it also means that for the first time in about 8 months I do not have to plan my life around where the nearest loo is. Also, I didn't realise how much of my time has been spent sitting on the loo. I have so much free time and my nights are far less disturbed. The judicious use of psyllium husks has made everything trot along nicely.
A week ago I had my first round of Kadcyla. My appointment was for 9.30am. Surprise, surprise my drugs didn't come up from the pharmacy until 11am. I have absolutely no idea what the hospital pharmacy do or how they are organised, or if they are organised. They must know what drugs are needed and when. I appreciate that most of the drugs used in the chemotherapy unit cannot be made up too far in advance as they have a very limited shelf life, but what is the point of having a 9.30am appointment if nothing happens for and hour and a half! The nurse decided once it had arrived that perhaps, given half of what I was about to be given is Herceptin, to which I am allergic, I should be given my usual premeds of Piriton and hydrocortisone, which he could have given me in the intervening 90 minutes. The first dose has to be given over 90 minutes and then I have to sit for an hour or so to see if anything interesting happens. Well nothing interesting happened so I went home.
The following few days I suffered from a slight headache which got progressively worse as the day wore on and my teeth and jaw ached as well. Both of these were easily dealt with by taking my preferred painkiller of co-codamol. The fatigue I had is totally different from previously as it responds well to an afternoon snooze. Overall, Kadcyla seems eminently do-able. I can only hope that the chemicals are doing their stuff and killing the cancer cells.
Friday, 14 October 2016
Friday, 30 September 2016
The Best and The Worst of The NHS
A little under a week after my treatment, on Tuesday night I got a pain in my right hand side. Clearly to me this meant that my liver mets were playing up. I was due to go to France that Friday morning, so I phoned the MacMillan people and asked what I should do as the pain wasn't getting any better and I didn't really want to spend my French holiday sampling the delights of the French health care system.
I had two options, go to A&E or go to the drop in breast clinic on Thursday morning. I opted for the former as Thursday seemed a little too close to departure and I wasn't sure that I could survive another day of pain.
I arrived at about 5.40pm on Wednesday. It was quite busy but saying the magic words "incurable cancer" had the desired effect and I was called in within a few minutes. I explained everything about my cancer and the pain. I had my blood pressure taken and a cannula fitted from which they took many, many blood samples. I was taken to a room and hopped up on the gurney. As a matter of course I was given antibiotics, standard protocol for cancer patients in A&E.
A very lovely A&E doctor came and saw me, took notes and generally assessed me. She then decided that a surgical consult was in order in case it was something like gallstones. I did explain that I had had a full CT scan within the last 3 weeks, but this didn't seem to make any difference. I was sent of for a chest and abdomen X-ray, which revealed nothing unusual. Once the surgical chap came he decided that an ultrasound was in order. He would order one for the following morning. Ultrasound is not 24/7, they work normal office hours. The time by now is past mid-night. I have done an awful lot of waiting around. I next have to wait for the medical doctor to come and see me. There are 4 of them on duty, but I keep being bumped down the queue by more urgent cases, which is fair enough. In retrospect what I should have done is discharged myself at about 2am, but I didn't. Trying to get information was nigh on impossible, No-one knew what was happening. The ultrasound couldn't be booked until the next morning. The ultrasound had been booked for 8am. All very frustrating and confusing.
I should point out at this juncture that every individual was absolutely lovely and I cannot fault the care they gave me.
By 6am I had had more than enough and decided that I was going to discharge myself, go home, have a quick kip and return for my 8am ultrasound. Therein lies the problem, in order to do this you need to see a medical doctor, which again takes time. They were reluctant to let me go as they wanted me to stay put until 8am. I did escape, having signed a disclaimer.
I returned at 8am to the surgical ward and sit and wait, once again my blood pressure was taken, which as you can probably imagine, was a little on the high side. A nurse took pity on me and found me a bed so I could lie down and have a snooze.
I am then told that I cannot have a scan until the head surgeon chap has done rounds. It is now well past 10am. He arrives I re-tell my story again, mentioning the recent CT scan. His pronouncement was a scan was unnecessary and it was just progression of disease and I could go home!
As it happens the MacMillan nurse phoned and said that it was probably an inflammation of my liver capsule which would almost certainly be helped by taking some steroid. So I popped down to the drop in breast clinic, collect the prescription and go on my merry way.
My issue with this whole incident is that I was effectively bed blocking for most of the night. The medical people, with the exception of the head surgeon, seem to hear neighing, smell horse manure and assume it's a zebra. The bureaucracy is beyond belief and most of the time the right hand does not know what the left hand is doing.
As I have said I cannot fault the individual staff who were all unfailingly professional, patient and caring.
As a side note for Jeremy Hunt, there is very little point in making the junior doctors do 24/7 (which as far as I can see they do already), if the rest of the hospital is working office hours.
I had two options, go to A&E or go to the drop in breast clinic on Thursday morning. I opted for the former as Thursday seemed a little too close to departure and I wasn't sure that I could survive another day of pain.
I arrived at about 5.40pm on Wednesday. It was quite busy but saying the magic words "incurable cancer" had the desired effect and I was called in within a few minutes. I explained everything about my cancer and the pain. I had my blood pressure taken and a cannula fitted from which they took many, many blood samples. I was taken to a room and hopped up on the gurney. As a matter of course I was given antibiotics, standard protocol for cancer patients in A&E.
A very lovely A&E doctor came and saw me, took notes and generally assessed me. She then decided that a surgical consult was in order in case it was something like gallstones. I did explain that I had had a full CT scan within the last 3 weeks, but this didn't seem to make any difference. I was sent of for a chest and abdomen X-ray, which revealed nothing unusual. Once the surgical chap came he decided that an ultrasound was in order. He would order one for the following morning. Ultrasound is not 24/7, they work normal office hours. The time by now is past mid-night. I have done an awful lot of waiting around. I next have to wait for the medical doctor to come and see me. There are 4 of them on duty, but I keep being bumped down the queue by more urgent cases, which is fair enough. In retrospect what I should have done is discharged myself at about 2am, but I didn't. Trying to get information was nigh on impossible, No-one knew what was happening. The ultrasound couldn't be booked until the next morning. The ultrasound had been booked for 8am. All very frustrating and confusing.
I should point out at this juncture that every individual was absolutely lovely and I cannot fault the care they gave me.
By 6am I had had more than enough and decided that I was going to discharge myself, go home, have a quick kip and return for my 8am ultrasound. Therein lies the problem, in order to do this you need to see a medical doctor, which again takes time. They were reluctant to let me go as they wanted me to stay put until 8am. I did escape, having signed a disclaimer.
I returned at 8am to the surgical ward and sit and wait, once again my blood pressure was taken, which as you can probably imagine, was a little on the high side. A nurse took pity on me and found me a bed so I could lie down and have a snooze.
I am then told that I cannot have a scan until the head surgeon chap has done rounds. It is now well past 10am. He arrives I re-tell my story again, mentioning the recent CT scan. His pronouncement was a scan was unnecessary and it was just progression of disease and I could go home!
As it happens the MacMillan nurse phoned and said that it was probably an inflammation of my liver capsule which would almost certainly be helped by taking some steroid. So I popped down to the drop in breast clinic, collect the prescription and go on my merry way.
My issue with this whole incident is that I was effectively bed blocking for most of the night. The medical people, with the exception of the head surgeon, seem to hear neighing, smell horse manure and assume it's a zebra. The bureaucracy is beyond belief and most of the time the right hand does not know what the left hand is doing.
As I have said I cannot fault the individual staff who were all unfailingly professional, patient and caring.
As a side note for Jeremy Hunt, there is very little point in making the junior doctors do 24/7 (which as far as I can see they do already), if the rest of the hospital is working office hours.
Friday, 16 September 2016
Bad News, Bad News, Good News, Good News
Let me deal with the bad news first. The cancer has spread. The little "blips" that could be seen on my lungs last time turn out not to be caused by radiotherapy, but cancer. Strangely although I am a little breathless I am not any more breathless than usual. The tumours are also in my liver.
Good news the bone tumours are stable, but this is to be expected because bone mets are slow to progress. Once again my oncologist the master of understatement said this was disappointing. I have to admit that I was expecting the worst so it wasn't too much of a shock. Although my oncologist seems to think that I will fall to bits once the news has sunk in. It has and I haven't. Telling my children was hard but they fortunately have the same fatalistic attitude of their parents. Shit happens, deal with it. As I have pointed out on numerous occasions hundreds of people leave their homes every morning never to return.
More good news I have once again won the postcode lottery. I will be treated with Kadcyla. This is a combination of a monoclonal and chemotherapy drug. Basically the monoclonal attacks the cancer cell receptors and effectively injects the chemotherapy into the drug. This means that the chemotherapy side effects are less severe so I am hopeful that apart from the obligatory fatigue and possible nausea I won't lose my hair, although I'm not counting my chickens or my hair yet.
Wednesday, 7 September 2016
Epiphany, Alarm Clocks and Unpredictability
For a change I thought I'd start at the end.
I had my treatment a little under a fortnight ago. Two days afterwards I was at a BBQ and I was on top form, not too achy, good appetite and not fatigued. It's amazing how pleased people were to see me, which was very nice. Two days later I felt as though I had been hit by a freight train and it has taken over a week to start to feel even vaguely normal again. The treatment before this one saw me on the 5th day in bed or on the loo. I'll leave the details to your imagination. The following day I was fine.
When I was on chemotherapy there was a total predictability about what state I would be in on any particular day. Day 3 in bed with the world's most painful knees. Days 4 to 11 general pain and achiness that gradually abated. Days 12 to 21 almost normal. This time round there is no such certainty which does make planning rather difficult. I hope that there will be some stability and certainty sooner rather than later.
My epiphany is related to my alarm clock. We have all woken up in the dark before our alarm clock has gone off. At this point we have a choice to either turn over and go back to sleep in the blissful ignorance of not knowing exactly how long it is until the dreaded alarm goes off, which in my opinion makes getting back to sleep easier. Or we can look at the clock and see exactly how long we have until the dreaded alarm clock goes off which then makes it a race to get to sleep as quickly as possible. It this scenario ignorance is definitely bliss. What has this to do with my current condition I hear you ask. Well, we're all going to die and most of us don't know when or how. Those of you who have not been told that they have incurable cancer have woken up before the alarm and not looked to see what time it is. I have seen the time and am desperately trying to get back to sleep before the alarm goes off.
I had my treatment a little under a fortnight ago. Two days afterwards I was at a BBQ and I was on top form, not too achy, good appetite and not fatigued. It's amazing how pleased people were to see me, which was very nice. Two days later I felt as though I had been hit by a freight train and it has taken over a week to start to feel even vaguely normal again. The treatment before this one saw me on the 5th day in bed or on the loo. I'll leave the details to your imagination. The following day I was fine.
When I was on chemotherapy there was a total predictability about what state I would be in on any particular day. Day 3 in bed with the world's most painful knees. Days 4 to 11 general pain and achiness that gradually abated. Days 12 to 21 almost normal. This time round there is no such certainty which does make planning rather difficult. I hope that there will be some stability and certainty sooner rather than later.
My epiphany is related to my alarm clock. We have all woken up in the dark before our alarm clock has gone off. At this point we have a choice to either turn over and go back to sleep in the blissful ignorance of not knowing exactly how long it is until the dreaded alarm goes off, which in my opinion makes getting back to sleep easier. Or we can look at the clock and see exactly how long we have until the dreaded alarm clock goes off which then makes it a race to get to sleep as quickly as possible. It this scenario ignorance is definitely bliss. What has this to do with my current condition I hear you ask. Well, we're all going to die and most of us don't know when or how. Those of you who have not been told that they have incurable cancer have woken up before the alarm and not looked to see what time it is. I have seen the time and am desperately trying to get back to sleep before the alarm goes off.
Saturday, 27 August 2016
Getting Used To It
My last post was, to say the least, a little on the miserable side. Well dear reader you will be pleased to hear that I am in a much happier frame of mind.
Nothing much has occurred to promote this mood I think it is just the swings and roundabouts of having cancer and its treatment.
As you can imagine death preoccupies my mind a lot and I ponder on whether part of what makes my current condition so irritating is the fact that I know I will probably die prematurely (although by prematurely I'm aiming for my mid 70s rather than my family average of mid 80s). Many hundreds of people get up every morning and never make it home. Is ignorance bliss in this instance?
I had my 10th treatment this week, which not only went without incident but also went extremely swiftly. I went on my own because my lovely husband was away on business in Amsterdam. At least this is what he told me! I did consider taking someone with me, but decided against it as it is mind numbingly boring and I would feel slightly obliged to "entertain" the person who came with me. This leads to the obvious conclusion that I don't mind boring the pants off my husband. Whilst this is partially true, he has signed up for the in sickness and health bit, so it goes with the job. Also we're very good at sitting in companionable silence and he doesn't feel the need to ensure that I am all right all the time, so he disappears off from time to time, usually to talk to work.
My general aches and pains are now very much a part of my life. As I said to the nurse during assessment, I feel like a fish and chip shop cod, lightly battered.
Whilst I would obviously rather not be doing this, I am finding that I can cope with the side effects quite well. So my new normal isn't really all that bad.
Nothing much has occurred to promote this mood I think it is just the swings and roundabouts of having cancer and its treatment.
As you can imagine death preoccupies my mind a lot and I ponder on whether part of what makes my current condition so irritating is the fact that I know I will probably die prematurely (although by prematurely I'm aiming for my mid 70s rather than my family average of mid 80s). Many hundreds of people get up every morning and never make it home. Is ignorance bliss in this instance?
I had my 10th treatment this week, which not only went without incident but also went extremely swiftly. I went on my own because my lovely husband was away on business in Amsterdam. At least this is what he told me! I did consider taking someone with me, but decided against it as it is mind numbingly boring and I would feel slightly obliged to "entertain" the person who came with me. This leads to the obvious conclusion that I don't mind boring the pants off my husband. Whilst this is partially true, he has signed up for the in sickness and health bit, so it goes with the job. Also we're very good at sitting in companionable silence and he doesn't feel the need to ensure that I am all right all the time, so he disappears off from time to time, usually to talk to work.
My general aches and pains are now very much a part of my life. As I said to the nurse during assessment, I feel like a fish and chip shop cod, lightly battered.
Whilst I would obviously rather not be doing this, I am finding that I can cope with the side effects quite well. So my new normal isn't really all that bad.
Saturday, 13 August 2016
General Gripes and Major Moans
Firstly the caveat.
These are my opinions, I am fully aware that not everyone shares my opinions. Further, I am also aware that people find dealing with people with cancer as difficult as dealing with the bereaved. They hope that they are saying the "right" thing.
I am not brave, I have incurable cancer. I am not fighting anything, I have incurable cancer. I do not necessarily have a positive attitude, I have incurable cancer.
I go to the hospital and am treated with the best that medical science and the NHS can provide. I am an unwilling, but grateful participant in the joys that are cancer treatment.
I do not need to be wished good luck when I go for the innumerable scans. I need good science. If anything it is the technicians who need the luck in finding my last remaining usable vein.
I also do not need to be wished good luck when I see the oncologist for the results of my scans. It's way too late by then.
I realise that all of the above makes me seem like an ungrateful curmudgeon and in some respects I am. It's not that I am ungrateful for people's good wishes, I just get a little fed up with being told how brave I am, that I will fight the good fight, that I will get better, in spite of the fact that I have incurable cancer.
I think what I would like is for people to realise that platitudes, for that is what they are, can be very annoying. What I am going through is a (hopefully) long, hard slog. It is tedious, and mentally and physically draining. The rest of my life will be lived in 3 weekly segments, punctuated with 4 monthly scans. I hope for the best and prepare for the worst.
I am more than happy to talk to you about what I am going through. If you ask me how I am, I will tell you in glorious technicoloured detail.
If you want to know what the "right" thing is to say, talk to me like a normal human being, not a cancer victim.
My general attitude to life is, shit happens, deal with it.
These are my opinions, I am fully aware that not everyone shares my opinions. Further, I am also aware that people find dealing with people with cancer as difficult as dealing with the bereaved. They hope that they are saying the "right" thing.
I am not brave, I have incurable cancer. I am not fighting anything, I have incurable cancer. I do not necessarily have a positive attitude, I have incurable cancer.
I go to the hospital and am treated with the best that medical science and the NHS can provide. I am an unwilling, but grateful participant in the joys that are cancer treatment.
I do not need to be wished good luck when I go for the innumerable scans. I need good science. If anything it is the technicians who need the luck in finding my last remaining usable vein.
I also do not need to be wished good luck when I see the oncologist for the results of my scans. It's way too late by then.
I realise that all of the above makes me seem like an ungrateful curmudgeon and in some respects I am. It's not that I am ungrateful for people's good wishes, I just get a little fed up with being told how brave I am, that I will fight the good fight, that I will get better, in spite of the fact that I have incurable cancer.
I think what I would like is for people to realise that platitudes, for that is what they are, can be very annoying. What I am going through is a (hopefully) long, hard slog. It is tedious, and mentally and physically draining. The rest of my life will be lived in 3 weekly segments, punctuated with 4 monthly scans. I hope for the best and prepare for the worst.
I am more than happy to talk to you about what I am going through. If you ask me how I am, I will tell you in glorious technicoloured detail.
If you want to know what the "right" thing is to say, talk to me like a normal human being, not a cancer victim.
My general attitude to life is, shit happens, deal with it.
Tuesday, 2 August 2016
Counting My Blessings
I belong to a couple of forums for those unfortunate enough to have secondary breast cancer. They are thought provoking places to visit.
They have interesting information about our condition and the various treatments. A place to compare and contrast.
The more I read, the more I realise that under the circumstances I'm not doing too badly. As I have said before I don't especially like playing the Pollyanna "Glad Game", but at times it's hard not count my blessings.
Firstly I was not fobbed off by my GP when I went about my back pain. Many are with disastrous results. This meant that the spread of the cancer is not as bad as it could have been. The medical staff at my hospital are without exception brilliant, something that I would expect at all hospitals, but I have discovered this is not necessarily always the case. The nurses and technicians listen when I point out where my last surviving vein is, rather than disregarding my experience and ferreting about for another unusable one. My oncologist treats me and my husband as the intelligent human beings that we are. This is also not always the case, indeed some oncologists don't even look at their patients when they are talking to them, let alone keep them fully informed. I have also "won" the postcode lottery as the treatment I am receiving is not available everywhere. All of this before I have even got on to the joys of the side effects. It is difficult to separate out what is caused by the treatment and what is caused by the cancer but it really doesn't matter when you are being afflicted by them. I have not had any nausea, my delightfully overactive bowels, which is a very common side effect, have eased up, my general aches and pains are easily controlled with painkillers, and whilst I am by no stretch of the imagination sailing through this, I can see that I am having a much easier time of it than most.
My friends and relations have been and are being lovely. By and large they are treating me as they always have, rather than with the sympathetic head tilt "how are you?", which makes my life delightfully ordinary. So far none of them has got bored with the fact that I am not dying. If this sounds surprising then it is because there are people out there who assume that because their friend who has incurable cancer is still around then they must be faking it. Clearly some people just aren't dying quickly enough!
They have interesting information about our condition and the various treatments. A place to compare and contrast.
The more I read, the more I realise that under the circumstances I'm not doing too badly. As I have said before I don't especially like playing the Pollyanna "Glad Game", but at times it's hard not count my blessings.
Firstly I was not fobbed off by my GP when I went about my back pain. Many are with disastrous results. This meant that the spread of the cancer is not as bad as it could have been. The medical staff at my hospital are without exception brilliant, something that I would expect at all hospitals, but I have discovered this is not necessarily always the case. The nurses and technicians listen when I point out where my last surviving vein is, rather than disregarding my experience and ferreting about for another unusable one. My oncologist treats me and my husband as the intelligent human beings that we are. This is also not always the case, indeed some oncologists don't even look at their patients when they are talking to them, let alone keep them fully informed. I have also "won" the postcode lottery as the treatment I am receiving is not available everywhere. All of this before I have even got on to the joys of the side effects. It is difficult to separate out what is caused by the treatment and what is caused by the cancer but it really doesn't matter when you are being afflicted by them. I have not had any nausea, my delightfully overactive bowels, which is a very common side effect, have eased up, my general aches and pains are easily controlled with painkillers, and whilst I am by no stretch of the imagination sailing through this, I can see that I am having a much easier time of it than most.
My friends and relations have been and are being lovely. By and large they are treating me as they always have, rather than with the sympathetic head tilt "how are you?", which makes my life delightfully ordinary. So far none of them has got bored with the fact that I am not dying. If this sounds surprising then it is because there are people out there who assume that because their friend who has incurable cancer is still around then they must be faking it. Clearly some people just aren't dying quickly enough!
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