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!
Tuesday, 2 August 2016
Saturday, 30 July 2016
My Not So Brief History Of Fatigue
Those of you who have being paying attention will know that I work part-time. In the world of cancer and fatigue this is a good thing as will become apparent.
Fatigue is not the same as tiredness or sleepiness. It can creep up on you slowly or waylay you like a lightning strike. The former is slightly easier to deal with as it gives you a little (a very little) time to find somewhere to sit or lie down. The latter is nothing short of debilitating. With this fatigue there is such a thing as not sitting down enough. I have often been sitting at the dining table and had to move to the sofa as sitting in an upright chair is simply too much effort.
In general I try to have an afternoon snooze as often as I can. Indeed I quite often plan my week around my afternoon naps. This is not self-indulgent but absolutely necessary. I have two full days a week in the office and have on occasion left a bit early as I have been completely knackered. Fortunately I have a very understanding boss, who clearly realises on those occasions that if I were to stay for the full day any work that I produce would be less than my usual brilliant output. But by and large, especially since I have stopped having the chemotherapy, I manage to complete my work days.
My other days are spent doing life. Hospital appointments, seeing my mother, having a social and family life, plumber visits, and so on. Some of these are relatively immovable, such as my lunch with my mother, although on those days I know I will get a snooze. The others I have to try to schedule for mid-morning so that I have to energy to deal with them. Evening events are do-able as long as I haven't had a busy day. Again it is all a matter of planning.
This week I went to visit a dear friend in the wilds of "up north" although technically I think she is in the Midlands, but it's north of Watford, so it's "up north". I had a lovely time catching up, sitting around chatting, eating, drinking and playing with her 3 new kittens. The drive there and back was not too stressful and was a little over 90 minutes each way and I stopped of briefly both there and back at the motorway services. I left at about 9am and got home at about 6pm. I felt fine. The following day I was in the office and apart from a slight post lunch slump I was OK. The day after that, I got up went shopping, had breakfast and then at about 10.30am I was beyond shattered. I decided that the only option was to go back to bed. Even sitting on the sofa was not restful enough. I slept soundly until lunchtime, got up had lunch, and went back for more snoozing. Only after my second snooze did I feel at all fine. I can only deduce that two days on the trot with no snoozing is likely to catch up with me big time.
It is obvious to me that were I to have a full-time job, I would have to stop working or at the very least reduce my hours considerably as I simply would not be able to cope. Work is necessary both from a financial perspective and a self-worth point of view. Having a part-time job not only gives my life some structure it also keeps me in the "real" world, away from a life of hospital visits, sympathetic looks, and being all-consumed by cancer.
Cancer, its associated treatment and its side effects are the enemy of spontaneity. Which is fine if, like me you are not inherently spontaneous, but even for me the rigours of planning my life can be a bit wearing.
Fatigue is not the same as tiredness or sleepiness. It can creep up on you slowly or waylay you like a lightning strike. The former is slightly easier to deal with as it gives you a little (a very little) time to find somewhere to sit or lie down. The latter is nothing short of debilitating. With this fatigue there is such a thing as not sitting down enough. I have often been sitting at the dining table and had to move to the sofa as sitting in an upright chair is simply too much effort.
In general I try to have an afternoon snooze as often as I can. Indeed I quite often plan my week around my afternoon naps. This is not self-indulgent but absolutely necessary. I have two full days a week in the office and have on occasion left a bit early as I have been completely knackered. Fortunately I have a very understanding boss, who clearly realises on those occasions that if I were to stay for the full day any work that I produce would be less than my usual brilliant output. But by and large, especially since I have stopped having the chemotherapy, I manage to complete my work days.
My other days are spent doing life. Hospital appointments, seeing my mother, having a social and family life, plumber visits, and so on. Some of these are relatively immovable, such as my lunch with my mother, although on those days I know I will get a snooze. The others I have to try to schedule for mid-morning so that I have to energy to deal with them. Evening events are do-able as long as I haven't had a busy day. Again it is all a matter of planning.
This week I went to visit a dear friend in the wilds of "up north" although technically I think she is in the Midlands, but it's north of Watford, so it's "up north". I had a lovely time catching up, sitting around chatting, eating, drinking and playing with her 3 new kittens. The drive there and back was not too stressful and was a little over 90 minutes each way and I stopped of briefly both there and back at the motorway services. I left at about 9am and got home at about 6pm. I felt fine. The following day I was in the office and apart from a slight post lunch slump I was OK. The day after that, I got up went shopping, had breakfast and then at about 10.30am I was beyond shattered. I decided that the only option was to go back to bed. Even sitting on the sofa was not restful enough. I slept soundly until lunchtime, got up had lunch, and went back for more snoozing. Only after my second snooze did I feel at all fine. I can only deduce that two days on the trot with no snoozing is likely to catch up with me big time.
It is obvious to me that were I to have a full-time job, I would have to stop working or at the very least reduce my hours considerably as I simply would not be able to cope. Work is necessary both from a financial perspective and a self-worth point of view. Having a part-time job not only gives my life some structure it also keeps me in the "real" world, away from a life of hospital visits, sympathetic looks, and being all-consumed by cancer.
Cancer, its associated treatment and its side effects are the enemy of spontaneity. Which is fine if, like me you are not inherently spontaneous, but even for me the rigours of planning my life can be a bit wearing.
Tuesday, 19 July 2016
Hair It Comes and The Joy Of Forums
I had my 8th round of treatment last week, this is the second one without chemotherapy. Fortunately the nurse managed to get blood out of my portacath which was a huge relief. The treatment went by quite quickly even though there was the obligatory waiting for the drugs to come up to the unit.
The side effects appear to be virtually non-existent. The peripheral neuropathy is slowly disappearing, my overactive bowels are getting less overactive, my fatigue is its usual self in that it comes and goes without warning and most importantly my hair is growing back. I first noticed my eyebrows, which I initially thought were blackheads, I then worried that they were growing back jet black, thoughts of trying to carry off the Alistair Darling look crossed my mind. However, I am pleased to see that I will probably not have to put up with black eyebrows to go with my white hair.
I have joined both a secondary breast cancer forum and facebook group. They are handy for answering those questions which you don't want or need to bother the medical profession. Also the medical profession don't have the first hand experience of the joys that are cancer treatment.
What I have noticed is that I am currently having a relatively easy time with respect to side effects of the treatment and the effects of the cancer. Further I have definitely got the best doctors, nurses and hospital. So many women are dismissed by their GPs, "it's arthritis, it's muscle strain, it's your age." The oncologists seem to be, at best, off-hand and unapproachable. So many women appear to be cast adrift by the hospital with no point of contact. Whilst I don't feel the need to see my oncologist any more often than I do already, which basically is to get results from scans, so about every months, I know that I can phone the MacMillan nurses at any time, which is a huge comfort. Also my GP, who sent me off for a bone scan when I saw him about the strange pain in my back, has said that they are there for me for anything and everything. That is I shouldn't put up with any problems, such as conjunctivitis or sore patches which don't heal quickly. Until I joined my forums I didn't think that this was unusual, I assumed that this is how it was for everyone. How wrong could I be.
The side effects appear to be virtually non-existent. The peripheral neuropathy is slowly disappearing, my overactive bowels are getting less overactive, my fatigue is its usual self in that it comes and goes without warning and most importantly my hair is growing back. I first noticed my eyebrows, which I initially thought were blackheads, I then worried that they were growing back jet black, thoughts of trying to carry off the Alistair Darling look crossed my mind. However, I am pleased to see that I will probably not have to put up with black eyebrows to go with my white hair.
I have joined both a secondary breast cancer forum and facebook group. They are handy for answering those questions which you don't want or need to bother the medical profession. Also the medical profession don't have the first hand experience of the joys that are cancer treatment.
What I have noticed is that I am currently having a relatively easy time with respect to side effects of the treatment and the effects of the cancer. Further I have definitely got the best doctors, nurses and hospital. So many women are dismissed by their GPs, "it's arthritis, it's muscle strain, it's your age." The oncologists seem to be, at best, off-hand and unapproachable. So many women appear to be cast adrift by the hospital with no point of contact. Whilst I don't feel the need to see my oncologist any more often than I do already, which basically is to get results from scans, so about every months, I know that I can phone the MacMillan nurses at any time, which is a huge comfort. Also my GP, who sent me off for a bone scan when I saw him about the strange pain in my back, has said that they are there for me for anything and everything. That is I shouldn't put up with any problems, such as conjunctivitis or sore patches which don't heal quickly. Until I joined my forums I didn't think that this was unusual, I assumed that this is how it was for everyone. How wrong could I be.
Saturday, 9 July 2016
Yet Another General Update
Not having the chemotherapy element has made a huge difference to my side effects. I did not have the excruciating pain in my knees. My immune system, I am presuming, has not been reduced, and finally, my bowels have been behaving a little better. Although I doubt that they will ever be back to normal.
On the subject of immune systems, I have pointed out before that having no immune system means that in the event of catching a cold there is no snot. Which is a huge bonus. Indeed over the last few weeks, in spite of the fact that I am the one with an incurable disease I was without doubt the healthiest member of my immediate family, as I was the one who caught the truly awful cold last, got over it quickest and didn't get through industrial quantities of tissues. Every cloud...
As far as other side effects go, I have recently been suffering from unbelievable fatigue. Previously I was fairly knackered during the first week or so. This time round the tiredness has descended during the third week. As a general rule, I do take things easy. My fatigue comes in two ways, either a general slow creeping up on me, or like a switch. If it's the latter I have to literally stop in my tracks. I work part-time and on occasion have to leave early so that I can go to bed. When I am not at work I make sure that I have an afternoon snooze, which helps with the fatigue. This time round nothing seems to really shift or help with my fatigue. Having said that, I do not find that I am mentally fatigued, which is a feature of my early onset tiredness. This time round it is just physical and the thought of doing anything strenuous overwhelms me. I can only hope that things improve before my next round of treatment in a few days.
On the subject of immune systems, I have pointed out before that having no immune system means that in the event of catching a cold there is no snot. Which is a huge bonus. Indeed over the last few weeks, in spite of the fact that I am the one with an incurable disease I was without doubt the healthiest member of my immediate family, as I was the one who caught the truly awful cold last, got over it quickest and didn't get through industrial quantities of tissues. Every cloud...
As far as other side effects go, I have recently been suffering from unbelievable fatigue. Previously I was fairly knackered during the first week or so. This time round the tiredness has descended during the third week. As a general rule, I do take things easy. My fatigue comes in two ways, either a general slow creeping up on me, or like a switch. If it's the latter I have to literally stop in my tracks. I work part-time and on occasion have to leave early so that I can go to bed. When I am not at work I make sure that I have an afternoon snooze, which helps with the fatigue. This time round nothing seems to really shift or help with my fatigue. Having said that, I do not find that I am mentally fatigued, which is a feature of my early onset tiredness. This time round it is just physical and the thought of doing anything strenuous overwhelms me. I can only hope that things improve before my next round of treatment in a few days.
Friday, 24 June 2016
Other Stuff And The New Normal
Since I last posted I have been to have my alternative therapy at the hospice. It consisted of a massage to my back, which was very lovely, my knees, which had some very interesting knots in the muscles and my numb feet, which did alleviate the numbness. Apparently I get 6 free treatments but I'm not sure what happens after that. Given that currently I cannot really go every week due to my side effects, I suspect it will be quite a long time before I get to use up my six visits.
My peripheral neuropathy ebbs and flows and is more irksome than debilitating. Given that it is a side effect of the docetaxel (the chemotherapy element) and I am not having that now, I am hopeful that this will get better. I am also hopeful that my hair will start to grow back.
Yesterday was my 7th treatment and the first without the chemotherapy element. Since I did not have the docetaxel, I did not have to take the numerous steroids before and after. I have now discovered that the side effect of the hot, very red, very itchy cheeks, which I and the medical profession attributed to herceptin, is actually attributable to the steroids. So I am delighted.
On many occasions I have waxed lyrical about the delights of the portacath. I have now discovered that all is not necessarily sweetness and light with it. At the beginning of each session the portacath is flushed with saline and then a syringe is connected and some blood is drawn out. Unfortunately this time no blood came. In spite of nearly an hour of flushing, anticoagulant, and general "fiddling about", (a technical medical term!), there was no blood. Stuff went in quite happily but nothing came out. The blockage, which I assume to be a bit like the hinged flap on the top of a juganaut's upright exhaust pipe is caused by fibrin, an insoluble protein formed during the clotting of blood, which forms a fibrous mesh that impedes the flow of blood. Clearly a portacath is a foreign body and as such the human body reacts to it. The nurses seemed unconcerned about the lack of blood coming out and I appear to have suffered no ill effects from it. Although I am a tad worried that there might be a stray blood clot waiting to get me.
Finally, I am frequently asked for how long I will be receiving treatment and my reply is "until I die". I am not being melodramatic or morbid, but truthful, this is my new normal. Every three weeks I will go to the hospital and receive herceptin and pertuzamab for as long as they keep the cancer in check. Once the cancer starts growing again then the wonders of medical science will find something else to give me and so on until all avenues are exhausted. I should point out that there are women who have been on herceptin and pertuzamab for a minimum of 2 years, which given the latter has only been available for a couple of years, gives me great hope. There is a price to be paid for this and that is how little free time I appear to have. Out of twenty one days and day and a half are taken up with blood tests and treatment. After that approximately ten days are devoted to side effects which tend to tie me to my home, (especially the loo!) which leaves me with less than half of my time in which I have to fit in going to work (good job I work part time and I have the world's most understanding boss), visits to my mother, visits from the plumber (the saga of the fixing of my shower would probably merit a blog all of its own), various other hospital appointments, a social life, (which seems to have picked up dramatically of late, probably because my lovely friends appreciate that time is finite) and the other stuff that normal life requires like shopping. This is my new normal.
My peripheral neuropathy ebbs and flows and is more irksome than debilitating. Given that it is a side effect of the docetaxel (the chemotherapy element) and I am not having that now, I am hopeful that this will get better. I am also hopeful that my hair will start to grow back.
Yesterday was my 7th treatment and the first without the chemotherapy element. Since I did not have the docetaxel, I did not have to take the numerous steroids before and after. I have now discovered that the side effect of the hot, very red, very itchy cheeks, which I and the medical profession attributed to herceptin, is actually attributable to the steroids. So I am delighted.
On many occasions I have waxed lyrical about the delights of the portacath. I have now discovered that all is not necessarily sweetness and light with it. At the beginning of each session the portacath is flushed with saline and then a syringe is connected and some blood is drawn out. Unfortunately this time no blood came. In spite of nearly an hour of flushing, anticoagulant, and general "fiddling about", (a technical medical term!), there was no blood. Stuff went in quite happily but nothing came out. The blockage, which I assume to be a bit like the hinged flap on the top of a juganaut's upright exhaust pipe is caused by fibrin, an insoluble protein formed during the clotting of blood, which forms a fibrous mesh that impedes the flow of blood. Clearly a portacath is a foreign body and as such the human body reacts to it. The nurses seemed unconcerned about the lack of blood coming out and I appear to have suffered no ill effects from it. Although I am a tad worried that there might be a stray blood clot waiting to get me.
Finally, I am frequently asked for how long I will be receiving treatment and my reply is "until I die". I am not being melodramatic or morbid, but truthful, this is my new normal. Every three weeks I will go to the hospital and receive herceptin and pertuzamab for as long as they keep the cancer in check. Once the cancer starts growing again then the wonders of medical science will find something else to give me and so on until all avenues are exhausted. I should point out that there are women who have been on herceptin and pertuzamab for a minimum of 2 years, which given the latter has only been available for a couple of years, gives me great hope. There is a price to be paid for this and that is how little free time I appear to have. Out of twenty one days and day and a half are taken up with blood tests and treatment. After that approximately ten days are devoted to side effects which tend to tie me to my home, (especially the loo!) which leaves me with less than half of my time in which I have to fit in going to work (good job I work part time and I have the world's most understanding boss), visits to my mother, visits from the plumber (the saga of the fixing of my shower would probably merit a blog all of its own), various other hospital appointments, a social life, (which seems to have picked up dramatically of late, probably because my lovely friends appreciate that time is finite) and the other stuff that normal life requires like shopping. This is my new normal.
Sunday, 12 June 2016
Yet More Interesting Side Effects
Some time ago I developed a Morton's neuroma in my left foot. This is a swelling of the nerve which runs along the foot towards the toes. The effect of this is a numb toe. The treatment for this is to inject the neuroma with steroids. Having an injection between the toes is every bit as painful a you might imagine. However, it was worth it as the steroids did their stuff and the numbness went.
Fast forward a year or so and Morton's neuromas are the least of my worries.
At every assessment the nurses ask all about all and any side effects. The list can appear endless. I'm never entirely certain what is a direct side effect of the treatment and what is just "one of those things".
Up until recently the weather has been such that I have been wearing shoes, socks and slippers. Not all at the same time obviously. Now that the weather has improved slightly I have taken to wearing my beloved flip-flops. Not having my tootsies corralled into various footwear has led to my noticing that my Morton's neuroma had returned.
I think I may well be wrong because not only is my original toe numb but I also have numbness in my other foot and a little bit in both hands. This is peripheral neuropathy. Peripheral - at the edge, neuropathy - nerve suffering/disease/disorder.
At the moment it is not a problem and it is one of the many side effects of the chemotherapy element of my treatment, which I have just finished. I am hopeful that now I am no longer being treated with docetaxel this along with the other annoying side effects will disappear leaving no long term damage.
This highlights one of the many problems of treatment, I never really know what is and what isn't a side effect. Some are very obvious, such as hair loss, fatigue and loss of taste. Others, such as mild numbness and pins and needles are more difficult to pin down until they become very, very obvious.
Added to this, even telling the nurses about every little perceived side effect seems like a tick box exercise, as this is literally what they do. I am uncertain as to what happens to the sheet they complete each visit. Do the team look at it and chart the progress and severity of the side effects until a particular line is crossed? Or is the sheet just filed away in my medical records never to be consulted again? I suspect the latter.
Fast forward a year or so and Morton's neuromas are the least of my worries.
At every assessment the nurses ask all about all and any side effects. The list can appear endless. I'm never entirely certain what is a direct side effect of the treatment and what is just "one of those things".
Up until recently the weather has been such that I have been wearing shoes, socks and slippers. Not all at the same time obviously. Now that the weather has improved slightly I have taken to wearing my beloved flip-flops. Not having my tootsies corralled into various footwear has led to my noticing that my Morton's neuroma had returned.
I think I may well be wrong because not only is my original toe numb but I also have numbness in my other foot and a little bit in both hands. This is peripheral neuropathy. Peripheral - at the edge, neuropathy - nerve suffering/disease/disorder.
At the moment it is not a problem and it is one of the many side effects of the chemotherapy element of my treatment, which I have just finished. I am hopeful that now I am no longer being treated with docetaxel this along with the other annoying side effects will disappear leaving no long term damage.
This highlights one of the many problems of treatment, I never really know what is and what isn't a side effect. Some are very obvious, such as hair loss, fatigue and loss of taste. Others, such as mild numbness and pins and needles are more difficult to pin down until they become very, very obvious.
Added to this, even telling the nurses about every little perceived side effect seems like a tick box exercise, as this is literally what they do. I am uncertain as to what happens to the sheet they complete each visit. Do the team look at it and chart the progress and severity of the side effects until a particular line is crossed? Or is the sheet just filed away in my medical records never to be consulted again? I suspect the latter.
Friday, 3 June 2016
There's More To A Hospice
Mention the word hospice and most people, myself included, think of it as a place to die.
Well you'd be surprised that this vital service actually accounts for a small part of their operations.
I am going to my local hospice as an outpatient to avail myself of their numerous complementary treatments.
As you are aware I have secondary breast cancer in my spine. Since this flared up about 7 months ago I have done little or no exercise. I used to swim, walk and do yoga. As a consequence my back becomes stiff and achy and is in dire need of a massage. I mentioned this to my oncologist and asked if I could go to the Linda Jackson Centre at Mount Vernon, she suggested that I could go to St.Luke's Hospice which is loads closer. Little did I realise that when we moved to our current house 15 years ago how convenient it would be, both my local hospital and the hospice are less than a mile and a half away.
I had my introductory appointment earlier this week. My daughter came with me and posted on facebook where she was and who she was with. I then had to reassure my facebook friends that I was there as an outpatient rather than to end my days. Much relief all round.
The in-patient service, as well as providing end of life care, also offer respite care and pain control. To quote the nurse, you come in for a short stay while they "mess about with your pain meds". I think this might be a technical term.
The outpatient department appears to account for the greater part of their activities. There is acupuncture, aromatherapy, massage, physiotherapy, reflexology, reiki/healing, excerise, sound therapy, relaxation and various art activities, as well as group activities such as counselling etc.
As you can see I shall be quite busy as I intend to try everything and see what suits me best. I shall certainly be going to the weekly relaxation session as actually "switching off" is very necessary.
On the whole the atmosphere of the hospice is rather jolly and I look forward to using its numerous facilities for many years to come.
Well you'd be surprised that this vital service actually accounts for a small part of their operations.
I am going to my local hospice as an outpatient to avail myself of their numerous complementary treatments.
As you are aware I have secondary breast cancer in my spine. Since this flared up about 7 months ago I have done little or no exercise. I used to swim, walk and do yoga. As a consequence my back becomes stiff and achy and is in dire need of a massage. I mentioned this to my oncologist and asked if I could go to the Linda Jackson Centre at Mount Vernon, she suggested that I could go to St.Luke's Hospice which is loads closer. Little did I realise that when we moved to our current house 15 years ago how convenient it would be, both my local hospital and the hospice are less than a mile and a half away.
I had my introductory appointment earlier this week. My daughter came with me and posted on facebook where she was and who she was with. I then had to reassure my facebook friends that I was there as an outpatient rather than to end my days. Much relief all round.
The in-patient service, as well as providing end of life care, also offer respite care and pain control. To quote the nurse, you come in for a short stay while they "mess about with your pain meds". I think this might be a technical term.
The outpatient department appears to account for the greater part of their activities. There is acupuncture, aromatherapy, massage, physiotherapy, reflexology, reiki/healing, excerise, sound therapy, relaxation and various art activities, as well as group activities such as counselling etc.
As you can see I shall be quite busy as I intend to try everything and see what suits me best. I shall certainly be going to the weekly relaxation session as actually "switching off" is very necessary.
On the whole the atmosphere of the hospice is rather jolly and I look forward to using its numerous facilities for many years to come.
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