2016 is panning out to be the worst year for celebrity deaths.
It seems to me that hardly a week goes by without some beloved celebrity death being announced on the news. A shocking number are "premature". Although from where I'm standing, dying in my early 60s seems a good deal to me. For those who don't know I am 52.
As you can imagine every time this happens, especially if the death is caused by cancer, my own mortality plays on my mind.
None of us know when we are going to die. I don't, although unlike most people, I do have a fairly good idea of what I am going to die of, unless of course the 114 bus decides to play a part in my downfall.
Many people have asked me for how long I have to do chemo. I tell them "until I die". The reaction to this varies from, "oh don't say that!", as if not saying it will somehow stop my death, to "I'm sure you'll get better.", I won't, I have incurable cancer, there is no "getting better".
I hasten to add I could be doing this for a very long time. Advances in treatment of secondary breast cancer, whilst not as good as they could be, are much improved on what they were even 5 years ago. I trust that my treatment will continue to work and that, although my current "normal life" can be a bit crappy, it certainly beats the alternative.
For the record, I don't live each day as if it's my last. I'm doing pretty much what I did before, just a bit slower. I have no bucket list. If I had wanted to hurl myself out of a perfectly serviceable aeroplane I'd have probably done it by now. The same goes for visiting far flung destinations.
So my bottom line is, death is inevitable. Some of us will put off our final day for decades, some of us won't.
Friday, 22 April 2016
Saturday, 16 April 2016
Handy Hints For Whiling Away The Time Whilst Undergoing Chemotherapy
I spend about 5 to 6 hours in the chemo unit every three weeks.
It is remarkably boring, as you can imagine.
Fortunately, unlike 5 years ago I do not suffer from any particularly adverse side effects, that is no projectile vomiting, which is nice.
The reason for the length of my visit is because I have 4 different drugs, plus two pre-meds as well as the saline flushes between each infusion.
The chemotherapy drug , docetaxel has to be given for over a period of one hour.
I have to wait about half an hour for the pre-meds to kick in and the other three drugs each take about half an hour. Add to this the waiting for the busy nurses to change between flushing and infusions when the pump goes beep you can see where the time goes albeit very slowly.
Things that I consider essential when visiting the chemo unit.
My husband, or failing that, another "gofer" friend. This is someone to talk to, hold hands with, and more essentially, someone who can get food and drink from the far flung eateries of the hospital.
Newpapers for reading and crosswords etc. and obviously a pen.
A book, even more obviously. Given the amount time I have spent there, you'd think I'd have been able to have read War and Peace backwards and forwards. This is not the case for two reasons, I am a slow reader, as my children will attest, and also doing anything for any length of time is not really very easy with all the comings and goings in the unit.
I would also recommend wearing comfortable clothing. The temperature of the unit and my body fluctuate wildly. I wear a full length zipped fleece which given I have a portacath I can take off completely. This would not be possible if they were using a vein in my arm, but being able to unzip it would help a bit if I were getting hot. In the unlikely event that you get cold they have blankets and heat pads.
The chairs are very comfortable and adjustable so snoozing is also an option.
If you are at the unit long enough, that is over lunchtime, the staff come round and take your sandwich, fruit, drink,crisps and yoghurt order. They also offer tea and coffee. Whilst I do take advantage of the latter I bring my own sandwich as they do not do prawn mayonnaise and I like to think that I am saving the NHS a very little bit of money.
Looking around the unit, there are a few who have a tablet/kindle, (my husband for one), and they are mostly the person accompanying the patient, by and large most people are just sitting there staring into space.
Even with all of these things the time does pass very slowly and when I am finished I leave the unit like a greyhound out of the traps. This might be more attributable to the numerous steroids I have to take rather than the relief of the session being over.
It is remarkably boring, as you can imagine.
Fortunately, unlike 5 years ago I do not suffer from any particularly adverse side effects, that is no projectile vomiting, which is nice.
The reason for the length of my visit is because I have 4 different drugs, plus two pre-meds as well as the saline flushes between each infusion.
The chemotherapy drug , docetaxel has to be given for over a period of one hour.
I have to wait about half an hour for the pre-meds to kick in and the other three drugs each take about half an hour. Add to this the waiting for the busy nurses to change between flushing and infusions when the pump goes beep you can see where the time goes albeit very slowly.
Things that I consider essential when visiting the chemo unit.
My husband, or failing that, another "gofer" friend. This is someone to talk to, hold hands with, and more essentially, someone who can get food and drink from the far flung eateries of the hospital.
Newpapers for reading and crosswords etc. and obviously a pen.
A book, even more obviously. Given the amount time I have spent there, you'd think I'd have been able to have read War and Peace backwards and forwards. This is not the case for two reasons, I am a slow reader, as my children will attest, and also doing anything for any length of time is not really very easy with all the comings and goings in the unit.
I would also recommend wearing comfortable clothing. The temperature of the unit and my body fluctuate wildly. I wear a full length zipped fleece which given I have a portacath I can take off completely. This would not be possible if they were using a vein in my arm, but being able to unzip it would help a bit if I were getting hot. In the unlikely event that you get cold they have blankets and heat pads.
The chairs are very comfortable and adjustable so snoozing is also an option.
If you are at the unit long enough, that is over lunchtime, the staff come round and take your sandwich, fruit, drink,crisps and yoghurt order. They also offer tea and coffee. Whilst I do take advantage of the latter I bring my own sandwich as they do not do prawn mayonnaise and I like to think that I am saving the NHS a very little bit of money.
Looking around the unit, there are a few who have a tablet/kindle, (my husband for one), and they are mostly the person accompanying the patient, by and large most people are just sitting there staring into space.
Even with all of these things the time does pass very slowly and when I am finished I leave the unit like a greyhound out of the traps. This might be more attributable to the numerous steroids I have to take rather than the relief of the session being over.
Wednesday, 13 April 2016
It's Nice To Be Liked
Today I had my blood test to check that everything is in order before they pump me full of drugs on Friday.
I had my test in the chemotherapy unit which, as I have said before, is infinitely preferable to having it done in the blood clinic where not only do you have to run the gauntlet of the main hospital and all those germ laden people, but also have to endure the glares of the people who have to take and ticket and wait as you effectively queue jump.
Having the blood test in the chemo unit also saves time, as they do my assessment then rather than on the day of my chemotherapy.
The assessment involves checking my weight which is vaguely depressing but since it's in kilos and I am old school I am only aware if I have gained or lost weight rather than what my actual weight is.
This is also when I get quizzed about any side effects and problems I might be having. This is the time to moan ad nauseam about how terrible everything is, how much I suffer and discuss at length the consistency and frequency of my poo.
I like to think that by and large I am a lovely person to have around. Well apparently I am. The Sister commented that they all like it when I come in. I can only presume that they enjoy my sardonic wit and general good humour whilst enduring the joys of cancer and its treatment. Anyway, being told that I'm nice to have around has put me in a very good mood, which is nice.
I had my test in the chemotherapy unit which, as I have said before, is infinitely preferable to having it done in the blood clinic where not only do you have to run the gauntlet of the main hospital and all those germ laden people, but also have to endure the glares of the people who have to take and ticket and wait as you effectively queue jump.
Having the blood test in the chemo unit also saves time, as they do my assessment then rather than on the day of my chemotherapy.
The assessment involves checking my weight which is vaguely depressing but since it's in kilos and I am old school I am only aware if I have gained or lost weight rather than what my actual weight is.
This is also when I get quizzed about any side effects and problems I might be having. This is the time to moan ad nauseam about how terrible everything is, how much I suffer and discuss at length the consistency and frequency of my poo.
I like to think that by and large I am a lovely person to have around. Well apparently I am. The Sister commented that they all like it when I come in. I can only presume that they enjoy my sardonic wit and general good humour whilst enduring the joys of cancer and its treatment. Anyway, being told that I'm nice to have around has put me in a very good mood, which is nice.
Thursday, 7 April 2016
Hair Loss and Hair Cuts
As I have said before, my hair has not so much fallen out as thinned considerably. Consequently I have had to have a hair cut, which my lovely hairdresser did a couple of days ago. So although my hair is looking very thin it is now looking a bit tidier.
Hair loss due to chemotherapy obviously affects all the hair not just that on your head. Interestingly my left eyebrow is very sparse whilst my right one is hardly affected at all. Also I didn't bother shaving my legs before I started on my treatment as I assumed that it would fall out. Well it has, a bit, but the hair that has not disappeared from my legs has continued to grow apace such that I have sparsely but very shaggy leg hair, some of which are up to about and inch and a half long!
It is all very strange but as I have pointed out the drugs that I am being given are not all chemotherapy drugs like last time, so I presume that this is why my hair loss has been less and more erratic.
Hair loss due to chemotherapy obviously affects all the hair not just that on your head. Interestingly my left eyebrow is very sparse whilst my right one is hardly affected at all. Also I didn't bother shaving my legs before I started on my treatment as I assumed that it would fall out. Well it has, a bit, but the hair that has not disappeared from my legs has continued to grow apace such that I have sparsely but very shaggy leg hair, some of which are up to about and inch and a half long!
It is all very strange but as I have pointed out the drugs that I am being given are not all chemotherapy drugs like last time, so I presume that this is why my hair loss has been less and more erratic.
Friday, 1 April 2016
The Cleanest Teeth In North West London And My Unsung Hero
I haven't updated my blog for a week as not much different has happened this time round.
Day after treatment full of (steroid) beans and energy, Sunday spent in bed with excruciatingly painful legs, rest of the week spent very close to the loo, together with the sudden and overwhelming knackeredness.
The cardboardy mouth-feel is irksome but not too life affecting. In general I seem to suffer from what feels like a lack of spit, which in actual fact I am not. Maybe my spit is not spitty enough. Anyway, I thought that chewing gum might help, it didn't. The only thing that seems to help is brushing my teeth, so at least my dentist will be pleased.
The joy that is cancer treatment is a long hard slog. The three week cycle is split between feeling crap, feeling half-human and feeling quite normal. So I reckon I get about half my time functioning on an almost normal level. During all of my treatment, hospital visits and the rest, there has been one person who has schelpped me and him to and from the hospital, put cream and aloe vera gel on my radiation burns, helped me get dressed when it was simply too difficult for me, cooked pretty much every meal for the last 3 months (although this last one is not that heroic as he generally does most of the cooking) and put up with eating the same food over and over again (his cottage pie is a wonder to behold!). All of this he has done with his usual good humour and without complaint. Everything I have gone through during the last 6 years and especially the last 4 months would have been considerably more of an ordeal without my wonderful, wonderful husband. Thank you.
Day after treatment full of (steroid) beans and energy, Sunday spent in bed with excruciatingly painful legs, rest of the week spent very close to the loo, together with the sudden and overwhelming knackeredness.
The cardboardy mouth-feel is irksome but not too life affecting. In general I seem to suffer from what feels like a lack of spit, which in actual fact I am not. Maybe my spit is not spitty enough. Anyway, I thought that chewing gum might help, it didn't. The only thing that seems to help is brushing my teeth, so at least my dentist will be pleased.
The joy that is cancer treatment is a long hard slog. The three week cycle is split between feeling crap, feeling half-human and feeling quite normal. So I reckon I get about half my time functioning on an almost normal level. During all of my treatment, hospital visits and the rest, there has been one person who has schelpped me and him to and from the hospital, put cream and aloe vera gel on my radiation burns, helped me get dressed when it was simply too difficult for me, cooked pretty much every meal for the last 3 months (although this last one is not that heroic as he generally does most of the cooking) and put up with eating the same food over and over again (his cottage pie is a wonder to behold!). All of this he has done with his usual good humour and without complaint. Everything I have gone through during the last 6 years and especially the last 4 months would have been considerably more of an ordeal without my wonderful, wonderful husband. Thank you.
Friday, 25 March 2016
Third Time's A Charm
My blood test at the main blood clinic went well, although I was very puffed by the time I had got there, making me worry that my red blood count might be down. It wasn't. I passed my blood test. I discussed the fact that chemo patients have to lurk near the door without taking a ticket and thus get glared at by those who do have to take a ticket and wait. Apparently they cannot put a sign up saying that chemo patients have priority because of patient confidentiality, which I can understand.
As it happens I now have the option as to whether I have my blood test, with an appointment, up in the chemo unit or do the lurking downstairs at the main clinic. You will not be surprised that I have chosen the former.
I have also deduced that the umpteen steroids I have to take before during and after my chemo might be responsible for my tastebuds going AWOL.
My chemo session went without event, which was nice. Although because I have to have pre-meds for the herceptin, and the decotaxel things do take quite a while. I considered being done within 5 hours pretty good going.
As per usual being dosed up on steroids means that today, the day after chemo, I am full of energy and have no pain. At this time I feel very optimistic, by Sunday when my legs are hurting and all the other delightful side effects start to kick in, I feel much less optimistic.
Thursday, 17 March 2016
How Many?
I am frequently asked how many rounds of chemotherapy I have to undergo this time.
Good question. The short answer is I don't know.
On my notes it says "PD". I quipped that this means Patient Died, what it actually means is progression of disease. So I am presuming that I will continue with my current regimen until something happens to the cancer. Hopefully the disease will abate, if the disease progresses then I am presuming that I will be put on another type of chemo. Who knows? I banking on the fact that my oncologist does.
On this slightly grim subject I thought that I would enlighten you about the terms, terminal, incurable and treatable.
When breast cancer recurs anywhere except the breast it is defined as incurable as it cannot be surgically removed. It is however treatable as other things can be done such as radiotherapy and chemotherapy. Treatment can continue for months and years. Once it becomes untreatable it is then terminal and all that can be done is to make the patient comfortable. Having said that people live with terminal cancer for months and years. So there you have it.
Good question. The short answer is I don't know.
On my notes it says "PD". I quipped that this means Patient Died, what it actually means is progression of disease. So I am presuming that I will continue with my current regimen until something happens to the cancer. Hopefully the disease will abate, if the disease progresses then I am presuming that I will be put on another type of chemo. Who knows? I banking on the fact that my oncologist does.
On this slightly grim subject I thought that I would enlighten you about the terms, terminal, incurable and treatable.
When breast cancer recurs anywhere except the breast it is defined as incurable as it cannot be surgically removed. It is however treatable as other things can be done such as radiotherapy and chemotherapy. Treatment can continue for months and years. Once it becomes untreatable it is then terminal and all that can be done is to make the patient comfortable. Having said that people live with terminal cancer for months and years. So there you have it.
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