There is a Facebook page which claims that cancer can be cured through nutrition and exercise. Their "mission statement" is as follows:" I've seen cancer hurt too many people around me. The disease is preventable, beatable and curable. Passionate about nutrition and well being". Well clearly this person knows something all the oncologists don't. The Facebook page is littered with "fridge magnet" maxims. My particular favourite is:
1. Stop eating refined sugars.
2. Eat alkaline foods only
3. Drink plenty of clean water
4. Reduce stress
5. Exercise
6. Eat as much fresh organic fruit and vegetables that you can
7. Avoid processed foods
8. Detoxify your body
9. Boost your immune system
10. Follow an anti-inflammatory diet.
This basically boils down to, eat healthily and do some exercise. If only it were that easy. On a point by point basis, cutting down on refined sugars is clearly a sensible thing to do, however there are times when the only thing that I want to eat is a bowl of Sugar Puffs as that really is the only thing that appeals. Eating an alkaline diet is a waste of time as the human body rebalances the acidity/alkalinity. Personally I drink nothing but clean water. I would love to reduce my stress, but the biggest source of my stress is my cancer! Ah exercise! There are times when getting out of bed is all the exercise I can manage. I would love to eat lots of healthy fruit and veg but again there are times when you have to eat what you fancy which might not necessarily be organic fruit and veg. Avoiding processed foods, again a sensible thing to do but not always possible. Detoxifying is what your liver and kidneys do, so again something of a waste of effort. Boosting of the immune system easier said than done, ditto the anti-inflammatory diet. To say I was angry about this is something of an understatement and I realise that many people will clutch at any straw they can.
As you can probably imagine death and the thought of it does tend to preoccupy my waking thoughts. Many people will have walked out of their front doors this morning never to return. C'est la vie. The fact that my life is limited is annoying because I can never forget that I will almost certainly die before you. This is not as annoying as the euphemisms for death. When I die, which I surely will, I will have died, I will not have "passed". I always feel the urge to ask what have they passed, their driving test, Spanish "O" level. I will not have gained my wings, I certainly will not have joined the angels. Strangely I have no issue with kicked the bucket, popped my clogs or shuffled off this mortal coil.
Finally, this past week has been somewhat packed. I had my usual blood test on Wednesday, arrived on Thursday for treatment to be told that there was a cock-up on the appointment front and I should be in on Friday. Good job both my husband and I have such understanding bosses. We return the following day where they spend the best part of 2 hours trying to get my portacath to work. Stuff would go in but no blood would come out. Eventually they decide that even though there is no pull back they will use it anyway. The treatment takes about 20 minutes, so I spent more time trying to get the port to work than having treatment. I have to have yet another blood transfusion as my iron levels had fallen through the floor. The nurse finds a vein in my arm to take samples for cross-matching. Leaving a lovely bruise.
On Saturday morning I go to the ambulatory unit for my transfusion. They too eventually find a vein and the very boring procedure begins. I have now managed to get it down to 2½ hours rather than 3. My previous blood transfusion had been a Lazarus effect on me, this time the effect has been less dramatic but just as effective. I think that my transfusions last about 6 weeks so I shouldn't need another one until the end of March. I'll keep you posted.
Other than that my side effects from the drugs I am having have been minimal and cope-able, which is nice.
At some point prior to this I had agreed to having a sofa-bed delivered on Saturday. They ring about a hour before delivery but unfortunately cannot get it up the stairs due to a newel post. So it is currently sitting on its end in the hall awaiting an upholsterer to dismantle it and reassemble it later.
Wednesday, 22 February 2017
Thursday, 2 February 2017
Why Don't Doctors Listen?
Firstly I should point out that I have nothing but admiration for the medical profession. They do a difficult job in trying circumstances. However, I think that they could all do with a course in listening to their patients.
On three occasions I have been left with the feeling that the doctors I have spoken to have really not heard what I have had to say.
I am well aware of the difference between bone pain, muscle pain and nerve pain, as I am fairly certain most of us are.
Some months ago I complained to my lovely oncologist that I had an achy back and could do with a massage as I had done absolutely no exercise for over a year. I had gone from swimming, yoga and walking to doing practically nothing apart from curling up on the sofa feeling sorry for myself. Her response was "it's the cancer." It really wasn't, firstly it was in a different place and secondly is was muscular rather than bone. Anyway, she acceded to my request and I have been having massage therapy for the last few months and my back feels much better.
My second not listening doctor was my GP. I have an itchy back, the lower part is because of the dry skin from radiotherapy, the top part is because of a misfiring nerve, not dry skin. This much is obvious as there is no dry skin to be seen. Further, since my mastectomy a little over 6 years ago I have a numbness that extends from my sternum round under my arm to approximately half-way across my left shoulder blade. the problem with the itching is that because it is numb scratching actually does very little most of the time. In spite of the evidence before her, she maintained that it was dry skin. So I am issued with much ointment which does nothing for the high up itchiness.
My third not listening doctor is the chemo unit oncologist and is also related to the itchiness. A couple of days before I was due in the chemo unit the itching was unbearable and so I attacked it with a hair brush. Big mistake! What happened was I completely buggered up the nerve and instead of itching it was excruciatingly painful. No amount of painkillers helped as they are useless against nerve damage.
I mention this to the chemo nurse who calls over the oncologist. I fully explain the 6 years of numbness and itching, the subsequent damage caused by the hairbrush. As I am explaining this I get the feeling that he really isn't listening. He looks at my back which obviously shows nothing. He disappears off to look at my most recent scan, he returns telling me that it was progression of disease. It isn't because whilst my bone mets are annoying, irritating and occasionally painful, they are very stable. He is wrong. He clearly ignored what I had told him about the previous 6 years. He offers me morphine which I decline as it would be of no use at all.
As I said at the beginning I can tell the difference between the various types of pain and I know what is going on inside my body. All I want is for doctors to treat me as an intelligent human being who knows what is going on with my body.
On three occasions I have been left with the feeling that the doctors I have spoken to have really not heard what I have had to say.
I am well aware of the difference between bone pain, muscle pain and nerve pain, as I am fairly certain most of us are.
Some months ago I complained to my lovely oncologist that I had an achy back and could do with a massage as I had done absolutely no exercise for over a year. I had gone from swimming, yoga and walking to doing practically nothing apart from curling up on the sofa feeling sorry for myself. Her response was "it's the cancer." It really wasn't, firstly it was in a different place and secondly is was muscular rather than bone. Anyway, she acceded to my request and I have been having massage therapy for the last few months and my back feels much better.
My second not listening doctor was my GP. I have an itchy back, the lower part is because of the dry skin from radiotherapy, the top part is because of a misfiring nerve, not dry skin. This much is obvious as there is no dry skin to be seen. Further, since my mastectomy a little over 6 years ago I have a numbness that extends from my sternum round under my arm to approximately half-way across my left shoulder blade. the problem with the itching is that because it is numb scratching actually does very little most of the time. In spite of the evidence before her, she maintained that it was dry skin. So I am issued with much ointment which does nothing for the high up itchiness.
My third not listening doctor is the chemo unit oncologist and is also related to the itchiness. A couple of days before I was due in the chemo unit the itching was unbearable and so I attacked it with a hair brush. Big mistake! What happened was I completely buggered up the nerve and instead of itching it was excruciatingly painful. No amount of painkillers helped as they are useless against nerve damage.
I mention this to the chemo nurse who calls over the oncologist. I fully explain the 6 years of numbness and itching, the subsequent damage caused by the hairbrush. As I am explaining this I get the feeling that he really isn't listening. He looks at my back which obviously shows nothing. He disappears off to look at my most recent scan, he returns telling me that it was progression of disease. It isn't because whilst my bone mets are annoying, irritating and occasionally painful, they are very stable. He is wrong. He clearly ignored what I had told him about the previous 6 years. He offers me morphine which I decline as it would be of no use at all.
As I said at the beginning I can tell the difference between the various types of pain and I know what is going on inside my body. All I want is for doctors to treat me as an intelligent human being who knows what is going on with my body.
Wednesday, 1 February 2017
New Drug New Side Effects
I am now taking Capecitabine. This is taken in tablet form, 3 tablets twice a day, 12 hours apart, for two weeks with one week off.
The tablets are large but bizarrely I find that taking them is actually quite easy. In fact I have more problems with smaller tablets.
The side effects are myriad and I appear to be suffering less than most. My side effects appear to be limited to the usual fatigue, (there has to be a better word for the chemo induced fatigue, it simply doesn't get across the total wiped-out-ness that occurs) and constipation. I have to say that I find constipation considerably easier to cope with than the alternative, especially given my inability to move faster than a snail. We have 3 lavatories none of which are on the ground floor, so I have to scale the alpine-like stairs. Interestingly, my thighs muscles are also affected, they are achy and painful which makes turning over in bed problematic and climbing the aforementioned stairs a slow process.
The other issue with taking tablets for 2 weeks on 1 week off is that it is a constant reminder of my cancer. Whereas before I'd turn up at the chemo unit, have treatment and then not think about it again for 3 weeks, tablets mean that I cannot lapse into a sweet reverie of being "normal".
Other than a nerve pain in my shoulder, which has nothing to do with the cancer, I'm doing quite well apart from the tiredness.
Interestingly my appetite has returned with a vengeance which is really very nice. Moreover, food generally tastes like it should which is yet another bonus.
I can only hope that this round of treatment does its stuff and reduces the size of my tumours.
The tablets are large but bizarrely I find that taking them is actually quite easy. In fact I have more problems with smaller tablets.
The side effects are myriad and I appear to be suffering less than most. My side effects appear to be limited to the usual fatigue, (there has to be a better word for the chemo induced fatigue, it simply doesn't get across the total wiped-out-ness that occurs) and constipation. I have to say that I find constipation considerably easier to cope with than the alternative, especially given my inability to move faster than a snail. We have 3 lavatories none of which are on the ground floor, so I have to scale the alpine-like stairs. Interestingly, my thighs muscles are also affected, they are achy and painful which makes turning over in bed problematic and climbing the aforementioned stairs a slow process.
The other issue with taking tablets for 2 weeks on 1 week off is that it is a constant reminder of my cancer. Whereas before I'd turn up at the chemo unit, have treatment and then not think about it again for 3 weeks, tablets mean that I cannot lapse into a sweet reverie of being "normal".
Other than a nerve pain in my shoulder, which has nothing to do with the cancer, I'm doing quite well apart from the tiredness.
Interestingly my appetite has returned with a vengeance which is really very nice. Moreover, food generally tastes like it should which is yet another bonus.
I can only hope that this round of treatment does its stuff and reduces the size of my tumours.
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