Kadcyla the wonder drug clearly ins't enough of a wonder drug as it hasn't worked for me. What is so annoying is that all the various aches and pains I had were disappearing and thus lulling me in to a false sense of security.
Having said that there is always a little alarm bell that rings, so when the lovely oncoligist gives the bad news, it's not entirely unexpected. Interestingly, the tumours in my lungs appear to have disappeared and my bone tumours are stable, it is only the ones in my liver that are being a pain, both literally and figuratively.
What happens next is yet more, different treatment. I will be on Capecitabine which is an oral chemotherapy, which means 1 tablet, twice a day for two weeks and then a week off. As with all these things there are side effects, very sore hands and feet, dodgy bowels, hair thining and all the rest. Assuming that these don't work then there is yet another line of attack. In the world of cancer treatment "having a plan" is very important.
As you can imagine I am feeling a little sorry for myself. I think what bothers me more than anything else, is that if I were to be killed by the proverbial bus today, I'd have no time to worry, being told that my horizon is not quite as far away (or possibly it is) as I had initially anticipated is bit like having the sword of Damocles dangling above me.
Tuesday, 24 January 2017
Monday, 16 January 2017
The Week From Hell
A day or so after my blood transfusion, the cold that had been lurking in the background decided to make itself felt, with a vengeance.
I managed about 2 hours at work on the Monday before I decided that bed would be a better plance to be.
I spent the rest of Monday, all of Tuesday and Wednesday in bed.
On Thursday I had a long standing doctor's appointment for my very itchy back. I reckon that given my appointment was at 10am I would probably be back home in bed by about 11am at the latest. I arrived at 9.30am and go straight in as the other patients had not turned up. Result! The doctor prescribes various creams and anti-histamines and then checks my blood pressure, temperature and heart rate. It turns out I'm tachycardic. She is concerned. I am not. She wants to run blood tests and all the rest. I am fed up with having needles stuck in my arm. We agree that the practice nurse will do an ECG. It shows nothing untoward apart from a fast heart rate. The doctor says it might be because of an infection. At some point a possible infection is changed to a pulmonary embolism. I have no other symptoms other than a fast heart rate. I very much doubt that it is a PE as I have had a near permenant nose bleed for the whole of the previous week which would indicate that blood clots are not a problem.
After much discussion and negotiation I agree to go to the ambulatory care unit.
I arrive at about 11.30am and have an enormous cannular inserted, badly, into my arm. More blood is taken. I am then sent for yet another ECG. Then I wait and wait. I would like to point out that I like ambulatory care as they do get their patients out quite quickly. As I wait all I want to do is go home to bed. At about 1pm I get to see a doctor who asks me all the usual questions about how I'm feeling, my bowels, aches, breathing etc. He then checks my heart and lungs with his stethoscope. He says that my platelets are a bit low, but they won't give me a transfusion as it's really the oncologist's call. He says I'm fine and can go home.
The same nurse who put the cannular in comes to remove it. In my haste to escape I did not put enough pressure for long enough on the puncture site. As I am walking away from the unit I can feel a warm wet sensation emanating from my elbow. I apply pressure and hope for the best. Next time you are watching some TV or film thriller where the actor rips the IV drip out of their arm and walks off, remember that there should be a trail of blood. I digress. I get home and the blood stain on my jumper is substantial, but at least the bleeding has stopped. I finally and gratefully go to bed.
Friday I have a full CT scan booked in the afternoon, so off I go, having not eaten anything for 4 hours as instructed. I have to have yet another cannular inserted. I point out to the lovely, lovely radiographer the trials and tribulations of the various cannular insertions. He looks at my arm, and oozing the most comforting confidence, says "No problem." He was right, straight in first time.
As the weekend progresses my cold finally begins to abate and by Monday I actually manage to do a whole day at work which fills me with a huge sense of accomplishment.
I managed about 2 hours at work on the Monday before I decided that bed would be a better plance to be.
I spent the rest of Monday, all of Tuesday and Wednesday in bed.
On Thursday I had a long standing doctor's appointment for my very itchy back. I reckon that given my appointment was at 10am I would probably be back home in bed by about 11am at the latest. I arrived at 9.30am and go straight in as the other patients had not turned up. Result! The doctor prescribes various creams and anti-histamines and then checks my blood pressure, temperature and heart rate. It turns out I'm tachycardic. She is concerned. I am not. She wants to run blood tests and all the rest. I am fed up with having needles stuck in my arm. We agree that the practice nurse will do an ECG. It shows nothing untoward apart from a fast heart rate. The doctor says it might be because of an infection. At some point a possible infection is changed to a pulmonary embolism. I have no other symptoms other than a fast heart rate. I very much doubt that it is a PE as I have had a near permenant nose bleed for the whole of the previous week which would indicate that blood clots are not a problem.
After much discussion and negotiation I agree to go to the ambulatory care unit.
I arrive at about 11.30am and have an enormous cannular inserted, badly, into my arm. More blood is taken. I am then sent for yet another ECG. Then I wait and wait. I would like to point out that I like ambulatory care as they do get their patients out quite quickly. As I wait all I want to do is go home to bed. At about 1pm I get to see a doctor who asks me all the usual questions about how I'm feeling, my bowels, aches, breathing etc. He then checks my heart and lungs with his stethoscope. He says that my platelets are a bit low, but they won't give me a transfusion as it's really the oncologist's call. He says I'm fine and can go home.
The same nurse who put the cannular in comes to remove it. In my haste to escape I did not put enough pressure for long enough on the puncture site. As I am walking away from the unit I can feel a warm wet sensation emanating from my elbow. I apply pressure and hope for the best. Next time you are watching some TV or film thriller where the actor rips the IV drip out of their arm and walks off, remember that there should be a trail of blood. I digress. I get home and the blood stain on my jumper is substantial, but at least the bleeding has stopped. I finally and gratefully go to bed.
Friday I have a full CT scan booked in the afternoon, so off I go, having not eaten anything for 4 hours as instructed. I have to have yet another cannular inserted. I point out to the lovely, lovely radiographer the trials and tribulations of the various cannular insertions. He looks at my arm, and oozing the most comforting confidence, says "No problem." He was right, straight in first time.
As the weekend progresses my cold finally begins to abate and by Monday I actually manage to do a whole day at work which fills me with a huge sense of accomplishment.
Thursday, 5 January 2017
Beginner's Guide To Blood Transfusions
Firstly let me explain why people with cancer need blood transfusions, or at least one of the reasons. A lot of the treatments given basically make the patient anaemic and no amount of iron tablets will combat it. Hence the need for the transfusion.
The ambulatory care unit in the hospital is the place where transfusions are given.
I arrive just before my appointment at 9am and am told to expect to be in the unit for the day. This is helpful as the disabled parking at the hospital only allows 6 hours with no return within 4 hours. Good job my lovely, lovely husband came with me, so he could move the car at the appointed time.
First the joy of having the cannula fitted. Sadly, the only vein the excellent technician can find is at the side of my wrist, near the base of my thumb. My least favourite spot. On the plus side he did find it first time. Then several vials of blood for much cross matching and the like. This will take at least 90 minutes. About 2 and half hours later the results come back and then we have to wait for the powers that be to authorise the transfusion, another 30 minutes or so. I am asked whether I would like 1 or 2 units. I opt for 2 as I don't really want to go through this again any time soon.
3 hours after we arrived the transfusion begins, after much checking of me, the blood and everything else. I thought that they were thorough in the chemo unit, but the ambulatory care unit are extremely thorough.
The transfusion is given over 3 hours and my temperature and blood pressure are checked a lot. This is in case I have a reaction to the blood. So in spite of the fact it is cross matched and the correct blood group there is still a risk that something could go wrong. During the 3 hours I snooze on and off. Reading the paper proves too problematic with my right hand wrist being pretty much incapacitated,
At one point I open my eyes and everything in the ward seems brighter and more in focus, clearly being anaemic affects more than just one's ability to breath.
After the 3 hours are up, the next unit arrives and we then begin the negotiation to have this unit put through in less than 3 hours. After the first hour or so and no reaction the time is reduced by about 40 minutes.
My transfusion finishes and I pop to the loo which is about 10 yards away. No puffing or panting. Result! Whilst I do feel full of beans, relatively, spending the day laying around is actually quite tiring. I sleep really well that night. However, I wake to find that the cold that has been lurking in the background now appears in the forefront with a vengeance, but I still feel considerably less shattered than I had the previous morning. I am hopeful that I won't have to have another transfusion for quite a while yet and am also aware that iron tablets are a complete waste of money when dealing with chemotherapy induced anaemia.
The ambulatory care unit in the hospital is the place where transfusions are given.
I arrive just before my appointment at 9am and am told to expect to be in the unit for the day. This is helpful as the disabled parking at the hospital only allows 6 hours with no return within 4 hours. Good job my lovely, lovely husband came with me, so he could move the car at the appointed time.
First the joy of having the cannula fitted. Sadly, the only vein the excellent technician can find is at the side of my wrist, near the base of my thumb. My least favourite spot. On the plus side he did find it first time. Then several vials of blood for much cross matching and the like. This will take at least 90 minutes. About 2 and half hours later the results come back and then we have to wait for the powers that be to authorise the transfusion, another 30 minutes or so. I am asked whether I would like 1 or 2 units. I opt for 2 as I don't really want to go through this again any time soon.
3 hours after we arrived the transfusion begins, after much checking of me, the blood and everything else. I thought that they were thorough in the chemo unit, but the ambulatory care unit are extremely thorough.
The transfusion is given over 3 hours and my temperature and blood pressure are checked a lot. This is in case I have a reaction to the blood. So in spite of the fact it is cross matched and the correct blood group there is still a risk that something could go wrong. During the 3 hours I snooze on and off. Reading the paper proves too problematic with my right hand wrist being pretty much incapacitated,
At one point I open my eyes and everything in the ward seems brighter and more in focus, clearly being anaemic affects more than just one's ability to breath.
After the 3 hours are up, the next unit arrives and we then begin the negotiation to have this unit put through in less than 3 hours. After the first hour or so and no reaction the time is reduced by about 40 minutes.
My transfusion finishes and I pop to the loo which is about 10 yards away. No puffing or panting. Result! Whilst I do feel full of beans, relatively, spending the day laying around is actually quite tiring. I sleep really well that night. However, I wake to find that the cold that has been lurking in the background now appears in the forefront with a vengeance, but I still feel considerably less shattered than I had the previous morning. I am hopeful that I won't have to have another transfusion for quite a while yet and am also aware that iron tablets are a complete waste of money when dealing with chemotherapy induced anaemia.
Saturday, 31 December 2016
Kadcyla And Transfusions
Kadcyla is the miracle drug that is keeping me and many, many other women alive. It is currently under review by NICE as to whether it is cost effective and they are playing a game of brinkmanship with Roche, who manufacture it, about the price. It is expensive, about £70-90,000 per year. A cost which I'm absolutely certain the relations and friends of those women would say is worth every penny.
What NICE is proposing is to stop new patients from having it, whilst those already on it will continue. I'm fairly sure that eventually NICE will also stop those already on Kadcyla from receiving it. To this end there is a petition which I would be most grateful if you dear reader would sign. The link is here.
Kadcyla Petition
Thank you.
On a more personal level I had my fifth round of the lovely, expensive Kadcyla and this was in spite of the fact that my iron levels are very low. This explains why I have been quite so knackered. So what to do? Well the short answer is a blood transfusion, which will be happening next week. Over the years I have donated over 50 pints of blood so it will be a completely new experience to be on the receiving end. I am told that it takes a minimum of 3 hours to give the transfusion, according to my brother who seems to know about these things, it cannot be given any quicker as this is likely to damage the blood. I am reliably informed by those who have had a transfusion for low iron levels, I will feel like a whole new woman, which I am very much looking forward to. I will also feel like Mo Farrah although I'm not entirely certain that I'll be running any great distance anytime soon.
What NICE is proposing is to stop new patients from having it, whilst those already on it will continue. I'm fairly sure that eventually NICE will also stop those already on Kadcyla from receiving it. To this end there is a petition which I would be most grateful if you dear reader would sign. The link is here.
Kadcyla Petition
Thank you.
On a more personal level I had my fifth round of the lovely, expensive Kadcyla and this was in spite of the fact that my iron levels are very low. This explains why I have been quite so knackered. So what to do? Well the short answer is a blood transfusion, which will be happening next week. Over the years I have donated over 50 pints of blood so it will be a completely new experience to be on the receiving end. I am told that it takes a minimum of 3 hours to give the transfusion, according to my brother who seems to know about these things, it cannot be given any quicker as this is likely to damage the blood. I am reliably informed by those who have had a transfusion for low iron levels, I will feel like a whole new woman, which I am very much looking forward to. I will also feel like Mo Farrah although I'm not entirely certain that I'll be running any great distance anytime soon.
Friday, 16 December 2016
Feeling Philosophical
It's that time of year for reflection. Another year over and what have you done, to quote John Lennon.
2016 has been one hell of year for any number of reasons.
Firstly I managed to stay alive which is no mean feat.
As some of you are aware I am on a facebook group for secondary breast cancer patients. A lot of my "friends" are wondering if this will be their last Christmas. It's not something that has occurred to me. It could be anyone's last Christmas. Some of them are making memory boxes and books for their children. I am not for two reasons, firstly they would be incredibly tear stained and secondly my children are in their late teens and early twenties so have their memories, I also tell them ad nauseum how much I love them and also they are fully aware of my wit and wisdom on all and every subject.
I also wonder whether we who have been told our horizon is a lot closer than we had initially anticipated are in a better position than the rest of the population. We know our time is limited, we can get our affairs in order, we can appreciate what we have, not that others don't do this. The talk of memory boxes and the like makes me think of Jo Cox, the MP who was murdered, with 2 young children. She had no will and had no time to make memory boxes.
The trouble with being told that your time is very limited is that this fact occupies near every waking moment. This is over and above the joys of dealing with treatment and its side effects. It is very hard to live a "normal" life. At the moment, apart from the overwhelming fatigue, I am actually feeling quite well, I am the epitome of the spirit is willing but the flesh is weak.
I am hoping that 2017 proves to be a better year for all sorts of reasons and presuming that the proverbial bus doesn't get me or you I hope to see many more Christmases.
2016 has been one hell of year for any number of reasons.
Firstly I managed to stay alive which is no mean feat.
As some of you are aware I am on a facebook group for secondary breast cancer patients. A lot of my "friends" are wondering if this will be their last Christmas. It's not something that has occurred to me. It could be anyone's last Christmas. Some of them are making memory boxes and books for their children. I am not for two reasons, firstly they would be incredibly tear stained and secondly my children are in their late teens and early twenties so have their memories, I also tell them ad nauseum how much I love them and also they are fully aware of my wit and wisdom on all and every subject.
I also wonder whether we who have been told our horizon is a lot closer than we had initially anticipated are in a better position than the rest of the population. We know our time is limited, we can get our affairs in order, we can appreciate what we have, not that others don't do this. The talk of memory boxes and the like makes me think of Jo Cox, the MP who was murdered, with 2 young children. She had no will and had no time to make memory boxes.
The trouble with being told that your time is very limited is that this fact occupies near every waking moment. This is over and above the joys of dealing with treatment and its side effects. It is very hard to live a "normal" life. At the moment, apart from the overwhelming fatigue, I am actually feeling quite well, I am the epitome of the spirit is willing but the flesh is weak.
I am hoping that 2017 proves to be a better year for all sorts of reasons and presuming that the proverbial bus doesn't get me or you I hope to see many more Christmases.
Friday, 9 December 2016
Dehydration
I drink a lot, in comparison with most people. However much I drink it is clearly not nearly enough.
I know that Kadcyla is very dehydrating. Many of the side effects, headache, constipation, dry, cracked hands and feet, can all be attributed to dehydration. I seem to have a near permanent dry mouth, which is why I drink a lot of water. When I went out for dinner a couple of weeks ago, I must have drunk about a litre and a half of water, when I got home much later that evening, having not availed myself of the restaurant facilities, I went to the loo and probably only peed out about a teacupful. Clearly I am suffering from chronic dehydration.
I went for my regular blood test prior to treatment and knowing that I was probably a bit dehydrated, I made a special effort to drink even more. The first nurse, (who now is a member of the "she could stick a Bic biro in my vein and I wouldn't notice" club), made two attempts, found lovely veins but no blood. The protocol in the chemo unit is the nurse gets two attempts and then has to call a colleague for further attempts. Not sure what happens if the second nurse has to have two attempts as, fortunately this has never happened. The second nurse accesses the vein near the base of my thumb, which is possibly my least favourite site, with little or no pain. She gets enough blood and then removes the needle. It was without doubt the most painful needle removal ever. In fact it is the only time that a needle removal has hurt. I can only describe it as a sort of bruise like feeling. Furthermore, the pain continued for about another 15 minutes.
I mention this to the great oracle that is Facebook and the general consensus is that the pain is down to being dehydrated. I realise that I am going to have to up my fluid intake by industrial proportions.
The next day is treatment day. Before I leave the house I have probably drunk about pints of water and fruit tea. I consume a further couple of pints of water and fruit juice whilst being treated. When I get home I continue to drink more and more water. It is only by about 9pm that my mouth stops feeling dry. Hooray! There is, naturally, a slight downside to all this drinking, many nocturnal visits to the loo.
So I will continue to drink a couple of lakefuls of water and see what happens next time I go for my blood test.
I know that Kadcyla is very dehydrating. Many of the side effects, headache, constipation, dry, cracked hands and feet, can all be attributed to dehydration. I seem to have a near permanent dry mouth, which is why I drink a lot of water. When I went out for dinner a couple of weeks ago, I must have drunk about a litre and a half of water, when I got home much later that evening, having not availed myself of the restaurant facilities, I went to the loo and probably only peed out about a teacupful. Clearly I am suffering from chronic dehydration.
I went for my regular blood test prior to treatment and knowing that I was probably a bit dehydrated, I made a special effort to drink even more. The first nurse, (who now is a member of the "she could stick a Bic biro in my vein and I wouldn't notice" club), made two attempts, found lovely veins but no blood. The protocol in the chemo unit is the nurse gets two attempts and then has to call a colleague for further attempts. Not sure what happens if the second nurse has to have two attempts as, fortunately this has never happened. The second nurse accesses the vein near the base of my thumb, which is possibly my least favourite site, with little or no pain. She gets enough blood and then removes the needle. It was without doubt the most painful needle removal ever. In fact it is the only time that a needle removal has hurt. I can only describe it as a sort of bruise like feeling. Furthermore, the pain continued for about another 15 minutes.
I mention this to the great oracle that is Facebook and the general consensus is that the pain is down to being dehydrated. I realise that I am going to have to up my fluid intake by industrial proportions.
The next day is treatment day. Before I leave the house I have probably drunk about pints of water and fruit tea. I consume a further couple of pints of water and fruit juice whilst being treated. When I get home I continue to drink more and more water. It is only by about 9pm that my mouth stops feeling dry. Hooray! There is, naturally, a slight downside to all this drinking, many nocturnal visits to the loo.
So I will continue to drink a couple of lakefuls of water and see what happens next time I go for my blood test.
Sunday, 4 December 2016
A Day Is A Long Time In...
I have discovered that there is no predicting anything to do with cancer.
I wrote this on another site a cople of days ago, but I think it succinctly sums up cancer.
Oh how I love this cancermalarkey. It's so excitng.
Yesterday I got up had a shower and was full of pep, vigour and vim, (it's all relative). I did a spot of shopping, had coffee with a friend and an afternoon snooze because I could. Felt very positive and that this is doable.
Today I woke up dragged my weary carass out of bed, went to work, lasted to just before lunchtime before I had to come home and collapse into bed. Think I might plan my funeral.
Can't wait to see what joys await me tomorrow.
As it happens tomorrow brought me the joy of having enough energy to travel to see some relations which was lovely. The following day I was completely pooped. Putting the washing out on the airer required a 20 minute lie down afterwards.
Ah well, worse things happen at sea.
I wrote this on another site a cople of days ago, but I think it succinctly sums up cancer.
Oh how I love this cancermalarkey. It's so excitng.
Yesterday I got up had a shower and was full of pep, vigour and vim, (it's all relative). I did a spot of shopping, had coffee with a friend and an afternoon snooze because I could. Felt very positive and that this is doable.
Today I woke up dragged my weary carass out of bed, went to work, lasted to just before lunchtime before I had to come home and collapse into bed. Think I might plan my funeral.
Can't wait to see what joys await me tomorrow.
As it happens tomorrow brought me the joy of having enough energy to travel to see some relations which was lovely. The following day I was completely pooped. Putting the washing out on the airer required a 20 minute lie down afterwards.
Ah well, worse things happen at sea.
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