Holy shamoly. The new drug is a complete nightmare. I felt fine on the day it was administered and the following day but it soon started going all wrong. I started having muscle and joint pain on Wednesday. This got progressively worse to the point where I could hardly move. I had to start my granocyte reconstitution injections - didn't quite enjoy having to inject myself - and I reacted to that, too. By Friday evening I had a high temperature. I phoned the out-of-hours medical oncologoy department and the on-call oncologist made me go to Guy's Hospital as infections can be life-threatening when you are getting chemo. Thankfully our friend Sarah was able to drive me there or I don't know how I would've coped. I was told I'd have to wait ten minutes before someone would see me. Some two hours later a haemotologist came to see me. By this time my temperature was down and I wanted to go home but a blood specialist could of course not let me go. She tried to get some blood but my veins keep on collapsing and it was only on her third attempt that she managed to draw sufficient blood - I feel like a voodoo doll. Then I was left there waiting for the results - there being a ward full of cancer patients with infections, all in various degrees of pain and/or discomfort. A nurse came round at about midnight to fill in one of these stupid forms the NHS is so keen on, and that took a while. Then at 3 am I had to have another blood test - the other test had revealed that my blood count was fine, this was just to verify if there'd been a change. Because I still had a bit of a temperature I was put on antibiotics. The full lights came on at 6 am but since I couldn't sleep because of all of the noise it didn't bother me too much. Breakfast was served at 9 am. Is no one in the NHS aware of the benefits of good nutrition? I asked for some soya milk - 'I could get some ordered from the kitchens' - then thought herbal tea would be simpler to get - 'That's far too posh'. So I had toast with jam. The oncologists started doing their rounds and I was seen at about 11 am, when I was told I could go home. Excellent, I thought. That was before stupid bureaucracy kicked in. Although the required antibiotics could be found in my bedside cabinet staff are not allowed to give you these to take home. A new prescription has to be written and collected. They said they would take care of it for me. So I sat and waited... and got my medication at 3.30 pm. Four and a half hours sitting in considerable pain and in a ward full of people with infections. Whoever thought of that system needs shooting. Ok, rant over.
I was in a lot of pain up until yesterday and was basically stuck in bed. I've also been reacting - I think - to the daily injections, which have thankfully ended today. I've had a temperature of almost 39C degrees but I've flatly refused to phone the oncology department again. Up until yesterday, when I came up in a rash and found a wee, painful lump on my arm. I tried phoning the out-of-hours service again only to be told: 'This department is now closed, please phone later. Goodbye'. Thankfully my surgery was open late so I phoned my GP, who believes I have thrombosis - I really don't think my veins are having a particularly good time of it.
So here I am today. I'm starting to feel better. The pain's almost gone and I've not had a fever yet, but that tends to happen during the night. Without the injections I'll be able to see if the fever could be caused by something else - fingers crossed not. I have to say I have really, really struggled this time to the point where I haven't even bothered trying to watch Liverpool - there's an indication for you. I've got to go and see my oncologist next Wednesday and for once I will be laying it on thick.
Needless to say the Christmas cards haven't happened - apologies, and thank you, to all of you who sent me one. I will do better next year.
MERRY CHRISTMAS to every single one of you - hope you have a grand one.
21 December 2006
12 December 2006
New drug
Thankfully my blood count recovered in time for me to get chemo yesterday. Although I have to admit I spent the bulk of last week hoping it wouldn't as I was so tired - fatigue is undoubtedly accumulating and I'm struggling with it. Which is one of the reasons I haven't emailed anyone recently - apologies for that. So far so good with the other drug so I'll tackle the emails very soon.
As yet I'm not suffering from any side-effects. I had mild nausea yesterday but that went after I'd eaten. I am very tired but whether that's the drugs or the continuation of a constant theme is hard to know. Most importantly I didn't suffer from any allergic reaction, which I have to say had me worried, especially the anaphylactic shock part. The steroids I had to take actually ensure that the most severe effects are kept to a miminum but I had no symptom at all. Fatigue, hair loss (what hair?) and painful joints and muscles are likely to be the worst problems this time round but since I already tick two of these boxes I'm not particularly worried. Incidentally I don't know if I've mentioned this on here yet but I look a bit like Litvinenko. When that picture of him lying in hospital was first released I thought 'Oh, um, no, you're imagining things', especially as I don't look like him when we both look healthy. But then I let it slip in a couple of conversations with people who see me regularly and they went 'Yes, that's what I was thinking, too'. Some people know how to make you feel good about yourself. Having said that, considering that the side-effects up until now have included: nausea, fatigue, heartburn, sore and bleeding gums, mouth ulcers, sore and watery eyes, collapsing veins, hair loss, effect on bone marrow (leading in low blood count and shortness of breath) and menopausal symptoms, most of which have kept me awake at night, I can hardly expect to be a picture of health.
The chemo day unit has moved to the tenth floor (from the third) and is a more pleasant area, though not ideal by any means. The waiting room is minute, and compared to some, I look positively healthy. Especially at this time of the year, with all the bugs doing the rounds. However, I'm starting to 'make friends' with those people I see regularly and it's actually nice being able to share our experiences and little pieces of advice with one another. As I've already said I can't complain because the level of support I have got has been second to none, and I can't thank people enough. However, sharing with people who know exactly what you are going through offers additional strength and the ability to be completely open. Anyway, I managed to get a nice cosy place, as far as it goes in such a place, in a corner yesterday and proceeded to watch The Incredibles on my portable media player. It did help settle my nerves as I really don't enjoy that place. Another piece of good news is that there will be a separate room for those receiving Herceptin. Herceptin is not a chemo drug per se, as it doesn't destroy healthy cells. Instead, it targets the cancer cells and also attracts the body's immune cells to help destroy the cancer cells. This means that the side-effects are virtually non-existent. Since I'll be on Herceptin for a whole year, receiving it every three weeks, I'd rather be in a room where people don't look like they're on the verge of collapsing - very selfish I know but a lot kinder on my nerves.
I'd better be off for the time being. I hope you're all well and got your Christmas cards and shopping under control - I haven't of course, nothing new there.
As yet I'm not suffering from any side-effects. I had mild nausea yesterday but that went after I'd eaten. I am very tired but whether that's the drugs or the continuation of a constant theme is hard to know. Most importantly I didn't suffer from any allergic reaction, which I have to say had me worried, especially the anaphylactic shock part. The steroids I had to take actually ensure that the most severe effects are kept to a miminum but I had no symptom at all. Fatigue, hair loss (what hair?) and painful joints and muscles are likely to be the worst problems this time round but since I already tick two of these boxes I'm not particularly worried. Incidentally I don't know if I've mentioned this on here yet but I look a bit like Litvinenko. When that picture of him lying in hospital was first released I thought 'Oh, um, no, you're imagining things', especially as I don't look like him when we both look healthy. But then I let it slip in a couple of conversations with people who see me regularly and they went 'Yes, that's what I was thinking, too'. Some people know how to make you feel good about yourself. Having said that, considering that the side-effects up until now have included: nausea, fatigue, heartburn, sore and bleeding gums, mouth ulcers, sore and watery eyes, collapsing veins, hair loss, effect on bone marrow (leading in low blood count and shortness of breath) and menopausal symptoms, most of which have kept me awake at night, I can hardly expect to be a picture of health.
The chemo day unit has moved to the tenth floor (from the third) and is a more pleasant area, though not ideal by any means. The waiting room is minute, and compared to some, I look positively healthy. Especially at this time of the year, with all the bugs doing the rounds. However, I'm starting to 'make friends' with those people I see regularly and it's actually nice being able to share our experiences and little pieces of advice with one another. As I've already said I can't complain because the level of support I have got has been second to none, and I can't thank people enough. However, sharing with people who know exactly what you are going through offers additional strength and the ability to be completely open. Anyway, I managed to get a nice cosy place, as far as it goes in such a place, in a corner yesterday and proceeded to watch The Incredibles on my portable media player. It did help settle my nerves as I really don't enjoy that place. Another piece of good news is that there will be a separate room for those receiving Herceptin. Herceptin is not a chemo drug per se, as it doesn't destroy healthy cells. Instead, it targets the cancer cells and also attracts the body's immune cells to help destroy the cancer cells. This means that the side-effects are virtually non-existent. Since I'll be on Herceptin for a whole year, receiving it every three weeks, I'd rather be in a room where people don't look like they're on the verge of collapsing - very selfish I know but a lot kinder on my nerves.
I'd better be off for the time being. I hope you're all well and got your Christmas cards and shopping under control - I haven't of course, nothing new there.
06 December 2006
The results are in
I went to see my oncologist this morning and the news is good. Volume-wise, it appears that Vicky has shrunk by just under 62%. I'm not too sure about this figure as measurements from the first MRI scan were two-dimensional, whereas measurements from last week's scan were three-dimensional. So we had to estimate the initial third dimension. 62% may well be a conservative estimate but I'll take it and won't complain. I'm just hoping we got it right, 62% sounds too good to be true, even if the oncologist wasn't that surprised.
Bad news as far as this stupid blood count goes as it's half what it should be. And this has really annoyed me because it'll mean a long day on Monday, should the blood count have recovered by then. I have got my steroids to take on Sunday, Monday and Tuesday to try and minimise any potential allergic reaction to the next drug (Taxotere, also known as Docetaxel). The change of drugs half-way through treatment appears to make it more effective but no one could explain why. Just one of those things. I also have six "granocyte reconstitution" liquid thingybobs and syringes for injection, which is supposed to boost my blood count as Taxotere actually has a worse impact on blood count than the drugs I've been on so far - hurrah.
I got back home and received a phone call from a chemo nurse telling me that the blood test revealed an abnormality - my potassium level is too high - and I needed an urgent blood test. The nurse asked if I could back to hospital but I said I was too tired. So she told me to go to my surgery and get it done there. So I went to my surgery and was told by a rather, um, inflexible receptionist that I could only get a blood test in the morning. At which point I could've just burst into tears. Back home I went, phoned the chemo nurse again and she really insisted that I get that blood test done today. At this point I did burst into tears. So, rather embarrassingly, my Mum took charge of things. A nurse from the surgery came to our house, got the blood and took it back to the surgery, where a courier was waiting to take the blood to hospital. I know the NHS gets a lot of criticism for one reason or another but I simply can't fault them. Not only am I not paying one penny towards the cost of my treatment they have taken charge of everything - I simply turn up where I'm supposed to and that's it. Anyway, I am extremely grateful to my Mum for sorting this one out, and boy is that receptionist going to get a dirty look next time I see her.
So here I am. I am fairly exhausted but fine otherwise. The only minor problem now is bleeding and sore gums but I have a mouthwash which helps a bit.
A Benfica win tonight would make my day, mind, but I don't see it happening.
Bad news as far as this stupid blood count goes as it's half what it should be. And this has really annoyed me because it'll mean a long day on Monday, should the blood count have recovered by then. I have got my steroids to take on Sunday, Monday and Tuesday to try and minimise any potential allergic reaction to the next drug (Taxotere, also known as Docetaxel). The change of drugs half-way through treatment appears to make it more effective but no one could explain why. Just one of those things. I also have six "granocyte reconstitution" liquid thingybobs and syringes for injection, which is supposed to boost my blood count as Taxotere actually has a worse impact on blood count than the drugs I've been on so far - hurrah.
I got back home and received a phone call from a chemo nurse telling me that the blood test revealed an abnormality - my potassium level is too high - and I needed an urgent blood test. The nurse asked if I could back to hospital but I said I was too tired. So she told me to go to my surgery and get it done there. So I went to my surgery and was told by a rather, um, inflexible receptionist that I could only get a blood test in the morning. At which point I could've just burst into tears. Back home I went, phoned the chemo nurse again and she really insisted that I get that blood test done today. At this point I did burst into tears. So, rather embarrassingly, my Mum took charge of things. A nurse from the surgery came to our house, got the blood and took it back to the surgery, where a courier was waiting to take the blood to hospital. I know the NHS gets a lot of criticism for one reason or another but I simply can't fault them. Not only am I not paying one penny towards the cost of my treatment they have taken charge of everything - I simply turn up where I'm supposed to and that's it. Anyway, I am extremely grateful to my Mum for sorting this one out, and boy is that receptionist going to get a dirty look next time I see her.
So here I am. I am fairly exhausted but fine otherwise. The only minor problem now is bleeding and sore gums but I have a mouthwash which helps a bit.
A Benfica win tonight would make my day, mind, but I don't see it happening.
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