On Saturday I went out for dinner with Si, best mate and business partner, and our wives. We were talking about me (as I like to do :) ) and I said that when I'd learned about my cancer and then during and after treatment I didn't really do any internet searches on the condition or the treatment. Now I'm an information whore, usually I can't get enough information about something, so what stopped me this time?
Whenever I did a search, the 'news' was always crap! For example, during and after treatment I had a mouth that was full of mucous. I literally could not swallow so I spent weeks with a bowl and tissues simply spitting up the mucous. This is not pleasant (as you can imagine). So I want to know how long this is going to last and get onto the internet. All I read are horror stories about people still having mucous twelve months after treatment. Same with saliva, people are still dry years after treatment. I realised very quickly that what I was seeing was the worst end of the scale, people who are still suffering and need help and re-assurance that they will get better. I imagine that most people do not fall into this category, they're more likely to be healing much quicker than the folks who are looking for help on the forums.
So, because Si told me I should, if anybody stumbles across this post, my mucous cleared up after about 5 weeks (3 weeks after radiotherapy ended), my saliva is much better, my neck is still sore and my shoulder still hurts, but they are healing. I'm not as tired or as down as I was. And all this has happened very quickly. It does get better. For me, it seems, I have healed very quickly, I was back in work weeks after radiotherapy. For you and others it may not be so quick, but don't think that all the horror stories you read are the only stories out there.
Monday, February 08, 2010
Physiotherapy
I've had trouble with my right shoulder since the radiation treatment and it's steadily gotten worse since then. Two weeks ago I flew to Copenhagen and was patted down by security at the airport. When I "assumed the position" I realised that I couldn't hold my right arm out sideways for more than a few seconds!
I'd asked for physio before Christmas and it finally started last week.
When I saw the physiotherapist (by sheer coincidence it turned out that I know her husband) she examined me and told me that my right shoulder has moved forward in its socket. There's a skeleton in the department and she showed me the ball and socket on the skeleton. The socket is very shallow, turns out this is one of the reasons we have so much movement in the shoulder, but it's also the reason the socket doesn't grip the ball very well and so the shoulder gets out of 'true' very easily.
The treatment is simple but prolonged - move the shoulder back into place. I've started with some simple movements and some (very) painful stretches. Then it's back there every other week or so to check progress and get more work. The good news is that it's completely fixable, my fear was that I had nerve damage and I'd have this painful shoulder forever but that's not going to be the case.
I'd asked for physio before Christmas and it finally started last week.
When I saw the physiotherapist (by sheer coincidence it turned out that I know her husband) she examined me and told me that my right shoulder has moved forward in its socket. There's a skeleton in the department and she showed me the ball and socket on the skeleton. The socket is very shallow, turns out this is one of the reasons we have so much movement in the shoulder, but it's also the reason the socket doesn't grip the ball very well and so the shoulder gets out of 'true' very easily.
The treatment is simple but prolonged - move the shoulder back into place. I've started with some simple movements and some (very) painful stretches. Then it's back there every other week or so to check progress and get more work. The good news is that it's completely fixable, my fear was that I had nerve damage and I'd have this painful shoulder forever but that's not going to be the case.
Wednesday, January 20, 2010
Two Hospital Appointments
Yesterday (Tuesday) I had another follow up. These will be monthly for the first year, then bi-monthly and finally 6 monthly until I hit the 5 year mark, then I'll be set free.
Was again told that everything was OK. I asked about my shoulder. As well as the aches I get it in I can't shrug the shoulder. If I try and shrug my shoulders the left one goes up but the right one doesn't! This is all to do with the damage done by radiotherapy to the trapezius nerve, the nerve that runs through the shoulder. I should get some improvement (although I don't think it will ever heal) and I will get physiotherapy to help with the mobility. Along with everything else the shoulder will take 'at least' 12 months to get better, this also applies to my taste and my saliva. I also saw my dentist yesterday who was pleased with the state of my mouth and actually said that my saliva production wasn't too bad.
Today I had my PEG removed. This was put in back in August to help me feed during radiotherapy. Initially I really didn't want the thing, but during August and September was really glad I had it, it was the only way I could eat and drink back then. I haven't used it since the end of September/beginning of October so was happy to have it taken out. The procedure was simple, cut the tube (which lets the air out of the 'anchor' that was sitting in my stomcah) and pull hard. It feels tender at the moment but that's a tiny price to pay for getting rid of the thing. It means I can finally ditch the white t-shirts I've been wearing for the last 6 months to hold it in place.
Another step on the way!
Was again told that everything was OK. I asked about my shoulder. As well as the aches I get it in I can't shrug the shoulder. If I try and shrug my shoulders the left one goes up but the right one doesn't! This is all to do with the damage done by radiotherapy to the trapezius nerve, the nerve that runs through the shoulder. I should get some improvement (although I don't think it will ever heal) and I will get physiotherapy to help with the mobility. Along with everything else the shoulder will take 'at least' 12 months to get better, this also applies to my taste and my saliva. I also saw my dentist yesterday who was pleased with the state of my mouth and actually said that my saliva production wasn't too bad.
Today I had my PEG removed. This was put in back in August to help me feed during radiotherapy. Initially I really didn't want the thing, but during August and September was really glad I had it, it was the only way I could eat and drink back then. I haven't used it since the end of September/beginning of October so was happy to have it taken out. The procedure was simple, cut the tube (which lets the air out of the 'anchor' that was sitting in my stomcah) and pull hard. It feels tender at the moment but that's a tiny price to pay for getting rid of the thing. It means I can finally ditch the white t-shirts I've been wearing for the last 6 months to hold it in place.
Another step on the way!
Wednesday, January 06, 2010
Cancer survivors 'facing neglect'
Interesting piece on long-term cancer care.
Like I said yesterday, Cancer is for life. It's amazed me (although it possibly shouldn't have) that the recovery from Cancer never really stops. I'm going to have issues for years, maybe forever. None of them are really serious at the moment but I have no idea how they will develop as I get older. I can certainly understand why people suffer from "depression and anxiety", not necessarily because of the cancer but because of the after effects of the treatment. Cancer treatment is like medieval agriculture, slash and burn. Slash out the tumor with surgery and burn away any residuals with radiotherapy, I guess you could throw in chemical warfare as well if you have chemotherapy.
People who haven't had treatment for cancer are completely unaware of this (understandably so). I'm 4 months out of treatment and I look well, at least according to everybody I meet. What people don't see are the hidden issues which I've mentioned here before: my throat is still swollen; my cheek is still damaged (so no spicy food); my scar is tight; my arm and shoulder suffered damage from the radiation and ache a lot of the time; I get tired quickly; I get down occasionally; I can't taste properly; I have a dry mouth; I talked about the dental issues yesterday.
This sounds like a bunch of complaining (and it is :) ), and I'm 'lucky' as it's likely that my cancer is cured. But I'm not the worst off here, not by a long way if the article I referenced above is correct, and in my experience there's no reason to doubt it.
So if you know somebody who's had cancer, spare a thought for the aftermath.
Like I said yesterday, Cancer is for life. It's amazed me (although it possibly shouldn't have) that the recovery from Cancer never really stops. I'm going to have issues for years, maybe forever. None of them are really serious at the moment but I have no idea how they will develop as I get older. I can certainly understand why people suffer from "depression and anxiety", not necessarily because of the cancer but because of the after effects of the treatment. Cancer treatment is like medieval agriculture, slash and burn. Slash out the tumor with surgery and burn away any residuals with radiotherapy, I guess you could throw in chemical warfare as well if you have chemotherapy.
People who haven't had treatment for cancer are completely unaware of this (understandably so). I'm 4 months out of treatment and I look well, at least according to everybody I meet. What people don't see are the hidden issues which I've mentioned here before: my throat is still swollen; my cheek is still damaged (so no spicy food); my scar is tight; my arm and shoulder suffered damage from the radiation and ache a lot of the time; I get tired quickly; I get down occasionally; I can't taste properly; I have a dry mouth; I talked about the dental issues yesterday.
This sounds like a bunch of complaining (and it is :) ), and I'm 'lucky' as it's likely that my cancer is cured. But I'm not the worst off here, not by a long way if the article I referenced above is correct, and in my experience there's no reason to doubt it.
So if you know somebody who's had cancer, spare a thought for the aftermath.
Tuesday, January 05, 2010
Radiotherapy and teeth
Another day another hospital appointment. Today was with the post-radiotherapy dental consultant.
Saliva contains anti microbial agents and so helps protects against dental caries (tooth decay to you and me) and as I now only have one saliva gland I need to really (really) look after my teeth. The consultant tells me the the biggest issue is receeding gums which cause the roots of the teeth to be exposed. These are softer than the teeth themselves and so are more prone to decay.
I need: regular x-rays, especially "between" the teeth (however that works), to check for decay; a good clean and scale; then really good hygiene, meaning cleaning two to three times a day; swilling my mouth with toothpaste at night (no rinsing) before I go to bed to coat the teeth with flouride; nothing to eat or drink at least 30 minutes before I go to bed; and I have to use a prescription high flouride toothpaste. Oh, and I'll probably need to do this forever!
Not terrible news (far from it), but it shows again that Cancer is for life, not just for Christmas!
Saliva contains anti microbial agents and so helps protects against dental caries (tooth decay to you and me) and as I now only have one saliva gland I need to really (really) look after my teeth. The consultant tells me the the biggest issue is receeding gums which cause the roots of the teeth to be exposed. These are softer than the teeth themselves and so are more prone to decay.
I need: regular x-rays, especially "between" the teeth (however that works), to check for decay; a good clean and scale; then really good hygiene, meaning cleaning two to three times a day; swilling my mouth with toothpaste at night (no rinsing) before I go to bed to coat the teeth with flouride; nothing to eat or drink at least 30 minutes before I go to bed; and I have to use a prescription high flouride toothpaste. Oh, and I'll probably need to do this forever!
Not terrible news (far from it), but it shows again that Cancer is for life, not just for Christmas!
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