Radiation Therapy

[4rkidz]

(((Hugs))), hope things are getting better for all, AW hope you can get sleep.. Hopefully for everyone dealing with this horrible disease you get some well needed distractions coming up (figure skating)

 

[Spun Silver]

How is your hubby Spun Silver?

He has some urinary and digestive inconveniences but they arent too bad -- the main thing is fatigue (possibly from the hormone therapy he is doing together with the radiation). He is sleeping at least 12 hours a day -- it's disturbing to the point of making me wonder if he should even complete the therapy (either of them). It's not so much the next 5 weeks that concern me as the fact that side-effects can be long-lasting or even permanent. With all his health issues, it is hard to think he will have a long life, and I want him to have as much energy as possible to live well while he's here. He's still recovering from a severe brain injury, which also left him with a lot of fatigue, so we're talking tired on top of tired on top of tired. On the other hand, his prostate cancer is a Gleason 8 on a scale of 10. None of the options is great.

It's hard to get him to talk about any of this. He is happy for me to manage his medical care (which has been overwhelming the past two years) but cutting out of cancer treatment early is too big a decision for me to make for him. But I am worried about how depressed he will be if the side effects do persist.

Thanks for asking, Aussie Willy. I hope you got another good night's sleep.

 

[nlloyd]

He has some urinary and digestive inconveniences but they arent too bad -- the main thing is fatigue (possibly from the hormone therapy he is doing together with the radiation). He is sleeping at least 12 hours a day -- it's disturbing to the point of making me wonder if he should even complete the therapy (either of them). It's not so much the next 5 weeks that concern me as the fact that side-effects can be long-lasting or even permanent. With all his health issues, it is hard to think he will have a long life, and I want him to have as much energy as possible to live well while he's here. He's still recovering from a severe brain injury, which also left him with a lot of fatigue, so we're talking tired on top of tired on top of tired. On the other hand, his prostate cancer is a Gleason 8 on a scale of 10. None of the options is great.

It's hard to get him to talk about any of this. He is happy for me to manage his medical care (which has been overwhelming the past two years) but cutting out of cancer treatment early is too big a decision for me to make for him. But I am worried about how depressed he will be if the side effects do persist.

Thanks for asking, Aussie Willy. I hope you got another good night's sleep.

Sorry to hear about the extent of your husband's health problems, Spun Silver. It sounds like it has been very challenging for him and demanding for you also. Hoping you are able to practice good self-care in the midst of it.

 

[skatefan]

@Spun Silver I'm sorry that your husband is struggling with his treatment. Having drastic hormonal changes on top of the radiotherapy is very difficult. I wonder whether it would be possible to have a brief respite from the radiotherapy?

@Aussie Willy It's good to hear you are coping with your treatment but if you are having red/burning skin, I'm sure there's some special type of cream which can be prescribed to help you cope with that problem. I believe it's put on the skin prior to treatment then slathered on afterwards as well. A friend's skin broke down but with care it did heal completely after quite a short time. Hope all goes well while you have your last sessions.

 

[Aussie Willy]

Skatefan - they are very good at the hospital with giving gels and creams for the skin from the first day and have changed the mix as things have changed. I am also doing salt baths to help it heal. So far as gross as it looks it is not infected and probably is as it should. I have my doctor's appointment tomorrow so it will be checked then.

 

[Aussie Willy]

Spun Silver - oh dear your poor husband. That sounds really rough. Sending thoughts your way.

 

[Marlowe]

He has some urinary and digestive inconveniences but they arent too bad -- the main thing is fatigue (possibly from the hormone therapy he is doing together with the radiation). He is sleeping at least 12 hours a day -- it's disturbing to the point of making me wonder if he should even complete the therapy (either of them). It's not so much the next 5 weeks that concern me as the fact that side-effects can be long-lasting or even permanent. With all his health issues, it is hard to think he will have a long life, and I want him to have as much energy as possible to live well while he's here. He's still recovering from a severe brain injury, which also left him with a lot of fatigue, so we're talking tired on top of tired on top of tired. On the other hand, his prostate cancer is a Gleason 8 on a scale of 10. None of the options is great.

It's hard to get him to talk about any of this. He is happy for me to manage his medical care (which has been overwhelming the past two years) but cutting out of cancer treatment early is too big a decision for me to make for him. But I am worried about how depressed he will be if the side effects do persist.

Thanks for asking, Aussie Willy. I hope you got another good night's sleep.

Have you discussed with his doctors your concerns about the side effects? I think it is different for everyone - some side effects may disappear altogether, some may lessen, some may get worse, some may not show up for years. I have been told that it may be a year or even 2 years before I feel back to "normal" - whatever that may be - but everyone that I talk to who is a cancer survivor says "your body has been through a lot - chemo and radiation are taxing on the body - let your body heal. Be patient. Rest when you need to." So, your husband's need to sleep may be just the healing process. I would encourage you to take your concerns to the doctor and maybe help you to get a clearer sense of whether his need to sleep now is something for you to be worried about.

My acupuncturist suggested getting an aloe leaf, splitting it, and rubbing the aloe juice on the skin to help alleviate the burning and the rash. I have a good friend who went through radiation for breast cancer who swears by the healing powers - and soothing powers - of the aloe plant. You might want to google it - see if you think it might help.

Keeping a positive attitude, eliminating stress, eating healthy - all of these things are important for recovery. Keep up the good fight! And surround yourself with those who bring you joy!

 

[kwanfan1818]

I'm glad you got painkillers, Aussie Willie. Sometimes, though, they can make constipation worse.

I had to change my diet, and while it didn't cause severe constipation, it was no fun. For maintenance, I've been taking 4-6 fiber capsules a day, and that's worked well. It's pretty cheap, but you do have to drink a lot of water when taking them.

 

[Simone411]

Good advice, @kwanfan1818. A good stool softener like Dulcolax will also help with the constipation. It's not too expensive, either. The fiber capsules will help, too.

Still keeping you in my thoughts and prayer, Aussie Willie. <3

 

[Spun Silver]

Well, at least hubby's constipation is fine on the colase or col-rite and a return to prune juice. He did not need the $500 suppositories!

@Marlowe, thanks for sharing your experience. I have talked to his doctors. The urologist is much more understanding than the radiation oncologist who thinks his way is the only right way. :/ They are more or less partners, so I am giving them a little time to communicate while I try to figure out how to have a good conversation about it with hubby. Part of the problem is what you say, that the long-term side-effects vary and we can't know in advance what they will be. I am not worried about his sleep now, per se, but what I have read about long-term side effects of radiation and hormone therapy for prostate cancer. My fear is that he will be more susceptible to fatigue (and depression, which can present as fatigue) because of his brain injury.

The aloe leaf sounds good!

Thanks to everyone for the supportive comments and wishes. What a sweet thread!

 

[Marlowe]

The pain medication does cause constipation - I swear I din't really know what constipation was until I was on pain med! Yikes. For me the best solution was fiber-con, which one of the radiation doctors suggested. It seemed pretty natural. But I also got off the pain melds and that helped. Still, chemo itself can cause constipation.

It is so important to find a network of supportive people when you go through this - it is indeed heartwarming - and that feeling of gratitude is healing - and at times overwhelming.

 

[Aussie Willy]

It is so important to find a network of supportive people when you go through this - it is indeed heartwarming - and that feeling of gratitude is healing - and at times overwhelming.

What is good are the important people do contact you and ask you how you are at a time like this. Very much appreciated.

 

[skatefan]

@Aussie Willy I think @Marlowe made a great suggestion with the aloe leaf, wish I'd thought of that for my friend!
A few years ago my son was scalded on his knee (almost boiling water from a flask) and fresh aloe was suggested - I bought a plant and regularly cut 1/2" slices from the fat fleshy leaves which he used on the scald. It healed really well and there is no scarring. I think it's worth a try - it's also very cooling

 

[Aussie Willy]

Time for an update.

My treatment is on hiatus for a week (still have 8 treatments to go). My treatment area is red raw (which being the worst place you could have this kind of treatment and the area is horrible, manky and disgusting), I wasn't sleeping so totally exhausted, had no appetite (couldn't eat at all) and pretty much got to the point yesterday where I broke down because I was so exhausted, uncomfortable and in pain. Put it this way - it is bad when I have to ring my mum and ask her to come and drive me to my appointment and get stuff for me. She had basically put things on hold to offer anyway but I hadn't taken her up on the offer until now. Also she said that she was surprised, along with one of the nurses, that I had lasted this long without breaking down.

So have upped the pain killers (I was being too conservative), sorted out the medical dressings and gels so I now can get comfort at night and a week's break will help to at least let some healing take place before another dose.

Thankfully I can do work at home which is actually a great distraction from what I am going through. It really does help to not disassociate from those normal things in life and still have that connection - something very important for workplace health and wellbeing. Also my manager and work colleagues gave me a $100 massage voucher. And I got flowers from my one of my aunts and also the skating association, and my sister gave me cat socks .

I know people have said that I have handled this very positively, but I really did get to the lowest of the lows yesterday. I am hoping that I can get through the rest without too much more drama and lots and lots of pain killers.

 

[Spun Silver]

Oh, that sounds trying in the utmost, @Aussie Willy. I am so glad that you could escape a bit through work and that you received so much support. Sending hugs and a virtual rope to help pull you through these last 8 treatments. I am way up and across the planet in New Jersey, so you can pull as hard (and with as many expletives) as you need to. You'll make it!

 

[Japanfan]

I know people have said that I have handled this very positively, but I really did get to the lowest of the lows yesterday. I am hoping that I can get through the rest without too much more drama and lots and lots of pain killers.

If that is the lowest of the lows, I'd say you are actually doing well Aussie Willy. I expect I would have broken down much sooner than you in the same situation, without being exhausted from sleep deprivation.

I'm impressed you are maintaining your work responsibilities from home. While it's true that having a distraction from an unpleasant situation can be really helpful, it can be really hard to focus when one is not only stressed and exhausted, but also in pain. A lot of people would take the easier path of just checking out, so good for you!

 

[skatefan]

I'm so very sorry to hear you're having such a tough time Aussie Willy. I wish there was something I could do to help.
I know you've been offered the best available treatment and advice but it must be awfully difficult to know you have more sessions to deal with. I wish you all the very best and hope you find the strength to continue to the end of your treatment.

 

[purple skates]

(((Aussie Willy)))

 

[skatesindreams]

Sending more support, Aussie Willy.

 

[Aussie Willy]

Japanfan - doing work is probably one of the best things I could do. My manager has been fantastic. I only have a limited amount of sick leave available so by doing work it means I can take less leave without pay. But also it really is good to keep my mind active and in another headspace and deal with something I can control. Just pump up the painkillers and I can get through it. Also I can now call myself a ghost (I may not be there but my presence will be felt when I have to chase up the guys for things).

 

[Aussie Willy]

Just an update ...

I finished my treatment today. Thank goodness it done and dusted. It was good having the break in treatment, even though the last 8 treatments have brought on further but less extreme side effects (like very painful anal area). I am still doing work at home which has been really good for my morale and to keep distracted. But now I can focus on recovering. I also have the research that I am part of which will be good to do. And have all my prescriptions, medications, dressings and gels so I can be comfortable at home.

I feel fortunate that a couple of the side effects that I was told I might get didn't eventuate, but other things ended up being much worse than what I could have envisaged. At one point I ended up very dehydrated because I was dealing with other side effects which were very stressful and distressing. Such a mixed bag of things. It was almost every weekend ended up with something different to deal with.

I haven't felt really fatigued yet. Will have to wait and see what happens. But I am hoping that I can get back to work next week, even if it is only going in part time, just to be part of it.

After all that, I think the thing that has appreciated my situation more than anyone is my cat. He has loved having me at home.

 

[skatesindreams]

I'm glad to hear about your progress; and that you have survived the "unpleasantness" of treatment!
I hope that all continues to go well in the coming weeks, as you return to your "normal" schedule.

 

[quartz]

Sending gentle hugs and best wishes for speedy healing. So glad to hear your treatments are done.

 

[Alixana]

((Aussie Willy)) so glad you're done. I hope the next few weeks go smoothly and that you're able to pick up your life and keeping moving forward! And my cat also was my perfect nurse -- by me 24/7 while I was at home. Love her to bits.

 

[Spun Silver]

Congratulations on getting it over with, Aussie Willy. My husband is just finishing up too. He has had an easier time of it than you have. All the best for your post-radiation recovery and return to work. So glad you had kitty to accompany you through the ordeal.

Coincidentally, during this period of radiation, one of our cats developed the habit of sitting on my husband's lap. We have had her for 8 years and she never did that before. I'm sure she helped him through it as well.

 

[KatieC]

My Elie (in the avatar) slept with me every night from the time I came home from surgery until the end of radiation. Between Elie, and nightly calls from my best friend who moved out west, I made it through pretty easily. Not sure how things would have been without them. I had a family member warn me not to tell anyone, because people would just tell me horror stories. I didn't tell the whole world, but certainly those I did tell were wholly supportive and they kept me cheerful and on track. @Aussie Willy , I think you're doing great.

 

[Aussie Willy]

Congratulations on getting it over with, Aussie Willy. My husband is just finishing up too. He has had an easier time of it than you have. All the best for your post-radiation recovery and return to work. So glad you had kitty to accompany you through the ordeal.

Coincidentally, during this period of radiation, one of our cats developed the habit of sitting on my husband's lap. We have had her for 8 years and she never did that before. I'm sure she helped him through it as well.

Glad you husband has got through it Spun Silver. I know you said he was doing it rough as well. All the best for his recovery too.

 

[4rkidz]

Glad you are recuperating @Aussie Willy