Radiation treatment has begun

[Marguerite]

Well, I've had four days of treatment now. The first one was difficult, my right arm was at a slightly different angle which made it very painful, the way my shoulder is right now. I thought that was what I was going to have to put up with each time, but actually it's worked out over the next few days. I have to lie on my back with my right arm up and resting in a couple of cradles, to hold it still. I got the two tiny tattoos a few weeks ago; they use those to line up the machine. They are short of machine time and the waiting list is long; I've been put on a 9 day fortnight program which means my treatment will last for six weeks, not five. Today (Friday) is my first day off.

The place is actually quite nice. I arrive, park out the front in the spaces reserved for cancer patients if there are any spaces there, then let them know at the front desk. I have a time I'm supposed to be there but this week I had to arrive a lot earlier; I was prepared to wait, but it meant that if someone else was a little bit late (and even if you're still finishing off a cup of coffee, they will skip you and come back to you later) I was there to fill in a space. So I got seen sooner, which was good.

While we wait, there are some comfortable, padded chairs we can wait in. The waiting room is generally about three quarters full of people waiting - friends, family and patients. Various types of cancer in various stages of severity. We tend to not go into too much detail unless it's clear it will be OK to talk about it. Some people don't like to talk about their cancer, others are OK with it. Yesterday a woman I met & I were talking about things, including medication and general doctor whinges, when another woman nearby got up and moved. Oh well, it's a big enough lounge... but generally a conversation like tat has others joining in.

There are baskets of wool and knitting, so the knitting of squares for "Wrapped With Love" continues while we wait. If we want to knit, we reach over and help ourselves to whatever was left by previous patients. Personally, I at least try to finish a row of knitting before I leave.

We sit and chat, or help ourselves to free coffee or tea (instant - can't have everything) while we wait. Our name is eventually called and we go into a changeroom near the machine we've been allocated to. I'm on machine two. Once you're booked in for a particular machine, that stays your machine for the duration of your treatment. In the changeroom I have to strip to the waist then put on a gown. I then sit outside to wait, then I go in when called to the treatment room. There I lie on the table (it's a bit like an ultrasound set-up) while they arrange the various cradles for my right arm. I have to get my right arm out of the gown so I'm uncovered totally on the upper right body so the machine can be set up. Then I watch my reflection in the glass window of the machine while they arrange my exactly in position. There are green laser cross-hair sights that help line everything up. As the machine is moved around to get it lined up, it makes interesting patterns on my body which I watch in the glass. Part of lining me up involves drawing all over my chest with various felt pens, to help them line up the beam.

Also in the treatment room are some amazing trompe l'oeil murals, including one on the ceiling. Once I'm in position, I'm not allowed to move, not even my head, so I lie there and look at the lovely mural of a ceiling window with butterflies. Then they're ready, they leave me in the room alone and go to the next room while I get irradiated. The whole process is done in 15 minutes (that's what they allow - anything taking less helps them catch up for any delays) but the actual radiation exposure is only about 40 seconds, spread over two "zaps" each time.

Once they come back in after the second zap, they help me up (there's a handy strap they pass to me, which helps me pull myself up) and I head back to the changeroom.

I've made the helpful discovery that if I wear a singlet top with built-in shelf bra, I can wear that under all my other clothing and I can skip the changeroom. This also speeds things up. I think they've got the hang of how fast I change now, so I haven't had to wait after they call me in from the waiting room. For the last couple of days I simply walked in, got my gown (I have my own pigeonhole with my own gown, labelled, which I use every day) and removed all the outer layers. Then I carefully took down the straps of my singlet top but left the top in place, then put on the gown. Once the gown is on, I can pull down the top underneath it, once I am in the treatment room. Much faster. And I don't have to go back to the changeroom after the treatment. Instead, I pull my singlet top back into place immediately, where I would normally be putting the gown back on properly. Yesterday I just grabbed all my outer clothes and walked back to the waiting room and got my outer layers back on there while I chatted to my new friends. I suspect I may have started a new trend in the breast cancer patients there.

Once the treatment has happened, we can go. Except one day a week, when we see the doctor. Also if there are any obvious problems, the people in the treatment room who see us each day will alert the doctor or the specific health professional, and will tell us if we have to see anyone else.

Yesterday was also the Big Morning Tea, which is a Cancer Council fundraiser. All round Australia in various homes, halls, public spaces etc, people have had tea, coffee and cakes, with all money donated (the cost of a coffee or cake) going to cancer research. It was appropriate to have it in the Cancer Clinic at the hospital. My new friend was very cheeky - she didn't want to wait so she walked up to the table and the head of the queue, said, "I am getting in ahead of you; I'm the reason you're here anyway," and got her coffee and cakes.
Cheeky. She said the crowd parted like the Red Sea...

I noticed on Monday, after only one treatment, that I felt a bit ach-ey and sleepy. I had a catnap in the car and that helped. But it's been every day, including today even though there was no treatment. Yesterday & today I wasn't too bad though.

No skin reddening or anything yet but I was told I must start my skin care regime NOW. So I've begun with the sorbolene. I'll go cut some aloe vera leaf this evening and use that from now on as well.

So there we are. Early days, but so far so good.

My sister tells me that her daughter (who was diagnosed with breast cancer at age 30) has not been coping too well at any stage with her diagnosis, can't even bear to hear the word "cancer" around her. So I daresay she didn't cope too well with the conversational attitude in the waiting rooms. A pity - talking to other people has really helped me stay positive and comfortable about the diagnosis. The knitting is helping me too - I see some good coming out of every minute of my time I have to spend in there, in the form of a blanket (or part of one) for someone less fortunate than myself. I think it's a brilliant idea - the wool gets donated, people bring in scraps of wool left over from this or that and it all helps to make more blankets. I've got some odd scraps of wool I might get rid of by bringing them in to the clinic to add to the baskets.

One week down. Five weeks to go.

Marg

 

[timer lady]

Marg, this sounds so familiar ~ we'd take my mom to just the type of facility you're describing (tho Mom underwent chemo). I knitted a few prayer shawls for that facility. There is compassion & support. My sister & I (when I could be there for Mom's treatments) spent many hours talking with other patients. There was a commonality in every person in those rooms.

You've been & continue to be in my prayers during your ongoing treatments. Please do not fight the fatigue - allow yourself to sleep as your body needs to heal as much as possible between & after the radiation. It's okay to let a few of your many obligations fall on another's shoulders.

Take care, my friend.

 

[busywend]

Marg, sounds like no too horrible of a process. I have heard that tiredness is troublesome. Some have that as the only side effect. A girl at work said that very thing.

I hope it stays smooth for the next 5 weeks! Thanks for the update.

 

[hearts and roses]

Marg, as usual I am in awe of your strength and perpetual positive attitude.

I keep you in my daily thoughts that your treatment continues to go smoothly. Hugs~

 

[DammitJanet]

Marg, sounds good. The set up sounds a lot like the place my Dad went also. Same basic time allotments and all. He was pleased with it.

I have to pass on something my auto insurance guy just gave me. Odd as this sounds my insurance guy remembered that I had told him my dad had lung cancer and when someone forward him an email about cancer he saved it for me! LOL...how odd considering Im a new client.

Well this email claims that asparagus has healing qualities. Especially for cancer. The email claims that asparagus should be cooked so either fresh, frozen or canned is fine and it really should be pureed and water added to it and drank like a tea...either hot or cold twice a day. Now I cant quite see me drinking that but I would eat a can of asparagus happily twice a day. I love the stuff. I cant see where it could hurt. Im gonna pass this on to my dad. If a food could possibly help, whats the harm in trying?

 

[ML]

I'm so glad you are winning this battle. This (cd) world shines brighter because of your light. Hugs, ML

 

[Marguerite]

Thanks for the tip, Janet. I'll look into it.

I've been told that I have to avoid large doses of antioxidants while I'm on radiation treatment, because the antioxidants actually "save" all cells, including cancer cells, from damage. And the whole idea of radiation treatment is to kill off the cancer cells. So if the asparagus helps because of antioxidants, I'll have to wait until the radiation treatment is done.

I also have to keep the research team informed of any other things that are happening, so I don't inadvertently do something that upsets the statistics. I have been given a referral for a bone scan, for example, which involved injection of radioactive isotope tracer. I meant to telephone today and organise it but forgot. I had to get the OK from the oncologist, but he said ti was a good idea and he wants to see the results.

It's the shoulder specialist who wants the bone scan - he doesn't think it's likely, but he wants to make sure my shoulder pain isn't more cancer. Because my sentinel lymph nodes were negative, it's most unlikely. A b one scan will be useful though, because the radiation to a lesser extent, but the pills I will have to take afterwards to a greater extent, cause osteoporosis. So a scan now will give us a baseline.

I just went looking for information on asparagus and cancer, to see if it was antioxidants. Seems like the email is unconfirmed. Sorry, Janet. Thanks for the help though.

http://urbanlegends.about.com/od/medical/a/asparagus_cancer_2.htm

After reading it, Urban Legends describe this as unconfirmed, but the way it is written, as it stands it has no scientific credibility. It's all anecdotal and the author has no other professional publications known anywhere, which indicates he may not even exist, he could be a fabrication. A pity - we need good stuff like this, but we need it to be true, tried and tested for real.

I do like asparagus, though. Especially fresh, steamed, with bearnaise saice...

I've been told to eat a healthy diet with a wide range of different foods in season, to give my therapy the best chance of helping to its maximum.

I'm continuing to dig - once I start, it is often interesting to follow links and follow links and... and I just found that a drug used to treat acute leukemia in some cases is an enzyme found in asparagus. It works in these few cases because the cancer cells (again, only in those few cases) are either growing because the enzyme is absent in those patients, or the cancer is blocking that enzyme, and when the enzyme is back there, those cancer cells begin to get knocked off. But for most cancers, if the patient doesn't have a problem with the enzyme (and most cancers don't involve that enzyme) then asparagus or that medication won't work.

http://www.cancerdecisions.com/content/view/391/2/lang,english/

Some interesting information.

Marg

 

[gcvmom]

I hope this process flies by quickly for you and that the magic words "remission" are just around the corner

 

[klmno]

I hope this time goes by quickly for you. You are holding up well thru this and I admire your strength and positive attitude thru it all. Sending prayers and hugs and keeping you in my thoughts!

 

[GoingNorth]

My BFF's partner, had to undergo breast radiation a few years ago. (she's 3 years out on her diagnosis and doing well). She had fatigue while doing the treatments. The main problem was skin breakdown at the radiation sites--like a horrible sunburn. They gave her salve for the areas.

She did have to take medicine as well, but had to go off of it due to severe side effects.

 

[Marguerite]

I just need to confirm - when I had the surgery, the pathology showed that the tumour, although invasive, was very slow-growing and not very aggressive. The surgeon got clear margins. I had two sentinel nodes removed; both were clear. But they advised I have the radiation treatment just to be absolutely sure that absolutely no cancer cells got away into the surrounding breast tissue.

Apparently even without the radiation, my chances of not dying of breast cancer were at about 80-90%. With the radiation, it should put it up to 99%.

I'm not sure if they will ever use the "remission" word. Or if they do, they would use it now, because as far as we can determine, they got the lot.

I could have avoided the radiation treatment if I'd opted for full mastectomy on that side. But the surgeon did say that even that would not be a guarantee, and it involves a lot more surgery which itself brings risks.

I've got my fingers crossed that my skin won't be too badly affected - I'm fairly dark-skinned, for an Anglo. Not sure where it comes from - possibly from the small, dark Welsh people in my ancestry, or from somewhere else in a skeleton ratting in a closet somewhere. My mother was very dark, darker than me. I have her dark skin, but pale eyes. My father was a classic blonde, blue-eyed Aryan. Half my siblings are pale-skinned; half dark. Including the twin girls just above me in age - people couldn't believe they were sisters, let alone twins.

I tan really well with gradual exposure, I'm hoping that helps although people tell me I WILL burn. I guess if it's going to start to happen, it will begin in the next week or two.

GN, I start the anti-hormone pills after I finish the last radiation session. I can stop the pills if I have problems, but I've been asked to persist with it as much as I can stand it. A friend of mine said it was like going through menopause all over again. Now, I've had a moderately easy time with menopause (I figured I paid my dues with a rough time with periods) but apparently it all counts for nought, this time I will slam into menopause, but from the other side.

oh, joy...

Thanks for your good wishes, everybody.

Marg

 

[GoingNorth]

Marg,

The big side effect from the anti-hormone medications that my friend had were cognitive impairment and horrible joint and muscle pain. I understand not everyone gets that, but in her case it was like she was starting to go senile (she's 72) and the body pain and tendon contractions in her hands.

 

[Marguerite]

I've been warned that my pills are likely to cause the horrible joint and muscle pain. But because I already have the same sort of pain to a severe extent, the doctor said that in my case it might not make much difference. I'm already on morphine to deal with my pain levels (have been for 12 years) so I've already got good pain management in place. With all the pain I've already got, the extra from the pills might be a drop in the ocean.

We're hoping, but I'm not so sure.

I'll just have to wait and see. I start taking it in about 6 weeks.

Marg

 

[TerryJ2]

Wow, does that bring back memories!

I didn't have a cradle for my arm, but I did request tissues or a towel for my elbow.

I remember those lasers. I've watched too many James Bond movies ... it creeped me out at first.

Best of luck. It's no fun, but I'm glad you get some days off.

 

[Wiped Out]

Marg,
I so love your positive attitude. I hope this time does pass quickly; you remain in my nightly prayers.

 

[Marguerite]

Thanks, guys.

I've just spent the last hour trying to draft an email to get out of the play I've been involved in. For a lot of reasons it wasn't working out, and I can do without the stress. The director was leaning on me more and more and I'm just not well enough for it. A pity - I wanted to stay involved. easy child 2/difficult child 2 has been involved too, but began to spit the dummy big time last week because increasingly she has felt the strain of a production going sour. And now a rehearsal is called for tomorrow, one last run-through in an already paid-for theatre, with a view to polishing what we have so far so when we get back to it, we'll be that much further ahead. Only I don't think I want to be involved at all any more. Trouble is, the cast attending tomorrow, if I don't go, will be two. easy child 2/difficult child 2 isn't well enough (she's currently almost in crisis with her anxiety, plus is wrestling with new medications and side effects making her sick) and my other young friend has other health issues. And the weather forecast is nasty; although that mightn't hit until tomorrow night, now. I really don't want to travel for an hour each way, to a rehearsal which will be mostly empty. I suspect if I do go, it will turn into a planning meeting for the next attempt to put this on, and I don't want to do the planning. I COULD do it, but it's not my job and right now with all I have on my plate, it shouldn't be.

I am also supposed to audition for a local production tomorrow; I'm going to turn up, but tell them I have to ow out unless they can give me two months off form having to rehearse on a full schedule. Frankly, although I wanted to be in this one too, I need to walk away from both. But I need to do it with integrity and class, so I have a chance to get back into it later on.

About the upcoming skin damage - I dropped in on my best friend today to hand over her birthday present. Her boyfriend was there, he's a health professional, he said my dark skin will not protect me from skin damage. The radiation blasts right through the skin deep into the tissues (that's the whole point, of course) and the skin cops it, regardless. So I really have to plan for the worst, now. And frankly - it will be far less stressful to drop out.

Time to be a rat and leave the sinking ship. And not get on board another for some time, but stay on dry land instead. I'm being nagged by a lot of people who I thought knew me better - I KNOW I have to get out of this, but I have to do it MY way, and nagging me can't change anything. It can only get in my way and add to my stress.

Marg

 

[gcvmom]

I hope you can just ignore the naggers like the little children that they are and do what you know is best and healthiest for YOU. Clearly none of those people has your best interests at heart. So I wouldn't worry about stepping on toes or mincing words. Say what you need to say to let them know you are not coming back, and then put it out of your mind and move on. You don't need the aggravation AT. ALL.

 

[TerryJ2]

I'm going to turn up, but tell them I have to ow out

This was the perfect Freudian slip!

Ow, indeed!

by the way, you are so luck to have those murals. I stared at a white, circular ceiling for 6 wks and then wrote a ltr suggesting I do a cloud mural. No response.

 

[Marguerite]

Ow is right!

At the rehearsal today, I managed to get across that I am unavailable until mid-July, maybe later. And that the production should not get started up again unless we have a FULL cast!

The question is - did the director listen to me? We'll see...

Meanwhile, it's back to the saltmines (ie therapy) tomorrow.

It was interesting today, walking up and down the theatre steps compared to last week. I am noticeably weaker. So it was helpful in that, too. It's good to have a measure.

Marg

 

[Tiapet]

Thank you Marg, for sharing your most incredible personal journey/story with us. I'm wishing you the best of luck, strength and continued resolve. Somehow though, I seem to think you will be just fine as it seems you always tend to be. In either case, you know we're here for you and always in our thoughts!