First radiotherapy appointment plus plus

Discussion in 'The Watercooler' started by Marguerite, May 6, 2010.

  1. Marguerite

    Marguerite Active Member

    What a day! I knew we had a busy schedule but we did our best to organise things so we had no need to rush. But some circumstances do collaborate to complicate matters!

    Our first appointment was at the pain clinic, but my GP has ordered fasting bloods (part of my ongoing diet/liver management). I knew we could get the bloods done fast so I skipped breakfast and we drove right past the pathology lab on the way to the pain clinic. It took 15 minutes.
    Then on to the pain clinic - arrived on time. The doctor was late as usual, we covered pain issues and especially my bad shoulder. I told him of my recent ultrasound results and the plan to have my shoulder joint injected with cortison (I know I said never again, but this HURTS!). The pain doctor agreed it was worth a try. We got away from the pain clinic with an hour to spare before the next appointment literally just up the road, at oncology. My first "practice run" set-up appointment for radiation treatment. We had got there early and let them know so they could get us in earlier, as promised. But the person on reception missed the point, and didn't call anybody we were supposed to see. So 15 minutes before my appointment, when I had used the long waiting time to go find a kiosk with something, anything to eat (ate a chocolate bar) the research team turned up, asked me if I was able to have fasting bloods taken (at 11 am? With no prior notice?) and then they said, "Maybe next time you could get her earlier and we could do it then."
    I pointed out we had arrived an hour early. They were cranky (at the receptionist) at not being called and told us this. But I gave them the contact details for the pathology lab, they can use the same blood results and the one remaining test they want, can be done next time.

    So I got seen by the radiology team. Two nurses lay me out on a CT scan bed and measured me up. Why do they always have the air conditioning on in these places, set cold, when you're going to be lying there half naked with no blanket?

    After a lot of tedious adjustments here and there with a lot of felt pen drawing all over me, I got my two tattoos. The one under my arm looked big but I barely felt it. The one in the middle of my chest stung, but is tiny. It is also right on top of my one, solitary freckle there. Don't know why they couldn't just use my freckle as a marker... They reckon the tattoos will fade after 5 years, so my tentative plan to get a more obvious tattoo at my five year mark may get shelved.

    So all day husband & I have been cracking jokes about "Lydia oh Lydia, Oh have you met Lydia, Lydia the tattooed lady..."

    Another quick chat to the research team, filling in forms, letting me know which group of triallists I've been randomly assigned to (I'm to have my medication AFTER the radiology). Then I had to talk to the nurse in charge of radiotherapy skin care. I've got notes to red up on, rules to follow etc. I asked about the advisability of getting extra sun exposure to acclimatise my skin beforehand - she said no. But she's a redhead, of course she would say no because for redheads especially, the official Cancer Council policy says so. But for me, Cancer Council policy is bad.

    We left oncology and headed back to our district. By this time it was 12.15 and I had a 12.30 appointment with the ultrasound clinic for my shoulder. We got there only a couple of minutes late, got seen almost immediately. The injection hurt, but the doctor could see on the screen, he hit the spot and the stuff "spread out nicely". The doctor gave me some alcohol swabs and the nurse gave me a wet paper towel which I used to clean off more of the red felt pen from the oncology people. It had been getting on my clothes.

    From there we had over an hour before my next appointment (almost next door to radiology) and the mall was across the road. So we headed off to have lunch, then went to check out the new mobile phones we need to upgrade to.
    No time left - this phone company takes ages to sort out customer issues, so we left for the neurologist.

    Neurologist was late as usual. He also wanted to talk about the shoulder, now feeling rather better. He also agreed I'd made a good call.

    From there, we headed back to the mall to talk about phones. We got to the phone shop at about 3.30. Service was bad until I started to make a fuss. We got out of there, with our new phones, at 5.30 pm. I got a lot of knitting done while the business was conducted. Our new phones are lovely, though. husband also took advantage of the waiting time and organised difficult child 3's new phone battery.

    Then home to cook dinner with mother in law. We've discovered tat putting on a load of vegetables to roast tastes decadent but is easy to do, as long as we have enough time. Which we did, only just.

    And now we're home. My back and shoulder are sore, but I'm looking forward to sleeping better tonight. It's been a full day but productive. On the way out of the mall, husband & I passed by the computer shop so we took a few minutes to check out the current crop of laptops, I need to replace my dead laptop as soon as we can afford it.

    So it's time for me to warm up my hot pack again (it's one of my improvised microwaved wet towel in plastic bag ones) then head for bed. difficult child 3 worked well today while home alone, so I've promised him a driving lesson tomorrow. He should have had one today but the phone business kept us away longer than it should have.

    And husband did all the driving for me! he's a pet... we got half a dozen important things done, organised into one trip so we don't have to make six trips over who knows how many days or weeks. All the appointments just lucked out and happened to lead from one to the next, all close to one another. Like a string of beads.

    I figure I've earned a rest tomorrow. I'm going to set up the crockpot early so dinner takes care of itself.

  2. WhymeMom?

    WhymeMom? No real answers to life..

    What did you do in your spare time? Whew...... what a medical day.......I'm thinking this could never happen in the states......too logical........ put your feet up and enjoy tomorrow at a slower pace. Hope the shoulder feels better for a good sleep!
  3. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Marg, how wonderful to get all those things done on the same day! I hope your shoulder is feeling better. I once had a cortisone injection in my wrist (pain due to using the mouse at the computer), and it worked really well and the relief lasted several months. If you sleep better, it is worth the discomfort of the actual injection, for sure!

    I admire you for looking after your mother-in-law so well.

    Oh boy, you have a lot of stamina.

    Be well.

    Love, Esther
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Marg....glad your day went so well...but whew!

    I will pass along some things we learned from my dads trip down the radiation road. The first week or two will be fine but then you will probably notice your skin getting dads burned more on his back than on the front where the xray went in oddly enough. He had some freckles and age spots on his back that are now completely white. He was very uncomfortable in the later stages of the radiation because of this burning and all they would give him is this straight aloe gel ointment. Nothing else. I know they also told him to never go out without a shirt. He has just finished his treatments and we are waiting for the 18th when we will find out if they worked!
  5. KTMom91

    KTMom91 Well-Known Member

    What a big, busy day! (as Miss KT used to say) Glad you were able to get everything done. Enjoy tomorrow's restful day!
  6. Marguerite

    Marguerite Active Member

    I'm hoping my blessing of olive skin gives me some protection. That's why I wanted the opportunity to pre-tan if it would help. I know that done wrong, it would be a disaster. I just don't know if done right, it would help. Everyone has said, "Don't do it," but currently the public attitude is to protect yourself entirely from the sun, regardless. And if I begin a summer with that attitude, I can almost guarantee a sunburn later on when the sun gets too much to handle. I also have Vitamin D deficiency and have medically ordered sun exposure.

    Australia is in epidemic of Vitamin D deficiency which is ridiculous, when you consider the amount of natural sunlight we have. But we also have world records rates of skin cancer, so I understand the cautions. But I think we've gone overboard, and we need common sense to prevail.

    Some people need to avoid sunlight - but then, they have such pale skins they can get enough Vitamin D with 5 minutes at sunrise in winter. Whereas I need about half an hour in summer. And the more I tan, the more sunlight I need. And I tan fast. So in recent years I've got into the habit of getting balanced, measured sunlight so I don't burn. The trouble is, occasionally we have an early sunny day or I'm out in it longer than I expected and I end up with a burn somewhere (such as burning through the car window in late winter). Once I burn, I have to stay out of the sun and use sunscreen for the next few months, or that area keeps burning.

    I was warned that the 'exit' area is also going to be affected. They angle the radiation treatment so it passes through the breast and not from front to back, for example. They didn't say but I suspect in my case it will be angled more frontally because my tumour was dead central and on the chest wall.

    They warned me to not put creams on my skin before treatment; no grease on the skin. And nothing with perfumes (which means no perfumed soaps on that area). This lets out my favourite essential oil blend - because essential oils are also perfumed. Aromatherapy will be problematic.

    I expect something similar to sunburn, with the physical effects of bad sunburn (memories from all day at the beach in childhood, in the days before we had sunscreens). I know had bad sunburn used to make me feel - really sick. Feverish, tired, aching. And for my skin to burn that badly, my paler sisters must have been in agony. And then the family would go back to the beach all day next day!

    One summer in childhood, I was on holiday with my best friend. Her parents spent their time fishing which left us to our own devices. This meant we would go out in the sun when we wanted and stay out of it when we wanted. So our own sense (and my friend's paler skin) meant we got good, healthy tans with minimal burn. That was what taught me - if I tan carefully with no burn, the tan stays into winter and also doesn't wrinkle my skin.

    But damage has been done. So the radiation treatment will add on to all the damage done in my childhood.

    So my plan for now (considering in radiation treatment, I'm a novice) - I'll use aloe vera gel cut from the inside of the leaf, fresh. I've been told to not even have that on my skin before the treatment each morning, I don't know why - it's not a cream, I think she was expressing a blanket ban on commercial products). So I'll take a piece of gel with me, wrapped up, to put on immediately. Also cold fresh chamomile tea in a spray bottle kept in the fridge, if the heat rash becomes a problem. They told me I can get a 1% hydrocortisone cream if the itch from the heat rash becomes a problem.

    The feeling I got from the skin care nurse was that she was going through the basic instructions but doesn't really THINK about them - I got a long lecture about not having hot showers, avoid hot water bottles on the area and hot packs, avoid this, avoid that - it all boils down to "treat the area as if badly sunburned, keep it protected from heat and sun while it heals". Frankly, that's all you need to say to any Aussie with beach experience! She actually said to use a spray bottle with salt water - sorry, from my experience the salt is not great for a recovering burn. If I'm at the beach and want to speed up my tanning time, I splash on salt water. She accepted my suggestion of chamomile tea from the fridge but still had to be sure - not hot from the tea bag. (well, duh!)

    I got some good suggestions on what to wear and how to pad inside an old bra so there isn't too much chafing.

    Oh, this is going to be fun (not).