topic Re: RAI / isolation - my way! in Treatments and side effects

RAI / isolation - my way!

Shell83 — Wed, 01 Feb 2012 12:05:48 GMT

So feb 3rs is finally just around the corner.. I'm going in for my RAI on Friday. I have been absolutely dreading being away from my kids, 8 months, 4 & 6 years. But just this last couple of days I've had this acceptance come over me and I'm almost at peace with it, I can't change it so I'm now looking forward to getting it over and done. For those of you with kids and facing time away I thought I'd share some things I have done to prepare - I have made special mummy advent calendars for my girls (4 &6) to count down the days, they get special beautifully wrapped gifts for every day I am not there. I've made "my day" books for them with prompts like "today I went to....." "the best part of my day was...." etc and a page for drawing a picture for me every day, so they can share all our missed days with me when I come home.. I also got those recordable story books (hallmark make them & you get them from Newsagencys so that at bed time im still reading them a story! I also got a beautiful book called moments with mum (from kikki k stationary) which is like a memory book for them to do with their dad and give to me when I get home (a selfish gift!) I've organized some fun outings for them too. Anything to keep them busy and happy! As for my little boy Jacob, I have asked my husband to have the week or more off work - hard enough to leave my baby but if I can't be there then the kids need and deserve their dad! Now as for me and my coping in there - I have a kindle with 4500 books - I've brought a new one and I'm taking the old one in and donating it to the isolation ward when I leave.. I have had some beautiful friends spoil me rotten.. some of their thoughtful gifts: - Jigsaw puzzles - crossword books and magazines - Mani/ pedi and facial kit (since I never have time to do that stuff between the 3 kids and business to run!!) - Letters to read every day from a dear friend - a cheeky sexy jokes book! And this last bit blew me away - a girlfriend put what I'm going through on a forum for northern beaches mums here in Sydney and asked for ideas to keep me busy. These strangers went above and beyond - they have written me letters with gifts and books and one lady got photos off my friend of my kids and made me a beautiful blanket with my kids photos all over it.. Just amazingly overwhelmed and spoilt. My husband was laughing about it saying they would come in and say I could go and I'd be saying o no I'm not finished all my stuff yet hahaha :) Anyway, at this moment I'm in high spirits, I hope it continues on into fridAy and beyond xoxoxo all the best to all of you

Re: RAI / isolation - my way!

Sunshine006au — Wed, 01 Feb 2012 12:11:59 GMT

Good luck Shorty_Shell, the time away from family will be hard, you will miss them & they will miss you...It will be great when it's over & your back with them. Sending thoughts & hugs your way Alison

Re: RAI / isolation - my way!

Shell83 — Wed, 01 Feb 2012 12:48:10 GMT

Thankyou Alison, that's going to be the mental image that will keep me sane while I'm without them - the amazing feeling of coming home to my babies and my dear husband.. We've been together since I was 15, so coming up to 13 years and spent only a few nights apart in all those years, will be lost without them, but hope we can all have a new found appeciation for each other at the end x sometimes life just throws a spanner hey!

Re: RAI / isolation - my way!

traceypcktt — Mon, 05 Mar 2012 14:18:41 GMT

Hi Shell Just wanted to say I loved reading your post. Sounds like you have a great attitude and a great bunch of support and love around you. I imagine your isolation time would be up by now and I hope it was speedy and you had a wonderful homecoming when it was all over. Best of luck with the rest of your journey and I hope no more spanners get thrown your way. Kind regards Trace

Re: RAI / isolation - my way!

Shell83 — Tue, 06 Mar 2012 05:21:08 GMT

Awww thanks Trace. We should become mechanics so the spanners can at least be useful huh 🙂 It was a horrible time, but hopefully that is the last of it.

Re: RAI / isolation - my way!

Struggling_mumm — Sun, 29 Jul 2012 13:14:27 GMT

Hi Shell83, Wondering if I could ask some questions, I am due to have my RAI on either the 7th or 14th of Aug. just wondering what with everything that you took what helped? Regards Cass

Re: RAI / isolation - my way!

Shell83 — Mon, 30 Jul 2012 02:06:11 GMT

Hi Cass, Such a hard hard time, my heart goes out to you. I took in a heap of little presents & letters from people (these were good!) my mum gave me a gorgeous card with. Ridiculous amount of scratchies.. Haha they passed time - lucky I didn't win 250K, couldn't run outside and jump up and down hehe. I took my kindle, magazines, chocolate! (not that I was hungry much so that didn't help much. I took my phone, stalked Facebook, did some online shopping etc. & spent a lot of time chatting on the phone to my babies, hubby and some old friends that I don't always have time to talk too. The phone was perfect. I took some nice body wash & leave in conditioner because I showered four times a day & got so sick of washing my hair, I heard its good to wash a lot. I took in old undies and bras and threw them out as I showered - and only wore an outfit in then used their gowns, didn't want to take much out of the room. A nurse brought me a bottle of cordial which I loved - I drank over 30litres of water in four days trying to flush it out so the cordial was perfect for a change! I got given a cool book called listography, it's like an autobiography but in lists of your life, I spent a lot of time filling it in and enjoying the forced reminiscing. I got given a pedicure & manicure set, one of my girlfriends gave me that with the reasoning I never get or take time out to do that, thAt passed a bit of time. You could take a facial set or something else.. I also asked for the Valium at about 8 each night so I could just sleep.. Never normally take Anything like that buy it really took the edge off, obviously it's a really tough time, I did have a bit of a breakdown while I was in there and cried until I couldn't open my eyes.. That was pre Valium - do what you need to to get through it. Sorry I'm spouting random pieces everywhere as they come to mind.please dont hesitate if you have any questions.. Will be thinking of you, and if I think of anything else I will let you know. I'm a member of a secret thyroid cancer group on Facebook, it's full of people going through or that have been through the same, let me know if you would like to join. One of the ladies there has just had her 6 year old daughter go through RAI 😞 I feel lucky now that it was me and not my babies. Xo

Re: RAI / isolation - my way!

chatterdog — Wed, 30 Jan 2013 10:45:25 GMT

Hi Shell, I too took in heaps of letters and replied to them while I was having RAI. I was in the middle of the uni semester and it was *almost* nice to have a break from studying, though I did go a bit crazy by the end! Hope you are well now. I am waiting on some tests to see if I need more RAI, fingers crossed, not something I want to have to go through again.

Re: RAI / isolation - my way!

Shell83 — Wed, 30 Jan 2013 23:19:23 GMT

Hey! Oh I Get the crazy part.. Haha for someone who never alone, never sits still and loves being outdoors it was my biggest challenge to date! 🙂 ill never become a criminal, couldn't bear to be locked up! 🙂 when do you get your tests/results, I shall keep my fingers crossed that your worst days are behind you! Xox

Re: RAI / isolation - my way!

chatterdog — Wed, 30 Jan 2013 23:23:18 GMT

Thanks for replying Shell! I'm just off to get a second thyrogen shot to prepare for the radioactive iodine pill tomorrow, my scan is on Monday, and having an ultrasound a few days later. I get all the results back two weeks from today. Feels like a long time to wait...

Re: RAI / isolation - my way!

Shell83 — Wed, 30 Jan 2013 23:54:45 GMT

Ooooh where abouts are you?! I was told I can't have thyrogen because they can't get any! Had to go horribly hypo so many times last year (think my body is still a bit out of whack!) 2 weeks is a long time isn't it! I was lucky, the nuclear med team at concord are just beautiful & one of the blokes took my scan straight to the nuclear doctor and told me that it looked great, I walked out of there with a big ridiculous grin on my face 🙂 I felt a tad guilty (as you've no doubt seen, the waiting rooms in nuclear dept are full of people who mostly aren't looking/ doing so well.) Goodluck, have a fun weekend glowing alway 🙂

Re: RAI / isolation - my way!

chatterdog — Thu, 31 Jan 2013 00:47:15 GMT

According to my endocrinologist, there was a worldwide shortage of thyrogen but it's recently come back into stock. I had a bit of trouble tracking it down, but got it in the end. So, hopefully you don't need it again, but if you do, you probably will be able to find it. I can't imagine having to go completely hypo, you poor thing. I think it does screw your body up for a while. I was at the RPA in camperdown and the staff there were great too. I had a HUGE room with windows all down one side, and of course didn't have to share with three others like after you have surgery. I live in Canberra now, not sure what the isolation rooms look like but fingers crossed I don't have to find out!!

Re: RAI / isolation - my way!

Shell83 — Thu, 31 Jan 2013 02:05:16 GMT

Interesting, I heard that about the thyrogen (something about the company who brought out the inventing company realised they would only profit 1m per year so decided it wasn't worth it, guessing they haven't been hypo!! I'd be happy to pay for it even! :) I don't have an endocrinologist yet, amazing how we were both treated at public nsw hospitals but its different. I was lucky to get my own room after my surgery, 6.5 hour surgery (i had massive lymph node spread so needed a level 5 or 6 neck dissection as well!) and I also was breast feeding my son still, he actually stayed in hospital with me so they gave me a private room with harbor bridge views.. Shame I was in too much pain to enjoy it! In hindsight a baby & recovery from that surgery were not a good mix but I didn't have time to wean him between diagnosis & surgery) he was fascinated with pulling on my drains (I had 3!). I had one big window for my RAI room (down in the geriatric ward of all places!!) and it had a massive spider hanging down.. He became my entertainment! I promised myself if I ever strike it rich I will fund a purpose built RAI centre, pure luxury rooms like a 5 star hotel, with enough room so that the isolated person can have a verandah surrounded by lush gardens, big spa baths....just little touches to make you feel less like a leper!! Oh and Icy cold water on tap seeing as I had issues getting water to me! Oh I can dream can't I?!

Re: RAI / isolation - my way!

chatterdog — Thu, 31 Jan 2013 02:14:10 GMT

That would be amazing!!! It's definitely little touches like that which make a big difference. When things are so tough it doesn't take much to make you smile. I might actually volunteer to have yearly RAI if you set up those luxury RAI rooms, as long as it had a big TV and DVD library :D Wow, I can't imagine trying to nurse whilst recovering from surgery. You're a superhero! I had enough trouble not pulling my own drains or getting them caught in things, hehe.