Morning ladies I’ve been awake since 3am, it’s the steroids I’m taking to pep me up during chemo.
I’ve read every post on here and feel so inspired & energised by you amazing Teal ladies, your stories are a mixture of hope, positivity happiness & sadness but overall you’re individual attitudes to your own situations are mind blowing. 🦋
Just wanted to send every one of you a huge cwtch (Welsh hug) from me for just being part of my very own special support network & crew and I hope today brings you strength to sail on!
“She stood in the storm, and when the wind did not blow her way, she adjusted her sails” ⛵️
Any overseas friends or families you could skype in the middle of the night.?
My tip is have a list of planned things to do.
I'll be stuffed with steroids tonight and plan to make xmas puddings and remove cobwebs from around the house before starting autumn cleaning kitchen cupboards.
Steroid sleeplessness always made me miserable, casting around for things to divert me, and having a plan has helped. Especially as I don't have to do any of them!
You can't make Xmas Pudding until Stir Up Sunday, which this year is 25th November so you'll probably finish your tasks early tonight and I thought I'd mention I have a lot of cobwebs.........
The sleeplessness is a pain but I bought myself a notebook and wrote down words, ideas, plans, ramblings. Somehow it felt like I was doing something clearing my head. It felt like clearing out my cupboards and throwing out a load of useless junk lurking in the back of the cupboard. I didn't feel up to that!! Sending you a big cwtch back cariad!!!
Big cwtch’s Back to you lovely lady, the steroids do play havoc with us don’t they? But they’re an important part of our treatment. I read some seriously large novels when I was on them and became really good at sudoku. You are an important part of our family too, we all bring our own unique contribution to this lovely group and we’re all a vital lifeline to each other.
I love the quote you’ve shared with us, it’s a fabulous attitude to try to have especially when we have to factor this god awful disease into our life.
I hope your treatment is working for you love, big hugs ❤️Xx Jane
What a super post. I've also just read your profile and am so impressed with your positivity, too. I feel exactly as you do about getting up and putting on the makeup and facing the day. Even if things are really bad and you can't face the makeup, trying to find what IS good in life is so helpful. Even putting a smile on my face somehow helps.
Thank you Solange, I spent this morning with a friend who admired my positivity and I said ‘for me there isn’t room for any other attitude because anything else will take something away from my soul and I’m not prepared for that!’ Simple
Steroids equals lack of sleep and a red face. After a few days I feel exhausted.
Makjor recommended I get some green makeup and it arrived a couple of days ago. I tried it this morning although my face has reached its maximum redness yet. Initially I thought I'd used too much but once I covered it with foundation you couldn't see any green although all signs of pink and red had gone.
This cisplatin seems quite tough as my hGb is slipping too, yesterday it was only 103 when it would normally be much higher at the start of the cycle. Last week it was only 99 - how low does it drop before a transfusion is given? Mine used to be 123 or similar and never went below 105. I had black pudding today, from a very helpful list you sent someone recently. I must find it again but I remembered black pudding. I don't think I fancy liver more than once a week.
Yes, I guess can't is a bit strong, more so when coming from someone who has chosen a slightly different date in the past when other commitments have taken priority. 😀
I don't just get rosy cheeks, it flows down my neck onto my chest. I look positively radioactive.
Helen, it needs to be below 90 before transfusion given. The cisplatin in the Rotterdam sent me down to 79 at the end! Transfusion got me up to 104 in a day.
What will happen to me if it gets below 90? I feel a little tired and slightly breathless and I admit I didn't do everything I wanted to do today which is a pity. And what was it like when you went down 79? I remember you saying you didn't drive.
I just felt very tired and breathless when it got that low. I felt that if I moved too fast my heart rate would go absolutely racing. I had to rest on every step of the stairs, walked to the supermarket (about a 10 minute walk) with the aid of a stick and had 3 rests on the way! I also felt not so adept with my mental faculties - I guess that's because not enough oxygen was getting to the brain - so I didn't think I was safe to drive. I certainly had to come to terms with not doing everything I wanted to do! When I got the blood the transformation was amazing - up a hill with no sticks!!
I hope mine doesn't slip so low, I'm not breathless going upstairs or anything, just slightly when walking Rufus. Haven't noticed my heart doing anything. I must try and deal with this by diet and quickly as I've booked five days early December at Twice Brewed to walk the highlights of Hadrian's Wall. I know that's not an ideal time but I've had to wait to get the early days of the trial under my belt and I've never experienced these blood problems before. I had a week's delay because of low neutrophils, then a two-day delay and now the red cells are dropping, not to mention the magnesium. I've been so lucky up until now but now lots of my blood results of Low or High on them.
I hope I do get away as I've been wanting to go for so long. Walking with hiking boots is much easier for me than fashion boots anyway, because I have two toe nails still with a new nail growing underneath from the weekly Taxol toe and finger nail drama and fashion boots kill them. I'll still go as I can drive to the museums but that's not the same as hiking along pretending to be a Briton watching invaders stealing my land.
Hi Helen - you are one fit lady! Like you I have been pretty resilient on the bloods and didn't have any delays on the Rotterdam, but I did have a transfusion at the half way point and again at the end. It comes as a shock to find we may have to put the brakes on ourselves. You deserve a huge trophy for resilience for walking Hadrian's Wall in December after cisplatin - tougher than the Romans ! I hope you make it. I wonder if you've read 'A funny thing happened on the way to chemo yet' - one of the things she talked about was being thrilled with good blood results like she was once was with good exam results, and seeing delays as a 'fail'! I think I'm programmed that way!
Hello Christine - no, not as fit as I used to be, but even age was taking its toll before this diagnosis. I'm only doing the central bits for four days and of course we have to walk back again each day as the bus stops at the end of October. We are staying in a National Trust cottage right on the route which is just behind the back garden. I'd rather be in a YHA but we are taking Rufus. I've booked five nights in the hope I can leave the day after the chemo but if the steroids make me feel unable to make the drive, I'll leave the next day. We'll still have three days walking. It will be a pleasure to put on our cold wet weather stuff, don't need it down here. Close to a pub but we can self-cater if Rufus is a nuisance in the pub. Then we'll drive back on Sunday, ready to go to the clinic on Monday.
I've bought the "A funny thing happened on the way to chemo," but I was chatting all morning to Gina, who is joining me at the CRF on a different trial and in the afternoon I had to get on with knitting bootees for my neighbour's baby who is due soon (Rufus won't let me knit at home so something good comes of spending a whole day on a chemo ward). I can't knit and read at the same time, although my mother could.
Helen
PS I'm always thrilled when I'm told I've got good veins....
Great stuff Scotty, the steroids left me sleepless so many nights, was like taking speed for me! Not that i ever have lol! Thanks for your lovely words and sending virtual hugs back Jane xxx
Hi, Scotty22! Love your post! I remember this summer being up 3 nights in a row...steroid high...I did some damage on Amazon. lol. Sending you an Italian New York hug!!!
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! I hope you make it. I wonder if you've read 'A funny thing happened on the way to chemo yet' - one of the things she talked about was being thrilled with good blood results like she was once was with good exam results, and seeing delays as a 'fail'! I think I'm programmed that way!
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