No one ever told me about notches either, but looking at it I can’t see any notches on it anyway Mine can’t move though as I have a plastic dressing over it. I haven’t ended up using any form of cover over it either, although I’ve had some funny looks about it! There seems to be so many variances between areas and Trusts doesn’t there? I’ve been told I shouldn’t cover mine at all, and I go in every Wednesday for line care as standard.
Well done @epic1 and @lizk for getting the first one done and dusted! Hope you’re both doing ok.
One last thing from me…is anyone else endlessly FAMISHED? I can’t seem to satisfy my hunger at all, even though very little tastes as it should now. I’m starting to worry about weight…silly, I know…
My bit coming out of my arm is blue and there are 1cm white notches on it so it’s easy to see if it goes inside. I read on another forum about a ladies who went inside and they had to redo. I think you’re right different trusts use/do different things but you would think fundamentally we’re all having a picc line for example you’d think there would be some synergy!!! I’m wearing the stocking thing the hospital gave me over it to primarily protect it from being knocked.
And I am famished too. Sometimes I wake up in the morning and I literally just go and make myself something but think I’m going to start having snacks before I go to bed, like cheese and crackers. Although my portions aren’t as big as normal and trying to find things that don’t feel like a log in my throat.
Hi @epic1 I’m having the same EC-D chemo starting tomorrow! Glad you’re home and have got the first one done. I’m kinda nervous but also feel a bit “nothing” as I’m not even sure if I’m definitely getting the chemo tomorrow or if it’s just assessment I phoned up and 2 people told me 2 different things so I gave up trying find clarification and now I’m just winging it and taking my book/drink/snacks etc with me tomorrow to wait and see what happens. Is there anything else I should bring?
YES! At first I thought it was the steroids & maybe it was but it’s pretty much constant. Also wanting a LOT of carbs, and major cravings for jacket potatoes. I’m generally fairly healthy & since diagnosis really been focussing on eating well, no UPF etc yet the other day I went to the shop at the end of the road, bought & demolished an entire sharing pack of Nik Naks! WTF!
I was thinking what the hell about weight gain but then randomly read my hospitals guidance protocols for the new drug I’m on (I think I need to go back to work haha) & found out that I am at the higher end of the weight range of dosage for filgastrim - ie. if I put on 2.5kg I go onto a higher dose of filgastrim which I don’t like the idea of! So that’s been a good incentive for me to try to put the crisps & chocolate biscuits down at least. I think I am going to invest in one of the cancer cookbooks a few ppl have mentioned for more healthy snack ideas
Hi @pod123 bit odd & disconcerting you don’t know what is going on. If you are planning on cold capping I’d recommend taking a blanket in with you, as well as a cardigan so that you can have one arm in, one arm out. I’ve generally been finding the chemo room quite cold (so as well as cold capping it makes it a v cold experience).
Haha oh how weird, I don’t think I’ve eaten Nik Naks since my school days but I recently bought a multipack of rib n saucy and ate the lot Also leaning towards a carb heavy diet, not really a fan of mashed potato as a rule but I could eat it on tap at the minute. I lost a lot of weight at the beginning of this year and was the healthiest I’ve been in a long time so I just feel like I’m undoing all my hard work at the moment.
@nicnack17 cheese and crackers are keeping me going My portions definitely arent as big, I just feel like I am grazing constantly
Thanks @sunshineandunicorns Cold capping isn’t an option at my hospital so no prep needed for that. Honestly, I’m probably just overthinking it. I’ve read and re-read what I was given, plus the hospital website and a video run through of the facility and I’ve got myself confused. The letter said someone would phone for a 30 min pre assessment phone call and I waited for it every day this week but now I’ve read it again it actually says someone “may” phone so I’m thinking maybe tomorrow is the assessment? I don’t want to ring now as I wouldn’t want to take up the phone line and really I don’t need to know and can just find out when I get there.
So started my chemo yesterday (Tuesday) and have to say the staff were so lovely. I had a lot of tears at the beginning but my daughter came and helped me through. I honestly think it was the relief to be starting treatment as I am chemo first and then mastectomy.
Laying here tonight and my leg is aching from the injection for the HER2 so hoping that will ease and have enough drugs to shake and rattle for the morning and a 7 day injection for white blood cells. Also managed to take my dog out when I got home as I was determined to get out. I got out for a slightly shorter walk 2 miles as my leg was aching) and drank the recommended 2-3 litres of water.
Anxious for what the next few days being but round 1 Of 6 signed off for me
There was a programme on last night called Saving Lives in Cardiff on BBC2 about a lady who had a recurrence and had the lump removed and a clearance of lymph nodes. It shows the op. It’s abit gory but if you want to watch it it is quite interesting.
Glad you got through your first one! Hope you feel okay todsy and your leg is not too bad… glad your daughter was so good.
I am strangely pleased to see an October chemo starters thread set up. Feels like our little train is a bit further down the tracks now there are people behind us. Random I know!!
Thanks @epic1 ! So I definitely am getting my first cycle today. All checks were ok so I’m just waiting to get my anti sickness medication. Not really chatting to anyone yet as all the seats are distanced and we’re in face masks here but the staff so far have been lovely and I got a wee chat with a nurse I used to work with, which was lovely - nice to see a familiar face! Hope you’re feeling ok today
Ladies - as a newbie here (first one yesterday) any tips on what to eat. Got a nausea : washing machine tummy.i don’t really feel like anything but know I must eat something xx
Protein and fibre are the most important things. If your tastebuds start to go talk to your oncologist and ask them to prescribe you fortisip or protein shakes (after my first cycle my mouth tasted like butt for two weeks and I couldn’t even enjoy water let alone any food with flavour), I lost a little weight but the third week when my mouth went back to normal I put it back on and got my appetite back. I would advise eating little but as often as your appetite will allow.
Two days ago when my bowels hadn’t opened for 3 days (previous cycle they were the literal opposite for 3 weeks) and I somehow managed to eat an entire big tin of baked beans and x3 slices of fibre toast to get things going in one sitting (now I’m struggling with snacks), no idea how (had no appetite). Your appetite may change at short notice. You’ll work it out, just don’t push yourself against what your body is telling you. I’m just treating the first two weeks eating after treatment as fuel, and then the third week when it (hopefully for you too) will start normalising, you can enjoy foods you love.
Agree with sez, little and often is key. My tastebuds are completely done in at the moment so Im trying to find things that actually have some taste. Cheese and crackers and pickled onions are my go to snack, or toast with loads of marmalade. @ake posted a list above that had a lot of good ideas on it, I’m going to try some myself today! X
Hair update…I washed it this morning…quite traumatic really, I lost a LOT. I thought I had pre-decided that when it got to this stage I would get a pixie cut, but the reality is I seem to be hanging on to the hope that I’ll not lose any more. I’m so good at denial I don’t have any patches as yet but I don’t know how, I was gobsmacked at what came out today. I only have two EC left before moving onto paclitaxel, which is allegedly kinder to hair, but I just keep looking at the hair clippers thinking hmmmmmmm…
One side of my head is worse than the other, so I’m struggling with a bad combover deal. Wearing a satin cap overnight to keep it from getting all over my bed is slightly less traumatic but I’m becoming very numb to this. The handfuls coming out are crazy, I’m surprised there’s any left!!
Mine can’t move though as I have a plastic dressing over it. I haven’t ended up using any form of cover over it either, although I’ve had some funny looks about it! There seems to be so many variances between areas and Trusts doesn’t there? I’ve been told I shouldn’t cover mine at all, and I go in every Wednesday for line care as standard.
I phoned up and 2 people told me 2 different things so I gave up trying find clarification and now I’m just winging it and taking my book/drink/snacks etc with me tomorrow to wait and see what happens. Is there anything else I should bring?
Also leaning towards a carb heavy diet, not really a fan of mashed potato as a rule but I could eat it on tap at the minute. I lost a lot of weight at the beginning of this year and was the healthiest I’ve been in a long time so I just feel like I’m undoing all my hard work at the moment.
