Due to the adverse reaction to steroids, we are changing to AC Chemo - does anyone have any information about this? There clearly still have to be steroids but at lest I know what to watch out for this time around …
One of the issues I have is that the trauma of that reaction was such that I cant really recall much of any other effects after the first chemo… so it will be a bit like first time around.
Getting used to the variety of headwear I have garnered, currently modelling a nifty lightweight lacy cap in beige and light brown, but also considering - while still on the ‘good’ week, a toddle into town for a look at wigs…could be fun.
Glad today went well Rosie. Fingers crossed you don’t get any sickness. I did get a very flushed face for a couple of days but was not sure which of the many meds caused it. Let me know if you notice anything. Did you cold cap today? I expect it would be almost nice in this weather ?
Sometimes I just want to talk with friends about the old stuff we used to chat about, the gossip in the playground, tv things, who is going where doing what etc. Now all everyone wants to chat aboutn is cancer and chemo and my hair. I know they mean well and are caring but sometimes at home all day I forget about it and sit in the garden and enjoy relaxing. When I pick up from school I find it easier if I get there on time, go in the side gate and then don’t hang around. Looking forward to half term next week to avoid people but will have to go back with no hair the next week!
Off to see Oncologist today. I have filled out my excel grid with temp record and side effects so I can show them what I had on what days. I am asking for Emend and will cry until I get it. I did say to chemo nurse that the usual Ondansetron doesn’t work as had it in hospital but they gave it to me. I am not going tonight with nausea if there is something better out there. Also I am going to ask for something for my mouth, it is fine euthanasia contention day 5 my mouth was coated in dead cells and was horrible so again will ask for the mouth wash so I have it in case it is worse. GP has already prescribed Laxido (love the name!) ready for next time constipation issue, said to take one sachet the night of chemo to get the ball rolling so to speak!
At least my appmt is at the “easy” to park at hospital (Morrisons next door) unlike chemo which is more a park and walk a mile!
Morning. Blood with gp nurse this morning. Onc at hosp this afternoon. Was really enjoying 2 weeks of no medical involvement. Not feeling brave anymore. I’m the one hiding under the duvet ?
Morning all xxxxx
Think I need some sun cream today. Any special ones with or without the bad things parabens or nasty other bits any good high street brand anyone has checked out already?? My mouth is feeling a bit iffy this morning (I’m on day 5) so also my first day without anti sickness and steroids???
Xxxx
You can do it treehouse get to your appointments and hear encouraging notes from the doctors and prep yourself for the next blast another step closer. You can do it xxx
Mai7. Yes it’s hard we do everything we can to reassure ourselves and keep possitve busy and focused on normal things but at the same time have to keep reassuring our nearest and dearest it’s tough a lot of effort goes in2 making sure others feel ok. I have a twin sister who I live with and I worry all the time how it’s getting her down and I see her spraying Detol everywhere and struggling at work because her mind is on me. Sometimes I think my family are having a tougher time than me. It really does feel this has taken over our lives not dust how we feel, the treatments but evey conversation and evey tiny task we do something simple like getting in2 the car suddenly you feel panic what germ is on the dash who may I see and what questions will I get asked. Who will need some reassurance or who will be asking the next awkward question?? It’s not fun.
I agree. I try to imagine watching my husband go through all this and I think this is easier in a strange way. My poor mum did this 4 times so she knows what’s coming and that upsets her watching me have to go through it. Mai7 I know it can be annoying but I try to get in first to put her mind at rest. A short text to say if I am ok or not. And ask for help when needed. Some people offer to be polite. But others offer because they really need some way of feeling useful and need to help. I think I have worked out which is which and give specific roles. Everyone is happy and I feel cared for. Mum does child care. Mother in law makes soup for the freezer, sister-in-law does my toes, husband comes to appointments.
My kids go on holiday with their dad tonight- a week in Spain, I think that is also making me emotional.
Hi WolfEE, I’ve swiped my son’s suncream Child’s Farm 50+ spf and free from parabens, sls and colours. I’m very red this morning from the and waiting for the emend to work before I try eating, it’s good stuff. Raichr I know what you mean about trying to keep friends talking about the normal stuff. I’m catching up with friends today and told them I have a fantastic forum where we talk about all the symptoms so I can spare them and that I need the normal stuff to keep me sane. Mai7 good luck with your mum, we all need breathing space. X
Glad the Emend is working. That is one side effect I was dreading. I have given myself a talking to. And am now off to the docs. Hair is hanging in there but I have dreams it has fallen out taking my scalp off too. ?
So I ordered a wig in two different shades they want me 2 go in today and chose (I guess so they can sell the other one) I have an appointment on 1st Monday in June I think that’s the 2nd or 5th this will be about two weeks into treatment and at the fitting I’d decided I was going 2 ask them 2 shave so I just come out wearing the wig I know a little early but then all the fear of seeing the hair come out will be gone and I know the exact date in 9am that Monday and out an hour later with the wig.
I want 2 go today but if I’m honest my experience last week choosing was horrible we are lucky where we live we have a salon that works with the hospital that offer the wigs and it’s a normal salon but you go up a tin steep staircase in the middle of the very busy salon (I felt like Anne frank going up the stairs) before I reached the top I could already see a big shelf of plastic heads full of wigs all messy and wonky and it was a shock. I should have known it’s a wig shop there will be wigs but no easing myself in. There was no privacy and I was being asked personal questions in front of other customers and their husbands. I also felt I couldn’t discuss what I didn’t like about the ones I was trying on incase the lady sitting behind me was thinking the one I was about 2 slate was her fav?
The young girl sat me down (at a table that had coffee all over it that when I was resting my glasses down was getting all over the lenses) she asked me so why have you come 2 see me today what can I do for you. I wanted 2 say that I have come 2 a wig salon today because I need 2 MOT my car!!
So I’m not sure if I call them today say I can’t make it so I don’t have 2 go today and then again next week?
Thanks Mai you really are wonderfully bonkers?. So I have decided to rate my nurses on their blood taking vein stabbing ability. So far clemmy my chemo nurse is top with 10/10. Today not bad 9/10 as she had to deal with the mess left from the CT team 1/10.
Oh wolfee big hug. Is there anywhere else you can go? My hospital gave 3 three choices. I went for the closest but happy was with the service. Take someone with you. I tried a blonde wig for a change. I looked like my sister but wrong. Went for something that looked like me but no greys. I have been to scared to take it out of the box. Its been on my wardrobe for 3 weeks.
Morning ladies, good luck for all of you with appointments today!
Will have to look out for that suncream MJK. Was it just from supermarket? I’ve been trying to find paraben free one thanks
Day 2 and I’m feeling good today. Not as tired so sitting in garden in hat and factor 50 writing out my son’s party invitations trying to be organised.
I’ve ordered a plaque for my school mum friend who finishes her chemo next week and it says
"Remember you are braver than you believe, stronger than you feel and smarter than you think " we will get through this ladies xxx
Welcome lindylou. I have round 2 on Tues. Currently sitting on the sofa with a small pile of hair next to me. Yes scalp feels quite sore. Feel free to share I find this group very supportive and reassuring.