Bravescholar I am in awe of you playing tennis. Well done! It's a beautiful day here & I am just wondering if I can muster the energy to walk some holes with my golf chums later. I'm sure the hair thing is very upsetting, but don't worry about crying, my cleaner turned up yesterday & I just burst into tears all over her. She has a friend who has been through it, so was a real love about it all. I think our first time going public in scarves, wigs or if lucky with manky hair (mine's a greasy dandelion at the mo) will be upsetting for all, but if these people are your true friends they will support you/understand. The rumour mill is a hard one. I told an ex-colleague, mainly because I bumped into her just after diagnosis & she caught my crying in the street. I was told by a friend she was buzzing round a colleague's funeral the following week telling EVERYONE as if it was a juicy bit of news. Needless to say, I don't feel quite the same about her now. Hope you are feeling more cheery today m'dear. XxxxX
Patient Power! Just had an e-mail back from the consultant saying she will ensure Emend is prescribed prior to chemo 2. I am delighted,
Lisa I had the 5 needle experience too . . They could get them in, but the veins kept blowing up when they tried to put the stuff in. I am having a port fitted next Fri in time for round 2. I think the nurses are relieved. Me too!!
All the best BBxx
Fantastic news & no need to apologise. I am delighted you will avoid my fate on Monday. Also well done on the cold cap. I too found it much easier than expected. Maybe we are a bit lucky. All the best for later. xxx
Hi Sarah they told me to stay on domperidone/Ondacetron as I seem to be on top of it now, but I have just e-mailed the consultant & my clinical nurse specialist requesting a change to the sickness meds next time. I gave them a very detailed vomitathon, including hourly updates! Not pleasant reading, but I feel so desperate to avoid it all next time that I didn't just want to rock up an hour before the next chemo & expect things to have magically changed. She will probably think I'm a right pain, but then she wasn't there on Monday night.
how are you? BBxx
Hi Bravescholar Soooo sorry you lost your hair anyway. Must be hugely upsetting for you. They did tell me they will stop the cap if I lose too much, but they were pretty upbeat about it working. A lady sitting next to me had lost hers despite the cap though. I guess we can but try. You did everything you could. It's just sh*t all this. Woman at the golf club who had it said her toenails have started dropping off 6 months later! To be honest my hair looks manky already, so it's not all that keeping it. I am really doing it to speed re growth. The nurse did mention they don't do cold capping with the T part of FEC-T because the infusion is too long (?need the bed for the next unfortunate). I was horrified! What's the point in doing the first 3 then. Could some of you ask your teams what happens at your centres & let me know please? The woman I mentioned earlier was there with her husband who now has cancer, when I said how unlucky, she told me their son had it a while back too. I have headache, bright red/ hot face & a bit nauseous today, but nothing like Monday. Anyone know how long the sickly feeling takes to go? BBxx
Bibi hope you're feeling better today and agree with Bravescholar give them hell until they give you the proper meds - I've read on here that some won't give Emend because it's the most expensive and that makes me so angry! Lisajane good luck with your first chemo - the chemo nurse put lots of conditioner and some water spray on my hair and they also gave me towels, and a couple of them wheat bags - one is good around the back of the neck where the cold pipe is. I had paracetamol beforehand but also 1 tab 1mg lorazepam - I'm off for chemo tomorrow which will be 6 out of 12 weekly so half way there and wishing my life away waiting for this to finish! Hope everyone feels better this week and good luck to those having chemo xxxx
I was told to take a hairband, conditioner, comb, spray & towel, but they had it all there anyway & had never heard of putting conditioner on before the cap. It was a tip from a mate of mine treated at Marsden Chelsea. Anyway we didn't put any on & my hair was super dry when it came off & had to spray leave in conditioner on it to get it back to normal. Next time I would put it on I think. Also read somewhere drink tea as it cools down to stop brain freeze. Your head can't decide if it's cold or hot. Good luck!!
Sue What a lovely cheery post. Clear mammogram is what this is all about. So pleased for you. You must be over the moon. Hope you are out celebrating! x
LisaJane all the best for tomorrow. The actual treatment was much easier than I thought, not worth all the anticipation worry. I did have a couple of paracetamol to help with the cold cap first, which meant it was less painful when they were trying to get the cannula in. The other thing I would advise is to ask if you can take a sick tab as soon as you start to feel nauseous, rather than before bed. I think if I had done that I might have averted a lot of unpleasantness. Let us know how you are when you feel up to it. We'll be thinking about you. xx
Hi Bibi just browsing from November starters and your post brought it all back to me so really sympathise with what you have been through. I didn't have Emend first round and was sick every hour for 13 hrs and couldn't keep any meds down. GP came following day and prescribed an anti sickness that goes under your tongue.....not particularly good for chemo sickness but eased it long enough to get other meds down. Sorry cannot remember the name of it but ask your GP if you still don't get emend next time........ sincerely hope you do it made it much more manageable for me. Keep strong you can do this I can't believe it is now 6 months since my last one and after just having clear mammogram yesterday it was well worth every side effect. Love Sue xx
Unfortunately the whole idea of ginger just makes me feel sick after yesterday! I do fancy a lucozade though, something I would never touch usually, so hubby just dispatched off to get some now. Just had a stroke of luck at the GP as the practice nurse who did my neulasta injection also works at the Marsden. She asked me how it went, I relayed the whole sorry saga & she immediately got onto the ward to get my notes annotated. Apparently the 24 hour hotline bloke didn't bother to put anything on my file at all! Need all the ammunition I can get to go into battle with Mrs No Emend next time She said now I'm on top of it that the worst should be over. So pleased to hear that. 😂 tears of relief xx ps thanks again for helping me through last night.
LisaJane I cannot believe your work colleague has done that to you. How mean! Haven't they got a caring bone in their body? Maybe you've had a near miss & best you found out about their horrible side before you went in together. Lots of the girls round here do mobile hairdressing when kids are at school.they seem to do ok & don't have horrible boss to deal with. I think we'll all be different after this . .x
Thanks all for your wonderful support yesterday. I am actually posting s/thing positive this morning you will pleased to hear. Threw up the tablets again last night, burst into tears, similar thoughts to yours BlondeAmbition, got so over exhausted that I fell asleep until 6 am. What a godsend! When I woke up I felt sick but not that bad, managed to get down a glass of water and two anti-sickness tabs AND KEEP THEM DOWN!! Felt like I'd won the lottery! Also has some dry toast. Yippee! Then went back to sleep. I'm hoping the worst is over, but don't want to jinx myself. How vile this whole experience is, but as long as you get a big of respite between the worst it makes all the difference. Green sludge & post op exercises firmly in the back seat whilst I'm in survival mode. Hugs to you all xxxx
We've just had to call the 24 hour line because I have now thrown the other anti sickness tab 10 mins after I took it. I feel as if I'm in a nightmare here. Can't drink to lessen side effects because perma-nausea. Can't get rid of the nausea because can't keep the tablets down long enough to absorb. Just been told to go back to Domperidone, but no other options if that comes up, until 5am. Could be a long night, boo hoo. This has got to get better, right. Sarah you're so sweet. Thank you so much. xx
I would definitely recommend. I had ginger & raspberry queasy drops, which did enable me to hold off for an hour to allow the domperidone to absorb. If I was a scientist I would invent anti nausea pills you don't need to swallow!!! You'll be fine, but feel free to moan to me if not, you will find a very sympathetic ear. Hopefully it will be better by Weds. Good luck xx
Thanks, just be soooooo sick. probably the worst ever in my life. On the upside feel much better after. Not impressed with domperidone, I think I prefer Dom perignon. Just burst into tears on HB who had been nicely snoozing on sofa. He's now en route to Tesco for some under the tongue paracetamol. I don't want to frighten anyone who has yet to start, so you should know that I am a super sickie person . . In car, after ops etc hence having all the ginger kit to hand. That's why I wanted emend dhuurrrrr Doctor. LisaJane I'm sure you will be absolutely fine. I'll stop talking about it now . . Supper time & all that xx
Glad you've got he first one out of the way Bibi and that the cold cap was ok - before I got the Emend from the hospital I went to my GP and he was going to prescribe some - I would also insist on it. I had Emend for 3 days and then on the fourth day one Aloxi - it might be worth speaking to your GP and try and get some there. Hope you feel better soon big hugs xxxx
Thanks so much Sarah. Paracetamol has reduced headache to manageable level, but I am so nauseated I feel vomiting could hit at any moment. I have had ginger tea, queasy drops, sickness pill, peppermint & ginger beer. Belt & braces or what?! If I can just keep the sick tab down for another 30mins hopefully it will kick in soon. That registrar's ears will be burning & it's not the left for love one right now 😠 xxxx
How long was is really bad for? Do you feel back to normal-ish now?
I practically begged them for emend, the memory of post op vomiting is still very clear in my mind, but mine is the only consultant at the Marsden who refuses to give it! Really drew the short straw there.
I do like/trust her other than that, so I guess I'll just have to get on with it.My husband says he's waiting for my head to start spinning round! I do have a bit of a headache now
Well one down & 5 to go. Cold cap wasn't as bad as I expected Carole, probably because I followed your advice & took a cheeky tablet before hand. I feel a bit wired, but nothing else. I am apprehensive about later, but we'll see what happens. Hope all's well with you all. xxx
Thanks Bibi - yes going to have a nice rest tomorrow and do hardly anything and I now have more meds from the chemo uNit to cope with the sickness - they gave me Emend for 3 days and then something beginning with c for next day so will get on top of that - certainly going to try your green juicing also although chemo does make me crave chocolate and cake! xxx
Carol You are nearly half way through. Must be a nice feeling. Not as great as the last one, but certainly getting there. Well done. Really pleased for you. Hope you're feeling ok. xx
Definitely chemo brain Sarah - yesterday I put a tin of beans in the fridge and the milk in the crockery cupboard - also saying words spontaneously that don't go with the sentence, if you know what I mean! Xx