Glad you've got your meds sorted BiBi but rubbish about the veins. A port will make this quicker for you o guess. I don't have great veins apparently and they struggled last week to get one. They won't use the surgery arm unless the oncologist agrees as it might be affected by lymph node clearance. I didn't have that though so hoping the other side is an option rather than a port. Bless you Bravescholar and Sarah....I am exactly the same about seeing people and thinking they are talking about me and looking to see whether I look like I've got cancer etc. It's a horrible feeling to think you are the subject of gossip albeit most people mean well. I've become very selective about who I see and will only see those friends who are truly helpful and say nice positive things. I feel very vulnerable at the minute and therefore try to protect myself from any awkward situations. I am sure you looked stylish and cool in Tor headscarf anyway Bravescholar and good work on the tennis - impressive! I managed some yoga for he first time since my operation yesterday. I was very pleased with myself - 7 weeks post mastectomy and reconstruction and I could do a plank! Small things please me these days....😊 xxx
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
That's great news bibi it must be such a relief but make sure you have the other anti sickness tablets aswell as emend. Aww bravescholar I've just been to meet a couple of friends in our local pub. The rumour mill has gone round they are looking at my short hair looking a mess as I can't straighten it! I will probably be bold next week and hope I can handle it. But we are strong ladies and if we can get through chemo surely we can get through anything xxxxx
Great news re Emend, Bibi! But, my god, what with the veins it really is one step forward and one back. I had a lovely day today - even played a set of tennis in my wig! - then had a major meltdown at home later when i spotted two friends/neighbours chatting outside the house with my husband and i couldn't bring myself to join them cos they hadn't seen me in a headscarf before.
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!!
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 girls just checking in with you all. First one down!!! Well I'm pleased to report so far so good ( sorry bibi!!). Cold cap was totally bearable. In fact I had it on an hour longer than I needed as they couldn't find my consent form so had to wait for my onc to fax it over. So was on two hours before treatment!! The worst thing about it all was the four attempts to get the cannula in. By the second I thought I was going to faint so that was a bit dramatic. I felt like a wuss which is not the case at all. All in all was ok and met some lovely people who kept me right. Hope everyone is feeling good this evening. Let's hope I'm this chipper tomorrow 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.
Hi Bibi Have they given you any more sickness tablets? I was on 2 lots a day for the first 3 days and the red face I think its the steroids but also the nausea does go thats where I found the ginger ale the best and a good box set to take your mind of it. proudprestronian sounds like you are doing really well. i must admit I wimped out of having the cold cap. I couldnt face it on top of everything else I know Im not going to like losing my hair either but its winter time so I am going to buy lots of hats to put on top of my wig Hope you are ok lisa and shazza its your first chemo tomorrow? Good luck xxxxxxxx
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
Hi, I am from the September group. Had 1st chemo on 3 Sep. Used the cooling cap but hadnt given any thought to my history of migraines - triggered by cold temperatures, too much sun, not enough sleep, missing a leal, hormones, eating specific foods. Frim 8yrs till 55yrs. I had a bad migraine after chemo and had no medication to deal with it as its13yrs since last painful migraine. Kept having half hour naps during the night. A bit of fresh air and taking things easy plus food made for me by my daughter the next day sorted it out. Feeling great since with anti sickness meds from hospital and now self administered injections.
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
OMG Bibi you need to not leave hospital the next time until they give you Emend. I've been fine post 2nd chemo round... other than losing hair, which is really hard (but at least it means no more cool cap :-)), and that horrible taste in mouth.
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!!
Thanks Bibi I'm all set I think. I have my ginger biscuits and ginger beer ready! I'm going to stock up on a few mags first thing. The nurse mentioned me taking a hairband to protect my ears?!! I just want to get this first one started now xxx
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.
Bibi So glad to hear you are ok. Dont push yourself to hard over the next few days. But hopefully past the worst of it. Has the ginger ale worked for the nausea? xx
Thanks Ladies...I totally agree that this whole experience makes you really think about what you want to do and who you want to spend time with. I too am seriously considering a total change. I just want to spend as much time with my son, husband and other family as possible. Material possessions and stupid work targets just don't matter one little bit when you've faced this. I just need to win the lottery now though 😉 xxx
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
I agree with you Lisa. I got very stressed out trying to get everything done and now I'm going to take a step back and look for a very mundane un stressful job when this is all over with no responsibility. It will be a pay cut but I rather spend the time with my family and friends xxxxx
I know exactly what you mean blonde ambition with the whole career family thing. I was in the very early stages of opening my own hair salon with my current boss who I have worked for 15 years!! I haven't been anywhere near the salon since finding out as can't face seeing anyone. He's also stunned me by only paying me statutory sick pay since being off!!! To think this was a person who I was about to go into business with! I'm not working through chemo as I want to spend time with my children on the days I'm feeling good and not dashing into work. All this has really made me think differently about my life and career. I'm going to take a massive back step. No more dashing around fitting haircuts in after work. I'm going to have Saturday's off for the first time in 20 years and enjoy life! Ha sorry for all that. I'm sure you all didn't need to know that!! Xxx
Poor BiBi....really hope you're feing better today. Sending you a massive supportive hug. You are right....the only way is up! xxx I had my second Taxol on Friday. It was ok. Cold cap was very uncomfortable again but a little bit more tolerable. Again I closed my eyes and drifted off for most of the time which helped cope. I've felt ok since (sorry BiBi!) but was a bit emotional and down yesterday. I've been a bit tired and fuzzy headed. I kept bursting into tears. It's all just so much to cope with - worrying about hair, all other side effects, tiredness, wondering what the hell has happened to my life, trying to be healthy. I'm finding it hard going at times. Everything in my life has changed so much since diagnosis in June. I'm used to being busy and active and now my days are spent resting, going to the hospital or preparing healthy meals. I've gone from career focused busy working mum to a sickly housewife. Some days it's hard to accept. I know it won't be forever but it feels like that some days....sorry for the moan....I've got a friend coming for lunch today so hopefully that'll cheer me up. Hope you're all feeling ok. I really do. xxx
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
Try and insist on emend and an extra anti sickness that I have put below and you should have an extra one for the first night and strong headache tablets and ginger ale also if you are tired ask them for a small dose of diazepam . Lisa you will be fine if you have what you need beforehand . It sounds like bibis onc didn't give her the right anti sickness. Hope you are both ok ladies big hugs to you both xxxxxxxxxx
You will be fine Hun it sounds like they haven't given you enough anti sickness tablets so I would use that when you ring g.p. hope you can get some rest now. Keep drinking the water big hugs xxxxxxxxxxxx
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
What's the problem with them giving you emend? Have I spelt that right? I'm worried about the sickness more than anything. Although I never got morning sickness but do suffer slight travel sickness. I'm going to stock up on ginger beer and tea 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
Oh bibi It wont last long. Ginger ale ginger buscuits. If you can speak to your g.p tomorrow they can prescribe similar drugs I have codeine phosphate for the headaches and on top of Emend I was given Metoclopromide which is another anti sickness plus have you been given another anti sickness tablet to take tonight? Keep going with the water sweetie. It will ease. xxxxxxxx
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
Sorry forgot to add yes I am fine trying to do normal things and getting out of the house helps. But with this especailly for the first 3 days do as your body says. Dont push yourself too hard xxxx
I would insist on it, Say you have a phobia of being sick and you dont need any other added stress. I was bad for the first day as I hadnt got my medication right as well as emend I was given some extra antisickeness tablets and some stronger painkillers for the headache I had on the day. I also took 4mg of diazapam on the day to get some sleep as the steroids can keep you awake. But it really is all doable and keep a diary of the times you feel bad as apparently it goes in the same cycle for the first 3 FEC. Hope this helps and you are still feeling ok 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
oh carol i know exactly what you mean about words totally 🙂 The looks my husband and son have given me lol. Im yet to do the milk in crockery cupboard. 🙂 xxxxxxxxx
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
Hi ladies I love hearing your stories 🙂 And now there are a few things that I now want to buy white wine macoys crisps are the best and chocolate digestives. I have also done something else which is a bit silly but its chemo brain I think? We were all talking about the cookery book yesterday and I ordered it and then this morning I realised I already have it my friend gave it to me for my birthday! 🙂 Hope you are all ok ladies. xxxxx
