Katie, you just grabbed my attention with your mention of non-alcoholic gin. Is it good? What's your substitute? We were regular gin enthusiasts before my diagnosis. I even had the ginventory app. I've tried adding juniper berries and coriander leaves etc to tonic water but not quite the same kick.
Welcome to our lovely group AnnieMay. There are now 20 of us!
im having some really bad heartburn/acid. I've not been able to eat much this afternoon. I just took an Omeprazole from an old prescription from when I had the car accident and was on a serious amount of painkillers for 3 months! The Onc said it would be OK to use them. I hope it gets better soon. Sore mouth has gone again today thank goodness! I'm being a bit of a whinger lately!
re. Best pants, yes always, you never know whose judging you on the state of your underwear! Healthy undies, healthy body.
Raitchr, I think you're going to have to brave it and shave it this weekend, otherwise I look forward to more of your interesting stories! 😜
Yes I wear my best undies too. Have treated myself to some new matching sets since diagnosis.
Your hair issues made me laugh. Have got friends coming for tea/cakes tomorrow, I'm terrified I'll serve it up with a handful of hair!
Hello, I started weekly Pacitaxol on the 15th so have had 2 treatments so far, 3rd one due next Tuesday.
Not feeling to bad at the moment, appetite good so eating well with no nausea. Tend to get a bit achey on day 4 not sure whether the gardening is helping to contribute to this though. I have noticed that my appointments have a break after the 3rd treatment for a week, I don't know if this is usual. I haven't been informed by my oncologist how long my treatment plan is but looking through the forum 12 weeks has been mentioned. Ann
I put my best undies on too, never know who you need to flash your boobs at or strip down for exam!
My hair is falling out so much whilst we were driving to the hospital for appmt today my husband turned off the fan as he kept getting hair in his mouth. We also sat outside at hospital as had to wait 30 mins for prescriptions. It was very windy and my hair was falling out and blowing on to the people behind us, they were staff eating their sandwiches!!
I also found hair in the fridge this morning, I know that I haven't put my whole head in there so it must just follow me everywhere I go!
Hair is an issue, I want to chop it off but then I don't. I really think that over the weekend I have to do it.
Hi Lindylou, welcome to the May gang. No one wants to be here , but we're all soldiering on. Yes, the head hurts as the chemo kills off the roots. I've not had much sleep last couple of nights with stabby pains in scalp, but better last night as I had it shaved off. Wore a little sleep cap that I sprayed with water and it cooled my poor hot head. Second dose of chemo this morning, so at least that's one side effect managed! 🤔Hmm. X
Hope you feel better tomorrow, drink lots of water even if you dont eat anything. I have bought some chocolate milk shakes and breakfast weetabix milk shakes 21g protein to have when I don't feel hungry, thought they would cool me down on next chemo now it is warm.
My Oncologist gave me a prescription today for all the Emend, sleeping pills and constipation meds which I took to the hospital pharmacy to get in advance of next chemo. I just need to go for blood test next Tuesday.
Forgot to say that after this next chemo I am moving hospitals back to Kings Mills Mansfield for remaining 4 chemo. Such a relief as parking is so easy nextdoor at Morrisons. The hospital is relatively new compared to Nottingham City hospital, it is like a cross between an airport terminal and a hotel. Its clean, bright and relaxing. I feel so stressed going to City so I am pleased.
Hi Wolfee, I really feel for you. My experience was very different, and I would feel the same as you. How horrid! I chose not to use the hospital one, and when I was given my 'prescription' I was also given another leaflet for a wig supplier in the city. So I popped in there and chose one there and then. I had privacy and understanding and a great choice. Do you think the hospital supplier has become blasé about treating us BC sufferers? The supplier I used gets all sorts in, including theatre groups and transvestites. I don't know that I would want to patronise somewhere that ignored rules of common decency, cleanliness ( coffee spills!!!) and empathy unless I absolutely had no choice. Just my feelings, and if I was to come with you I'd give them a right slap!👊 X
Well ladies, glad the Emend is working for all of you. I thought it was ace! Arrived for chemo this morning to find nurses in a flap as, get this, there was no Emend!!😱. None in the hospital ....centre of excellence for cancer.....none in the local pharmacy. NONE. I emphasised I was very very sicky and needed something strong. They agreed and contacted the on call Onco who has prescribed a wonder drug (their words ......) It's called Akaynzo. It apparently lasts five days and the only other meds I got was steroids, today and tomorrow. This wonder drug has completely wiped me out. Because of my venous line I'm only in chemo an hour or so, but I was jolly glad to get home and lay down. The room was whirling and I've slept for a good three hours. Poor husband is in flappy chicken mode. I've managed some water, and a bit of soup, but that's it. Must try for more liquids. Had a bad feeling that the second one wouldn't , couldn't be as plain sailing as the first. Feel as though I've fallen at the first hurdle! What with that and feeling like Aunty Fester from the Addams Family, today is not good. However , tomorrow could be?🤔
Gosh ladies you have been busy chatting whilst I have been out at hospital, 25 posts to catch up on.
I have a new Oncologist!! A lady who understands nausea and morning sickness. She has prescribed Emend for the reminder of my 5 chemo cycles. The best constipation meds, didn't tell her the gp has already given me Movicol (Laxido) and some good sleeping meds. Also at next chemo there will be a mouth wash for me to have in my "take home" pack! I was all prepared to turn on waterworks for Emend but she said she wanted me to be comfortable and happy, as happy as you can with chemo.
Also treated myself to a new reclining garden chair from Home base on way home. Offered to get one for husband too. He declined but I have just turf him out of mine (ours!).
Enjoy the bank hols weekend everyone!
Welcome, Lindylou, this site really is wonderful.
Wolfee sorry you had such a bad experience with the wig fitting. I took a friend with me for mine and told her to be totally honest and make sure I didn't get something that wasn't right.
treehouse,you made me laugh that is exactly what I've done, just threw the box in the corner of the bedroom and not looked at it since. Hair is shedding badly today - so much for the cold cap
I remember someone else said their wig is too thick compared to their original hair and that's how I feel. I've arranged a free wig cutting appt at the cancer centre attached to my hospital on 5 June. Hope I can last that long!!
thanks! it's just a different sort of chemo, which will involve fewer sessions and will allow steroids to be given as an injection about an hour before chemo, as opposed to the injection plus oral steroids. And we will just have to see how it goes ...I am usually a very relaxed and confident individual but I must admit, the capacity of this effing situation to disturb your peace of mind is considerable.
BUT, a tip (I hope) for eyebrows has been a powder rather than a pencil, easy to apply and more effective. Thank goodness for daughters!
I hope that life is treating you wonderfully well, and that you and yours are gaining whatever long term benefits we will all gather from these experiences. Thoughts and bst wishes with you all...
Welcome Lindylou to our lovely group. Yes, I've had a tender scalp, almost feels bruised. I rubbed some Voltarol Gel on which helped a lot. Once you've shaved your head it's less painful!
Hi ladies, new to this site, what a wonderful site it is.... Due for my second round of Chemo 31st, my hair actually hurts, did anyone else have this?
WolfEE, sorry you had to endure such poor quality service. I wouldn't feel obliged to go back but it depends how desperate you are to get it sorted quickly. Finding another salon and trying on more wigs could be another stress. I went to hothair - they have salons in most major cities and offered a lovely discreet service and made me feel well looked after. They also accept NHS vouchers.
Treehouse, glad you managed to pull yourself out from under the duvet. Hope it goes well. If the scalp peels off too, just stick it down with a bit of duct tape, fixes everything that moves! WD40 fixes everything that doesn't move. (Warning: don't try this at home)
Treehouse, I think I need to supervise them better! Mum and sister both bake some nice vegan whole grain cakes and bread. Partner attends appointments usually. Mum has offered to clean but I don't think she should be burdened with that too often. I'll think of more jobs to distract them!
Rosie, thankfully my kids are still at Uni revising for exams so I assume they are coping well but hard to tell.
Hi all - Emend has definitely worked for me. No sickness this time - Raitchr make sure you don't leave until you get it! My onc said he wasn't going to mess about with trial and error and go straight to the best they have to offer
treehouse - you can definitely do this. I felt dreadful before I went yesterday knowing what was coming but it really wasn't as bad as my head thought and am feeling lots better today.
Mai7 - yes I know how you feel with reassuring others you're ok, it's exhausting when you're trying to get through all this. I can see how worried my daughter looks when I'm not well. Came down this morning and she had completely cleaned the kitchen spraying it with anti-bacterial cleaner. At 19 she really shouldn't have to think about this.
Here's to tanned/red faces -who needs 2 weeks All Inclusive in Cyprus when you can have chemo! Everyone keeps saying how well I look
Thanks WolfEE, I think now we're getting more into chemo life and further away from normal life, it starts to become a way of life you don't want to be burdened with. I'll lighten up again and not dwell on these thoughts. Thing is, I'm also afraid of getting emotional because I'm ER+ and if I get emotional it may increase my oestrogen levels and make the tumour grow again, so I stay in the neutral state of watching the wheels (call it mindfulness, robotic or whatever). Incidentally, we watched the film Ex- machina last night which I could relate to as a bald headed robot person under observation who wants to escape!
My mental lows are usually caused by my Mums anxiety. If she gets anxious and alters her behaviours then I get anxious or feel irritable. She has twice said she was going to cancel her holiday, which I managed to talk her out of. If she can't get hold of me she shows up on the doorstep literally with her fingers in the mailbox peeping through it, when I'm trying to work or have a carefree lunch break in the garden. She is very caring and would do anything to help when I need it so I feel bad for having these feelings of wanting to push her away. I just can't make her see my perspective at times, it doesn't sink in. It seems that satisfying her own anxiety is more important than understanding how I feel. Continuing to work has been the best mental escape, at least I can discuss business!
Anyway, yes it's a beautiful day so let's make the most of it!
That's right, Raitchr, the cancer does not define you! You will never be the same person you were. You are a bigger,braver, better person because of the cancer. Perhaps the braver you could tell your friends that you don't need or want to talk about C, but just everyday stuff? If they are true friends they will understand. Meanwhile, you just come on here and tell us all about it. We know, as were walking this path with you. Big hugs and enjoy the good weather - although hope you've got your factor 50! 😎
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!
Enjoy another lovely sunny day ladies!
That's the spirit Anniej! I try to avoid having any emotions if I can. It's the emotions which make everything more difficult t handle. My difficulty is coping with my Mums anxiety at times, i find the constant contact a bit claustrophobic and reduces me to a child like state and I'm a grown woman with a job and grown up kids. I try and understand how she must be feeling but with such a rigid regime of diet, injections, drugs etc I don't have the capacity. Anyone else feel like this sometimes? Like you want breathing space but then you need them to help sometimes as well!
Hi Rosie, I am on Emend and find it works really well for me, so fingers crossed it does the same for you. I believe it is quite expensive , but we're worth it! 😍
Had head shaved, quite traumatic as husband was crying his eyes out. Pleased that it is all gone.
Like Raitchr I didn't try much on in changing rooms yesterday as there was so much hair shedding I felt dreadful. Hopefully I will get some sleep tonight as for the last two nights I have felt as though I've had needles stuck into my scalp. Haven't eaten much today. Don't know wether it was the hair situation or the thought of the second round of chemo. Keep thinking that will be two down, so only four to go. Somehow that yellow brick road seems quite long today. The last one went well, so I am thinking it can't continue. Hey ho! Onwards and upwards, ladies, onwards and upwards!😳
Katie, I tested using this forum from desktop machine earlier (I usually use a tablet) and it works the same. You have to make sure the system still has you logged in though, otherwise the "option" drop down in the right corner changes selections available............... But, anyway, typo errors and spellings don't matter, unless I make them, in which case every one can laugh and point!