May 2017 chemo starters

[treehouse]

Hi Mai7 I was given omeprazole on my hospital goodie bag and have been taking every day so i expect it is fine for you too.
Hi anneemay. Welcome go our mad bunch. I almost couldn't log on earlier today. Not sure I would get through round 2 without this extra bit of support.

[Mai7]

MJK, what the Dickens is filgrastim? Sounds like some offshoot of Pilates!

[MJK]

Welcome annemay. The gin substitute sounds good. I've just done my first filgrastim , feeling quite proud of myself. I've taken some slow release ibuprofen to help the aches. What other side effects do you get with these? Have to hand it to the chemo nurses - they've given me the emend for next time so it's working when I turn up.

[katie11]

Ha they are just ready made ones in a can from Co op. Not bad can almost fool myself. Quite refreshing with some ice and slices of lime x

[Mai7]

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.

[Mai7]

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! 😜

[katie11]

Sounds like you have all had an eventful day! I've rested in the garden and now just treated myself to an non alcoholic gin and tonic ! Enjoy your evening ladies xx

[treehouse]

Lol Raitchr poor nurses eating lunch. Glad your appointment went well. Nice to have the meds in advance.
Hows this for service?! I had a blood test at my local GP at 9:45 this morning and they had my results for my appointment at the hospital 10 miles away at 4:00. 10/10

[Rosie65]

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!

[Anneemay]

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 

[treehouse]

Anniej. No Emend!!!!! Eeek. Sorry you feel rough. If you don't improve make a call. I am nervous about round 2 as I found the first one so tough 😡

[Raitchr]

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.

[treehouse]

Hi girls. I am good to go for round 2 on Tues. Onc seems to blame pains on the injections and is giving me better pain meds. I have a few questions for you....
Am I the only one that...
a) wears her best undies for appointments? ( my husband thinks I'm odd)
b) was checking the chemo waiting room floor for hair ( mostly my own)
I keep thinking I have walked into spiders webs but I is my hair falling

[Anniej]

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

[Raitchr]

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.

Heather

[Anniej]

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

[MJK]

That's good news Heather. Hopefully it will make the coming weeks easier. Think your husband needs to get his own chair though. My patio thermometer says 50c so I'll give it a miss! My son starts school in September so I've just been chatting to the teacher so they know what's going on ahead of time. It's a really supportive school which helps.

[Anniej]

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?🤔 

[Raitchr]

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!

Heather

[Rosie65]

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!!

[maggie aitken]

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...

[katie11]

Welcome lindylou. Hope your ok other than hair loss. My scalp went very sore and couldn't even sleep on it at one point. Then it all matted after that i made the decision to cut it very short. Has helped loads and you don't have to see as much coming out x

[treehouse]

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.

[Mai7]

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!

[Lindylou50]

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?

[Mai7]

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.

[katie11]

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

[treehouse]

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.

[treehouse]

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.

[WolfEE]

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?

[Mai7]

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]

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. 😨

[Mai7]

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. 

[MJK]

I'm a specialist literacy teacher and making loads of typos, missing words out and rambling. Good thing you don't know my manager! 😁

[MJK]

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

[Rosie65]

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

[treehouse]

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.

[Mai7]

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!

[WolfEE]

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.

[WolfEE]

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

[WolfEE]

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

[treehouse]

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 😢

[Mai7]

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!

[Anniej]

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! 😎

[Raitchr]

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!

[Mai7]

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!

[Anniej]

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!😳

[Mai7]

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!

[MJK]

So that's why I'm red faced today 😋. Here's a link to AC chemotherapy
www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-...

[treehouse]

Ok that answers the red face question. Lol to commission 😁.