If these are normal reactions I would hate to have an abnormal one!
Glad you were able to get the full dose at least. What have they said about your next session?
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Theyāve slowed down the paclitaxel 1.30 instead of 1h. Had carbo today, but a smaller dose as some minor issues w my kidneys fonction and I think they loaded me with anti sickness/anti allergy or am getting used it. Lots more steroids this week. Some nausea but so far under control so better than my week one. Gcsf injection tomorrow which made my body aches. But after tomorrow thatās my big week out of the week and I look forward to be able to move more again in the next coming weeks and that means am half way through this initial course of meds 
(EC starts at Christmas 
)
It does get better w time they say (although I was v anxious this morning and cried cause I didnāt want to go cause I had bad experience first week) but had good last two weeks . You win some you loose some. If I managed that would be wonderful 
all the best through this week xxx
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Rather annoyingly, for some reason I wasnāt called by my consultant on Tuesday as I was expecting. Instead someone called to set up a face to face meeting for next Tuesday. This means no chemo this week for me. I am finding this stop -start very frustrating. No one wants to have chemotherapy and the waiting is making it worse.
Part of me is a little worried that I over-reacted to the sensations I was having last time. I had been talking to the lady next to me (she was with me the previous week so knew what had happened). She said that she is not aware of the chemo drugs going in (in fact she fell asleep and was convinced they had forgotten to start the drip). That made me feel that I should be able to just sit and read/doze/whatever without any uncomfortable sensations. Maybe I am being unrealistic and most people have some awareness during chemo?
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Hey Gwen, its a real rollecoster isnt it. Its understandable being anxious, as my (limited) experience so far is that I think I know what to expect but its never quite as straight forward as we think. I hope it all went ok this week , youāre doing it, ticking them off , big hugs xxx
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Hope everyone doing ok. Iām feeling very sorry for myself today. I woke up at 2 with a fair bit of pain and took some co-codomol but not much effect. then at 5.30 am I had a really strong pain at the bottom of my spine. The same pain I had when I took a reaction during chemo last week. i knew the onco team start at 8.30 so I held on and rang then to speak to my nurse, who wasnāt in today. The person I spoke to was very rude, she asked if I had a temperature ( no) and was I eating and drinking (yes) . ok then I should speak to my GP.
which I did and he said he felt unable to prescribe anything as he couldnāt be sure if it would affect the chemo . So he said he would call them and ask their advice, and he rang me back and said thankfully he had called and not me coz they were really rude to him too! But he told them straight to get an oncology nurse/doctor to contact me and discuss what was going on whathe options were for me. Then a lovely nurse called me from a different hopsital and we talked through eveything and she has prescribed me methodone for the pain, and other meds for constipation etc.
But honestly was in tears all morning. I felt uncared for and in pain. So much for contact the team even for a small thing coz they have seen it all before and will help. Not a great experience. I know the chemo is going to have side effects which when they come I need to ride out the storm. But surely I dont have to suffer and worry.
Anyway, getting it done, hoping for better days, and getting lots of cuddles form my dog! take care everyone xxx
PS does anyone else take methodone? Iām so afraid of it!
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How awful that they were rude to you. As you say it would put you off asking about anything and potentially missing something serious. Did they say what might be causing the pain?
No experience with methodone, so no advice for you Iām afraid.
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How awful that they were rude, itās not nice Yiu should be seen ASAP and have an emergency helpline phone number and they tend to Yiu to help you. Not taken those meds
Thank you for kind message. Hope your pain settles XXX big hugs xxx
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Hi all,
So iām due to have my second round of chemo Monday ( 30th October) bloods tomorrow but Iāve come down with a cold. No temperature but my nose is running like a tap and Iāve a bit of a sore throat, has anyone still managed to have there chemo whilst having a cold, I know my bloods will tell me more tomorrow but just wondered if anyone had the same experience?
Lisa xx
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Hi @lisa_p83 ,
Bummer you have a cold on top of everything else! I am curious too if a cold will stop chemo. Due to have my second one on 8 November. All these wee extra things we need to think of xx
Todayās update.
The pain has almost from my lower back, thank fully! had a lovely phone back from oncology team today to check I am ok after yesterdayās rude nurse debacle. She explained all these harsh side effects are from the stomach injection and that Iām unlucky getting it bad on my first one.
Had an unbelievable bout of constipation - not been since my chemo last Thursday! they gave me 2 types of laxative, which I took last night, then this morning, I was so ill trying to go to the loo! sweat was pouring off me and I couldnt stand in case i went over. and felt so sick. However once all passed out(if you know what I mean) a 30 minute lie down and I felt better, phew. just have nausea now- taking the anti sickness pills helps. But cant quite shake it. And everything I eat tastes awful. Salty - even sweet things are salty!
I can recommend The Marsden Cancer cook book - lots of advice and ideas. Hubby made their courgette muffins the other day and I have them on standby when I really cant each much .
Oh and randomly had a young woman who I barely know send me three voice messages on my IG account about how she knew an elderly lady who wanted to avoid steroids and took alternative medicine instead! wow, not even as if it was her first hand experience! I replied , thank you but youāre too late as Iāve had them already , and actually quit enjoyed them (they were the best part lol).
see what tomorrow brings, fingers crossed the worst is over.
Hope everyone doing ok and those who had treatment recently are getting through xxx
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I have just completed my treatment of a double mastectomy followed by 6 sessions of ECT chemotherapy every 3 weeks and then radiotherapy and I want to share some advice with anyone about to start chemo.
PLEASE DO NOT CUT YOUR HAIR - big mistake
PLEASE USE THE COLD CAP (do not be put off using it by the hospital )
PLEASE CONTACT Daniel Field a hairdresser who works with people going through chemo and has created some hair products to use with the cap and throughout treatment which have worked wonders on my hair. I have mid length hair and the managed to save around 70% of my hair and it thinned all over but there were no no patches.
There are no guarantees I know it might not work for everyone, but its worth a try my chemo was a harsh one (docetaxel ) and it worked for me
I bought 2 wigs and many hats expecting to lose all my hair but instead at times my friends could not believe I was so ill. It helped me get through what was it a difficult time, its bad enough having the treatment feeling ill, let alone having to see yourself in the mirror everyday without hair.
Having successfully kept so much hair I didnāt wear my wig once or any hats/scarves
Daniel has had cancer in his family and is devoted to helping others. He had a free online call with me about my chemo and talked me through the cold cap process and his products, he sells them at cost, works with charities and is trying to get them into the NHS. He gives no guarantees but I was recommended by a friend who had cancer and managed to keep most of her hair too.
I cant tell you how much it helped me to keep a positive attitude and for others to see you as well and not sick throughout. Having finished treatment in July my eyelashes and eyebrows are already are back better than ever and my hair is growing back strong too although a little more grey and I look like I have a 70s mullet with new hair growing out on top.
LIke others I had sickness for 5/6 days and severe tiredness as well as joint pains and changes to my appetite but it does all pass and my 3rd week just before the next dose was always a good one. I walked everyday however slow or tired, or short the walk was, my husband was there for support along with my dog Barney (who clearly seemed to know i was not well and sat by my side rather than jump on me )
I attach a picture of my and my husband, this is my hair one week after my last dose of chemo I had lost my eyelashes and eyebrows but kept alot of my hair.
Happy to share more of my experience if anyoneās interested
Good luck to everyone out there, its a difficult time, take it day by day, listen to your body. There is light at the end of the tunnel so grateful to all those who have helped make the treatments today so much better than they were in the past.
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@pearly1960 This is so inspiring , thanks so much for sharing. So good to hear your positivity. Give us hope 
xx
You look amazing btw 
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Just what I needed to hear Pearly as I am riding out my first week of 2nd cycle paclitaxel, pembro and carbo. UTI on top .
I know I will feel better but god time doesnāt fly fast enough!!
On hair thank you for the recommendation. I canāt seem to find any wig I like. I have had the cold cap and nearly did not do it, the nurse encouragede, but it works so far and my hair is still there. (Down below not so much this week!!)
I am hoping I can keep it till treatment changes to EC at Christmas (yeah to me) which apparently is harsher and cold cap may or may not work. I think I am starting to loose eye brows hair so will get a pencil.
You look fabulous!!! 
š©·:purple_heart:š©·
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Hi lovely ladies,
I hope everyone doing ok going into the weekend. I saw this posted on a FB page for BC UK and I have just applied for one. Its a little box to help people undergoing chemo and is provided free, although you do have to provide quite a bit of evidence to prove you are having chemo! Get A Box - Little Lifts . Also @pinklilli3s posted about another box you can apply for which is right at the start of the Oct Chemo starters thread. Itās so lovely to receive something like this in the post, a nice little boost
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Pearly1960 inspirational post and hope more than just Oct chemo read this, good to share your info on Daniel Field products for use with cold cap, will give others options of products to try they might not be aware of great photo of you and husband thank you for sharing with everyone sending much 
Shi xx
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Thanks for this.
Feeling so constipated today and yesterday. Was trying to fall asleep in the child pose position to relieve the pressure!!!
Had a warm bath this morning and I made me feel better. Taken the laxitive but body seems to be in no rush!! I might have to dance on some r&b again to get some bowel movements. I just donāt have the energy this week itās so infuriating these ups and downs. Hoping I can get to the yard just for ponies cuddles and a bit of walk, it will do me good I think. I feel I am carrying twins!!! At least less nauseous this week. One win 
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@pinklilli3s So sorry youāre having a time of it with constipation. It really is the most awful feeling. Hope the laxatives get everything moving for you soon and you start to feel better 
I feel I turned a corner yesterday and feel a bit more like myself today. Thatās 10 days after the 1st chemo. Have shaken off the aches and pains and the nausea . Still have constipation, think Iāll have to take one of the laxatives to get going!
Managed a walk earlier and saw a beautiful horse on my travels . And was thinking of you @pinklilli3s so took a snap!
Sending big love and hugs to anyone who is going through it this weekend. We are doing it! And we will get there xxx
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Hope you managed some pony cuddles there was a few of us who had constipation from the steroids we had to take, senokot worked for a few of us and I remember one of the girls being given movicol which helped not sure if youāve already tried that it is frustrating and makes you want to shout, but keep enjoying your horses they are amazing therapy just their gentle calmness and being near their strength Shi xx
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I have tried the movicol and I take up to 4 a day. Worried I could go the other way so not taking 6 but maybe this morning Iāll take 3 of them. It tastes awful, even w mint syrup! I tried 2 Dulcolax last night. Mum recommended glycerine suppositories and nurse said was fine to try. I barely keep it in 10 min as tummy was so painful. Am sooo tired this week as tummy crumps and constipation are painful and wakes me up through the night. Then I run to the toilet and nothing happens!! Itās like a bad soap opera w a crappy ending leaving you hanging. (No pun intended lol) I literally managed to fall asleep upside down in my bed, legs on pillow, face down, with water bottle pressing on tummy w a pair of socks rolled under my diaphragm to release pressure to try to relax 
I could feel a lot of acid burning . Iāll never make fun of babies falling asleep in funny positionā¦ You gotta do what you gotta do, you do you!!! Iāll try to go out today as well, will help w bowel movements or dance to the beat w the playlist @annemanc made . It was very helpful! Also I thought an oily fish and chips would help w the oils in it but maybe not that much š©·
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Going out yesterday made me feel better to be in the fresh air for sure even if it rained I didnāt care, was so glad I could walk but I couldnāt button my trousers!!! Then once home after ādinnerā I couldnāt keep my eyes open in front of TV and fell asleep.
The horses are my therapy and keep me going. I am glad you had a better week and canāt wait to be there myself!!š©·
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