October 2017 Chemo Starters

[karana23]

Thanks Meesha...we also have a big c centre on hospital site so will check out what's available when I go to collect my wig on Tuesday 😊 Have booked in for the look good feel great afternoon...looking forward to that!  Xx

[Meesh73]

Hi Karana, I got mine through my local "Big C" centre (not sure I have a Maggies near me). I'm lucky as there is a centre on the same site as the hospital and it's where they referred me for the wig consultation. You could ask your bcn as they could probably advise what's available to you in your local area. I found it really helpful as they also have books you can borrow (sort of like a library) and that's where they also advised I could get free reiki and also the look good feel good session.

[SueW]

My reiki was offered to me fre if charge by a local spiritualist centre x
I know other ladies have said it is available through look good feel better and Maggie centres if you have one local x

[karana23]

Had a lovely time with my sister thank you Meesha, although very short!!  Really gonna have to give Reiki a look as sounds good but not sure where t find out about it?  Well done Chaffinch for getting out and having a lovely warm scone....sounds lush!!  I've just been downstairs for a bit and had a packet of salt &a vinegar crisps...still feeling bit jittery but ok...may venture back down there again in a bit...feel like I'm missing out being stuck upstairs!!!! Xx

[Meesh73]

It wasn't too bad here earlier but now just drizzling. Glad you managed to get out for a bit.

[Chaffinch17]

Sorry to hear it is raining where you are Meesh73.
We have had a few hours of really warm autumn sunshine so we went for a walk and stopped at a coffee shop with nice clean outdoor tables (everything gets careful inspection from now on!) had a pleasant coffee and warm fruit scone in the sun not what I was expecting this weekend! Grab the little pleasures of life where we can. Caffeine hasn’t helped with the jitters but hey it was nice.
Back on the sofa now watching through the window as hubby scrubs the chicken house out 😎

[Meesh73]

Sounds like you enjoyed it SueW. I have some reiki booked but couldn't get booked in until end of November. 

I feel reassured that others are also feeling jittery and it's not just me (although I am sorry that you feel like that)! Having another day on sofa especially as it's now raining! 

Karana, hope you enjoyed your time with your sister.

[SueW]

If anyone has the chance to have reiki grasp it with both hands I feel so relaxed xx

[SueW]

I must admit to laughing to myself x have to find humour where I can take it 🤣

[Runnerbean]

Morning Sue, I know it probably wasn’t funny in the middle of the night but you made me laugh. Reminded me of the time a big spider ran across my foot when I was on the loo and I jumped up! xx

[karana23]

I'm feeling quite jittery today too...and also not ill enough to not be doing anything but don't know what I shld be doing!  Took dog for another walk and waved off my sister now I'm feeling a bit lost..!!  Eating melon as I seem to be liking that!! Xx

[Chaffinch17]

Feeling jittery does seem to be a thing. I blamed it on the steroids at first but I’m not convinced. I’ve not had any since lunchtime yesterday but still feel a bit that way and my skin feels stretched and a bit spikey too.
Glad that you seem to be doing ok Runnerbean 🙂
We are all so different which must make treating us quite a challenge!

[SueW]

Yes reiki at 2 healer coming to my house
Hope I lie down whilst it’s done cause if I am on a chair and fall asleep could end up falling off lol x
Just do what you can when you can be guided by your body x

[Meesh73]

Runnerbean, good to hear you're doing well and I hope it continues for you. 

SueW sorry to hear you didn't sleep well but you have your reiki today? You'll probably fall asleep during that lol.

Woke up feeling really anxious for some reason this morning and a bit jittery (hadn't taken any meds since yesterday am, so don't think it can be that). Just been to Tesco to do weekly shop felt a bit sick and giddy whilst walking round then started to get into a panic but was ok once I got home. Now back on sofa, not really sure what to do with myself as I don't really feel tired or ill but every time I try and do something I don't feel quite right either! 

[SueW]

Morning runnerbean I had a dreadful nights sleep but probably because at the moment I have to save all my wee for testing (medical reasons) and at 4am whilst trying to wee in a jug whilst still half asleep I managed to wee on my feet so jumped in the shower to wash them. Bit of a mistake as it woke me up completely should have just got out baby wipes 🤣🤣x

[Runnerbean]

Morning ladies, hope you had a restful night. I still have no side effects other than fatigue and feeling like I need to eat anything that isn’t nailed down after my steroids in the morning! Maybe the side effects will hit me a bit later in the cycle but reading all your up dates is does show how different it can be for everyone. xx

[Ali49]

They did with me cherry so my gp gave me cyclizine, which works on the brain. I only took 1 then didnt need any more. I think nothing is a given. You just have to see xc

[CherryBakewell]

Hey, Ali, just read your post with interest. I know we're on slightly different chemo regimes which might be why I'm having an easier time of it than you are but one thing I wanted to flag up was that I never used the domperidone at all. I took the ondansetron as they were prescribed but the domperidone were optional/as and when and as I didn't really have any nausea I didn't really see the need for them. I'm wondering if they maybe add to the side effects given what you say about them working on the heart... 

[Sue C]

Evening Ladies

Just wanted to reassure you all.......it is normal to still feel tired at this stage. The first cycle is almost the hardest because it's such a steep learning curve. Its trying to work out whether what you're feeling is just a side effect or is there something wrong?

Its a good idea to keep a diary, because there is a pattern to each cycle. 

I know all hospitals vary, but I was given a red book with all the relevant phone numbers in. If you feel that there is a problem, please phone the nurses on the chemo ward or the out of hours drs. There really won't mind and will be happy to help.

In terms of fluid intake......try to drink 2 litres a day, especially straight after the chemo, to flush it all through. Squash is fine, but some say that tea and coffee doesn't count. 

Hope this helps

Sue xx

[Ali49]

Donperidone made me feel funny. It works on the heart so made me dizzy, a bit sick and a bit of a fast heartbeat. I had felt great but the next day felt fluey and then had awful back pain. I didnt have a temp but just felt awful. The nurses never mind you checking in with them. Hope you all have a good night and feel better xxx

[SueW]

Claire bell yay another marmite lover xxx lol
Nice to hear some of you doing so well and the rest of you who are feeling a little fragile hope you feel better soon
Hugs to each and everyone of you xxx

[Meesh73]

karana, good to hear you're doing well. Yes today hasn't been too bad took one donperidone earlier today but nothing since. Friends came round but didn't stay long which was nice. I do keep having the old 30 mins of not quite feeling right and a bit of anxiety (no idea why), mainly mid morning and early evening.

Chaffinch, Claire-bell I also had an acidey feeling yesterday evening I think it's because I overdid it a bit with fatty, acid food (my friend bought me a little bake well tart, then I had cheese on toast with some tomatoes). Today I've stuck to plainer stuff and feel much better. I think I've also worked out that early evening is when I seem to feel the worst but am ok once I've eaten.

now also watching strictly!

[Claire-bell]

Well done Karana! Hope you had a nice time with your sis? I've had exhaustion hit me hard today - it's day 9 and I had thought things were getting better. Quite a lot of acid feeling in my tummy and just feel listless. Lovely to have my mum here and she's making me some soup and marmite on toast so that might perk me up in time for Strictly! Have a good evening all hugs xx

[karana23]

Sorry to hear you've gone downhill Chaffinch hope u start feeling better sonon! Meesha sounds like your having a good day...well done!

I've done quite well today managed to eat a small bowl,of mash potatoe and some pasta this eve..took dog for 30 min walk with my sis and now watching strictly! Feeling a bit acidy tho! Hope the rest of you are managing!! Xx

[Chaffinch17]

How are you Ali49?
I nearly rang my helpline when I woke up after an hour’s sleep feeling awful with a ball of acid in my stomach and feeling like my skin had been stretched on stalks. I was shivering after being sick but I drank some water took a lansoprazole and managed to get some sleep so it passed. It is so scary not knowing what is normal and what isn’t.

[WhyteFawn]

I just feel really tired really. And not very energetic but then again I've had little to eat in last 24 hours so that's not going to help. Random readings on thermometers but not over the limit. I don't know if it's just my mind running away with me. How did you feel when you phoned the nurses Ali?

[Ali49]

Casdie you just take care and dont take chances. If your temp is up ring nurses. My temp was fine but i felt awful. Xxc

[WhyteFawn]

Hope everyone's ok. I'm still really tired. Spent the day on the sofa. I don't have the flushes that I had yesterday. Been keeping an eye on my temp and even tho I have 2 thermometers neither seems to give me the same reading twice. I thinking just get a bit paranoid as my husband has gone out and I'm home alone. Ive Been feeling a bit weak but then again I haven't eaten much in over 24 hours. It's amazing how your mind can run away with you.

[SueW]

Thanks Cassie x

[WhyteFawn]

Drink whatever you want I think Sue. I wasn't advised by doctor to drink before going it's only what people have said on here. I was advised to drink plenty after to flush the drugs out.

[SueW]

Hi ladies lovely to read your updates x hope you are all well x
Can I ask a question drinking the water before chemo does it need to be plain water or is squash okay? Xx

[Chaffinch17]

Ali49 thinking of you and wishing you well x

[Chaffinch17]

Just managed to eat a small plate of bacon, egg, tomato and mushrooms. I’m amazed because an hour before I struggled to eat half a crumpet. Like last night I feel better for real food, long may it continue. Quite fancy a walk now too!

[Meesh73]

Runnerbean, sounds like you had a really good first night and fingers crossed for you that it stays that way.

Karana enjoy your time with your sister, mine came to see me last weekend as I think she also wanted to see my new short do in case the cold cap doesn't work and I lose it all! I also think they find it hard when they're a long way away and can't just pop in for quick visits. I also find I get a bit emotional when I know I've got people coming as I don't want them to worry about me.

chaffinch, sorry to hear you had a rough night, hope you feel better today.

claire-bell, it's good to keep looking for the positive things even when you experience little set backs I really admire your spirit for being able to do that as it's easy for it to get you down.

cassie, hope you managed a good night sleep and are feeling recovered from your exertion yesterday!

I am on day 4 after chemo now and no meds today. Feel ok at the moment, done 30 mins of gentle yoga this morning as heard that can be good and haven't really done any since before surgery. Have some more friends popping in briefly this morning, am going to have to ask them to excuse my hair as it looks a right state. After cold capping Was told to try to only wash it once a week and be gentle with it. Have been just putting fingers through it a bit to fluff it up but doesn't look good!

Hope everyone else is doing ok. 

[CK]

Karana
Enjoy your time with your sister. Epsom salts in the bath are brill for aches and pains.xx

Chaffinch and Clare bell
Hope you both pick up today! One day at a time is a good thing to follow and when you do feel good, its a great feeling. Lots of ginger drops and pineapple cubes for the nausea helps.xx

Runnerbean
Glad you are feeling good and I know whst you nean by waiting to see what SE you might get...but you might not. Lets hope so. Fatigue and funny taste buds can be dealt with, I made sure plenty of fluid to wash out and lemon in water or herbal teas.xx

[karana23]

I'm doing ok....felt a bit panicky last nite...in bed by 9 but with a busy pub downstairs it wasn't easy to sleep...maybe need to get some ear plugs!  Feeling bit strange this morning, bit emotional!  Gonna have some breakfast and hot bath and put smile on my face as my sister is arriving for a flying visit this morning and she lives 230 miles away!! Think she just needs to see me before my hair falls out 😂 

sorry to to hear your not feeling great Chaffinch 

keep going girlies your your all doing great xxx

[Chaffinch17]

I had a good evening but then a rough start to the night. I didn’t think that I would sleep then did for 2 hours and woke up feeling like someone had stretched my skin over poles and I was cold and had a acidic ball in my stomach. I was sick and then very shivery my temp was normal so I drank some water had a Lansoprazole which I am already on for stomach acid and thought about ringing the helpline but decided that I would try to get some more sleep which I managed in snatches. Very dehydrated this morning but not feeling too bad. Only had one steroid tablet with one weetabix and I’m hoping that will stay down.
Hope other ladies ok

[Claire-bell]

Hey everyone,
Hope you are ok Ali? Thought day 7 was a turning point but felt so tired and nauseous again yesterday and still have a headache this morning. I guess what I'm reading is we can only take a day at a time, and even within that day you can feel vastly different from morning to evening. I'm trying to listen to my body eat small meals regularly and drink as much water as I can. The mouth ulcers and spots have come today but I have a moulin rouge dinner party to go to Friday so I'm enjoying planning my outfit and having something to get dressed up for! Silver linings and all that! Hugs to you all xxC

[Runnerbean]

Morning everyone, hope you all had restful nights. Update following on from first fec yesterday is that nothing has happened. Feel a bit lethargic but no sickness or headaches and managed a full 8 hours sleep only getting up once for the loo in the night. I have had my sea bands on so that may have helped and my mouth is dry so drinking plenty of water. Fingers crossed when the side effects do catch up with me they are manageable xx

[CK]

Hi Ali
Sorry to see you are in hospital but its the best place to be right now and you can rest assured they will get you well enough again to go home. Lots of love.xxx

[WhyteFawn]

I'm thinking that Sue I've done more today than I have recently put together. I'm on day 9 chemo was last Thursday. Temp is ok I'm probably just tired.

[Sue C]

Hi Cassie

You might have just overdone it abit. Remind me....what day are you on?

Keep an eye on your temperature and keep up your fluid intake.

Phone your helpline if you're worried.

Sue xx

[WhyteFawn]

Feeling a bit rubbish this evening. Don't know if I'm over tired. Feeling really flush in my face. Very tired. Temperature is a little higher than it has been but not over 37.5.

[Chaffinch17]

Glad that I’m not the only one who loves sprouts 🙂
I managed a couple of thin slices of homemade sausage roll with a few sprouts a tiny sliced courgette and some spinach for tea. I wouldn’t have believed that earlier in the day. My hubby was making the sausage rolls for him and at first the smell was nauseating but as it carried on I thought I would try it. He brought me a thin slice which I could hardly eat but once that had gone down I asked for a couple of more with about 4 sprouts but the plate cane back with 3 slices and the other veg. I have to say that I have felt so much better for eating real food, he’s a star 🙂

[SueW]

Ha ha it rejected @ss at first so changed to butt then ended up with posting twice

[SueW]

Hi jelly tot 4 of us I know if now on Friday 13th x we can be the power rangers and kick cancers butt x lol

[SueW]

Hi jelly tot 4 of us I know if now on Friday 13th x we can be the power rangers and kick cancers @ss x lol