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February 2019 chemo starters

Nettienoo
Member

Re: February 2019 chemo starters

Glad to hear from you Trixielady was starting to worry. Sissy60 not been on for a bit either. I hope she is doing ok. MBJ I really hope you start heading out the other side of the crappiness tomorrow you poor thing.

Rosina, I’ve seen Brian Cox a couple of years ago in Manchester. He is great.

Marlyn I want to keep a journal. Have you managed to write something every day? I hope everyone else has got through the day as best they can. I’m downing water in prep for tomorrow. Is it 2 litres I should be having? I know there was a post recently about it but I have pre chemo brain.......if there is such a thing. Xxx

Marlyn
Member

Re: February 2019 chemo starters

Good to hear from you trixelady, must feel good getting number 2 under your belt....glad they sorted your ant sickness, hope mine get tweaked next week, heart scan tomorrow.....anyone had bones scans yet? Or is it too early? Xxx

Trixielady
Member

Re: February 2019 chemo starters

Hi Ladies, so sorry to hear your not all having it easy, I'm pleased to say I'd increased my sickness medication and haven't been sick, round 2 finished at half 4 yesterday came home had egg on toast and headed to bed praying that i wouldn't wake to be sick woke feeling sick but that was all still peeing pink.Been out for lunch and resting now xx big hugs to everyone going through their 2nd one this week xxx 

Susie B
Member

Re: February 2019 chemo starters

Sorry I've just read what I've just sent. Wrong and missing words, flippin predictive text. 😝

Susie B
Member

Re: February 2019 chemo starters

Hi everyone 

What another georgeous day☀️. We took the garden furniture out of the summer house on Saturday and have since declared it open.Glad to see all the chat that's been posted. It certainly was quiet this morning.

Sorry you're having a crap day MBJ. If it's any help my 5th day was the worst. Are or were you on steroids? My nurse thought it might have been the abrupt manner in which they stopped. She suggested I tell the onc and he  may reduce the dose more gently. For example 2 per day for 3 days then 1 per day for 2 days. If chemo brain allows I'll and remember to let you know when I see him tomorrow. By the 7th and 8th days I was back to my normal self apart from not being to eat apples or drink diet coke. Funnily enough I could drink scotch and dry though🥃.   

Rosina you lucky thing going to see Dr Brian Cox, very pleasing on the eye☺. Oh and brilliant to listen to of course. 

Seaside Sar thanks for you kind words. Chris, my son, is feeling very sorry for himself, but at least the doc has given him some anti virus meds to help. We'll soon have enough meds between us to open up a chemist.

Well day 18 the the hair is definitely going on holiday🏄‍♀️. It started its journey in the shower this morning and now I look like a red setter in full moult🐕. I popped down to our local shops, there's not many in our village, and on the way back I went into my hairdressers to let them know how things were going - quite literally regarding my hair. One of the girls whose mother had chemo and cold capped about 3 years ago lost about 30% of her hair, which is quite normal, so if you are cold capping don't give up in dispair just yet. My own hairdresser has offered to style my wig for me when I go in for a haircut in a couple weeks. My efforts look like its been styled by Donald Trumps stylist😨

All the Best to those of you who are yet to have chemo this week. We can do it!!!!

Seaside Sar
Member

Re: February 2019 chemo starters

Hi Susie B, 

 

I'm OK, thanks for asking. My son is OK too but very tired and suffering with a sore throat. It is horrible to see him like this because he normally has tons of energy. Now we're both as lethargic as each other!

 

So sorry to hear about your son too. It's so awful having to stay away when we most need hugs from our loved ones. I really hope you don't catch it too. Please let me know how things go with the onc tomorrow. Hopefully no delays to chemo for you. I am struggling to get my head around it as literally everything was planned around my chemo, even down to my weekly food shop. My husband is also finding it really hard as he hates the waiting part.

 

Thinking of you and wishing your son better. X

MBJ
Member

Re: February 2019 chemo starters

Thanks Marlyn

Probably not expected to feel so crap as if I don't care at all. But maybe it's normal for day 5 I bloody hate normal then. 

Marlyn
Member

Re: February 2019 chemo starters

Hi mjb, your totally normal, I keep a diary and have just read the " 5 days post chemo" day....this is what I wrote........

 

horrible painful wind, feeling totally wiped out, hard to concentrate and tearful. Just want to tell everyone to do one! I don't feel strong or positive or brave. And although people are asking after me I can't be bothered to reply...

 

so...as you can see I was having a tough day....this will pass......your amongst people who know and understand.....wish we had a fast forward button xxxxx

DiKat
Member

Re: February 2019 chemo starters

Sorry MBJ, don’t know why I replied to Rosina....mushy chemo brain. Well done on keeping the bowels moving, it’s the Ondansetron that causes the problem! My post should have said stay away from people with bugs, not hugs 🤗 Hugs are definitely a necessity from healthy people. Good luck x

MBJ
Member

Re: February 2019 chemo starters

Hi Dikat

It's me MBJ that's feeling crappy. Rosina was giving me sound advice. No other symptoms other than feeling as my brain is mush as if I have disappeared somewhere. And weakness. I just wondered if it was fairly typical if day 5 as I thought I might feel better than yesterday. Just had a bit of lunch now and some prunes and custard as one thing I have managed to achieve is keep the bowels going. So maybe I am just expecting too much of my body, would not mind if my brain would work a bit. Thanks fir the info and advice. 

DiKat
Member

Re: February 2019 chemo starters

Hi Rosina 

Thought I would put in my 2penneth as I have had 3 Fec. Have you got anything particular wrong like feeling flu like or burning urine or is it just that no energy fuzzy been hit by a bus feeling. Everyone reacts very differently and 5 days in is still quite early. I was about 8/9 days in with my first Fec feeling that fuzzy no energy/very little appetite feeling and didn’t leave the bed or sofa so was quite anxious reading that others were out and about and seemingly doing normal things! Rest as much as you need to and contact your unit if you do feel particularly unwell or have a temperature. Keep a log of how you feel and discuss this with your Onc at next appointment as you may need dose reducing. Remember you are soon to enter your low immune phase, days 7-14 so keep your distance from anyone with hugs. Stay safe, you can do this and if you want to know anything else, don’t hesitate to contact me x

MBJ
Member

Re: February 2019 chemo starters

Thanks Rosina

I think I need a bit of patience with myself, hate the out of body feeling, that's why I hate being drunk I think and as for a hangover well this the the one from hell that's for sure. I am eating some bread and cheese and tomatoes now and drinking some Lucozade. Oh and I have water too. I am really going to try and get better soon. X 

Kitkat18
Member

Re: February 2019 chemo starters

  • Hi MBJ, sorry you are feeling so rough, some of us are more sensitive to chemo than others, and it is still early days I’m afraid. However, as the girls suggest keep drinking and try to get out even if it is just a walk around your garden, it does help. You will improve and our oncs don’t want us completely wiped out so may reduce your dose next time if you really struggle. They reduced mine and I coped much better with subsequent doses. Sending hugs x
Rosina
Member

Re: February 2019 chemo starters

MBJ

the drinking plenty of water/ herbal tea advice is correct too. 

I also wear an eye mask when sleeping as I am naturally a light sleeper. The Yoga Nidra is also good practice for relaxation.

 I have also watched Trinny London clips as my brain hasn’t got to work and I find her entertaining 🤪haven’t bought any of her stuff though 😂

MBJ
Member

Re: February 2019 chemo starters

Thanks Rosina

I do wonder if I am expecting too much too soon. I am always busy and incharge as my husband would say. Now I could not find my way out of a paper bag. Thank you for caring xx

Rosina
Member

Re: February 2019 chemo starters

Hi MBJ,

day 5 ! That isn’t even a week. 

Apart from going for daily walks and doing my stretches/meditation I was having afternoon naps and going to bed early ( with a book if it was as early as 5pm) .

 I can remember my day 5 as after going for a walk in the park with a friend in the afternoon I couldn’t finish washing up as my right shoulder was really aching ( just came up out of the blue) so to bed it was.

 I felt much better the next day.

 I can sleep for England. Tonight if my energy levels drop I will leave during the intermission.

Don't beat yourself up 🌸🌺🌼

daisydi
Member

Re: February 2019 chemo starters

and as far as hair even using the cold cap you will lose hair so dont despair.  It is not a 100% guarantee more like you may still lose 40% but then you are left with 60% so worth it in my opinion.   If you didnt use cold cap all your hair will fall out.

daisydi
Member

Re: February 2019 chemo starters

just make sure you drink plenty of water MJB it really helps a lot and also please try to go out for a little walk.  Lets hope I take my own advice next week!  My pee is already clear as I have washed all that nasty stuff away (tmi) and I have to take my dogs out as they wont go with anyone else.  Hope you feel better soon xxx

MBJ
Member

Re: February 2019 chemo starters

Hi Rosina

I am on day 5. Expected to feel a bit better by now.  Absolutely no energy and my brain well God knows where that's gone. Yes I was fit I think not on any medication at all and I am 65 in two weeks. I will see how I feel today if no better I will ring tomorrow. But at the moment I don't think I could make the effort to go to be seen. God I am miserable. 

Rosina
Member

Re: February 2019 chemo starters

Hi MBJ

how many days after chemotherapy is today for you ? 

We are all different. Also how was your general fitness before chemotherapy? 

I am on day 12 today and I have done all the housework ( hoovering, laundry) going out next and this evening I am seeing friends at the Brighton Centre for an evening with Professor Brian Cox and Robert Ince. 

Chemotherapy nurse said I could go as long as I felt fine - and I do.

When I feel tired I just go to bed. Don’t care if that is 5pm. That’s what I did in the first couple of days.

 I would call your chemotherapy nurse if you are worried,

Hope this helps.

Rosina

MBJ
Member

Re: February 2019 chemo starters

Hi Marilyn and everyone.

God I have never felt so awful in my life. Last two days thought I would be perking up but I am so weak I can hardly think. Is this normal ddo you think or shou I get some advice? Don't think  my body can do it. 

Marlyn
Member

Re: February 2019 chemo starters

Daisy, glad you survived the night, my first week was the worse, it gets better but yesterday I was mentally very low as can clearly see hair coming out...crap! 

Anyone seen anything from trixelady? Hope she's ok...

want to pull myself together today as all the crying yesterday has left me with sore puffy eyes today and a mild throbbing head.....

Ordered a chemo cap from Amazon, it's nice with a jaunty peak, something I can quickly pop on without faffing about...xx

remember I love every single one of you....solidarity sisters xxxx

Susie B
Member

Re: February 2019 chemo starters

Hi everyone

Where is everbody👨‍👩‍👧‍👧👨‍👩‍👧‍👧👨‍👩‍👧‍👧👨‍👩‍👧‍👧👨‍👩‍👧‍👧?  Well guess it's just you and me daisydi. Re the meds, take it from me, consume the lot! I took the 2 lots of set dose anti sickness tablets plus 1 each day, at around 5:00pm of the  'just in case tablets'. Worked a treat.

Quick up date re my son. My husband has had to come home from work and take him to docs. This chemo really does affect the most routine of things. Normally I'd have taken him. I'm waiting for a call-back from one of the cancer care nurses for any advice she can give me and to alert them of my son's diagnosis.

I've just had a shower and washed my hair and now on day 18 after chemo day and after a couple of practice runs, my hair has decided to go on a little holiday, big time 😢. Better put a patterned top on now, I can see my hair languishing the shoulders of my black top.

Will be back later for a catchup. I expect  you're  all either out enjoying the sunshine 😎 or doing chemo.  

Nettienoo
Member

Re: February 2019 chemo starters

Daisydi, glad to hear things are going ok so far. I think the site was down for a while earlier. I couldn’t get on. X

daisydi
Member

Re: February 2019 chemo starters

Morning all, you are all very quiet hope all ok. Survived my first night slept till 4.30 and then back until 8 but then sickness and headaches had appeared so took every bit of medication I was given back to bed and now I'm up with a nice cup of coffee. I really think the trick is to take all the medication given and I am also drinking gallons of water. Hope it all works xxx
Susie B
Member

Re: February 2019 chemo starters

Morning Seaside Sar

How are you and your son? I'm asking because my son, who's 26 and still living at home has just been diagnosed with shingles😳. It started with r/hand chest pain on Friday and he dialled 111 on Sunday and paramedic arrived and thought it was muscular damage. This was all before my Mum/brother fiasco later in the day. Anyway last night my son said that he now had a rash which I checked and immediately thought shingles. Medics came this morning after he dialled 111 and confirmed my suspicions. So now, I've got the same concerns as you, with low immune system will I get it too?😷. He's seeing the doc later and has been advised to get info regarding me and I've been told to inform my onc tomorrow when I go in for my bloods and have pre assement stuff prior to 2nd chemo session. Fingers crossed I'll be ok, but may be delay to chemo as risk of me getting shingles is pretty high. So stay away from my son😷. You may not be alone in chemo delay😟. I'll let you know. xx 

Nettienoo
Member

Re: February 2019 chemo starters

Rosina, we must all take comfort where we can find it. I lost my mum 18 months ago at the age of 94. I have a lock of her hair in a box in my wardrobe which the rest of my family find a touch macabre but I get great comfort from taking it out and holding it against my face and stroking it on bad days. I feel she is with me when I do that. X

Stargazer1
Member

Re: February 2019 chemo starters

Well done Daisydi

Thats 1 down! 

I keep focussing on that 1 down 'only' 5 to go and I cant wait to get there, im the same as you i rarely took a paracetamol and now im rattling with medication.

Ah i wondered why i only had it on for 90 minutes not the 2 hours they suggested.

Look after yourself

Lisa xxx

 

 

Stargazer1
Member

Re: February 2019 chemo starters

Hi Seaside Sar

Sorry to hear about your delay, I fully understand your frustration, I didnt realise that could happen.

I had my bloods done today in preparation for Thursday and thought they had the result straightaway.

On a positive note yes you'll have another 'good' week in the spring sunshine.

Lisa xxx

 

 

 

Susie B
Member

Re: February 2019 chemo starters

Hi Deano, 

Sorry you felt a little unwell after your chemo. Hopefully your onc will sort you out for your next round of chemo. I've had 1 round of chemo, next is due Friday. If the trial I'm on has got me on the right meds, FEC, I'll just need 2 more rounds then surgery. Don't know if I'll have more chemo or radiotherapy after. If the FEC doesn't do it's job then I'll have 4 rounds of TC then surgery. That's the risk of the trial, possibly just 4 rounds of chemo instead of 6. Or 8 rounds instead of 6. Just give yourself a few more days and you'll soon feel much better☺

DiKat
Member

Re: February 2019 chemo starters

Hi Seaside Sar, DiKat from December here. Just wanted to say sorry about your delay. It does feel really frustrating at the time. I am having my 4th cycle tomorrow but this has been delayed by a week because of low neutrophils. My cycle 2 was also delayed because of neutropenic sepsis from cycle 1 so understand exactly how you feel. Just tell yourself that it is important for you to be at the right level to go ahead and try and enjoy having an extra ‘good’ week. Remember to try and protect yourself from anyone who is ill. Take care x

Susie B
Member

Re: February 2019 chemo starters

Hi Daisydi

Glad you got on with the cold cap today. Your nurse did the same as mine and did the 90min countdown from after the stuff had gone through that causes all the damage. I've just got to day 17 and lost about 12 hairs. How did you manage that walk? I crawled up to bed after my 1st chemo session, that was enough!🛌

Marlyn
Member

Re: February 2019 chemo starters

So nettienoo, wed it is then! The day will go far better than in your head...I promise! You will be pumped up and won't believe how quickly it all goes, before you know it, you'll be back home...

xxxx

Marlyn
Member

Re: February 2019 chemo starters

Oh seaside, what a let down, reading on past threads this seems to be quite common....you gear your self up .....getting ready to tick another one off and feel an achievement...then...computer says no! I am sorry and hope to goodness it happens rarely to any of us..xxxx

 

Rosina
Member

Re: February 2019 chemo starters

5E273AF5-9529-4BCE-BE4B-EC7A5E07A319.jpeg

I also have this Lady by my bedside. She belonged to my Great Grandma and has travelled from Tinos Island (Greece) ,to the Dardanelles (Asia Minor), to Egypt  back to Greece and now she came over to me at Christmas. She has a very comforting face. 

Rosina
Member

Re: February 2019 chemo starters

Hi Nettienoo

I loved this guided meditation as it also goes through the chakra centres and it asks you to visualise the associated colours.

 I had an interesting experience after completing this ( an image arose which was nothing recognisable to me but it pleased me greatly and made me feel happy).

Rosina 

Seaside Sar
Member

Re: February 2019 chemo starters

Well I've just had a phonecall from the hospital telling me that my neutrophils are too low so I can't have my chemo tomorrow. Never thought I'd say this but I am actually gutted as I was mentally prepared for it. I know I can look on the bright side and enjoy an extra week of feeling well but I just wanted to get this blasted thing over and done with! 

 

Rant over. Sorry.

Nettienoo
Member

Re: February 2019 chemo starters

Rosins, thanks for the meditation link. I’m def going to have a go x

Nettienoo
Member

Re: February 2019 chemo starters

Glad to hear you got through today ok Daisydi. 

I have just got back from my pre assessment and 1st chemo definitely on for Wednesday. Eeeek! It’s getting a bit too real now. I have decided not to cold cap. The unit where I am having chemo does not have them but I was given the option to travel to New Cross hospital in Wolverhampton where aI could have cold capped. It would make things more difficult for me.  I hope I’ve made the right decision. My husband is away with work now until late tomorrow night so I may need to chat a bit more often with you lovely ladies. I don’t think I’m going to be sleeping much before Wednesday. Xx

daisydi
Member

Re: February 2019 chemo starters

Thanks Marilyn.  Yes we are amazing!  

 

Bluetit, thanks for your message. Dont be worried about posting on this thread.  We are all in it together.  Good luck with your next one.  I am feeling ok so far just heavy legs and aching feet but Ive had so much anti sickness med topped off with the lovely Emend.  There are a lot of supportive and lovely ladies on this thread and it really gives me a boost.  Let us know how you get on this week xx

Marlyn
Member

Re: February 2019 chemo starters

Well done daistdi, that's one under your belt, I'm so impressed you went for a walk after, I just about managed to crawl to bed!

I know it's a way off yet as we have all just started but one day we will look back on this nightmare and shake our heads in disbelief, that we actually went through this....I really do think we are amazing...

 

ps just ordered some organic oil from Amazon, its for eyebrows and lashes to encourage growth ( for when we all look like reptiles) 

xxxxx

daisydi
Member

Re: February 2019 chemo starters

Well I'm done. Survived the cold cap and put my special treatments on my hair.  Think Ive had more drugs today that the rest of my previous life.  I got back and took the dogs out on the beach, went up the shop and bought myself some treats.  Not feeling too bad really.  My legs feel heavy but not at all bad, yet!  I do feel cold though had that freezing thing on my head for about 3 hours. Didnt have the do the extra 90 mins from the end of treatment as apparently its 90 mins from the end of epi ..  Staff were lovely and really get me and the hair situation.  They couldnt have done more for me.  Do think I might be developing 2 black eyes though and the cap was so tight!  Hope everyone else is ok.  One down, thank god x

Rosina
Member

Re: February 2019 chemo starters

Lovely, relaxing meditation

 

This is truly beautiful. 

Deano
Member

Re: February 2019 chemo starters

Hi MBJ

i too found the pressure uncomfortable and not the cold and had a headache afterwards I took paracetamol an hour before which nurse recommended but they didn’t touch my headache rang hospital and they said I could use anadin extra which I normally use and this fix the trick do I will use it an hour before. 

 

I had had upset stomach and headache and generally tired but otherwise I’m ok waiting for my immune injections tomorrow. I am having surgery after chemo and hen radiation therapy. I’ve had to put sun cream on as well on my face this rather in feb. The anti sickness made me a bit constipated but I’ll c how this goes 

Drink loads of water and try small gulps of smoothie energise by innocent as this may help to put some goodness in - good luck and keep going And keep resting in between one down 5 to go xx

Susie B
Member

Re: February 2019 chemo starters

Hi Seaside Sar,

Sorry to hear about your son. I had glandular fever at the same age. It's the sort of illness that you can get over within a week or it can last weeks. No one can predict that one. I was off work for 3 months🤒. Just make sure he gets plenty of rest and takes it easy as he recovers, it really can be quite debilitating. Oh, when he's recovered, if he drinks alcohol, tell him to be careful, I learned the hard way that glandular fever and alcohol do not mix well. My husband has never forgiven me for ruining his favourite, velvet jacket way back in 1977!

Rosina
Member

Re: February 2019 chemo starters

Sunscreen

 

For Susie B et al ,

Rosina 🌞

Susie B
Member

Re: February 2019 chemo starters

Hi Marlyn and everyone,  

Good afternoon from a bright and sunny Somerset. Feeling much better after this morning's rant☺. Thank you for the hugs and messages of support. Don't know what I'd do without you ladies, and this is from someone who was adamant that joining a forum wasn't for me. How wrong was I. So sorry to hear about your hair Marlyn, even with cold capping it's all hit and miss. I've got short, thick coloured hair so didn't have to make the decision to get long hair cut short. I am trying the cold cap and am on day 17 since chemo day and have lost just a few hairs. I'm sure  my luck can't last much longer. I'm washing it every 3 days very gently with Simple shampoo followed by conditioner. I just use a wide toothed comb to spread the conditioner through. Dry my hair on it coolest setting which takes ages and try to use a styling brush as little as possible. I haven't worn my wig yet but I may have to on Weds as I have to be at the hospital by 9:00 am to give blood and see the onc. I don't fany getting up at the crack of sparrows just to look good for the doctors  and nurses👩. Mind you my wig looks just like Donald Trump's - I'm sure he wears a wig - either that or he needs a new hairdresser😨. I really need to get to grips with it and style it properly. I've just taken out of its box given it a shake and plonked it on its stand.

MBJ
Member

Re: February 2019 chemo starters

Hi Marlyn

Oh I know what you mean I washed my short hair this morning (got no look on it at all) and said well fall out if you want then I won't have to boost cold cap any more. I have not been out yet since Chemo last Wednesday not well enough yet ( except for a little walk yesterday) so not worn the wig yet. It's still in the box can't find the energy or enthusiasm to be bothered. So I know how you must be feeling. 

 

Marlyn
Member

Re: February 2019 chemo starters

Hi susieb,

i can completely empathise with you. My sister in law and her family came to see me before chemo began as I wouldn't be up to visitors once it all began.....fast forward to last night....they have now decided to come tomorrow! My hair is falling out in shed fulls, I am mentally shot as looking in the mirror always sends shock waves through me.....I don't feel like me in any way what so ever, so how on earth can I sit in a room and " chat" when all I want to do is curl up on sofa and talk to you ladies???? 

I don't know what the answer is, I don't want any big falling out over this.....but just know.....I understand you...we all understand......xxxxx

MBJ
Member

Re: February 2019 chemo starters

Oh Susie B

It's all so stressful and sometimes the relationships that are the MOST stressful. I have a really close relationship with my sister who is managing to what's app me and ring when she can whilst on holiday in Kuala Lumpur. My lovely daughter messages and rings every day from Abu Dhabi. On the other hand my brother who lives in the next village and is the vicar has not been to see me or messaged me since last Monday knowing I was having chemo for the first time last Wednesday! My son was here on Friday from Bristol and I had to text him today to say be nice to hear from you!!!  So how do we deal with it all I have no idea. I suppose they are all dealing with it in their way too. I hope things settle down between you all and you get the support and understanding you need. X