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February 2019 chemo starters

Ally2019
Member

Re: February 2019 chemo starters

Hi Marlyn, 

 

I suggested it, I just have a tablespoon 3 times a day on its own. I don’t mix it with water xx 

Nettienoo
Member

Re: February 2019 chemo starters

I’m up for trying the lifemel honey, most definitely. Anything is worth a try and Implausible, my bloods will be checked every day over weekend but even if they climb back up quickly, I won’t be able to go home until I see the doc when he comes back on Monday. My husband has bought me The Times, Grazia magazine, Haribo, and a big bar of Galaxy. He knows how to cheer me up. I’m making the most of having to get some weight back on. I had mushroom soup and chicken sandwiches at teatime. The soup was so yummy.

Just waiting for John the lovely staff nurse to come and check out a couple of little boils that have erupted on my bum. #nodignityleft

Night night all. Sweet dreams. X

Implausible
Member

Re: February 2019 chemo starters

Sandra I've only been doing the teaspoon in the morning before brekkie, as that's what it said in the leaflet it came with.....  it tastes lovely so even if it's not doing much for me, it's no chore 🙂  

 

But I'm glad my sister paid for it not me!  At the rate I'm getting through it, though, I haven't got enough to cover my entire chemo treatment... so if all is going well with my blood cells and general health by the time I run out, I will probably re stock on my own dime....because if things are going well I won't want to change my routine!

Edinbird
Member

Re: February 2019 chemo starters

I won’t be up all night don’t worry!! 😂 I’m just watching the football (my team Norwich just scored an amazing goal! 🤩) and then bedtime. He’s gonna Netflix marathon he says so gonna let him chill 😊

 

Hope everyone else has a good night xx

sandraindurham
Member

Re: February 2019 chemo starters

Hi Sarah, based in what I have been reading (like, more than 200 research papers) lifemel can be more reliable than chemo. The price is horrendous, almost £40 each tiny jar, but several people that have been on a trial (coping with several types of cancer) noticed a huge difference with and without. As one father stated, what is the price of seeing a son walking when he had been completely impaired due to cancer.

Now, it has to be taken twice a day, a teaspoon of the stuff, slowly melting in the mouth, the first early in the morning, no food taken before, the 2nd in the evening.

Sarah, research is an infant still, in so many situations, including cancer treatments. We do not know how this hell shows up, so I am just looking into people's experiences.

And believe me, £40 a pop is hurting our depleted finances... but what if?

Susie B
Member

Re: February 2019 chemo starters

Hi Nettienoo

Yep, taste buds definitely go down the pan for the first few days after chemo. It some cases a it seems to be an advantage. Take care. Get well soon☺  

Implausible
Member

Re: February 2019 chemo starters

gorgeous doggos!!

weirdly my cat is more cuddly with me than she ever was - but I think that's just because I've been at home full time for weeks, whereas she didn't used to see much of me.

as for work - contract wise 2 months per year is all I get, but in the past under the old (nice!) owners it was at their discretion, the company was like a family then.  Now it has been sold (just 3 weeks ago, while I was off) to a big global parent corporation who basically don't know any of us and don't give a stuff....  so there's not much I can do.  Still annoying though.  

I won't starve, I have savings enough to cover those 12 days, it's more the principle of it.  And it certainly means I'll think twice once I'm all better sometime in the future and there's a big client emergency on and they want me to work late or over the weekend, with no overtime, which I used to do regularly!  Loyalty - or lack of - goes both ways.....  I'll claw those 12 days back somehow 😉

 

Edinbird?  you get some sleep tonight young lady!  no staying up all hours calling your friend 🙂

Nettie I'm glad you are feeling better in yourself, but what a pain that you are stuck there till Monday, is there nobody who can check your bloods over the weekend? 

Sandra  - funny you should mention that lifemel honey.  My sister has bought me 3 pots.  Bloody expensive - like £30 a pot and they are tiny.  Reading up on it I thought "what a pile of bull" - I'm really not much of one for alternative medicine and stuff like that (sorry Rosina!! :D) - but I figured it could do no harm to have a teaspoon of honey every morning.  I guess the test of it will be on Monday when I go for my blood test before next chemo on Tuesday (hopefully).  If my neutro-wotsits and white blood cells are all super healthy, then maaaaaaybe there is something in it?  But it's a lot of money to spend on a maybe.....

 

I'm just home from Captain Marvel - I'm delighted that Disney timed it to come out in my "healthy week", as I wouldn't have wanted to sit in a cinema full of the germy public in my low immunity week!  It was really good!

 

Sarah

 

 

Rosina
Member

Re: February 2019 chemo starters

She is brilliant

heard her on Woman’s Hour.

 

daisydi
Member

Re: February 2019 chemo starters

Marilyn my dogs dont like me very much either at the moment except when we are out for a walk.  I think I must smell of chemo poison and they dont like it!

daisydi
Member

Re: February 2019 chemo starters

Gosh Nettienoo.  You too!! So sorry that this has happened to you and MBJ.  Makes me more scared for the next one now.  I think I have got off very lightly with my irritated bladder, nausea and headaches.  Hate the thought of what this stuff is doing to our bodies but I have to concentrate on the fact that there could have been one rogue cell allowed to break away from my tumour causing havoc with the rest of the body.  Just want this all over now but have only just started...Hope all you ladies are ok.  What a flippin rotten journey some of you are having xx

sandraindurham
Member

Re: February 2019 chemo starters

Nettienoo, almost ended up crying when I read this.

I am so, so sorry! I know how you feel regarding your babies!

I am sure you will feel better soon and your levels will improve.

Have you tried lifemel honey?

Sending good wishes your way honey! 

MBJ
Member

Re: February 2019 chemo starters

Hi Nettienoo

So sorry you have gone through this too it's a horrible experience. I am glad you are being looked after, and not in a store room. I hope my decision regarding chemo won't affect your decision when you speak to your oncologist. Listening to you and others about reduced doses makes me feel I need to keep an open mind for my appointment on Monday. But of course I am feeling better now and need to remember how sick I was.

Edinbird
Member

Re: February 2019 chemo starters

So cute doggies! 😍

 

My friend has three dogs two cats and an African Grey parrot! I always feel bad telling them not to jump on me when I’d love a cuddle but don’t want bruises!

 

My bloods came back good already so all set for Monday afternoon 💪🏻

Marlyn
Member

Re: February 2019 chemo starters

Nettienoo I am in love!!!! My Rubi is in doggy day care until tomorrow, I miss her even though she's not very keen on me while I'm having chemo...I have to beg cuddles and that's not like her at all....

xxxxx

Edinbird
Member

Re: February 2019 chemo starters

I was annoyed I have to work full time and emailed the local Macmillan to ask about reduced hours but they’ve not replied 😞 tbh it’s working for me at the moment and work are being good so I can work from home so I shouldn’t grumble. I feel so fortunate I have 26 weeks full and 26 weeks half pay because my police service in England was added onto my service here (although I’ll be up to 5 years service here in August anyway so full entitlement). I’m just so anxious not knowing what’s next going chemo first so I just want to hold onto my full pay leave as long as possible when I might have all sorts of surgery and radiotherapy ahead.

 

All that service and to be given so little sick pay is dreadful. You cannot be discriminated against with cancer so hold the 2 years sick woman up as an example. But your contract might be the kicker. I hope they can make allowances xx

Nettienoo
Member

Re: February 2019 chemo starters

Marlyn, I’m here until my counts rise. Keeping everything crossed that when the consultant back in on Monday there will have been Improvement. I’m really missing these two. X

7AEF983C-8E6D-4ED9-B2FB-3AB81C65A80F.jpeg

 

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Rosina
Member

Re: February 2019 chemo starters

-work-and-cancer.aspx

Navigating the Macmillan website.

Documents can be downloaded.

Rosina
Member

Re: February 2019 chemo starters

Nettinoo,

This is exactly what I was thinking httpsorganising/work-and-cancer/if-youre-a-carer/your-rights-as-a-carer.html

Implausible call Macmillan.

 I am sure they can help.

Rosina

Nettienoo
Member

Re: February 2019 chemo starters

Implausible, the way your workplace is treating you is shocking. Could Macmillan helpline give you some advice maybe? X

Nettienoo
Member

Re: February 2019 chemo starters

 
Marlyn
Member

Re: February 2019 chemo starters

 Nettienoo 

glad you seem a little more with it...you still hope to be out Monday? I automatically thought records were linked through an NHS database...well how blimmin silly! Will join you on your campaign..

 

defo worth asking onco onco about reducing the dose, I felt exactly the same when I ended up in hospital after first go, never again....no way no how cowboy!

But It was my onco who said right away he will reduce dose...so I'm now on 79 percent of each f e c .....he also said there was a little wriggle room for the next one if needed....and so far so good, other than feeling wiped out I can at least function on some level...

keep trucking girl, your doing well....xxxxx

Marlyn
Member

Re: February 2019 chemo starters

 Nettienoo 

glad you seem a little more with it...you still hope to be out Monday? I automatically thought records were linked through an NHS database...well how blimmin silly! Will join you on your campaign..

 

defo worth asking onco onco about reducing the dose, I felt exactly the same when I ended up in hospital after first go, never again....no way no how cowboy! But It was my onco who said right away he will reduce dose...so I'm now on 79 percent of each f e c .....he also said there was a little wriggle room for the next one if needed....and so far so good, other than feeling wiped out I can at least function on some level...

keep trucking girl, your doing well....xxxxx

Nettienoo
Member

Re: February 2019 chemo starters

Implausible, no cupboard thank god. Poor MBJ. I did spend the first few hours in a bay on another ward full of people coughing etc until someone realised I needed a side room. 😷 x

Rosina
Member

Re: February 2019 chemo starters

Hi Nettinoo, 

yes a campaign.

I am posting my sickness note in hard copy after collecting it from my GP. 

I also take a photo of it and send it to my business manager attached to an email ( just in case).

 Hope you feel better soon.

Implausible, how does one person get that much sick leave and you are fighting for 12 days. Ask questions, fight it.  Good luck,

Rosina

Implausible
Member

Re: February 2019 chemo starters

Ah no Nettie!  So sorry to hear you are in the hospital:(  I did wonder where you had got to.

 

Sounds like you are being well looked after though.  No cupboard!  So hopefully you will be loads better and home very soon x

 

I had my meeting at work, I made my request to get paid on my "off" weeks..... it totals 3 days x 4 occasions = 12 days pay in total.  And they still said probably not. (Not definitely not yet.... we'll see). 11 years of my life I've given them and they are arguing over 12 days pay?   This is after they paid a different woman for 2 years when she went off sick.  And she never even came back!  Harrumph.

Edinbird
Member

Re: February 2019 chemo starters

Nope not me! I’ve had the aloe juice ones you get in the chilled section in the supermarket before but not anything you make up

 

i am doing manuka honey...

Nettienoo
Member

Re: February 2019 chemo starters

Awwwww! Thanks for your kind words everyone. Edinbird, sore throats are horrendous especially with other stuff going on to deal with, I hope it improves soon.

Marlyn, Poor love, I’m hoping for a better day for you tomorrow. Susie B 😘 thank you. KitKat18 a big thank you you have given me hope. I’d got to the stage like MBJ where I was thinking I’d not continue and take my chances as I thought it would be like this everytime. I will discuss with oncologist about dropping amount next time. It’s been a bit difficult because I was taken to my local A&E which is a different group of hospitals. The hospital where I have chemo is not too far away but classed as a different area so no access to each other’s records? Surely it wouldn’t be too difficult to install the technology and much safer for all NHS hospitals to access each other’s records.(Mmmmm might start a campaign for that when I’m well again. 😁). My husband ended up calling the oncologist and she kindly faxed over the info (yes faxes still exist🤨.Before I sign off an afternoon nap, I’ll end with a chemo positive...... because of low potassium I was given this fizzing med and told “ sorry, it’s bitter, absolutely vile, hold your nose and down some orange juice straight after to take taste away”. Took a swig with some trepidation and.............couldn’t taste a thing. 😂😂 The staff nurse couldn’t believe downed rest of it in one and smiled at the end. 🙌🏻 X

Rosina
Member

Re: February 2019 chemo starters

Hi Marlyn,

no it wasn’t me. 

I think it was Edinbird. 

Rosina

Marlyn
Member

Re: February 2019 chemo starters

Rosina. Was it you taking the aloe Vera juice? My lovely mum in law has just bought me some after I mentioned seeing it on this forum. Do you mix yours with water or on the spoon neat? Xxxx

Kitkat18
Member

Re: February 2019 chemo starters

Hi Nettienoo, sorry that you have been so unwell this week and glad that you are now improving. It also happened to me on day 10 of my 1st chemo with neuts of 0.03. I just wanted to reassure you my next doses were reduced by 20% and I coped much better without any further admissions - at least so far, 6 down 2 to go. Sending hugs

Marlyn
Member

Re: February 2019 chemo starters

Oh nettienoo, I am so sorry to read your post! Sounds like they are treating you well...

i had second cycle yesterday and have been in bed since I got home.....

take care lovely xxxxx

Susie B
Member

Re: February 2019 chemo starters

Hi Nettienoo

Sorry to hear you're in hospital🏥, especially after your 1st chemo session. Hopefully they'll establish why everything dropped so low and sort  it for your next session. It seems as though you're being well cared for and the right protocols are in place. Get well soon and no apologies required. Offload as much as you want we totally get it! Take care ❤❤❤❤❤

Edinbird
Member

Re: February 2019 chemo starters

Oh Nettienoo lots of love xx makes my silly tiffs with my friend and my sore throat pale into insignificance

 

I hope you are feeling better soon xx it’s positiive that you are in the best place with a good room and getting the care you need xx

Nettienoo
Member

Re: February 2019 chemo starters

Hi my lovelies, I’ve missed you. I haven’t gone back through the posts I missed to see how you are all faring but will try to.

Not posted since Tuesday morning. Collapsed at home Tuesday so been in hospital since. Very poorly Tuesday, Wednesday but feeling a lot better today but 0.6 wbc and no neutrophils.  Being kept in a lovely side room with en-suite being barrier nursed at County Hospital, Stafford. Walking distance to my house. Here until at least Monday or until counts rise I suppose. All this on 1st chemo! I’m feeling a bit miserable and worried about picking up a bug.

Facetimed my dogs earlier and ended up in floods of tears. 

Sorry to offload on you all but you are the only people who will know how I’m feeling. 

Hopefully next post will be more positive. X

 

 

Susie B
Member

Re: February 2019 chemo starters

Slight upper back/shoulder pain. Have final injection tonight☺. Had slight lower back pain on final day last time. 

Rosina
Member

Re: February 2019 chemo starters

Morning, 

I also find that distraction ( when not unbearably un well)  works for me also.

Only problem is I can completely forget about what I should be doing .

Then again this is what ‘time out’should be about 🤪

Trevor Sorbie on Desert Island Discs

 

My current read :306E2949-C61F-4794-B41B-8967D47F521C.jpeg

 

Rosina
Member

Re: February 2019 chemo starters

Hi Marlyn, 

no pain. 

Hot water bottle ( and rest) has worked for me when I had cramps.

Rosina x

Edinbird
Member

Re: February 2019 chemo starters

Thanks Ally you too xx

 

Having tea juice and avocado on toast to prepare 💪🏻

 

It’s International Women’s Day today - I think we fit the bill as I’ve seen England Scotland Wales France and Canada on here so far! 💜

Marlyn
Member

Re: February 2019 chemo starters

Good to know it's not just me then.....is anyone else having lower back pain and thigh pain? Xx

Ally2019
Member

Re: February 2019 chemo starters

Good morning all 😊

Edinbird, I’m glad all is sorted with your best mate today. Good luck with your bloods this morning, I’m also going to get my bloods done for Monday xx 

Rosina
Member

Re: February 2019 chemo starters

Morning Implausible,

it was a fab cup of strong coffee with soya milk for breakfast. Together with a homemade guacamole and sprouted mung  bean sandwich ( using 2 slices of toasted champion seeds and grain bread from M&S , not had this loaf before but it got the thumbs up from me and the kids).

 I am ginger tea-d out but it does work.

🤗

Rosina
Member

Re: February 2019 chemo starters

Hi Edinbird,

chatting to anyone at 3 am ( for an hour) would finish me off.

Rosina

Rosina
Member

Re: February 2019 chemo starters

Morning Marlyn

you are not a light weight.

I had ‘cotton wool ‘ head after my dose yesterday.  Light nausea ( but managed without any meds, just ginger tea).

 If you don’t look after yourself now then when ???? My friend who sat with me is a colleague from work (school) I love hearing about the positives but not about the stressy stuff - even hearing about it was tiring.

Hugs,

Rosina

DiKat
Member

Re: February 2019 chemo starters

Hi Marlyn

You’re definitely not a lightweight, drugs just affect us all in different ways. It took 4 hours before I felt spaced out with first FEC but with 2&3 it was before I left the unit...and they were reduced doses. It’s just so unpredictable. I definitely said F off to Fec. Hopefully things will be easier for you this time round xx

Edinbird
Member

Re: February 2019 chemo starters

Thanks Marlyn xx it’s all ok now the 3am chat was v productive and things are a lot better. We always go through these ups and downs because we tell each other everything no wonder it gets too much sometimes! Definitely going to give him some space over the weekend.

 

I have bloods at 10.10 then work for a couple more hours then I’ve taken the afternoon off! 🙂 no more work til at least the end of next week. I like my work but it’s hard being away from the office - I think it would be hard being in the office too though my job is very busy sometimes. Hope to pop in on Monday before my treatment as the hospital is on the next street!

Marlyn
Member

Re: February 2019 chemo starters

Edinbird,

i have a friend going through chemotherapy, she is a week ahead, and she's hardcore, she has chemo on the fri morning then is in work in the afternoon! She works in an office in school...then has the weekend off, then back to work as normal on Monday....she even went in on her low immune days...I am in total awe of her, my first cycle I ended up in hospital, and yesterday after second I just about managed to crawl in bed! I must be a total light weight!!

 

i have everything crossed you bloods behave themselves, you don't want to delay this ordeal any more than you have to...

 

so so sorry about your friend, he shouldn't go repeating private personal conversations, that's how trouble brews, I have a friend who I need to be very careful with...let's just say she is a delicate flower, and very easily upset...so for now...I have distanced myself as I need to worry about me and not worry about hurting her...I too have a dark humour and I thank god for it as it's seeing me through a vile time..I think a wee bit of space is a good...xxxxxx

Edinbird
Member

Re: February 2019 chemo starters

When you end up chatting to your best friend for an hour at 3am in the morning... 😊 thank goodness I’m not suffering the side effects too much just now! I can handle tiredness when it comes with making up

 

Just need to get up in time to drink some water before my blood test otherwise that’s gonna be nasty 😝

riversidedawn
Member

Re: February 2019 chemo starters

Implausible - how long have you been off? You should be able to get statutory sick pay for every treatment week. Once you've had some time off each period of absence is linked so you don't have to build up waiting days etc you will get paid for the week. I know it's not much but better than nothing. 

Ally2019
Member

Re: February 2019 chemo starters

Hi Implausible, 

 

I understand, I really hope you get the days that you would like x 

Edinbird
Member

Re: February 2019 chemo starters

I’m not very empathetic and I’ve been saying things that others affected by cancer might not find funny. Never thought he’d repeat what I said or take it seriously! But he did and his friends and family now think I’m dreadful and he’s taking that to heart.

 

Its not just me it’s a lot of things but we always go through cycles of getting on great and falling out. We are very different and sometimes that’s a real issue.

 

So since diagnosis I’ve had one day sick when I got a headache after having my eyebrows tattooed and then seven days after cycle one. I only intend to take three or four if I can this time as I really didn’t need a week last time but was told to take it by the oncologist. Tbh though I’ve hardly worked full time since diagnosis I’ve kinda floated about in a daze a lot and then spent far too much time at my friend’s house these last two weeks so no wonder everything blew up 😐 I need to get a balance and I’m struggling and he really does have too many issues of his own without my illness being shoved in his face constantly.