February 2019 chemo starters

[Trixielady]

MBJ did you drink the advice fluid intake the day before? 2 litres? and day after ? I read back over forums and find out about their symptoms and advice given xx

[Rosina]

Morning all,

Sissy60 what a gorgeous puppy 🌸Lovely pics🤗

[MBJ]

Dear Trixielady thanks for getting back. That's great. We all seem to be habing different issuesso far injection ok but then I am only day 4. 

Yes I expected the fog but the headache has been horrible so need to try to minimise this if I can for next time. 

[Trixielady]

Hi MBJ 

I bearley had a headache, maybe very slight fog at times most of my head pains were due to my hair coming out and the WBC injection on my sixth day from administration of injection gave me terrible back pain but oncologist said its usual on injections 1&7 to have some degree off pain xx 

[MBJ]

Hi Trixielady

Thanks for that. I don't usually suffer with headaches I think that's why is floored me so much. Can I ask did you still have a headache in the first tree days?

[Trixielady]

Morning MBJ 

I believe that it possibly was as i was adviced against using the cold cap because i suffer from migraines both my oncologist and bc nurses said it usually courses headaches and more so if you generally get them xx

[MBJ]

Good morning girls.

Well you might have seen by my recent posts that my big symptoms since first chemo have been headache and photophobia. I did have nausea too but that was more  bearable. I am trying to see if using the COLD CAP might have been a big factor in my experience, if so I think I will stop. Could you girls reply just to say if you had a headache and how high you would put that on your list and if you cold capped on not. 

Sorry can't stop doing a bit of research even if it won't get published 😀. 

But it might help me come to a decision for next time as I don't expect an answer from the 'experts'. Thanks so much I will enclose a consent form for the research later 😂😂.

[MBJ]

Hi Trixielady

Well good luck with the fasting it's all a bit trial and error isn't it. 

Can you tell me how high you would rate a headache on your side effects please because I don't think you did the cold cap and I am trying to work out if it's worth me doing it next time as if it really contributed to my headache then IST definitely not worth it. 

[Sissy60]

It’s meant to work! Good luck it’s hard but worth it i was told. Sleep tight lovely trixielady xxx 

[Trixielady]

Well I'm fasting today before dreaded chemo number 2 on Monday, although i was sick on the Monday from what I've read it could have been a lot lot worse, so steroids and tablets on an empty stomach like before finger crossed it works xx watch this space up date Tuesday xx night night you lovelys xx

[Sissy60]

That really what we need. Feel safer now!😘

[Trixielady]

Hi SusieB

Its strange isn't ? I can't seem to do anything without checking on her to make sure your all alright incase one of you need a hug or support, watching telly check, cooking tea check, shopping, check even found myself nearly taking my phone to the loo xx

[Sissy60]

What a lovely quote! Going to keep that.

The sun was so uplifting -  and a gift for February ☀️

[Nettienoo]

Wow Sissy60, you and the puppy, what a couple of beauties. The sunshine felt so good today didn’t it? A quote comes to mind....something like “turn to face the sun and the shadows fall behind you”. Xx

[Trixielady]

Sissy60 what a lovely photo xx

[Susie B]

Hi

It's way past midnight why are we still awake and talking on line. We should  be in in bed and fast asleep by now. But hey! maybe this is the new us? God knows what else this bc is going to inflict in us. Goodnight.😴😴😴😴xx

[Trixielady]

Hi Nettienoo 

The whole experience is surreal and your right its like your watching it happen to someone else, I found the hair bit hardest losing my boobie seemed easy compared to this, my sister-in-law asked why this was harder, because its only hair , i just replied well how many people see your boob?? Everyone sees my hair, although i must admit i recorded my head shave doing it was fun but looking this morning was absolutely devastating heartbreaking for me xx Good luck 

[Sissy60]

His first ever walk today!

[Trixielady]

Oh Sissy60 and Daisydi , how i wish i could wave a magic wand and make things easier for you, it just so awful but although the idea of chemo is devastating the waiting is what plays about with the head making all the emotions and common sense leave you. The if and buts and what fors, God if we could pool all our tears and fears the water and electricity companies wouldn't need to charge we could supply from our forum alone never mind jan, dec and so on xx big hugs to all you lovely ladies, think my little trixie is coming out in sympathy xx

[Nettienoo]

Well ladies, the wig shopping trip to Birmingham was a success. The sun was out. My best friend Rachel drove us from Stafford. It felt like a proper girlie road trip. We had a walk along the canal from The Mailbox and lunch at Carluccios beforehand.

I had a bit of a wobble when I first walked in the shop as all those wigs on heads freaked me out a bit and when the skin coloured cap went on.....omg got an insight into what an awful bald person I will make. I couldn’t get those wigs on quick enough. Came away with a couple that made me feel I’d happily be seen in public so mission accomplished. All a good distraction today. It still all feels so surreal though. Like it’s happening to someone else and I’m just an observer. That will all change shortly no doubt. 

I hope you ladies who’ve had a bad day today have a better one tomorrow. I’m thinking of you. Xxx

[Sissy60]

Daisydi 

its the toughest time now ... I feel like I had a reprieve in a weird way but feel worse as I was psyched for it. No ones ever ready . But from what I see the first is the worst and then you’re on the way , not the way you’d planned or wanted but there’s an end in sight. I think it must be much harder when you’ve worked in a job dealing with patients. MBJ said that. I met a woman today and we got chatting she seemed so bright and well... ended up blurting out my sorry tale and she told me she had MS. Was so incredible about it I felt quite humbled... she has two friends with BC too. One was a fitness fanatic nutritionist! It hit her hard as she was so fit. It’s bloody everywhere. We’re not alone but this will pass. I just want to hug you!😘 You can always get a reprieve and play the bonkers card like I did! I will never be mentally ready either... or physically! Peeing red will freak me out bigtime🤦‍♀️My bits and bladder are not happy at best of times😡

Marlyn... don’t get any chillier. I hope they’ve rung you back and you all cosy and ok. You’ve had quite enough and they’d better reduce dosage for next one or we will be on our way.👊

Tried to post photo of me and puppy on his first outing today. He was awful on the lead and just sat and wouldn’t move! 

Sending big love your way. Hold on Daisydi. I do feel it with you🥰

[Ally2019]

Good evening Ocean21, 

I agree, I’m also eating what my body enjoys at the moment. I find I’m enjoying smooth foods, so I’ve been cooking a lot of lentil soups, and I will make a vegetable one tomorrow. I managed to have guacamole and tortilla chips today which was nice. Also, I’ve had ice creams to smooth my tongue. 

I decided this morning that I was going to take charge of my splurge of energy and I literally ran with it, I managed to enjoy the sun in London. 

I’ve reflected and thought that we need a new routine. 

Rosina, has kindly shared a yoga video. Which I feel (for those of us that enjoy working out) it would be very beneficial for us to get our endorphins going in the mornings to help us feel a bit better. I appreciate everyday will not be the same, but any ideas on what else we can do as a group together in the mornings to help motivate us for our day ahead? Xx 

[MBJ]

Trixielady I really need to hear this. After 3 days of feeling so crap I want to know I can do this it feels like it's the worst thing I have ever endured. Bit dramatic I know but God it's hard. Sorry girls having a tired night hopefully a brighter tomorrow awaits. 

[Implausible]

Hi everyone.

That savoury tart looks flipping lovely!

Marlyn, as you got to see the rugby I'm guessing you managed to escape being taken back into hospital, were you able to get your temp up?  Hope you are feeling ok now.

I've had a bit of a rough day, that fuzzy head you all mentioned got a bit much to the point I can barely open my eyes or stand up straight.  Feel like what I'd imagine it must feel like to be withdrawing from drugs.  Not nice!!!  But I've made it through to bedtime again so I'll count that as a win.

Couldn't go to hockey tonight, not up to it, but my other half is texting me the scores and we are currently up 5-1 so all is good.

Trixielady - I can't even bear to look in the mirror at the moment with the short haircut I hate.  So I imagine I will go full on hysterical if/when we hit bald time.  And the imminence of round 2 must be horrid when you are just starting to feel more healthy.  But once that's down you're a third of the way there.  Got to be done.  That's what I keep telling myself.  Although I did cry all over my other half this morning trying to explain that I'm only 4 days into 4.5 months and I've already had enough   and then a month of radiotherapy to look forward to after that.  It feels like such a long time doesn't it

So for everyone having a bad day today, it's at least one day closer to the finish line.

Sarah x

[Edinbird]

Should have taken a photo of it whole but it was spicy and yummy!

[Trixielady]

Evening all you lovely ladies 

I've had a real melt down today finally decided to look at my shaved head OMG can't believe how it made me feel but never mind I'm on the way back up again don't know if i took it so badly because i also knows that the 2nd chemo is larking around the corner and everything starts again!! Its been lovely this last week feeling normal but tired , eating normally xxx big hugs hang on in there week 3 is good xx

[Edinbird]

Fed up husband here too and now lost ability to post pictures and was going to show you our dinner! Doubly useless 😂

[Marlyn]

Susie.....my hubby grinning from ear to ear.....bloody good match though.....come on Wales!!!!! Lol xx

[Susie B]

Hi daisydi

Sorry you're having a melt down day☹. We all seem to get to get one on occasion, and with all that we're going through I'm not surprised. I had a bad day last Monday, unfortunately my Mother phoned me for the umpteenth time to see how I was. Thanks Mum, just remind me things aren't normal at the moment. She said something during the call and I just snapped. So, just remember, take each day as it comes, don't fight  it and remember tomorrow  is another day☺.Oh dear, now my husband is about to cry in his beer ........England have just lost against Wales in the rugby😭😭😭

[daisydi]

Hi girls just checking in. Hope you are all ok.  Im having a bit of a melt down today, just cant stop sobbing.  I am certainly not mentally ready for chemo but no doubt they will give it to me.  Hope your temperature is ok Marilyn and all you fuzzy head girls are coping.  Have so much to do in preparation but cant be bothered ....

[Kitkat18]

Sorry I just reread your post and saw that you had been warned. Keep going ladies, you are doing well xx

[Kitkat18]

Hi Ocean21, did they not warn you that the E in FEC/EC turns your wee red as soon as they dose you. It is quite normal but I was told that if it hasn't gone clear in 2 days that you are not drinking enough x

[Edinbird]

I forgot the fuzz when my aunt and uncle cane round but it’s back with a vengeance now!

No problems with my appetite whatsoever... been stuffing myself! Making a tomato and red pepper tart for dinner

[Ocean21]

Hi Ally2019

We seem to be having similar food reactions post chemo. I honest can’t face the thought of the amount of fat you need to consume for the Keto diet. I’ve decided to eat what my body tells me , just to get the calories in. At the moment oranges taste really soothing and my other half has just bought a bread maker , so I’m having slices of bread and cheese.

My appetite is rubbish at the moment mainly because of the nausea I think. I was prescribed Emend as well as metoproclamide and prednisolone if the Emend wasn’t enough.

Me being the daft ‘don’t want any more meds in my body the necessary ‘ woman that I am , got the Emend but told the pharmacist to leave out the other two. Needless to say had to go back to him today and say I need them. He’s lovely, told me this isn’t the time to decide to play Superwoman,I have take the other meds.

I also think I was getting a bit of an infection on me womanly bits down below,so I rang gp and got some antibiotic cream which has helped. I’m sure that it’s a reaction to the colouring in the chemo . I’ve always been a delicate flowe around them parts!! They’ve started me in E.C whatever that is. Straight after chemo every time I peed it was like I was  peeing Irn Bru. 

Thankfully, the colour is  getting lighter.

Been in bed most of the afternoon, just felt drained. Feel better now though .OH isn’t used to seeing me like this so going to watch the rugby with him. He bought me a Kitchen Aid mixer as a surprise present . It arrived today. I ‘ve wanted one for years , bless him. Either we haven’t had the dosh  or when we have had it had to be spent on something else. So that was a lovely pick me up.

Hope everyone is having a better day.

😘😘😘

[Rosina]

Fabulous relaxation

I just did this Yoga Nidra guided relaxation. It’s lovely. Very soothing voice to listen to.

[Marlyn]

Hi enidbird,

yes I do believe the fuzzy head is here until the end....after 2 cracking days I have had a slump today...temp very low ( 34) and a call to The helpline who gave me some good advice and will be calling me back in an hour......I hope to god I don't have another hospital visit as I don't want to miss the rugby.....other than fuzzy head, fatigue and a little shivering I feel ok...lol...listen to me! I sound a right Martyr!!! Actually I am one today....lol xxx ps.  I still love every single one of you xxxx

[MBJ]

Well written Susie B 

[Susie B]

Hi Sissy60,

OMG!  I can't believe what happened! My heart goes out to you❤❤❤❤. How do they think you can remain calm and relaxed after the way you've been treated? What do they expect you to do? Leave all your emotions at home and put on a brave face for them? I would certainly look at continuing your treatment on the NHS. I think you would need to have a word with your doctor (in our area we can ask for a call back rather than seeing a GP), and see if they can arrange a referral for you. Yes, there may be a delay before chemo starts but that is happening with BUPA anyway. It might be worth checking out your local hospital on line to help your decision. You might be pleasantly surprised, as I was to find my local hospital's Macmillan unit was in the top 10 for excellence. The other option is to see if you can have medication to help keep you calm. I was on beta blockers from soon after diagnosis until chemo day when a settled calmness finally arrived. I'll probably, reluctantly, go back on them as surgery day approaches as I have an inherent,  unfounded fear of general anaesthetic. Wonder how your BUPA unit would react to that, threaten not to operate? You've got more than enough to worry about, your treatment at hospital should NOT be one of them. I'm so angry for you. Take care and remember we're all here for you xxx

[Edinbird]

Thanks just added to my list for shops! Anxious about eating leftovers but husband needs lunches for work so this will be good

Still feeling fuzzy - maybe this is just the norm now?

[Rosina]

Happy Soup

A friend made this for me last Wednesday. It’s delicious.

Chorizo can be cooked separately and served as an optional ingredient (for those who are veggie like myself) to sprinkle on to the soup at the end like my friend did.

The sweet smoky paprika really did it for me so I had to get the recipe 🤗

[MBJ]

Hi Girls

Just eaten 2 slices of French toast with Maple syrup and a bit of sqirty cream. It was nice but did not really taste sweet? My taste buds  have gone to pot. Trying to drink more too got some straws now which are better I think than sipping. I need to get rid of this bloody headache. 

[Implausible]

Those cookies look amazing, my appetite must be coming back!

As for heritage, I feel very boring compared to you lot, I think the furthest any of my ancestors fell from me was Devon

[Seaside Sar]

Hi Rosina

Wow, you have such an interesting family background. I thought mine was a good international mix, what with my grandmother being Dutch and my Grandad coming from Poland (they are no longer with us unfortunately) but yours sounds amazing!

I too struggled to tell my parents about my diagnosis and thought at the time that my Mum took it remarkably well. Turned out it was shock as I later found out. In fact, she broke down in tears after my first operation when they found a positive lymph node. That was harder than telling her about my cancer in the first place.

You are good for giving us healthy recipes. I have been less healthy this morning as I've been making cookies with my 20 year old daughter who is home from uni. Never too old to make cookies. 😎

[Edinbird]

Worst thing was telling my sister... my family are all hundreds of miles away back in East Anglia (I’m from Norwich I’m not Scottish!) and she has a 9 month old son who was premature so already had a lot to go through recently. Been speaking to them a lot more but I feel bad that I’m not near - not that I can do anything about it! All I can do is be me and deal with what I have to. My poor husband is currently mid washing session - sheets floors cuddly toys!

[Ally2019]

Good morning ladies, 

Rosina, thank you! I have now got up, I am currently making myself porridge too 😊

[MBJ]

Hi Sissy60

Of course stay with us. I think we can post anywhere we want to but you are definitely one of us. Xx

[Rosina]

Hi Sissy 

of course you can stay in the February group it’s not like Brexit or something 🤔

[Sissy60]

Mmm nice recipe Rosina.

its on the stove smelling delicious. Thanks

please can I stay in feb group if I start in March ... as I’m attached to you all now😥 they said def not starting on Thursday now (last day of feb) and I’d got my pup in daycare, husband off work and daughter coming back from Uni on Sunday for a week so husband can go on work trip🙄

have a good weekend all... weather looking very springlike💐💐 

[Rosina]

Yes she is OK. I had her over for Christmas (normally we all go to my brother’s - he is working in Switzerland has a Portuguese wife - kids that get on very well with my 2) as my brother wanted ‘time out’ with his lot and then changed his mind by which time I had got mum over 🤞and everyone else got caught up in the drone fiasco at Gatwick. So I told my 2 teens ‘good practice run ‘ for the future it was their first time flying without an adult they made it as far as the gate and then their plane got diverted to Stansted. I was happy that I was not going anywhere.🤪

[Implausible]

I was almost relieved that this thing waited until after both my parents had passed so I didn't have to tell them.  It's a difficult thing to hear about your child.  I hope your mum is ok?