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September 2021 Chemotherapy starters

aliess
Member

Re: September 2021 Chemotherapy starters

Morning. @louby_lou69 @Somerset Bunny @veestar 

& all you other brave ladies. I just realised this morning, we are actually doing this! In the middle of all the appointments, arrangements etc we don’t stop to think how far we’ve come! We should all be super proud of that. 💪🏻 @louby_lou69  well done on the shave looking good! That scenery is gorgeous, where is that?  @Somerset Bunny @Glad you got some exercise last night 😂.
Pacli no 6 for me yesterday which is half way 🎉. Temp was up and down all week as everyone in our house also had a cold which I think I’ve been trying to fight off. With the help of yesterday’s steroids hopefully will be gone soon. These hot flushes are something else 🥵. 
I got up on Wednesday and decided to shave off the wisp. I just wanted to massage my sore head without the worry and distress of “there goes another Two handfuls” I’m  covering my head all the time now so not much point it being there. I didn’t do the fringe area though so clinging on to that. Also not feeling the wig at the moment. 
you’ll laugh but I’ve got a ruddy great crease in my forehead of which I’ve always been conscious. So I cut off some long pieces of hair and attempted to make a fringe piece. 
don’t know if it will work or last long 😂.

I did put some moisturiser on but have also been thinking about something specific so I’ll look into the moo goo, not heard of that. 
have a lovely weekend ladies 💕

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Morning ladies

@louby_lou69 looking good lovely, and that scenery looks gorgeous. I think I might have to join you in braving the shave I didn’t realise quite how irritating loosing your hair could be! Loads of mine fell out yesterday, I will admit I did find it upsetting, and like you I am finding it uncomfortable at night even when I go to bed looking like Norah in my hair net!

Is anyone putting anything on their scalp in the way of moisturiser? My sis sent me some moo goo products, their oncology pack, wondering if anyone else has tried this? I keep asking the nurses but no one gives me an answer.

No heating on here yet and I am still sleeping with the windows open! Hubster is on our sofa bed downstairs keeping away from me as he has a cold, every chemo so far one of the buggers in this household, apart from me is poorly. I have to get friendly with the anti bac and bleach and keep my distance. You would all laugh though I awoke in the early hours to discover a worrying damp patch in the bed ….thankfully nothing from me the hot water bottle I used to ease tummy ache had leaked 😂😂! Turning a king size mattress at 3am did not do my various veins (a badge of honour inherited from pregnancy) any favours! Four other people in this house and not one of them heard me! 😂😂 ah well here’s to another day in paradise, start the injections today to boast the bone marrow production whoop de do 😂😂😂 roll on next Wednesday when I’ll be drug free for a few days. Hope you all have a fab weekend. Lots of love Sue xx

 

louby_lou69
Member

Re: September 2021 Chemotherapy starters

My heating has been on a bit today.

Shaved my head on Tuesday, well,y partner and son did. There was no tears, just laughter. My head was so sore, the buzz cut has eased it but it's coming out loads now. Lying on the pillow is uncomfortable.

Chemo #2 on Tuesday. Bring it on, then I'm getting closer to the end. 6017AA10-91DC-4783-AC8A-30D03F4D78B7.jpegAE220F4C-46CF-41C9-84C9-E8D91FF2E10A.jpeg

veestar
Member

Re: September 2021 Chemotherapy starters

Hello all,

Friday night and the heating is on, I m not sure how you all feel on chemo but one minute I am hot then I am cold!🤔 

I had no side effects this week from paxil, so that was good. 

ksg123 .. I am wearing a bobble hat all day long now, apart from at work, I m not feeling the love of wanting to wear my wig yet although my hair is so fine now, but I feel like I should be off to a party or a night out in  my wig. Which sadly I m not..

aliess.. great pic of your headscarf, my hair is sooo fine now. resisting the shave, my work colleagues want me to shave it off, I bet they wouldn't if it was them😂 

x

xx

 

 

ksg123
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny I'm glad today went better for you, small victories eh? 🙂

I need to start the wig shopping soon but not sure how I'm feeling about it really. Thought it wouldn't bother me in the grand scheme of things but I think it might...In the meantime I've bought a big chunky bobble hat from M&S - at least we have the blessing of it being 'hat weather' ! lol

Take care x

ksg123
Member

Re: September 2021 Chemotherapy starters

@amy46 Thank you for reaching out. I'm pinning my hopes on the weekly Taxol being better than the EC - I've got everything crossed for that! lol 

Thank you!

Take care x

 

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@ksg123 I am on FEC-T, second one today went better than the first, I am home now and not feeling so zonked out but the weird taste is already back in my mouth 😳 I know the next few days will be playful to say the least, came back with yet more drugs, I reckon I'll rattle by Christmas and probably give Santas reindeers bells a run for the money 😂

I also had my wig fitting today and decided upon Erika, she a bit lighter and straighter than my own hair but that is probably a good thing. Told the ladies the only Erika I know of was Erika Roe the lass who bared her chest at a rugby match back in the eighties, told them that as my boobs are not very symmetrical post op that will not happen anytime soon 😂 Autistic son didn't seem to freaked out by it either which was a bonus.

 

I was in with a lady who has terminal liver cancer, only having chemo to help extend her life for fives years, I did make her giggle (I can be quite out spoken, what you see with me is what you get) especially when I was offered another one of the NHS delicious cheese sandwiches on white bread! Yuk!! Been there out of desperation once and never again!!! I had the hindsight to purchase a BLT from the hospital M and S food which made them all well jel.

Helped the chemo nurse I had was fab and was willing to chat, as some don't makes the experience a little more bearable. Anyways hoping I'll sleep well minus any hot flushes, look after yourselves all.

 

Lots of Love Sue x

 

amy46
Member

Re: September 2021 Chemotherapy starters

@ksg123  And @CT2021 

I started my chemo end of august but I sometimes post on the September thread too. I am also TN (god they should change that name!) but because they didn’t have the receptor state for her after the biopsy I had survey first. At the time I was pleased but one thing I will say is that you will at least know if chemo is working for you by doing it the other way round. I am now having 20 weeks of chemo without any clue as to whether it’s doing it’s job. I think in the long run you might be pleased although psychologically I can totally understand why it’s so hard at the moment. If you are having Paclitaxol and Carboplatin next I can also give you some hope as I really have found this very much better than I imagined. Week 9 tomorrow and I walked 7km this morning and ran 5km yesterday. If you can get through the EC I think you’ll find the next bit much better. I have the EC at the end for some reason! Just wanted to reach out and give you a bit of hope and something to feel positive about as there have been some amazing ladies on here who have done the same for me when I was feeling anxious and miserable Amy xx

ksg123
Member

Re: September 2021 Chemotherapy starters

Hello!

@CT2021 Lovely to have contact with someone on a similar journey to me! I'm managing to avoid the sniffles this far but teenagers are just as germy as the little ones I find! lol Son's had that horrible cough that's going round so he's been at arms length for sure!

I thought I was well prepared for this chemo business, positive thoughts blah de blah but as I sat there the first time and that stuff started being shoved into my arm I was suddenly overwhelmed....Rubbish isn't it?

Feeling quite sick, more so after the second treatment I think, and just playing around with which foods I can and can't eat. I always find I'm really restless after the treatment, would be happier if I felt tired and could sleep but nothing is relaxing - can't even face a cup of tea!

Are you having many side effects? I was thinking I'm quite fit, healthy etc etc it'll be a (relative) breeze but I just find myself wishing these next few months away and can't wait for it to be over! The holidays I'm planning in my head!! (not sure how I'm going to pay for them though...lol)

My lump is relatively sizeable too and hidden underneath - only found cos I often sleep on my stomach. I thought for weeks I had a lumpy mattress - didn't realise til I checked one night in bed that it was me that was lumpy!!!

You take care and try to keep positive. Reach out whenever you want or need it - I'm sure we both will xx

ksg123
Member

Re: September 2021 Chemotherapy starters

Hi There!

So lovely to get a reply, thank you for taking the time.

I hope all goes well for you today. Which treatment are you on? Sympathising and sending hugs for the coming week.. x

CT2021
Member

Re: September 2021 Chemotherapy starters

Hi ksg123

i started EC the same week and also TN. I’m ten days into second cycle and feeling sorry for myself!! Doesn’t help that have constant sniffles but unavoidable as 2 kids under ten so bringing germs from school all the time!

i need to work on my resilience and stop negative thoughts going round and round but it’s hard!! I have a large tumour and psychologically struggling with the fact doing chemo first. I understand it on level but struggle with it aswell!

love to all x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@ksg123 welcome my lovely.  I'd never written anything on a forum before either, and yes I find it good to talk to those going through the same experience, My chemo journey started just after you on the 29th September, second one today, if  it is anything like the first like you the week following I know I will not be that great, me and the recliner chair will once again become bessie mates 😂

My kids are just a bit older than yours  18, 21 and 23. They still worry and yes take the mick out of me especially now I am loosing my hair ...thank heavens for our sense of humour!

Lots of love Sue x

ksg123
Member

Re: September 2021 Chemotherapy starters

Hello there!

Sounds so similar to me. Started my EC on 22/9 but 3 weekly. Triple negative, had to have second biopsy following further indications on MRI - much of the same found.

My kids are 15 and 18 so older than yours and not quite so interested in putting stickers on my head (though I may suggest it! lol) 

By the date of your post you're into your treatment now, how are you finding it? I'm 2 sessions in, I find the first 5 days the worst. 

Would be nice to hear your experiences as we're having similar.

Take care

 

 

 

ksg123
Member

Re: September 2021 Chemotherapy starters

Hi,

That goes for me too - same regimen. Started on 22/9 this year. How are you finding it? I'm in the Triple Negative camp...

Never posted on a forum anywhere before but thought I'd give it a go as hoping it might help to chat..

x

 

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@Magenta59 glad your treatment plan is back on track. I have to have three rounds of docetaxel after my three of FEC, this drug can give you tingling/ painful hands and feet and again think they can adjust the dose downwards if it becomes an issue, says in the blurb they gave me last physical appt (all others have been via phone) this should subside though once treatment has finished, I did catch up with a lady, when I last was on a visit to x ray who had finished chemo recently, she said to mention it to the onc if it's a problem. Proud of you for braving the shave, think I will get to this point eventually. I'll be honest it's easier for my lot to discover my fallout with it being longer, and give them something else to moan about 😂, wearing chemo caps and hair nets to keep it contained atm  xxxx

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @Somerset Bunny @louby_lou69 @aliess and all you other lovely ladies!

Hope you are all having a good week despite your shedding hair! Mine was falling out everywhere so my daughter gave me a No4 last saturday. I have been shorn for over a week now, and it does make life easier! the shedding hair can now be contained by my headwear instead of ending up in my bed, on my clothes etc. I also picked up another wig today so have a choice now. And plenty of beanies!

Saw my Onc today and he has organised my new Abraxane treatment which will commence on the booked date next Wednesday 27th Oct. 5 more treatments in all, and hopefully no more allergic reactions! At least my blood counts should be okay due to not getting it last time! Have had an easy time of it really with only getting the Phesgo jab. Just a relief to know we are back on track! This drug is NAB Paclitaxel and can cause peripheral neuropathy among other things-he said if this becomes a problem, and clearly they don't want to cause us long-term damage, the dosage could be adjusted downwards so I'm not getting quite so much of the drug each time. Has anyone experienced this? Tingling and pain in hands and feet? It can get quite bad I believe! Don't want to end up incapacitated as I need to get back to work sometime and this could clearly cause a problem if it never goes away. Fingers crossed I am not going to be one of the unlucky ones! He also warned that in some cases your hair never grows back! OMG I do not want to be in wigs for ever! Lord what we have to endure!

Take care and big hugs to all. Jane.x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@aliess looking good there lovely, they sound fab and soft which makes all,the difference. I may have to pay a visit to Clarks Village and see if any are in the outlet. Yes my hair slightly red in colour, reckon it'll grow back grey though ha ha ...the stress of all this. It will be interesting to see what the wig lady comes up with tomorrow! I'll keep you posted xxxx

aliess
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny 

They do cover the whole head, you just roll and tuck at the back. It’s basically a tube of jersey. I see you’re also a redhead, I’ve had a bit of a job trying to find the right colour wig! 
you will know when the time is right. I just don’t feel I need to shave it if I can cover up. I’ll feel differently if and when the fringe goes. 

24F41991-CB8A-495D-9934-67ED310F198E.jpeg

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@aliess loving those sea salt snoods (we have an outlet store near here I wonder if they would have them?) are they quite big,would they cover a whole head (thinking eventually here) I know what you mean about not being ready for a wig, my sis told me just to shave my head this morning but can't bring myself to do that just yet..... I will know when the time is right. Also it gives my austistic son time to adjust to the new look Mum. I have donned my chemo hats today to keep the falling hair contained as finding it everywhere is driving me nuts! xx

aliess
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny  Love it! 
Last week was horrific hair loss wise, I am now bald on top (I have a gorgeous comb over 😂) but clinging onto my fringe and sides. I don’t want to shave it as it has slowed the past couple of days. So you never know I may just keep my fringe 🤞🏻 I have some snoods from sea salt https://www.seasaltcornwall.com/handyband-printed-cotton-headband they have lots to choose from and you can wear them multiple ways. They don’t do plain so I’ve made my own using kids t shirts. I wore one to bed too they’re so comfy. Not quite ready in my head for the wig yet. I also bought a fringe on a band from headscarf’s by Ciara. 
plenty of options just choose what right for you. 
💕

 

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 my maternal grandma used to wear them to, I remember a blue one worn at bedtime to protect her curls after her weekly shampoo and set ...bless her...she was fab and I miss her even though she's been gone 20 years, she lived to 98 though.

Thank you for your kind words, we've all got to remain positive and support each other 😊 I am thankful for all you lovely ladies on here, we are all in the same boat and this journey we are on can be a very lonely one, especially in covid times . My humour is helping me get through this...apologies if it's slightly warped 😂. If your head is itchy you are probably on the verge of shedding as my scalp today has been sore and I've been wanting to scratch it, but I donned a scarf to prevent myself from going there. Dreading washing it tomorrow, and cleaning the shower drain after (with gloves on don't panic!). I've been keeping what's fallen out, I've decided to give it a burial/funeral in our garden, closure for me I guess. Husband thinks I've lost the plot. Doing this as I have a suspicion (and knowing my luck) it'll grow back grey and curly like it was in my teens..my worst nightmare!! xxx

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Somerset Bunny 

My grandma and mum always used a hairnet, can't beat em. 
My second chemo is fast approaching and my scalp is a bit sensitive and itchy. I always lose loads of hair anyway so not sure if it's quite shedding yet but it's getting close (I'm on day 18 since chemo).

Ive got turbans and scarves plus Wilma my wig ready. My partner is ready with his clippers, he shaves his head every 10 days so he's going to do it for me.

Love your positivity and smile 

Lou x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Norah Batty eat your heart outNorah Batty eat your heart outHello Ladies, 

Well it's finally starting to happen, I am shedding more hair than my ancient rabbit used to, and he moulted like a good un (god rest his soul). The hubster and kids unbeknown to me last night had a "find the hair" competition at the dinner table 😂, so I am thanking the lord that I used to ride horses (we are talking years ago here) but had the hindsight to keep the hair nets, this is no how I looked to do the sandwiches and breakfasts this morning....very Norah (no wrinkly stockings though!).

Round 2 Wednesday and I am containing my excitement, but atleast it will be another bitching (being polite here) one down. Onc just rang me (or rather one of her minions), not that I could hear him very well (he had an accent which made it harder to understand what he said on the phone), I think he said he was prescribing mouth wash and more drugs to help with the ensuing indigestion and constipation (honestly never thought I'd be putting this on a post on the net 😂).

Wet and horrid here today in Somerset, I'm off to do some baking in a bit, so that my tribe have stuff to eat when I am feeling pants and have to rest post chemo. Hope every one has a good week.

Lots of love Sue xx

aliess
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 

well done 👏🏻 amazing job. Just keep doing what your able. I’ve walked every day this week and it has helped with fatigue. 
💕

Jill1998
Community Champion

Re: September 2021 Chemotherapy starters

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Jill1998
Community Champion

Re: September 2021 Chemotherapy starters

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louby_lou69
Member

Re: September 2021 Chemotherapy starters

 My walking challenge is going great, I've walked 54 miles so far. Will add another 5-6 miles tomorrow as walking with my friend and we are then rewarding ourselves with lunch.

I think it's going to rain quite a bit next week so must get out my waterproofs. Chemo #2 is on the 26th so my miles might slow down for a few days. 

Hope everyone has a calm and relaxing weekend 

Lou x

veestar
Member

Re: September 2021 Chemotherapy starters

Hello all,

Anyone else neutropenic? I knew I would'nt escape it for long on chemo.

Hope the Picc line flush went well, I find too that some nurses are less helpful shall we say than others!

Definatately with the taxil and carbo I feel worse side effects (every 3 weeks), i felt nauseous and more headaches. I am so bored of drinking water.

How is the 100 miles in October going? I took my ex's dog for a long walk today, I will sleep well tonight. I get so tired. Asleep by 9 pm!

Have a good friday night to you all

Verityx

paula43
Member

Re: September 2021 Chemotherapy starters

Hi All,

like you @Somerset Bunny I still have my hair, mad itchy and tender but all present. Got it cut into a bob last week from half way down my back. Hate it but it'll either grow or fall out I suppose.

5th infusion today, am on weekly Taxol plus Herceptin every 3 weeks. Side effects are ranging from nose bleeds, rash on face, neck and diarrhoea. Had to actually run home from a walk the other day, almost hopped a fence into a field to use the great outdoors, needs must and all that.

I hope everyone is doing well today, you guys are amazing and although I don't post frequently I read this thread all the time to see how you are all doing.

Much love x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Morning @Lu_B@veestar and all my other breast friends,

I still have hair but I am expecting it to start shedding after next weeks second round. I have a wig fitting beforehand and it will be interesting to see what they come up with as suggestions. My hair was nearly to my waist in length before I had it cut into a bob prior to my first chemo so I may have choices...who would think that would ever be a thing we would have to consider in life? Already told the other half if it gets itchy I may have to borrow his clippers.

@veestar hope you feeling as well as you can in the circumstances today and not so spaced out, sending a virtual hug xx I have to take Filgrastim. Injecting yourself is another joy of this that I was not expecting, husband did the first few then I had to do the rest as he was back at work. First one made me feel a bit rough and achy, to the point where I took the wonder drug (in house joke here as it gets mentioned every hospital appointment😂 ) paracetamol (I am not normally a pill popper) but there after all fine, although don't know whether that might have been responsible for my sore mouth, I am going to check with Onc next phone call (Monday) as I was on steriods 2 days prior. Walking about with a syringe in my pocket was never on my agenda either but you need to warm it up a bit as apparently injecting straight from the fridge can be more painful, like a bee sting I have been told by friends who are the other side of this shit show.

Anyways Picc line flush today...I am containing my excitement! 😂 Hoping the bitch of a nurse (large lady no humour or personality) I had last week either isn't on duty or does not put the dressing on to tight, else I might have to have a word as it's been bloody sore since she did it last week, could have rang them but tbh I could not be assed to another hour and quater round trip just to get it sorted.

Wedding anniversary tomorrow...26 years (29 together). Thank God he is in my life, hoping maybe we can get out for a coffee and cake somewhere out doors to celebrate. 

Lots of love to you all Sue xxx

 

 

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, @veestar and other ladies,

I hope your first few harder days after chemo go quickly.... they are hard. 

When my hair started shedding fast, I decided to shave it #2/3, it was better. I am now completely bold, had a trip to Barbers a couple of days ago and asked for a 0 shave as was patchy. 

Haven’t managed the final choice of wig yet, but will soon... just need to feel a bit better. 

It’s a week since my 4 EC chemo and feeling a bit better. 

Lots of love and hugs to you all, we will get through this.....

lu_b

veestar
Member

Re: September 2021 Chemotherapy starters

Evening all, 

Aplogies I m writing this after chemo and I feel totally weird and spaced out. I had taxil and carbo doses today on start of 2 nd cycle. Hair is shedding rapidly now. Headaches still come and go. I have a big santa sack of Filgrastim, is anyone else on that?

i ve read all your blogs, and trying to work out how to tag you all..

You are all an inspiration in your own way and it's good to offload week by week.

Steroids for 3 days, now the fun starts again.

Veestar.xx

 

aliess
Member

Re: September 2021 Chemotherapy starters

@Magenta59 😣  Do be careful! 
sounds like things may be coming together and hopefully by your appointment everything will be clearer. 🤞🏻
We have a week off work (I’m still going in but on my time and when I feel able) so today we’ve been to west bay, Dorset. It was lovely and not too busy. Covid is ramping up down here and a few people I know have it at the moment but I haven’t been in contact with any of them. I think I’ll just have to work from home and keep myself to myself. 
my hair is coming out in handfuls every morning and basically any time I forget and run my hand through it. I have it short anyway and it was quite thick so you never know it might just stop. Got a wig on standby but as it’s getting to woolly hat season anyway hey ho! 
💕

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hello @Somerset Bunny @aliess and all you other brave souls,

having a slightly better day after a rather worrying few days. I don't know if anyone else has experienced extensive bruising around the cannula site, but over the weekend (and bearing in mind I never actually got my Docetaxol due to the bad reaction) my forearm has come up in multicoloured bruises and felt rather achy. Looked like I had been manhandled! So a bit concerned I rang this morning for advice. had to send a load of photos by email, then they rang to tell me if it wasn't hot or swollen it would be fine,but use some brufen gel, and moisturise it. What a relief! You worry about phlebitis and chemo burn, extravasion etc.... I have another appointment with Onc next Tuesday, she thinks to sign more consent forms, so he must have got the new Abraxane chemo approved. Or maybe it is still in the pipeline, as the chemo appointment is saying only Phesgo at present. So I will be going but not sure how much I will get! maybe jst the jab? I hope it is approved in time as it just sets me back another 6 weeks otherwise, as it is my 3rd cycle on 27th Oct, but so far only 1 successful infusion. I really do need to get back to work at some point next year, and things are going very slowly with treatment. I estimate we will be in April before I get back. Originally I was hoping to be back after the New Year. Nothing is certain these days. You can't even plan a week ahead! Financially it is a nightmare!

At least SEs on Phesgo alone are mild, which is encouraging with it being longterm. Feel okay but still a bit achy. All tolerable!

@aliessyou are not the only one falling down! My numpty pony, who has no control over her own hooves managed to trip me up on the way in from the field today. I landed right on my left hip, same side I had the jab in! It feels a bit stiff now but no major damage! Good job I landed in the grass! And she just stands there looking at me, like "what you doing down there mum?" Think she was out to incapacitate me today as she nearly trod on me twice! She broke my big toe 3 years since-it was agony-and the nail is still not quite right. Don't need another incident so tomorrow I am in the steel toecaps!

@Somerset BunnyI know what it's like living in a tourist trap-York can be murder. I never go into town at the best of times as you can't move for visitors. It was super during the lockdown as the streets were deserted! Trying to shield makes life fairly uninspiring really. We did manage a couple of trips out to NT properties this year and fortunately it was fairly quiet. But not really had much return for our memberships the last 2 years! Might manage a trip to Fountains while I am feeling reasonably well, wouldn't be up to the walk back up the hill if I had got my chemo, it knocked the stuffing out of me. Breathless just going upstairs! On the subject of flu jabs, my Onc said it wouldn't do me any harm if I had it during my recovery week, but it may only be 50% effective due to the immune response being subdued. So he is ambivalent. We decided I would not bother with it, and only get the Covid booster when it is offered. Most winters I get 2 or 3 bad colds. Last Winter-NONE! Mask wearing and social distancing worked for me! So just going to continue doing the same.

I got my daughter to do a buzz cut for me on Saturday-my hair was just falling out in handfuls and my scalp felt quite sore. So much better now! Just short pieces shedding instead of 8" long strands! And it's not sore anymore! And strangely liberating. I do not have to worry about styling any more. Just pull a beanie on and go-or a wig depending on my destination. I don't need to dress up for the livery yard and no-one there will make comment as they all know my situation.

Have a good day everyone.

Jane.x

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Hi @Magenta59  and all you other ladies,

Like others have said wobble away, I have found the mental side of things harder to deal with than the physical side effects of treatment, and I hope you hear something soon, fingers crossed for tomorrow. xx

I had a bit of a melt down Sunday, started to feel trapped in my own body, felt like I was being held hostage by this blasted disease, everything you do you have to question or question someone else, it's so annoying. I like to get out and about but living in a tourist/alternative town (Glastonbury) this may not be wise, just to many people about at the moment, covid cases here are also high think we are 11th from the top in the country. 

Also had issue when I went to get my flu jab, they questioned whether I could have it , I told then it was okay as it was written as such in my notes, eventually had it, only to them discover in the depths of another information booklet that I should have left it a couple more days into my current round. I'm okay today and taking it easy so think I have got away with it. Another frustrating issue was I the inability to get hold of anyone at the hospital to check this, 20 mins hanging on the phone to get through to the ward (who take calls in the evening and at weekends) only to be told to ring again in the morning. Anyone else notice how short staffed hospitals are??? Flipping hope I don't get an infection in the future out of hours if that's the response time!! It will get mentioned next oncologist call (Monday next week).

Anyways lovelies, here's to another week in Paradise. Lots of Love Sue xx

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Hello to everyone, hope the sun is making the effort wherever you may be.

We all have our pessimistic days that’s for sure and @Magenta59 wobble away!…….you are more than entitled to feel that way after your scare last week, the thing we hold on to is the treatment plan that is set out for us and when that is disrupted for whatever reason, it takes the control away again and the waiting game takes over, hopefully the funding will be approved before too long and you can get back on track…..Sorry to hear your children are experiencing anxiety for whatever reason, it’s not a nice thing to deal with, but on the plus side it is something that medication can help with, fingers crossed they will find something that helps them get through this stressful time. My son has been on anti depressants for many years because of anxiety and panic attacks, but it’s like any illness he needs the medication to keep the symptoms under control and, touch wood, things are good with him.

I will be on letrazole for 5 or 10 years when chemo is finished, I know like anything you hear horror stories, but a friend of mine has just finished 5 years and she had no side effects to speak of, it’s like every med it’s just not knowing how it will effect us until we’re on it! 
I’m not doing anything today, usual Sunday rough day…..my daughter brings me carrot cake round on Saturday ready for my Sunday/ Monday rough days, to cheer me up…..any excuse for cake and coffee!!

Hope things ease off for you as day progresses Jane, be kind to yourself x

Take care all xx

aliess
Member

Re: September 2021 Chemotherapy starters

Hi @Magenta59 

ive not been too bad the past couple of days. But I suspect it was the steroids as this morning I’ve already had an episode. 
we’ll see how it goes. 
Jane I’m not surprised your family are feeling so anxious along with you. Hope you hear by Tuesday so you know where you are with everything. Do let us know! 
im not sure which hormone therapy I’ll be on now. It was going to be anastrazole but that was before the HER2 diagnosis. I hope it won’t have changed as it’s a little milder I believe. It is strange to think that we dread this treatement the most, probably because it’s so long term. I know people who have given up on it. 
have a lovely Sunday

Take  care 

💕

 

 

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi @aliess @veestar @louby_lou69 @Lu_B @Mrsmillie @amy46 @ Somersetbunny and anyone I may have missed. @aliess ooh you are having a rough time of it. I hope your fainting episodes are easing now-that sounds awful! Hope everyone else is doing okay.

A lovely day in York but I don't feel up to doing much after a really bad night's sleep. I have deputised a friend to see to the pony. My mind is just in a spin again after the mess with my chemo last week. No idea if I will get it on the due date or not, as funding for Abraxane has to be approved and how long will that take? It all worries me somewhat as all this is prolonging treatment that should have been over by Christmas. Now it will be February at the earliest and I can't get back to work in a timely fashion. Good job I have sympathetic clients or my business would have gone bust by now! Deputy Head chemo nurse told me to ring Tuesday if I haven't heard anything. One positive to take away from this is that the Phesgo injection has not caused any major side effects. A bit achy and the injection site was a bit sore, my mouth is a little tender, but so far so good. This is useful to know as i will be on this longterm after chemo finally ends. Not so sure the Letrozole I will also have to take will be so kind to me-I am hearing bad stuff about that! At least that is some time off! Someone mentioned HRT-since I stopped it back in May, the hot flushes came back with a vengeance! Some days not too bad, others terrible. I find it starts early evening and I am constantly taking my gilet on and off-maybe every 10 minutes! And getting sleep can be difficult as it can go on all night! Frankly, there is no wonder I am tired! But what can you do? Just bearing with it and hoping it doesn't get worse when Letrozole starts. I will be demented as I will need to be back at work and being exhausted is not an option! Arthritisis likely to get worse too-it all sounds a joyous experience that just has to be endured if we want to live! Cancer sucks! And it is all starting to impact negatively on my family. My daughter is her final dissertation year at Uni is anxious and stressed, despite her tutors being aware of the situation, it doesn't go away. My eldest son is now experiencing anxiety and panic attacks, partly because of what is happening with me, partly due to outside factors, and is now off work on anti-depressants! What a crock of 5hit it all is. Oh to just get this treatment finished and have some kind of clear picture of a better future in sight for all of us. Can't even think further ahead than getting chemo done at present as my outlook depends on zapping the liver mets. Just feel I am going round in ever decreasing circles and really getting nowhere fast!

Have a good day everyone, if you can. Sorry I feel rather pessimistic today. Just up and down with what has happened. having a bit of a wobble!

Take care, Jane.x

aliess
Member

Re: September 2021 Chemotherapy starters

Hi ladies 

@Lu_B @veestar @Somerset Bunny @Magenta59 @louby_lou69 

sorry If I missed anyone, not all the names come up in the list. 
not been on here much but been keeping up with you all. 
I've had quite a week. Passed out and went down hard on my face so I’ve had a thick lip all week. Went for a PICC on Monday after it happened and then to then to get thoroughly checked out and given the all clear.

I have continued to feel faint all week so mentioned it when I went in yesterday. Bloods all still fine so they think it may be blood glucose related and advised me to eat more often. 
I’ve had a bit of a nightmare trying to sort out someone to flush and change the dressing on the PICC asked if they could do it same time as chemo as it’s weekly but they said no. It only takes 2 mins! So now have to wait in for district nurses on Tuesdays. I’m still trying to work so it’s not great. I have next week off with my husband and the only days we can do anything is Monday and Wednesday (socially distanced activities like fish and chips in the car walks etc) All other days off with covid swab Tuesday bloods Thursday and chemo Friday. 
I have the same time slot every week for chemo. If you ask I’m sure they will change it for you. I was concerned about fridays as I feel I spoil the weekend for everyone who works all week, but decided to stick with it as I’ve got some sort of routine going now. 
I’ve been trying to up my exercise but with feeling feint I can’t drive and really need someone with me at the mo. We used to live in Derbyshire, love the peaks. Live in Bournemouth now so still plenty of walking options. 
My mouth was sore a couple of weeks ago but I’d had a binge on satsumas and I think they’re to acidic so gave anything like that up.

I can’t really taste sweet stuff either, think I’ve lost those taste buds. 
hair is starting to thin now so getting my snoods ready.

sorry to hear about your reaction @Magenta59 

hope they work something out for you! 
I’m also off HRT but not been missing it to much in the way of symptoms. Not sure which hormone treatment I’ll be having afterwards but not looking forward to that. 
still taking one day at a time.

we’ve come so far already and it feels like it’s going quickly. 8 more to go for me.

we can do this 💪🏻💕 

sending love to all xx

 

 

clear

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi @louby_lou69 , thanks!

good to hear about your walks in this beautiful part of the world.

If any consolation,my husband had spinal surgery for slipped disk a few years ago and when I went to see him in hospital he was finally walking ( after 6 months mainly lying down). Hope is the same for yours and he will be looking after you, lol!

I hope the echo is normal and trip to hospital not o boring....

Best, @Lu  

veestar
Member

Re: September 2021 Chemotherapy starters

I am eating loads too especially on Tuesdays on chemo days.. I m now 67 kg!!

 

 

 

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Lu_B 

You put a @ and it gives you a list of names of recent posters  and then you choose one.

My walking is a lot less than it used to be. Me and my partner used to walk most weekends 10 miles or so round the Peak District near where we live. We haven't been walking for months since his sciatica flared up worse than ever in May. 

He's got spinal surgery on the 21st just before chemo #2 so that will be an interesting week in our house.

Today I've got to go for a heart echo, they rang yesterday and offered me an appointment so it's a an hour or so at hospital this afternoon! I seem to be there every week.

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 I have found the same first few days are crap, not helped by meds I have to take for a week following treatment, they make me feel like pants, but at least we know what to expect now and can mentally prepare for it.

I am not allowed in a supermarket oncologist told me to avoid them and to basically sheild (COVID cases are high here atm) so it’s down to my other half but my lord I do miss it. Hubster rarely shops off list, thankfully my eldest son is a shopper so when he is about at weekends I get treats 😂😂😂

Jigsaws and maybe a walk on my agenda today to although my 55 year old right knee seems to have joined your hips and it’s giving me pain. Sue xx

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi , louby_lu69,

by the way, don’t know how to get you names is red here when I answer a post!LOL

I am amazed at your number of miles. I used to run 5 k a week and sometimes had a swimming session during the week. I am worried when starting again on letrozole, and already off the HRT. However I am determined to carry with some much stronger exercise challenges to boost my morale and improve my well being.

At the moment, however, not much going on. Went to swimming pool 2 weeks ago on the second week post chemo and managed only 10 or so laps, but was worth if for my wellbeing. 

All the best to you all ladies,

 

 

Somerset Bunny
Member

Re: September 2021 Chemotherapy starters

Hi @veestar ,  

Mine is three weekly and always the same day but not the same time. Must admit I asked for a schedule before it all started as I work for my self employed gas technician husband and this time of year is our businesses busiest time, it has meant he can still work (thank the lord as otherwise I do not know how we would survive financially) I also I have a son with ASD and my chemo day is his only whole day at college which means I do not have to worry about him whilst receiving treatment. Hope this helps. 

How is everyone doing? Holding up? Don’t know if I am alone in this but I have  found I am eating for England! Breast cancer survivor friend has told me it’s the steroids, the plus point to this (never thought I’d be writing anything positive about this shit show we are all enduring 😂😂😂) is that I don’t appear to be putting on weight 😃. Some foods I love though taste metallic and go on the avoid until ‘normal’ list. My mouth especially my tongue have been really sore as well so crisps and toast have been put on the back burner for a while. From memory think Tangtastics were mentioned in an earlier post did they taste the same? As I love sherbert fountains but had one yesterday and it was like eating chalk with a twig so again something else I’ll now avoid 😂😂

Enjoy your weekend ladies, much love Sue xx

 

 

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, veestar,

mine are every time on Tuesday, but either early morning or late morning. 

Mine is a short infusion and I think 11 am start is ok. I ended up arriving 30 min late last time because I thought my slot was at 9:30...

I am finding more taxing the overall number of appointments hospital or not (including to arrange extra things like dentist, Wig, prosthesis and braw fitting,extra support, etc). Also, all arrangements around all of this, ordering stuff, etc.

It has been overwhelming as I do not have family around and husband busy or not great at supporting. Have good friends though and they help a lot. I also have been working , so , maybe that also has been hard.

Anyways, at least did not have to cancel any session due to side effects and that helped.

I just finished my 4th cycle on Tuesday, feeling rough but still here...

I hope next appointment is at the same time for you. I think what we feel is the lack of control? 

Hope all goes well, xxxx

 

veestar
Member

Re: September 2021 Chemotherapy starters

Hello everyone 

great to read your posts it’s so helpful . I am week 4 next Tuesday . Quick question , do you ladies have chemo on the same time & same day each week or will they change it ? my appt times are different every week & i m finding it frustrating !😳

louby_lou69
Member

Re: September 2021 Chemotherapy starters

Day 8 after cycle 1 and feeling more or less back to normal. So it appears days 3-6 are going to be my rough days, at least I can now prepare myself mentally for that next time.

Been to do a food shop, mask and hand sanitizer used about 10 times. Then I’ve been for a walk, clocked 4 miles but my 52 yr old hips were really aching by the end. I miss my HRT and worry for the future when tamoxifen becomes it’s replacement- but, not thinking that far ahead. 
Not much happening this weekend, TV, jigsaws and reading. 

Magenta59
Member

Re: September 2021 Chemotherapy starters

hi @Mrsmillie @louby_lou69 and everyone here, feeling okay on a daywhen the side effects of the missed Docetaxel would have been hitting me. Seems like the Phesgo side effects, which were almost identical are much milder! This is good to know when I will be on it for ever and needing to get back to work! Nothing amiss at the moment so quite relieved.

Lovely morning here.Been outside tackling rust on my car doors-had the small belt sander going to get rid of the worst and treated with Kurust. Next job priming and repainting. car is getting on a bit but can't afford another and I will just run it until it dies. If it sees me through to retirement and my endowment maturing, then I will be happy. It is a great workhorse-4WD Skoda yeti-nothing stops it, brillant in ice and snow and has not failed to get me to work in atrocious winter weather and the roads I use never see a gritter! And she does 55/60mpg any day. You don't see that economy in much smaller cars!

Back to the pony thisaft and getting her eased back into a bit of more demanding work. Good for us both!

Go hold of Psychology yesterday-no explanation of the missed call! Very strange, but they have made me another appointment at least. @Mrsmillie so glad your 4th session went okay with the added pre meds-they thought they might be able to do something similar for me today with my usual chemo, but Dr Proctor is abandoning it as he must deem it too risky, even with extra precautions. Will just have to wait and see what transpires and hope the new drug is authorised in time for my next session. I also had a chocolate craving so cracked open a packet of Sticky Toffee pudding Hobnobs! Rather moreish!

Hoping everyone is having a good day.

Jane.x

Mrsmillie
Member

Re: September 2021 Chemotherapy starters

Good evening all,

Number 4 crossed off today, felt a bit nervous going after having a slight reaction last week but, with the added hydrocortisone thankfully all went to plan,…. always hungry when I get back, so today felt like a ‘chippy’ fish and chips, devoured it and enjoyed every mouthful, now feel like something sweet!

Hope you are feeling ok today @Magenta59 and managed to get a decent sleep last night after your traumatic session, let’s hope they can get you back on track as soon as, last thing you want is steps backward! Must say even after that fright you still manage to sound ‘up’, that’s a real positive….. Everyone seems to ring the landline even when you give mobile as first choice, hopefully you got to speak to psychologist in the end or at least got a definite new appointment.

@louby_lou69 weather here hasn’t been so great today, but hopefully where you are it was at least good enough to get out to walk for a while as long as you felt up to it after feeling tired yesterday.

Well, I think the galaxy choc in the fridge is calling my name, maybe just half 😂

Take care xx