October 2020 Chemo Starters

[whiters14]

Thank you NAJ 

I am going to try the cold cap so a blanket sounds like a really good idea. 
I need to get the kindle updated and maybe download a film.

I’m nervous for Monday but just want it over with at the same time. I’m worried about feeling poorly as don’t want my boys to see it and feel scared.

x

[Allie_A]

Hi JoJo

Glad to hear you are impressed by that wig.  I have been looking at those for a while and wondering whether to get one so think I will go for it.

I am having haircut tomorrow.  Not quite sure how short yet but first hair cut since July so quite looking forward to it although may be a waste.  Finished work yesterday so enjoying a few days leisure before chemo on Monday.

[Jojo1447]

Morning

got my wig from

www.headscarvesbyciara.co.uk

its classed as a gym/ swim wig, I have to admit I am impressed I will definitely be ordering a couple more.

its scary signing the consent isn’t it especially when they explain the possible side effects feels like you’re signing your life over and have no control anymore, but once I’d signed them it was just a case of right let’s do this.

i have appointment at hairdressers this morning for one last pamper not sure if to have cut short yet or wait a couple of weeks and have that done at hospital hairdressers don’t want to stress

[Jojo1447]

Hi

wig from

www.headscarvesbyciara.co.uk/

also a good site for scarves and hats is anne

[Guest user]

Hi Whiters,

I think it depends on how long you're going to be there and if you're going for the cold cap. 
Cold cap I reckon you'll definitely need a blanket.  
I took crochet (but my hands were shaking too much to do it) and my kindle, a bottle of water and some sweets plus my phone to ring my friend to come and get me.  My chemo took two hours and the nurse sat beside me the whole time feeding drugs into me and talking about what to expect/look out for so in the end I just sat chatting.  Don't think I could have done any crochet with a cannula so next week I'm just taking my kindle, drink and sweets.

Hope it goes well for you.

NAJ

[whiters14]

Glad to hear everyone’s treatments are going well and that you all feel quite well.

I’m really starting to get nervous about starting my treatment on Monday.

Can anyone recommend what, if anything, I need to take with me? 

x

[Jo22]

Thanks Linda, that's really helpful. I've had my hair cut too just so its not such a shock. 

I'm struggling with food etc and acid reflux/indigestion but trying to keep on top of it with gaviscon. Well done for having a walk and glass of wine, sounds lovely. 🙂

[York-75]

NAJ - oh my goodness, that sounds terrifying! Thank goodness for our NHS. It is not too uncommon for us to see patients costing over 50k, often complex patients with multiple surgeries and ICU stAys. This year we submitted costs for a patient which was over 100k- it was a poor child in hospital for over 6 months. Breaks my heart to think what they must have gone through.

But at least I like in other countries we don’t have to pay ourselves. My year of Herceptin will cost around 20k. 😱

[Guest user]

Definitely an ideal opportunity to look at how the money is spent.  We are all so lucky that we don't have to worry about finding the cost of our treatment.

Three years ago I was in critical care for 10 days, had four operations and then a further 11 days on a ward when I had necrotising fasciitis (the flesh eating disease), sepsis and then pneumonia.  I dread to think how much that lot cost.  🙄

I did meet some hilarious characters while I was in there - maybe I should write a book.

The day after my first surgery, 28th December, my dad came to visit.  I had cannulas in both arms, a catheter, my leg bandaged from ankle to the top of my thigh, I was on oxygen and was attached to all kinds of monitors.  He looked at me and said 'are you sure you're not going to the pantomime on New Years Eve?'.......

NAJ

[York-75]

NAJ he he, now there’s an idea!!

More likely I have a kindle full of lovely books gifted to me by a friend, so I shall read some of those.

Also I will be quizzing all the staff about the cancer services- I work at the hospital in finance, and we use all the information from the patient records to cost the patient treatments. So the better I understand exactly what happens in a department and who does what, the better I can do my job. So I might as well take the opportunity to learn more and share it with my colleagues.

They will be sick of me asking questions! 😆

[Guest user]

Hi York-75 

Good luck for Thursday - what are you going to do for 6 hours?  Maybe you could start writing a book.  Ruth Hogan started writing when chemo kept her up all night and she's written three books now and they have all been very good.  

NAJ

[York-75]

Hi everyone,

How are all doing?

Hope you are keeping in good spirits!

I had an appointment with a chemo nurse today,  she was lovely and reassuring, and reiterated the message of call the hotline any time, it makes their job easier if we are vigilant about potential issues, and that the will always answer the phone. She struggled to get blood from me despite me drinking lots of water all morning to help. However, they use the vein in the hand/ lower forearm for chemo, and those veins look much better apparently, so I will give it a go without a PICC line. I’m one if the lucky ones with only 4 cycles, so fingers crossed veins will hold out.

I was trying to get a flu jab done beforehand, and lucked out at my local surgery getting a jab at 6pm- yay!

So I am nearly there at last - Herceptin on Thursday (followed by a 6 hour wait to check for reactions!), and Abraxane on Friday. I’ll be glad to tick the first ones off! 

[LouJP]

Morning

Just thought would pick up on the cold.

I bought a couple of little bamboo cotton sleep caps (look like something out of Upstairs Downstairs - bit like a maid) which I wore at night and also when I was losing hair, it keeps that in too rather than having it on your pillow.

I never wore my wig (she is being donated now) but had a selection of head gear I bought on Amazon - bamboo bandanas, silky scarf attire etc and of course woolly hats but i went into the hot weather (so had to use factor 50 on my head if I did go out with nothing on).

I used to colour co-ordinate my headgear with my clothing - just made it more fun for me - saved a fortune on cut and colouring.

Hope that helps.

Good luck

xx

[chesterbrownbear]

Like linflo58 I don’t feel too bad at the moment, day 9 was my turning point, so I will manic again running around doing house work, sort out the garden and hopefully do a couple of Jazzercise classes via Facebook.  I am thinking I am currently very lucky so I must be careful not to do too much.

at least I understand when I have my 2nd session on the 22nd October that the symptoms come and go 😬.

Everyone stay safe and strong, good luck xxx

[Shi]

❤️ To you all getting your wigs ❤️ it’s another step forward for you all ❤️ it is a big one to get on with and you get the one that you are comfortable with ❤️ I will admit, I had wig for treatments, coloured bobs and tinsel wigs well just because they were there and the steroids made me shop on line 😁 silk pillowcase helps scalp when you do loose your hair and beauty despite cancer did good scalp care kit ❤️ 💕💕✨✨Shi xx

[linflo58]

Hi everyone 

Just thought I would do quick post. Hope I’m not tempting fate, but I’m on day 11 post 1st chemo session, and am feeling pretty good. Tiredness is just lurking in the background, I can almost pretend it’s not there. I have shoulder length thick hair which I only usually wash once a week 😜.  I have noticed no change in it, even straightened it today. I’m just taking each day as it comes, and hopefully will feel the same until my next chemo in 11 days 🤞

Linda x

[Guest user]

Hi Strangely Upbeat

I shed a few tears over the last few weeks at the thought of losing my hair and I can only suppose that was because it's then obvious you're going through chemo.  At my age (60) I'd hardly be making a fashion statement.  By the time I got there yesterday I was in the 'sod it let's just get on with it' zone.  I do look a bit like I've returned from the gulags but it's nowhere near as bad as I feared.  The hairdresser used clippers on a No. 2 setting so now I'm just waiting for it to fall out.  Friends and family think it doesn't look too bad.  You do notice the cold though!

NAJ

[linflo58]

Jo22

I went to a local wig shop that was on the list given to me with my ‘prescription’. The lady was lovely, I only tried 3 on as she has to quarantine them for 72 hours. I decided on colour & length beforehand so it was easy to whittle it down to 3. In an ideal world I would have liked to step out of my comfort zone & try on something completely different, but I wanted to feel comfortable, so chose something very similar to my own hair. Last time my hair loss was gradual, it didn’t come out in clumps, just thinned. In the end I cut it short to be able to wear the wig comfortably. At the moment I have too much hair to fit under the wig.

I hope you start to feel better soon, I managed a nice walk again today & also a glass of red wine with dinner. 

Linda 

[Strangely upbeat]

Good for you Not a Jockey, your really have taken the bill by the horns, going shopping after having your head shaved 😀 

I am going wig shopping on Tuesday and going to talk to them about shaving my head and possibly using my hair to make a wig, I know this takes a few weeks so will get something to get me started. 

I had a dream the other night about having my head shaved and freaked out when I woke up and had my first cry since all of this started.  But then I thought do I go for a short style rather than the full shave.  What I do know is that I want to be in control and don’t want to wake up and find it on my pillow. 

Were you nervous, emotional?

This bit is really doing my head in.

Thanks for you help xx 

[Jo22]

Hi Linda,

Good to hear you are feeling well. I too feel pretty goo and I am only on day 2 so I know that could change but so far so good. The fogginess has lifted and part from some nausea all is ok. Like you my appetite is picking up which like you say is nice when you have time on your hands to cook. 

I'm going to try and work from home next week and see how it goes. I've also got a wig appointment for an NHS wig so looking forward to that in a weird way. Did they let you try them on? I had long hair but gone short just to make any loss a little easier to bear so now I'm not sure what length wig to choose! It would certainly hep to try them on. 

And yes verbal diarrhoea is a side effect ...lol 😅 xx

[Jo22]

Wow well done you! Very brave Not a jockey and rightly so, we all have to do this our own way!! Way to go girl!! xx

[Guest user]

Hi Strangely upbeat

I had my head shaved this morning.  I've been dreading it - which is odd because I am a grave disappointment to my hairdresser as I never do anything with my hair just wash it and towel it dry.  Just really lazy I suppose.  Anyway by this morning I was definitely up for it.  I figured if I was going to come out practically bald I'd try to look like I meant to so I put on jeans and an aviator jacket and some proper blingy earrings.  It was ok.  None of my hair has fallen out so far and the hairdresser said it didn't look like it was going to any time soon but I was ready for this.  He did fit me for a wig - blonde!!!  Looked pretty good but not sure if I'll wear it much.  I brazened it out and went to the supermarket in my newly baldish state and yes, people did look at me but hey, that's their problem.  I'm actually ok with this.

I'm on day 11 and feeling good.

[linflo58]

Hi everyone 

I’m on day 10 after first chemo. It seems strange that some of us had operation first & chemo second, & some have chemo first. It has been better than I thought, the tiredness/ weakness peaked on day 7, felt very drugged but a lot better now. I have had no sickness which is a blessing, and no constipation. I recommend lactulose or similar for the first few days. I’m eating like a horse! My life revolves around my next meal. Fortunately I have lots of time to prepare food, so am quite enjoying it. I did a lot of batch cooking for ‘off’ days, but that is all still in the freezer.

I got my wig on Thursday, (on the NHS), I chose something very similar to my own hair, only nicer. I have lost my hair before, it has never worried me. The wigs are really good for outdoors, & indoors you don’t really worry about it. Your friends & family accept you as you are. Mrs Quincey you look lovely. Isn’t it strange wanting chemo to start? I felt in limbo waiting, in the end I embraced the time & made the most of those days whilst I could.

Chesterbrownbear, I did the same on Thursday, took my daughter’s dog for a walk in the sunshine & felt much better. I think you just have to do what you feel you are able. Some days that may be nothing. We need to be kind to ourselves.

I’m hoping that I will feel ok between now & my next chemo on 22nd October, Not a Jockey, we’ll have to compare notes. 

I work in a school, so envisage being off for 6 months during treatment. I will hopefully be working remotely from home, to keep my brain active. 

Sorry for rambling on, is verbal diarrhoea a side effect of chemo 🤣???

Regards Linda xx

[Jojo1447]

Hi ang 3

im the same as you more of less.

i start chemo hopefully next Friday with the aim of shrinking the lump.

not sure of the drugs I am not that up on them yet

first round I know is ec 3 cylcles every 3 wks

then switch to something else 4 cycles every 3 weeks then something weekly for 12 wks.

surgery next lumpectomy they are thinking then radiotherapy, I have also been sent for gene dna will decide what to do when I get results back but I’m guessing that’s a long way down the line yet.

[Strangely upbeat]

Hi

I work in a school, it’s nice to find someone on a very similar journey.

I have been ok through everything so far but I am freaking out about loosing my hair.  It is such a big thing, how are you managing? Xx

[Shi]

❤️ A song from the greatest showman - this is me 👭👭👭 is you gang 👭👭👭 step by step you’ll get each other safely through ❤️ remember no rights or wrongs do what’s right for you to get through, always phone your rapid response teams, don’t think oh I’ll leave it an hour if you don’t feel right even with no temperature ❤️ always ring to keep safe ❤️ your teams will be glad you are being vigilant ❤️💕💕✨✨Shi xx

[Jo22]

Hi All,

Had my first EC session yesterday. I was really nervous but the nurses were amazing at just getting you sat down and getting on with it. The cold cap was really hard but mainly because it was touching part of my forehead that the alice band didn't cover so will take some extra cotton pads next week. A blanket was essential for me even though I didn't think I'd need it to begin with. Plus for this first session I really didn't need anything else. They brought us water, tea, coffee, biscuits, lunch and this was on the NHS! I barely looked at magazines or books as they are doing stuff all the time, because its your first session there is a lot to explain especially with your take home meds.

Coming home was fine but last night was awful, I struggled to sleep due to nausea and just an odd angst/ muscle pain. But I did sleep eventually and wonder if it is the steroid that does that. I think others have mentioned it in other chats.

Felt much better this morning some nausea, headache and dizziness but very manageable with the meds & paracetomol.

I have to say people have been saying oh you are brave & strong going through breast cancer treatment (and I'm not belittling those that don't have chemo) but for me this is brave, chemo is the next level.

Take care all xx

[Jo22]

Thats brilliant York-75! It looks really real!!

Jo xx

[Jo22]

Thanks good to hear about the PICC line Jojo! But rubbish about the delay.

Where did you order your wig from?

Jo xx

[York-75]

Welcome Ang3lf4ce!

Im sorry you have found yourself here, but glad that you have come to join us.

that is quite a regime, but you sound like you are doing incredibly well still working and doing day to day tasks.

Good luck with the cold cap, I have decided against it, as I think I would be more disappointed if I did it and it was not successful, than accepting baldness in the first place! I really hope it is successful for you, though! Xx

[Guest user]

Hi Ang3lf4ace,

Wow, that's quite a regime.  Sounds like you are coping well though.  I'm on Fec T - three cycles of Fec then 3 cycles of docetaxel all 21 days apart.  Radiotherapy after that.  Surgery is behind me though I must admit I was shocked to discover it was day surgery.

In some ways it all seems to happen very fast and in others the waiting is nerve wracking.

[Ang3lf4ce]

Hi, I'm also started on this crazy rollercoaster of appointments and emotions.  I attended the diagnostic clinic on 10 September, was diagnosed on 17 Sept, followed by a week of tests and chemo started on 29 Sept.  Weekly Paclitaxel and 3 weekly Carboplatin for 12 weeks.  Then EC for 4 cycles.  It's quite a regime!  Will need surgery and Radio post chemo but I guess they wait to see if the lump has shrunk and also the results of genetic testing before discussing options for surgery.  

I had a port inserted on Monday and my 2nd Paclitaxel on the same day.  So far I am feeling ok.  I'm working from home, going for a daily walk, cooking dinner etc.  

I'm trying the cold cap but have ordered a wig in case I need it in a few weeks.  

I just wanted to say hi and connect with people going through the same thing.

x

[mrsquincey]

I think Ima do the same if they ask for more Tbh. Im fed up with waiting and mentally it's just not nice x 

[York-75]

Mrsquincy you look lovely!

I hope your results come back quickly and that you get your dates soon. Waiting sucks! X

[Guest user]

I had to have a second biopsy following MRI.  I couldn't work out why they wanted to do it because I just wanted a mastectomy.  Maybe they thought I would opt for a lumpectomy. Unfortunately for me they couldn't locate it on ultrasound so they biopsied a lymph node and I was subsequently offered another (!) biopsy under MRI at Addenbrooks but I said no, I just wanted to get the op over and done with.

Good luck

[York-75]

Yay Chesterbrownbrear for feeling better!

sunshine and a faithful doggie is an excellent tonic! I did some some body balance and thought how amazing it is that doing some exercise makes you feel like you have strength and life in your body- not like a patient.. I aim to try a do a little throughout- even if I do 2 tracks!

(Watch me get floored with sickness after setting out these goals- hope I’m not too optimistic!) 😆😆

[mrsquincey]

Sigh I'm still waiting fir my start date. I had a onocolgist appointment last week signed a load of things. Had my bone scan Tuesday and I have to have another biopsy for another mass they found in the same boob 🙄🙄🙄

I have a oncologist meeting next Friday so I'm hoping I will get a start date then. Cos I just wanna get going now. 

I also had all my long long hair cut off yday. Felt a bit emotional. 

 

[Guest user]

Hi Linda,

I'm on day 10 now and I feel pretty much like you.  All the side effects have been manageable with the help of dulcolax/gaviscon/paracetamol and ibuprofen.  Having my head shaved tomorrow but horror of horrors my wig is out of stock until the end of November.  It looked so good I'm not keen to swap to something different.  Oh well....

How tired I feel has been a real surprise.  I take the dog for a short walk two or three times a day but if I do anything extra - like shopping - I'm exhausted.

Feeling good today but wishing I was in Italy where I was due to be cooking for a classic endurance motorcycle team 🙁.  Plan to spend the day looking at recipes for next season.

Hope everyone is keeping as well as they can be.  

[whiters14]

Jojo

That’s annoying I know what you meant about just wanting to get things started. I hope there isn’t too much of a delay for you.  I’m just sat at the hospital waiting to sign my consent papers which is a little scary.

Can I ask where you got your wigs from? I had my hair cut short last night which was a very different to what I’m used to but trying to plan for all eventualities.

York-75 that looks brilliant thank you for posting the picture and link. It’s hard to know where to start. 

Whiters x

[chesterbrownbear]

Hi York-75 just to let you know I feel a bit better this morning, maybe it’s because the sun is shining and I’ve just had a lovely walk with my Labrador.

good luck everyone and happy Friday 😀💪

[Jojo1447]

Hi whiters14

picc line went fine, didn’t feel a thing and they were lovely and put me right at ease.

whilst at pharmacy waiting for anti sickness drugs for tomorrow I got a call saying a pet scan had to be done before I started chemo and they could t fit me in for that until next Friday, so on hold now this week.  Annoyed cos I just want to get moving now but I know it has to be done.

my wig I ordered arrived today it’s a swim/gym wig and I prefer it to my own lol so all set x

[York-75]

I had good advice from a friend who has alopecia and has to wear wigs all the time. She said go for something similar to your own hair, then you know it will work with your clothes, glasses, make-up. 
Also since you might find it upsetting, less so if you still look more or less like yourself.

I did find it strange, but I think I can get used to this one- it will look more like me than no hair, I’m sure. 
I ordered some soft hats from annabandana as well, they were quite cheap and a good alternative. Xx

[Strangely upbeat]

That looks really good York-75, II wouldn’t know it was a wig which I guess is a good thing and will give you confidence when trying it out in the real world.

Have you gone for a look similar to your own hair or have you tried something totally different?

Love SU XX

[York-75]

I ordered from https://www.mimowigs.com/

a lovely lady in Glasgow. 

 

[York-75]

Aw Chesterbrownbear if you can’t have a moan here, where can you? I am sure we will all have a few low days- this isn’t much fun! 
I hope you will feel more positive as you get further through the first cycle, fingers crossed you will have less fatigue and other side effects then. Great that you are getting out for walks!

Strangely Upbeat, 

I have also had a wobble abou wigs and everything feeling a bit real this week.

I ordered 4, and 3 came this week. I think they are great, but it feels very strange and not quite like me. I will attempt to add a picture of the one I’m planning to keep.

[chesterbrownbear]

Hi linflo58. I feel just the same as you, great description, claggy mouth.  Must admit I do feel really low though, it’s like my mojo has been sucked out.  The infuriating thing is I don’t want to feel like this but it’s so overwhelming.

I’ve managed to go for some walks, only because my dog Bella expects her walks.  Only been a week, but what do you say when friends and neighbours say ‘how are you’, I know they are well meaning but all I can say ‘yes fine thanks’.

sorry about the moanathon, good luck to everyone xxxx

[Allie_A]

Hi all

Its comforting to read it all seems to be ok for those who have started.  I got my appointment today for 19th for the first session and 16th for the Picc line.

Booked a haircut to go short for next week.

Allie_A

[Strangely upbeat]

Hi Everyone 

Here’s a quick review of my journey so far; June found lump, July scans, biopsy, August the diagnosis, September lumpectomy, nipple and 2 sentinel nodes removed (this was the day before my 50th but I still managed to celebrate 😀. October, regraded from 2 to 3 and confirmation chemo required on 5th, on Tuesday I am booked in at the wig shop, still need to book my head shaving appt and EC chemo starts on 22nd October.

I have been ok through everything so far and taken it in my stride, I keep telling people that I can’t do anything about what’s happening and since I found the lump things have progressed quickly and I don’t want to be sad and wallow in self pity but I have have to say I am now starting to get scared, especially about losing my hair and although I am choosing to have it shaved rather than letting it fall out it is still a big thing.

I know you will all have similar fears and worries and I am glad there is a group where we can share our experiences and support each other.  #letskickcancersbutt

Thanks SU 😘

[whiters14]

Jojo

hope the picc line fitting goes well today and good luck for tomorrow.

I go back to sign the consent form tomorrow it’s all getting real now. 

everyone sounds like they are feeling quite well after their treatment I hope it’s the same for me I dread being sick 

take care everyone 

whiters x

[linflo58]

Hello

its a week now since my first chemo, the last couple of day I have really felt ‘drugged’. No other real side effects, my mouth is a bit ‘claggy’, but I can handle both of these. Was going to go for a walk yesterday but couldn’t summon up the energy or the inclination. I put my feet up instead. 😜I seem to be preparing  or eating food! I’m ravenous, which I suppose is preferable to feeling sick. 

I was advised I would be having a portacath, no discussion involved. Apaarently if your treatment goes on longer than 6 months they are the best as it is totally under the skin & less prone to infection. There are no loose wires/lines. 

Hope everyone’s day goes as it should, I’m off wig shopping. Decided against the cold cap. I’ve lost my hair once, & it grew back exactly as before. Also if I managed to keep my hair but couldn’t colour it, I would probably end up wearing a wig after all. I took pictures weekly last time, you will be surprised how much you change. My face definitely changed with the steroids. I have pictures of myself with this ‘moon face’ & very little hair, it’s hard to believe it was me. 😊

Linda x