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February 2021 Chemo Starters

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

If it’s any consolation my eyebrows now quite sparse and eyelashes starting to fall out too.  Nothing like adding insult to injury eh?  Nothing growing on my head yet unfortunately.

Feeling ok today after being wiped out last night post treatment.  At least your snacks sound healthy.  I have the munchies tonight - a crunchie before dinner, a snickers after, some jellybeans and now percy pig better watch out 🙈.

Well done you re work sounds pretty full on.  I’ll just stick to my one day a week to start with!

No plans for the weekend either.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Forgot! Eyebrows gone and eyelashes thinning. 🤬 Thanks Pax... not.

But, my hair's growing. I have some that are 1" long and I've a little curl in the very pale blonde 'fringe' over my right eyebrow. 👊

Nowhere else is growing. 👏

Gelbel
Member

Re: February 2021 Chemo Starters

Hello everyone

Look at us Legal Eagles! Go girls. Bah humbug to GP receptionists... though ours are very good with me and if I do get the rottweiler behaviour from them, I ask for a call back from the nurse practitioner who has on my notes I can ask for that at any time! She'll then sort anything and liaise with others.

It's our busiest time of the year at work and I'm gutted I'm not in the thick of it. My boss has brought me into the project team for a 17k people virtual event for my creativity. 2 stonking, creative ideas added to the activity pot.

Be care what you suggest - I now own both bits, which, after a bit of digging and looking at the art of the possible, have been added to the week-long agenda. Hence I did a 12 hour day yesterday and 3 before I left for the hospital today.

Like you @Kaz11, I sort of look forward to Fridays. Who'd thought it! How are you today? I felt pretty wiped out quite soon after and the salty/off milk month taste has already kicked in. Going to have a little pig out on some dates I a bit.

Then a nice sleep (til the small hours no doubt) in brand new bedding with a brand new all seasons wool duvet. Our 7.5 tog feather one was getting a bit warm and, it's that old, the feathers were starting to poke out - most uncomfortable. Can't wait!

Mind you been a busy week - went out for tea at a pub on Wednesday. It was a tad cold so we whizzed through hot beef and onion, and pork and apple sauce baguettes with piles of home made roasties and lashings of gravy. First meal out since October. 

No wonder I'm tired.

How's everyone else? @Teagold great news on your scan. Please try not to worry about EC too much. Your team will do all they can to make it as side-effect free as possible. And we're here for you. And @hopeful1974 for your op.

Right, dates call. Might wrap them in pancetta. 😋 

I hope you have nice weekends planned. Nothing planned here.

Love AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

For info the number for McMillan in relation to work rights is 0808 808 0000.  You can also look up online.  The lady from BCN said I was best to call McMillan as they have people specifically dedicated to dealing with emoloyment rights.  Having had any cancer diagnosis we are now classed as disabled so are protected under the equality act from discrimination.  Employers need to consider reasonable adjustments re returning to work so hopefully this will help me in relation to travelling which I have to do sometimes with my work.  Failure to consider reasonable adjustments is discrimination.  I would give them a call.  The lady I spoke to was so understanding and helpful.

 I know what you mean re the hair.  I pretty much wear my gym wig every day now except on my hospital days when I put my wee turban on.  Never thought I would have to wear a wig as thought the cold cap would be my miracle hair preserver but not to be.  It worked so well for someone else I know just sadly not for me.  Have thought about giving up with it several times too as still shedding. Every time I look in the mirror au naturale it makes me sad but the only thing I can do is keep trying to persevere with the cold cap and hope it encourages the growth.  Also going to order the nioxin hair products as recommended by the hospital for when it starts to come back.

Feeling better today thank you.

Take care

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

glad to hear the work plan is becoming clearer and interested to hear about the Macmillan and BCN help you’ve had as I may need to call on them at some point - my work have been great so far but I’m also getting involved now in a few projects and just need to find the right balance of what I can manage and not taking on anything where I might then let them down if I have more rough days when I move onto EC. 

I’m also keeping going with the cold cap although I feel I’m starting to look like one of those characters from Little Britain, can’t remember whether it’s Lou or Andy. Never go out now without a cap or hat, having never really been a hat person. My daughter had a friend over in the garden yesterday and I kept my cap on the whole time so as not to embarrass her! It’s good to hear that one of the benefits is regrowth further down the line as I have had moments thinking maybe no point carrying on given how much I’m still shedding. But I don’t find it too uncomfortable and last week my nurse also put a little bit of cotton between the cap and my scalp because she was worried about the cold giving me a headache and it did help with the comfort. 

Hope you’re feeling ok after treatment yesterday. I do find that even on my pax only weeks I come home feeling completely wiped out - can’t even really have a conversation with anyone - and a hot bath really helps (especially if my head is still defrosting!), but usually feel better the day after. 

tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi all

Also meant to say am persevering with the cold cap although I found it much harder yesterday.  I know it encourages hair regrowth so sticking with it at mo.  Nurse is going to try an extra layer for me next week by using the scrubs like cap the surgeons wear in theatre.  She says the cold will still get through but it may make it a bit more bearable for me.  I still have some hair at the sides and back but little on top so it hasn’t worked well for me.  However I know I will lose the last remnants if I stop so trying to keep going.  As the nurse said for me now it’s more about stimulating the follicles for the hair growing back rather than preserving hair.  Will see how it goes.

Kaz11x

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

Know exactly what you mean @Teagold I almost look forward to my Thursday treatment day too as it’s another chemo crossed off as you say and a day nearer the end of treatment.  I also feel reassured from seeing the nurses.  As one said yesterday some patients become friends and that cheered me up.

I had Pax no 3 of 9 yesterday.  Having had no effect from the Piriton in week 1 I am certainly feeling the effects of it each time now so felt completely wiped by the time I got home yesterday so it was a bath and an early night for me after my dinner.  As someone said I would have been more apprehensive on the first week of Pax and didn’t know what to expect so maybe my body more in alert mode and so didn’t react to the Piriton then but have since.  Enjoying a soak in my bath each night but finding once I am out of it and jammies on I have a massive menopausal flush as a result of the heat - can’t win!

 I spoke to the senior nurse yesterday re do’s and don’ts now things opening up a bit up here.  She told me still to avoid the shops for now which I have been doing since December. She said that I could go to a cafe and sit outside and when people are allowed into houses mid May that I can do that.  I too have been walking with various different friends individually and we have both been wearing masks each time.  Nurse said we don’t need to do that now as the covid cases have decreased so much.  Like you @Teagold much as I have been desperate for these things to happen I feel quite nervous about them now.  One of my friends was delighted re the mask thing as she said wearing it walking in the heat and with flushing was too much.  It was only for an hour at the end of the day and I felt like saying try going through everything I’ve been dealing with but that just sounds ungrateful but sometimes it annoys me I have to be honest.

 I had a red rash on my arm for over a week following covid jab 2 which was also itchy.  It was all around the vaccine site and was a bit hot too but I checked with the nurses at the hospital yesterday and they said not to worry about it.  I had no other side effects thankfully and in another week or so I will be at the 3 week point where the increased protection kicks in so that is good and will hopefully feel more confident about doing things.  
Am going to start doing one day wfh next week.  I may split it over a couple if days but have a non time specific project to work on so hoping that will help focus my mind on other things.  Will see how it goes.  Had to get it signed off by GP which was not straightforward.  Not the line itself but I was told that I couldn’t get a phone appointment to discuss it until May so had to use econsult form on their website which just happened to be “down” when I tried it.  Eventually sorted on Monday.  It was a one size fits all form which didn’t completely work for my query.  Doc then replied with a question which they told me not to answer on econsult so had to phone surgery anyway!  Stroppy receptionist then took message for doc after looking up my record.  All could have been avoided with a 5 minute telephone appointment 😡😡😡.

Also spoke to lovely ladies here at BCN and then McMillan re my work rights. McMillan sent me lots of info by email so bottom line is workplace need to accommodate adjustments to me returning to work.  Won’t change the 6 month only pay situation which I can’t do anything about but at least I am now armed with the “legals” so have the backup info if I encounter any issues though hopefully not.

Nice day here but still cold out of the sun.  Have a good day everyone and good luck with your next Pax @Gelbel 

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Happy Friday everyone! Although Friday is “treatment day” I weirdly am coming to sort of look forward to them as it’s another treatment ticked off . Today is #10/16 (assuming all goes ahead ok as no injections this week and my neutrophils always plummet when I’m off them). 

@Rainbow70 thank you for asking after my oncologist appointment. It was very reassuring - scans seem to show that the chemo is working and things are moving in the right direction. Can’t tell you how much of a boost that’s given me and made me feel stronger about taking on the rest of it, especially as I still have the dreaded EC cycle to come. 
After all the excitement of going in for scans and talking to my oncologist - which made me pretty twitchy at the end of last week and over the weekend - today I’m seeing my surgeon to discuss plans/options etc. I have to admit that I’ve been so focused on the here and now with getting through each week of chemo I feel a bit ignorant when it comes to surgery and don’t know what all the different types of reconstruction mean or pros and cons etc. In any case I know it’s likely to be a double mx for me because of the gene mutation, so I’m mostly just concerned to know about recovery times and what I will and won’t be able to do (will I even be able to put the kettle on if both sides out of action?!). 


Reading back this week’s posts and totally identify with the feeling wiped out after human contact! I’ve done four or five work meetings this week - trying to stay involved on a couple of projects - and one conversation which went on for an hour and half almost triggered me needing to lie down in a darkened room. Now that things are “opening up” again more friends have been in touch wanting to come and visit or me to go see them etc etc and as lovely as it is I don’t feel quite ready. I’ve been seeing two friends regularly for walks, who have both been amazing, and a few others have been texting very frequently which is great and beyond that I don’t know that I have the energy for more socialising. Is that pathetic? In any case I haven’t had my second covid jab yet and been told I should still be “semi shielding” as the first one doesn’t give same immunity as it normally would, so I’m using that as a bit of an excuse at the moment to stay in my little bubble. 


@hopeful1974 been thinking of you - how are you feeling about the op next week? 

Hope everyone is doing ok and making the most of the sun and extra vitamin D!

tg xxx 

 

hopeful1974
Member

Re: February 2021 Chemo Starters

Glad to hear from you, Alice. I hope you are recovering from the portacath removal op and are able to get some rest. Sending love. Siân xx

hopeful1974
Member

Re: February 2021 Chemo Starters

Linda1967, that’s great that it is better than EC for you so far. I hope it continues that way and that your body gets used to it so that you actually feel better with each week. That happened to a friend of mine with Paclitaxel, so fingers crossed!

Sian xx

Linda1967
Member

Re: February 2021 Chemo Starters

So far for me it’s better than EC. Had a bit of reaction to first taxol. Face got very red and slightly swollen but nothing major. My tummy is a bit unsettled and I am much more sleepy than is normal for me but overall ok. 12 sessions sounds like forever knowing that the side effects get more as time goes on but the sun is shining today so making the most of that. 
Thinking of and wishing you all a good day x

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

I’m a prime sufferer with being bunged up atm and I’ve been having awful indigestion too, one seems to exacerbate the other! I took lactulose two days after my last chemo as that seems to be the start of the danger zone and it worked and usually I don’t need to take any more after that ‘uncorking’ urrggghh, sorry! but then the indigestion reared it’s ugly head and ended up when nothing else worked taking some more lactulose and no more indigestion!! Hurrah! In answer to your ? Yes I’m feeling more whoozy post chemo  than usual, it could be that I’ve got an open wound from the portacath removal so my body is trying to recover from chemo and heal too, who knows?! So on the constipation front I’ll try to do the same next chemo cycle but probably somebody will have moved the goal posts by then! You have to laugh or you’d cry eh?

I hope your tea in a beer garden went well and you had a lovely time ☺️.

Alice

 

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Gelbel glad you enjoyed having your friends over and you did well lasting four hours . Probably is also down to shielding the tiredness and obviously everything else you are dealing with. Glad you had a good sleep. 
I get what you mean about feeling more woozy when bunged up . EC and pax is excreted through urine /bowels so we need to keep things moving. Not missing the red wee from EC now I’m on the pax im managing to drink more fluids.   
Good your getting checked over on Friday regarding your finger tips. How often are you having your bloods checked ? Rest up today and I hope you feel well enough for your meet up tomorrow .

@teagold I hope your oncology appointment went well on Monday , sending love . 

@hopeful1974 @so pleased you have date now for your surgery and your appetite has improved .

 

Thinking of you all 

love 🌈xx

Gelbel
Member

Re: February 2021 Chemo Starters

I'm glad that you've heard back from HR and they are being reasonable(ish). I hope the McMillan team have added advice.

Sunday was lovely, but tiring. I threw the girls out after 4 hours. I can't believe how quickly the time went. I was beginning to flag. A colleague said that she saw pals over the weekend after shielding for the best part of a year and was cream crackered too - so it might not have been wholey chemo tiredness. I slept 11 hours solid. 🦥

I did nothing yesterday as I was a teeny tiny bit whoozy. Mmm, it makes me wonder if my body thought: "Pah, you were well enough to workyou shirker" as I feel really quite whoozy today. I had a telephone check-ups and they're going to check me over on Friday as I've very mild neuropathy. My tips of my fingers feel like I've trimmed very long nails - though I've not cut them. Hubby offers me his shirt buttons to make sure I'm dexterous. 

Question - not to be read if you're eating! If you get bunged from chemo, do you find you feel more chemo fog/brained/whoozy? I ask as I have been (or not been - until mid am) this cycle and am not feeling good today. Though I picked up a bit afterwards. I could make a case for this looking back at my notes - especially  EC #2 when I was very whoozy from day 3 and didn't go properly for a good few days after the actual chemo. Nurse said could be likely - toxicity not worked its way out etc.

Be interesting to know. I'll keep on top of that in future.

If I'm feeling up for it tomorrow, a few of us are meeting for our tea in a beer garden straight after work.

I hope everyone is feeling as good as possible. 🤗

Please excuse any typos - awful time thinking how to type what I want to say!

Love AnGELa x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hope it has gone well, Linda. Please let me know as I will be on the same regime in June. Thanks, Siân xx

Rainbow70
Member

Re: February 2021 Chemo Starters

good luck @Linda1967  for starting your paclitaxel today and I hope you are feeling ok after your treatment yesterday .

take care 

🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

I feel slightly better now that I have heard from HR.  Even if all my sick leave is used up I won’t have to take annual leave for my medical appointments and the single days I work will be added onto the end of the sick leave date so to speak.  I also have my full year’s annual leave allocation to take so I could take a couple of weeks at the end which will extend the paid time off too.  That said I just spoke to a lovely lady from BCN who has pointed me in the direction of McMillan for advice re rights at this time so am on the case!

That is the same anti sick med I have too.  So glad you are feeling not too bad after the Pax. I have number 3 on Thursday.  Long may it continue for us all that we feel a bit better on this regime - touch wood.

Weather a bit better here too so have arranged walks each day with friends as it helps so much.

Take care

Kaz11x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Linda1967 

All the best for your first Paclitaxel session.

Big hugs

Kaz11x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Kaz11 I’m glad you have had a response from your email to HR , how do you feel about it ? 

 First pax done once they got cannula in after 3 attempts 🙄 never had that problem before !. Fell asleep for a bit during infusion, think it was the piriton . Only take home meds I got this time are metroclopramide no injections this time so really pleased about that.  Don’t have any nausea / dizziness like after EC so keeping 🤞🤞keeps that way . 

hope you are all managing to enjoy some of this lovely weather . Hope you are all feeling ok and good luck to those having treatment this week.

lots of love 🌈xx

Linda1967
Member

Re: February 2021 Chemo Starters

Morning all

Im also starting paclitaxel today plus herceptin. Yesterday was pertuzumab. 
Hope we all do well and able to enjoy this beautiful weather.
Take care

Linda x

 

 

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

All the best with your first Pax today.  I am sure you will find it kinder - long may that continue for us all.

I have not had to do the injections so far and have now had 2 cycles of Pax.  They said if my cells are ok each week I won’t need to inject so fingers crossed!  I thought my 2nd vaccine might have had an effect and that was my worry last week but my cells were ok.  Interestingly though I developed a red rash round the vaccine site a couple of days after the jab.  It’s still there but seems to be fading a bit now.  Was itchy too.  Only take home meds I have had so far on Pax are anti sick incase I need it and sachets of stuff to rinse my mouth with if I get ulcers.

Had another email from work today in response to my queries so if I work single days which I am looking at that will be added onto my sick leave and extend it a bit which is something.

Big hugs for you today.

Kaz11x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone 

 

so sorry @Kaz11  you have this extra pressure on you from work. Hopefully  when you ring the helpline they will be able to advise way forward . I hope you are managing Ok with the weekly treatment , I have my first paclitaxal today  so hoping and praying side effects are kinder !!  Do you still get prescribed filgrastim injections whilst on weekly ?

Sending love 🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Good morning lovely ladies

Thanks so much all of you for your tips and advice I appreciate it so so very much.  That’s the value of this forum that I have found so beneficial getting a virtual hug and advice from people experiencing all this who just get it.

 I am not a good traveller and never have been since childhood (my family used to joke that 5 miles away from home in the car and I was already feeling travel sick!).  I get similar medication to the one you mentioned for flying so can use this if need be. I have just tried to hold off using it as I am only ever prescribed a small amount.  As you say it can be addictive so they don’t want to give you much but on my more challenging days maybe I should instead of trying to be strong and deal with it all myself. 
I will also look at the number on here and speak to MacMillan re my rights as this time for us all is difficult enough without the work pressure on top.  I know it will take some time post treatment to get back on an even keel and be physically strong so that will need to be taken into account.

Thanks again ladies.  You are all superstars in my eyes and I can’t thank you enough.  Lesser mortals would have crumbled dealing with what we’ve had to and during a pandemic.

Lotsoflovenhugs

Kaz11x

Shi
Community Champion
Community Champion

Re: February 2021 Chemo Starters

Kaz, please do use the number on here and get some guidance about your rights, there is a discrimination law I think where your employers have duty of care. There may also be something that could help you financially too do discuss that, think Macmillan team can advise on that too if you want to look into it too. Hope this helps 💕💕Shi xx

hopeful1974
Member

Re: February 2021 Chemo Starters

I had Lorazepam and it worked like magic. Like a happy pill! It definitely helped with my sleep. The problem was that they didn’t want to prescribe it long term (it can be addictive and becomes less effective over time) but I was not told that at the time, so tended to use it most nights before going to sleep. Then they suddenly said they didn’t want to keep prescribing it so I was left in a pickle. That when I switched to the sleeping tablets, which work well too. They too are not meant for long term use but my surgeon has said now is not the time to wean myself off them as he wants me strong for the surgery. I just think I’ll have whatever I takes to feel rested and get a good night’s sleep and I’ll deal with the consequences later on! So, my advice with the Lorazepam is to only use it when needed if they won’t prescribe it for you long term as it is easy to get reliant on it each night. I absolutely loved it though! Xx

 

LottieLaing
Member

Re: February 2021 Chemo Starters

Dear Kaz... I’m so sorry reading the situation you are in regards work. It makes me so angry at how some folk treat others.. no understanding or compassion. I’m very lucky to be retired and don’t have the added pressure of working to worry about. 
I notice you said you feel anxious. My anxiety can get quite bad too and yesterday instead of suffering I took a tablet that the nurse gave me for these kind of days. It’s called Lorazepam and I only take half which is 0.5 mg oh my goodness I was so chilled out it was wonderful... not something I would take everyday probably but certainly when I’m really anxious, but would be good for you at nighttime to get a proper sleep maybe? I took mine yesterday at 11.am and was fine all day and night. 
Be good for any of you ladies actually if you are having an anxious day. 
Hope you have a good day/week. Xxx

Teagold
Member

Re: February 2021 Chemo Starters

@Kaz11 V sorry to hear about the HR message, as you say - last thing you need is any other stress to deal with. Really hope you can get it sorted quickly. Totally with you on treatment day feeling chilled - now that I’m used to it, feels like a safe place and the nurses are all so lovely it’s nice to be looked after and not have to think about anything else. 

@hopeful1974 thanks for the cling film tip! Currently nursing two painful burns from an overflowing syrup sponge last weekend (hot syrup might as well have been molten lava ouch!) and paranoid about getting infected. Prob too late now for cling film but I’m so clumsy - and worse at the moment - it’s only a matter of time before the next one! I’m glad your surgeon has sorted things so that you don’t have to make a special trip for the biopsy, and fingers crossed all goes ok 🤗.

Tg xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

That’s a great tip re the clingfilm will keep that in mind.  Often burn myself on the oven where the ovenglove stops and I touch one of the shelves - ouch! 
Usually use my Nutribullet for smoothies which I am going to try again soon.  Hadn’t been taking them for a while because of indigestion but may give them another try.
If I ever get through to my doc I may ask about sleeping pills as I was so used to good sleep prior to all this and so am not used to seeing the wee small hours.

Glad your appetite is back as that will help you feel stronger too.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

Kaz11, I stupidly put hot soup in my Nutribullet. I definitely don’t recommend that! I also overfilled it. It literally went all over the kitchen and it took us days to remove it. I also thought I had burned myself, but it turned out to be ok once I had out some cling film around those areas (a top tip if you burn yourself: cover in cling film and leave it on for a few hours - makes the burn not hurt at all). 

Re the hot topic of sleep, I have been taking Zopiclone sleeping tablets as I too have been too alert to sleep lately without them. My GP has highlighted that they can be a foe in the long term as you can get dependant on them, but I feel that at the moment I need to do whatever I can to feel normal and I will deal with getting back to normal sleep at some point later! My surgeon is very keen for me to be rested for my op, so I am continuing with them for now.

 

My appetite has returned with a vengeance, which is very good news for me and I am enjoying large portions of less bland foods. 

Enjoy the sunshine if you have it. Siân xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Thanks for your quick reply and I appreciate the tips re browser etc.  The GP told me before not to hesitate to call the surgery if I needed anything and now I can’t even get a telephone appointment any time soon!
Will speak to oncologist re work.  As far as I am aware 18 weeks is a fairly standard timeline for BC chemo.  That in itself is nearly 5 months never mind the time taken for surgery and radiotherapy added on top so 6 months is used up pdq.  It is policy that we only get paid for 6 months and I know this was an issue with another colleague who went through treatment however to comment on my being back at work after that time to me just shows a complete lack of understanding as you say.  I had holidays to use up from last year so actually used up annual leave pre and post op so that I wasn’t eating into my sick pay too early.  Ridiculous that I even needed to consider that.

Will keep you posted.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

@Kaz11 that's a poor show from your GP. TBH I find they don't have a clue. The practice nurse who referred me calls for a check-in every 4 weeks which is lovely. On the other hand one of the GPs told me to change my chemo day to fit in with his vaccine appointments. 🤬

Ask your Onc team for a letter or email for work. For speed, it might be worth trying a different browser for the econnect or make sure pop-ups are allowed or if you are using a mobile, change to the desktop version in the settings - the 3 vertical dots on Android.

HR need lessons in being human at times. My boss has said my 'case handler' is hopeless and hasn't the slightest concept of what chemo involves - hasn't even bothered to read the guidance provided to people managers by the company. My boss has said that the handlers boss is amazing - seems she's had BC herself.

I hope it all gets sorted easily.

Love AnGELa x 

Kaz11
Member

Re: February 2021 Chemo Starters

Afternoon everyone hope you are all having a nice Sunday so far.

@Gelbel lucky you with the sleep sounds bliss.  Think I had a spell of 4 hours last night between 2am and 6am which is the longest I have had.  My mind seems to start racing as soon as I lie down and so find it so hard to drift off.

Know what you mean @Teagold re the loss of confidence etc.  I feel that too and without a routine except on hospital days I find I am more anxious than before which doesn’t help sleep either.  Bizarrely the day I seem to be most chilled is when I go to the hospital for chemo.

On the work front my line manager called last week to say they are ok with me going back one day a week provided I get it signed off by the doc as she will need to alter my sick line. Called GP’s surgery on Friday to arrange a phone appointment to be told there are none until May and to use econsult via the practice website.  Tried and it was experiencing technical issues each time I tried 😡.  Will need to try again tomorrow but a hassle I don’t need.

Then had an email from HR at work telling me when my pay will stop in July (I only get paid for 6 months).  I know I take things to heart and am too sensitive but the message said not trying to put pressure on me but hope I will be back working by then.  My treatment is still going to go on well into June which I pointed out.  I have asked for clarification on a few points like a phased return and if that needs to start before my sick leave is up or not.  It is now a stress which I don’t need.  Sorry for the rant.  If I need to get the oncologist involved in writing a letter to say I will need to gently ease myself back in then I will.  Can’t see me being ready to be back full time by mid July somehow.  They probably don’t mean that but bottom line is I won’t get paid so I suppose at least I know how the land lies now.

@hopeful1974 am so glad the surgeon has said about doing your other procedure at the same time as your op.  Hurrah for joined up thinking!  Now going to be very careful with my nutribullet btw.

Weather wise not so nice here today so heating is back on again!

love and hugs to you all 

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

An exploding Nutribullet? Needed a photo of that @hopeful1974 

Hurrah for a sensible thought from a surgeon. 👏 

Honestly, Pax is so much easier to manage and, for me, hardly any side effects (so far). I've only had 2 and I'm finding the weekly regime is easier as I'm not counting bad, ok and good weeks and time's flying. I slept like a baby last night, sparko from 22:30 til just before 5am followed by a lovely snooze until 7. Apparently hubby ooohhed and aaahhed loudly every time he moved in the night as his arm hurts from his second vaccine jab. Didn't hear one. No doubt the day will be full of them!

Happy Sunday everyone. I hope it's just the day you want.

Love AnGELa x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Teagold, 

I think your reaction to change sounds perfectly understandable. I have found changes more difficult to cope with too. During my third cycle of EC, I was phoned up by a different hospital to tell me me that I have a ‘suspicious vacsculrity’ on my womb lining and they want to do a biopsy. That was one thing too many for me at a time when I was really struggling with weird side effects and was feeling very drowsy. Anyway, it is all sorted now thanks to my lovely surgeon who has arranged for that biopsy to be done during my mastectomy operation so that I won’t have to go in for a separate procedure. I am very impressed by his organisational skills! Whenever I have had a worry, my breast care specialist nurse has been the best one to talk to and usually sorts everything out really quickly for me. I lost my confidence in the kitchen as I had a few bad experiences with nausea and also an exploding Nutribullet! I have taken a while to get back to cooking, but I have managed a few meals this week and my confidence is coming back there. Taking baby steps with no pressure has helped.

Angela, I am impressed by your ability to pop out for lunch and see friends. I really hope I can do the same while on Pax. 

We had my sister and husband over yesterday as well as my parents. It is so good to be able to see people outdoors and feels like a little bit of normal life has returned. 

As you can tell, the more my life feels like the old normal, the better I seem to feel, although I do like the more relaxed pace of the day now with a film or two and some needlepoint! 

I hope you all have a good day. The weather is good here today so I will go for a walk and sit outside in the shade a bit I think. 

Sending love to you all xxx

Teagold
Member

Re: February 2021 Chemo Starters

Hi everyone

@CrazyCatLady so sorry to hear you’ve had such a rough time of it. How are you feeling now? Sounds v sensible to take the break from work and good that they’re being so supportive, I think you’ve done brilliantly to work up to now though I know what you mean about the distraction. I hope the next cycle is kinder and no more exorcist moments!

@hopeful1974 good news that you’ve got a date for the op and not long to wait now 🤗 

I’m feeling a bit anxious as I’ve got an appointment with my oncologist tomorrow to find out how things are going after some scans last week, then also seeing my surgeon on Friday to talk about what/when etc. Feels like quite a big week ahead and this may sound daft but I’ve got so used to my weekly routine now that any change in hospital days/appointments throws me, which is so different from how I used to be before all this when I was never fazed by a change of plan. I think I’ve lost a lot of confidence. 

It’s fab that so many of you are on the downward slope now, time really has ticked along hasn’t it. Assuming my onc doesn’t change the treatment plan I reach the halfway point next week - so I’ve a few weeks longer to finish and hope you’ll all keep posting so that I’m not Norma no-mates on the feb board all by myself!! 

Thank god for the sunnier weather - though still bloody cold. Has been nice to sit in garden but amusingly managed to burn my bald patch yesterday - oops. 

Have a nice Sunday everyone.

tg xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel @LottieLaing 

I got prescribed Omeprazole after first EC as heartburn was bad and took it after EC2 & 3.  Not taken it so far on the Paclitaxel but am careful what I am eating.  Seem to get heartburn if I eat too many fruity sweets so having to lower my intake of Percy Pigs unfortunately! 🤣

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @LottieLaing 

I was prescribed Lansoprazole for EC3 onwards - killed the indigestion I got with EC2. Hope it kills the heartburn I've got with Pax - especially as I've braved a lamb kebab and Greek salad tonight. Yes, salad! I might've managed my 5-a-day today for the first time since Easter day.

LottieLaing
Member

Re: February 2021 Chemo Starters

Angela do you have omeprazole to take for indigestion? I needed it after first EC x

Gelbel
Member

Re: February 2021 Chemo Starters

Hello everyone

I hope you are all feeling as well as possible and enjoying the wonderful weather. Sam, are you back to your 'normal' self?

I'm 👌 today. Woke up at 1am, saw 5am but then it was 7am. No feeling whatsoever in my tum so I've not taken the anti-nausea tablets. I will take an indigestion tablet later as I had awful heartburn in the night. Actually I'll  have one now as I've not eaten for hours. Don't even feel whoozy. I did have a good chemo brain incident - tried to push the toast in the marmalade jar. And sucked the spoon used to stir the coffee thinking I was drinking it! 🤦‍♀️

All my May appointments are in the afternoon. Didn't like that yesterday - felt like a condemned man waiting for the final knock on the door. My pulse and BP were off the scale. Made my veins easy to get to! Will see if I can change but it does mean me and hubby can go out for lunch beforehand. Messes up the day before bloods too as the phone check-ups are late pm. If I can't change the appointments I'll ask if she can book the bloods a week in advance.

I've set up the garden for a socially distanced visit from the girls tomorrow. No way could I last a few hours sitting in the park without a wee. 🤭 Least here its comfy chairs and I have layers to hand if it gets chilly  Everything sorted for keeping the downstairs loo as clean/germ free as possible if anyone needs to visit. For once I'm not going OTT with food - they can have a bag of Hula Hoops each and an individual wrapped madeline - found a bag hiding that needs using PDQ. 

Rather looking forward to it.

Here's wishing you all lovely things to look forward to. 🤗

Love AnGELa x

 

hopeful1974
Member

Re: February 2021 Chemo Starters

I have a portacath, which makes blood tests and infusions easier. They started running out of good veins for me in my arm after a while so it might be worth thinking about a PICC line. 

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi there K,

 

My tip would be to make sure you take all the anti-sickness meds they give you and to not be afraid to change any of them or ask for stronger ones if you need to. I changed my anti-nausea plan after the first cycle and it made such a difference. For me, the Dexamethozone was the most effective at keeping the nausea at bay, along with the Aprepitant, which I had for the first three days. I developed diarrhoea after the nausea had eased, and loperamide helped with that. If in doubt, just ask your nurses (we have a 24-hour hotline for questions like that). Rest when you need to but I also tried to at least have a little walk around the garden each day even on my hardest days. Know that the side effects will end! 

I hope that helps. Siân Xx

ktruffin
Member

Re: February 2021 Chemo Starters

@Kaz11 Udderly Smooth moisturiser is fab and can even be prescribed by some chemo units as it’s recognised as being v effective on cracked hands / feet. I had awful peeling on Docetaxel and it fixed its in two days

Top tips for tolerating EC as my FEC starts this week. Anyone got a PICC line - only 3 cycles so not sure if it’s worth it 

k

Kaz11
Member

Re: February 2021 Chemo Starters

Morning @hopeful1974 

So glad you now have your date for surgery that is another huge step in the right direction and it’s not too long to wait now.

Also great that your work is being so understanding and have given you the year off which is great.  I don’t have kids so don’t have that added pressure but sounds as though you have your hands full.

Sending hugs

Kaz11 x

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady I hope you are feeling better now after what sounds like quite an ordeal! I am glad that they may lower your doses for next time as I imagine it is important for you to be able to eat and drink. It is their job to manage these side-effects for us after all. My work has given me the whole year off which is just as well as I don’t think I would have had many days when I felt up to working. I have only felt better for the last couple of weeks in terms of being able to concentrate on a book or some needlepoint! I think working would have been one step too far for me. I’m not sure what I will do long-term work-wise, but I definitely don’t want to work the four days a week I was doing, as it was too much even pre my diagnosis combined with looking after our children. So I will see. I don’t have to decide yet anyway.

@Kaz11, glad to hear you have been able to organise your one day a week at work. It sounds like Paclitaxel is much better tolerated in general than the EC was. I think I will ask for the weekly one if given the choice as I like getting into a routine. 

@Gelbel I am glad to hear that you are having an easy time on the Paclitaxel too. All very encouraging! I will have Trastuzumab and Pertuzumab as well, but the nurses say that I should not have much problem with them. 

My surgery is on 26/04. I am pleased that it will be done so soon and I will then have 6-8 weeks to recuperate. Then, 9 to 12 weeks of a taxane (hopefully Paclitaxel) with the immunotherapy (Trastuzumab and Pertuzumab) once every three weeks. After that it will be just the T and P on their own until the end of the year.

 

It seems like a long road ahead, but in terms of the chemo, it is good to know that I only have 9-12 weeks more. 

Sending love and hugs to you all for a good day. 😊 😘 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

Sitting in bed reading through today’s posts after being at the hospital today for my second of 9 paclitaxel sessions.

@CrazyCatLadywhat a horrific time you have had you poor thing. Sounds absolutely awful and frightening.  Quite right re the work situation for the last 3 cycles as you must be exhausted.  Sending you massive hugs and hope you feel better soon.  Sounds like you could give some serious thought to packing your job in anyway.  Your health is more important than anything.  I too am suffering from chemo brain at times in that I go to do something and then 2 seconds later have forgotten what it was.  Looked on Facebook earlier and saw some handcream advertised that was produced by nurses so thought I would check the price on amazon.  However by the time I clicked on amazon I’d forgotten what I was going to look up 🙈.

@Gelbel like you I was much better after the first week of Pax as opposed to EC.  Felt slightly tired a couple of days but not so much that I had to lie down so better physically.  Don’t know if it will be the same each week or if the cumulative build up will have a different effect each week.  I noticed today in my cancer book that I got the same dose as last week.  Was relieved that my bloods were ok today and I could still get the treatment as I was worried that covid vaccine number 2 which I had on Tuesday may affect my cells.  Ended up getting the jab a week early as my GP’s surgery had cancellations and spare vaccine which needed to be used. It will be 3 weeks before I am “covered” with both doses.

 I checked with the nurses re what I am allowed to do/not to do when things open up here.  They usually say it’s what I am comfortable with but have said it would be ok to go into a cafe as long as it’s outside.  Hopefully the weather will be warmer by then as temperatures currently in the minus range overnight.

I tolerated the cold cap again today. The nurse told me that my hair is not too bad at the back but of course I can’t see that.  Looks awful at the front/crown and have bald patches above my ears now.  However I know if I stop the cold cap the rest of my hair will fall out and not sure if I’m ready for that further psychological blow at the moment.  Will just decide on the cold cap week by week.  No sign of anything growing back yet for me.  Only washing it once a week as advised by the nurses but it certainly isn’t greasy anymore.  I could have really washed my hair every day in normal times as I had an oily scalp.  By day 2 my hair was always a riot and I needed to use dry shampoo if it wasn’t being washed.  Skin was also oily in T zone but not now.

 I too now have 7 weeks of chemo left (49 days and counting) provided my bloods stay ok.  I know I have radiotherapy to come, portacath removal and bone strengthening drug to come at some point (apparently I need to get a dental check first) but have always viewed the chemo as the worst part.

Spoke to line manager yesterday so work ok with me doing one day a week.  I just need to get it agreed by GP and sick line amended accordingly so that will be tomorrow’s job.

Anyway going to try to get some sleep (always a challenge though piriton seemed to have more of an effect today) as am now gubbed.

Take care everyone and good luck for tomorrow’s Pax @Gelbel 

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady / Sam Lovely to hear from you.

OMG you don't do things by half. Your Exorcist hospital trip sounded horrendous. If it gets people noticing that dosages of stuff need adjusting then hurrah!

That's also good news about work and you don't have to worry given you do have severe reactions. Funnily enough, I got a copy of the letter sent to my GP re my last doctor-led check-up. He mentioned that while on EC "she did struggle significantly with what sounds like chemo fog for several days and this was quite severe for 24 hours."

Loving Pax - if there's such a thing! Apart from being a bit iffy on Monday it's been my EC late week 2 into week 3 feeling.

Your hair! So with you. I raise you 1" of fluff but not all over - say 1 hair for every 3 sq mm! I love it when it dries after a wash (it flutters in any slight breeze) and when I take a wig or a beanie off and it slowly rises up from being flat. 🤣🤣🤣

I got my bloods done this afternoon to save hanging around tomorrow ahead of chemo. Nurse called for another check-up, I missed her call. So she called the house phone and had a natter with hubby.

Hope your Pax went well today @Kaz11 🤞

Love to everyone. 🤗
See you on the other side...

AnGELa x

 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hello everyone...sorry not been on for a while and you've all been busy keeping the forum updated so had a lot of catching up to do!

Hope you are all doing as well as you can and if on the Pax, hope you're coping OK with the weekly regime. And for those who've had some rough days, hope you are all now feeling much better.  And glad to hear everything sorted now for you @Leftygurl - so good to see you were finally able to go home.

@Gelbel you did make me laugh ref your physio appointment....that is SO me lol 🙂  I keep trying to remember where I got things from in the kitchen and stand there with the coffee jar in my hand looking around at the cupboards before finally remembering where it lives (literally right in front of me)!

I know it seems so long ago now, but Easter was a non-event for me as had 3rd TCHP chemo on 1st April.  And joy of joys, no filgastrim again!!  Plus finally given antiemitics which worked yay!!  Ondansetron and Cyclizine worked well for me and no sickness at all 🙂  However, whilst I didn't get any ikky side effects, it did completely wipe me out.  

From day 2 to day 7 I was unable to stand for more than 30 seconds and could only manage a few short steps from living room to kitchen and spent these days lying prone on the sofa napping on and off all day.  Lightheaded and dizzy with absolutely no energy whatsoever and food and drink not even on my radar (so probably didn't help matters).  I even called the chemo line to see if this is something I should be worried about or if it was just the cumulative effects of chemo.  Said my bloods (which are apparently bloody good - parden the pun) didn't indicate any areas of concern re anemia or low neutrophils, and as my temperature normal, probably nothing to worry about.  But said may want to check with GP to do some obs/bloods to double check.  So then got call from my GP who said couldn't do anything until at least next Tues, so said to call them back after the weekend if still the same.

Anyway, had fun and games on day 8 (last Friday 9th April) as went to have my PICC line dressing/flush done.  However, I was still a bit wobbly and I think the short walk from the entrance doors to the ward - probably no more than 600 yards - finished me off.  Told them when I got there I was woozie and went straight to my seat so they were forewarned.  The nurse had just about finished my dressing when I said I was going to go....so nearly fainted/partially collapsed and then proceeded to do my impersonation of the Exorcist!  Hadn't even been feeling sick beforehand though! 

So my 10 min appointment turned into over an hour and there were suggestions of admitting me.  Fortunately after being seen by a variety of nurses, registrars and an onco consultant, and me producing my good bloods and all other obs being completely normal, they sent me on my way (in a wheelchair) for my husband to drive me home.  He'd been waiting in the car park as he knows it's normally only a 10 min or so appointment...so he was trying to phone me to see what was happening whilst I was in the midst of being changed into a gown (as my top felt the full force of my emissions yuk!)

At least this may mean my dosages will be reduced as the onco said she'd liaise with my consultant to advise of my issues.

So after all that, I also made another decision in that I'm going to get myself signed off from the GP for the remaining 3 cycles - next one being next Thurs 22nd April.  So gives me more time to recuperate after each session and not having the wear myself out with my WFH (ableit it only 3 x 6 hr days).  Even doing this makes me tired so putting myself first for a bit whilst I get to the end of the chemo stage.  My boss has been brilliant about it and said she was impressed I'd even managed any work at all whilst going through chemo.

I'm in the very fortunate position in that my husband is on a good salary and has said to me I can pack up work whenever I want.  And I think I'm nearly at the point when I may want to finally pack it all in....but going to wait and see how I am after all my active treatment has been done.  Like many have said, it does give me something to focus on and and there is only so much housework you can do!  

And finally (sorry for such a long post btw!) but I think my hair may be starting to re-grow!!  Only a few teeny tiny grey tufty strands peeking through but I'll take it!  So far I've still got a smattering of 2mm hairs all over so not been completely bald, but the longer ones now starting to be more noticable 🙂

Anyway, thank you for reading my rambling post and wishing you all well for the coming days and weeks xx  Think we're all nearly on that downward slope to the end of chemo (49 days till my last one now!) xx

Take care all, love

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Ps my chemo brain kicking in now!  Someone told me (can’t remember who) that I could use the eyelash serum on my eyebrows too which I have bern doing.  However as they appear to be thinning too have now bought the Lipocils specifically for eyebrows.

Kaz11

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel @ktruffin 

The eyelash serum is called Lipocils.  I got it on amazon - not cheap but it was recommended by the hospital.  I also use polybalm on my fingernails and toenails.  Again recommended by the hospital and I got on amazon.  Again not cheap but although my nails are quite brittle they are growing.  Have been told that the Pax can have more effect on nails so will need to wait and see how they fare during this.  As you say @ktruffin good to know that things can fall out post treatment like we’ve not been through enough already!  However if it’s doing it’s job I suppose we need to accept that.

@Gelbel hysterical account of being at the physio!  Good old chemo brain.  That has given me such a laugh today.  Thanks for the work info you are a star so appreciate it.

Have had a call from GP’s surgery so just heading for covid jab a week early as they’ve had cancellations.  
Travel ban in Scotland also being lifted early now so we can leave our own council area from Friday for the first time in around 6 months.  Yay!

Kaz11xx

ktruffin
Member

Re: February 2021 Chemo Starters

Very quick question - what is the eyelash serum and who / how did you find out about it? Currently using a really good Bobbi Brown Eyebrow gel which is brilliant but havent started giving my eyelashes any love and like you I am holding onto hair of sorts hidden under hats but dont want my other hair to start to scarper any earlier than it must. Was warned the eyelashed and eyebrows fall out around 2 weeks post treatment to add insult to the many injuries. I suppose we have to remember the chemo is actually doing an amazing job for us even if the process is so rough