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February 2021 Chemo Starters

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

Good luck with the surgeon appointment today and let us know how you get on.  I have a notebook which I take with me every time I go to the hospital for any appointment be it chemo or whatever with a list of questions in it.  It helps me to write it all down and then I can refer back to what has been said.  Think there is information overload with all this at times and it can feel overwhelming never mind with the drugs making the foggy brain worse so don’t feel bad about writing things down it makes total sense to do that. It’s hard to take everything in they are saying at the time.

With you all the way re how you look in the mirror I am exactly the same.  I have photos on my phone of me pre chemo and then I see me now and feel like I am a shadow of my former self.  Always had my hair coloured as my natural colour was brownish and I started getting greys in my 20s.  Now all I see in the mirror is silver fluff which makes me look ancient and does nothing for my self esteem.  I didn’t shave my head when my hair started falling out so I kept the longer strands which had hung in there.  However when I washed my hair the other day I ended up with a couple of knots in the longer strands which wouldn’t detangle and some came out again so that’s why the nurse recommended cutting them but it was only the ends she took off.  Think she was a hairdresser in a past life so it was easier for her to cut it at the back than me trying.  I got a booklet from one of the nurses which said you can still expect some hair shedding post chemo - just great!

 I do feel like sfx are going like indigestion and upset tum but new ones have appeared since chemo finished like the sensitive fingernails which has now spread to my toes and some days the tiredness is worse than others.  Like you eyelashes and eyebrows barely there - I think more so post chemo so my eyes watering now which they didn’t before.  Cheeks also make me look like a hamster!

Anyway didn’t mean to make this all about me.  Just wanted you to know you are not alone in feeling the way you are and it’s ok to feel upset about it.  I was told at the hospital it’s fine to cry because I have been through so much and so have you.  You are strong and will get through this.  We all understand.  Think it’s hard too as now chemo done and rads start next week my friends think everything is dinky doo and I should be normal now but it’s not that simple especially when it comes to appearance.

Sending massive hugs.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

Congrats on port removal, that’s a big milestone. Can completely imagine it feeling quite emotional. Hope it’s feeling ok and not too sore? I’d be an “80s girl” too on the music but my memory is so rubbish at the moment I don’t know that I’d be able to name many songs 😂. It sounds like your team at the hospital are so lovely, and glad that they’ve been able to reassure you on side effects etc - also v kind to trim your hair, I have to confess I haven’t got the first idea what I’m going to do about mine as hopefully at some point it’ll start to grow but I’ve still got longer strands round the front back and sides so not sure how to get it tidied up and almost too embarrassed to go to the hairdresser (I know that sounds ridiculous). In fact generally the past few days the way I look has been getting me down - what with the hair, the disappearing eyebrows and eyelashes, the puffy steroid face and feeling quite bloated and round. I don’t mean to sound vain, I’ve never been a particularly glam specimen or very “girly”, but I just feel like I’ve been ravaged and when I look in the mirror it’s hard to see much of the old me. If people come to the door unexpectedly I get terribly self conscious. I think it’s all part and parcel of the drugs side effects which can make me feel a bit blue at times so hopefully next week it’ll pass off and I’ll stop being such a whingebag. 
Surgeon appointment today - feeling apprehensive as it all becomes more real but also I’m ready to get a date in the diary and a clear plan for the next stage of treatment. I feel like there are so many questions I should be asking but feeling a bit foggy-headed so will have to write everything down before I go.

Hope everyone is doing ok today. Rain is coming down in torrents here but it’s quite nice after such a hot spell, feels refreshing.

Love to all

Tg xx 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning all and thanks for your message @Teagold 

Glad to hear things seem to be going well but totally understand your anxiety about things and worrying about what you are going to be told by the onco etc.  I feel a bit the same as the nearer I get to the end of treatment and my check up with onco early August am worrying about what I am going to be told even although I know surgery took the bad stuff away and chemo etc was my insurance policy.  Me being me always worries about the what ifs so totally get where you are coming from.

I was the same re reconstruction in that an implant was my only option.  May have already mentioned that mine is an expander implant so I had several jnflations prior to chemo starting.  There is a port under my skin and the fluid to inflate goes in via there - just like getting an injection really.  Next appointment with plastic surgeon is a check up in November so will see if I feel like more inflations then as it’s not currently at capacity.  
Also like you I was an E cup originally but think my remaining original boob has shrunk a bit.  They want to reduce it so it is more the size of the new one but I am not keen at the moment.

Was back at the hospital yesterday for my portacath removal.  Not that I look forward to a hospital visit but it was nice to see the nurses again and get much needed reassurance about my sfx.  The nails on my right hand particularly have discoloured a bit.  They look like I have a nicotine habit however I was told that the nail beds look healthy and the discolouration will grow out although I may get peeling/flaking.  My hands seem to be getting better but I have flaking skin on them too.  I was also told that it was normal to feel tearful which I am getting off and on as I have experienced a massive life event and basically my body has had a kicking both physically and emotionally.  I was told to be kind to myself and not worry about crying.  Eyes also watering generally as eyelashes non existent!

Am a bit tender today where the portacath was removed but that’s to be expected.  Process was fine.  Just felt the needles when the local anaesthetic was going in.  The nurse said to me he was going to play music and I looked like I would be an 80s gal (not sure if that was a compliment or not!) but he was spot on.  We chatted throughout the procedure with me naming the artists and songs although he had me stumped with “Hole in my Shoe” - recognised the song but couldn’t get the artist so I had to give in and he told me it was Neil from The Young Ones (was never a favourite programme of mine anyway) but I knew the actor’s real name and he didn’t so bonus points for me!

After the procedure as usual I felt tearful (quelle surprise!) as it’s another thing ticked off the list.  One of the nurses also cut the ends of my old hair off at the back as they are still tangling when I wash it so better to let the new strands come through and have it a more uniform length at the back.

Next step is rads on Monday for 5 days.  Have been told I am getting 3 weeks worth in 5 days so it will be more concentrated.  This is to save on travelling up and down to the hospital for so many weeks.  Not looking forward to it at all.  I know it will be nothing like the chemo but am dreading how tired it is going to make me feel as I already am tired with my legs in particular tired and feeling at times like I have growing pains.  Am told this is all normal but felt a bit deflated when I was told it will be months before I feel “normal” again.  
After rads at the different hospital it’s back to the usual one for bone strengthening drug on 22 July.

Anyway sorry for this long winded post.

 I hope everyone else is ok.  @Gelbel enjoy your break and @CrazyCatLady I hope you had a lovely time with your family.  Like @Teagold my head can be a bit mush at times so love to @Rainbow70  and @hopeful1974 too and @Leftygurl I hope things are better with you.

love and hugs

Kaz11 x

Teagold
Member

Re: February 2021 Chemo Starters

Hi girls, I’ve just caught up with all your posts and this has REALLY cheered me up as I’m feeling rubbish and a bit sorry for myself today. Lovely to see your photos @Gelbel and Sam, and to hear what everyone has been up to. 

I’ve got one more EC to go next Friday. Third one went down ok and no transfusion, as usual the nasty “hangover” feeling has come on since stopping steroids so yesterday was grim, not helped by the heat! As well as the physical side effects I increasingly find I get a bit of an emotional crash - so, was really quite jolly last week and had a couple of lovely lunches out with old mates etc but this week I’m back in “snotty mess” territory 😂. But I’m sure I’ll perk up at the beginning of next week if it follows same pattern as before.

I spoke to my oncologist last week re scan results, he just said all still shows good response. I was hoping he might say “all gone!” like your doc did Sam, but I was being a bit over optimistic there and at that stage still had two ECs to go. I’m anxious about the surgery and what they might find, just hoping that the scans are accurate and that there really is a significant response to chemo going on in there. I’ll have another MRI/ultrasound before my op. Seeing my surgeon tomorrow and hope to lock down the plan for surgery, dates etc. I’m fairly sure that I’m going for the bilateral mx and have been told implants are my only option for reconstruction. In a way I’m glad to have had that decision made for me, but the plastic surgeon did say if I want to come back in a year and have some other kind of reconstruction that’s possible, he said I’ll need to put on some weight which made me laugh as I’ve spent most of my life trying to lose weight or at least stay stable. I think it’s because I’m quite big-boobed naturally (E cup) so perhaps everyone assumes I’ll want to stay the same size which honestly I don’t think I do, or certainly won’t be disappointed to be smaller.

I’m really interested to hear about everyone’s plans for rads, I’ve no idea yet what mine will be but it’s good if it can be condensed to stop lots of travelling back and forth, I’ve heard of some people going in every day for six weeks which must be so tiring. 

@Kaz11 hope you’re doing ok - can completely understand what you meant about feeling a bit lost after the last chemo because although it’s not pleasant treatment, the routine becomes somewhat soothing and it’s comforting to be looked after by nurses who get to know you. I’m sure I will feel the same, a bit “cut adrift” almost. 

@Leftygurl - how are you? Been thinking about you and hoping things are now settling down. Big hugs to you xx

@CrazyCatLady - hope you had a lovely time with the grandkids and that everyone enjoyed the paddling pool! 

@Rainbow70 hope everything went ok on Monday? How are you feeling?

@hopeful1974 - don’t be a stranger! I really hope everything goes ok for you with the TCHP. Thank you for encouraging words about how it feels after a three month break - I’m at that stage where I can’t imagine ever feeling “normal” again, and also your post-surgery posts have really helped me feel more positive about that stage. 


@Gelbel is it next week you’re off? Will be so lovely to see the family after such a long time. I hope you have a fab time. 

I’m sure I’ve forgotten loads of things I was going to say in reply to everyone’s lovely posts because my head is so fuzzy - so pls forgive and big hugs to all.

Tg xx 

hopeful1974
Member

Re: February 2021 Chemo Starters

I’d just like to say that you are all amazing and inspirational! I wish you all the very best as you move forward. I intend to keep checking this thread but will be more active on the June 2021 Chemo Starters one as there are a couple of people on there who are on the same regime as me. I am having the first of six TCHP (2 chemo drugs and 2 targeted therapy drugs) tomorrow. I am feeling great today so can’t really imagine feeling bad again! I would like to encourage you all that I have been amazed at how well I have recovered from the chemo. Most effects have now past (3 months on) including some quite thick hair growth! Of course I am about to lose it all again but that’s because of the treatment path I chose. My energy has been more or less back to normal (perhaps still a little more tired) and I have driven two hours to stay with my sister as well as meeting friends in London at the weekend. I have been on a real high so hoping that these memories will sustain me for the tougher days ahead. 

Lots of love and hugs to you all. Siân xxx

 

Gelbel
Member

Re: February 2021 Chemo Starters

So glad you had a good outing @Kaz11. Philly on crackers sounds wonderful.

Not long home from radiotherapy planning appointment. I'm going to have auxiliary rads too which increases the chances of lymphoedema but I need it for a better outcome.

I'm having 15 sessions from Monday 28 June. First appointment is 9:45, I don't have the others yet - hoping they are all around the same time. 

I felt a bit rushed - didn't really have the chance to ask Qs about looking after my skin but I found the leaflet Breast Cancer Now does which helps. Dumb Q - any suggestions of an emollient cream? And does anyone know a non-greasy one? Is E45 one? I know my local Home Bargains has buckets of that for next nothing. I know I can ask when I have my actual appointment but I want to be prepared.

I have a seroma... thanks to that mattress humping. #NaughtyGel. The head measurer did ask if I'd had an inplant before they could see the seroma. She also said my scar is very tidy. I'm proud of that because I've worked hard on it as I get bad hypertrophic scarring.

Ended up speaking to GP as temp went up last night and I felt rough with a bit of an earache and sore throat. I've not felt 100% since that 2nd jab. He was happy to give me a broad spectrum antibiotic - and they are working already - feel more like me in the past couple of hours. Least I'll be OK for our week away in Sunday.

Hope everyone had a good start to the week.

Love and hugs 🤗

AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi all

Mission accomplished- first trip to the shops in 6 months ticked off the list!  Went to M & S and treated myself to some nice goodies in the food department.  Have the munchies today big time and am eating sweets like there is no tomorrow.  Dipping into some chocolate covered Thorntons toffee a bit too often the past couple of days and that’s one bag of foam lobsters already demolished!

Weather wasn’t as hot up here today so was out for a walk first thing and waited until 4pm before going to M & S.  Turned out to be a great time to go as it was nice and quiet.  Also had Philadelphia cheese on crackers at lunchtime and it tasted normal so hopefully that’s a good sign.

@Rainbow70 that’s typical re the rads clashing with your days away but as you say best to get it out of the way.  Think we all feel that way about getting it over with.  Hopefully you’ll get your planning appointment soon.  I was in and out in about 20 minutes or so.  

Onco wasn’t specific on the date I have to start taking Letrasole.  She said a few weeks so thinking I will start after rads as first session is a week tomorrow.  Will ask the nurses’ advice on this when I am back at the hospital on Wednesday.  Also want to get a steer from them about when to start back at work properly.  Am told the bone strengthening drug which I get on 22nd July will make me feel rubbish for a few days so maybe best to wait until that is out of the way.

Don’t worry about being upset tomorrow, it’s only natural as it’s a massive milestone.  I felt I cried at some point on most of my chemo days tbh!

@Gelbel that’s great re your hair coming back.  Think we are all about the same stage.  Mine is very similar to yours it just has some of the old original strands mixed in.

@CrazyCatLady thanks for the info re the neuropathy sensations.  Will try that with my toes as that’s exactly how mine were feeling too.  As I said previously it’s good to hear that it’s not just me feeling that.  Still getting some tingling in my fingers too but am hoping that will start to subside soon.  Hoping too that some of the tiredness may go a bit as not looking forward to rads tiredness on top of chrmo tiredness and having a double whammy!

love and hugs to all

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

 

@Kaz11 @Hope you got on ok at the shops today and thanks for the tips regarding hair products.  @CrazyCatLady will also look into the lush shampoo bar too . Prob will be tears tomorrow with last chemo, I seem to be an emotional wreck daily at the moment  !! Going to ask if my husband can come in at the end so can walk out together. @Gelbel Wow your hair is really coming on !! Good you have planning appointment tomorrow do you know when you will start radiotherapy and how many sessions ?  I rang about my appointment last week as not heard anything . Got my appointment 1st July .. typical it clashes  with couple of nights we had booked away so have changed our dates as didn’t want to delay any further . Not sure how long will have to wait for planning appt I’m going to ask about this tomorrow see if anyone can find out . Also think I’m going to start tamoxifen before radiotherapy.  
Thanks for the good wishes for tomorrow . 
 Love to everyone 

🌈xx

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

 

@Kaz11 @Hope you got on ok at the shops today and thanks for the tips regarding hair products.  @CrazyCatLady will also look into the lush shampoo bar too . Prob will be tears tomorrow with last chemo, I seem to be an emotional wreck daily at the moment  !! Going to ask if my husband can come in at the end so can walk out together. @Gelbel @Wow your hair is really coming on !! Good you have planning appointment tomorrow do you know when you will start radiotherapy and how many sessions ?  I rang about my appointment last week as not heard anything . Got my appointment 1st July .. typical it clashes  with couple of nights we had booked away so have changed our dates as didn’t want to delay any further . Not sure how long will have to wait for planning appt I’m going to ask about this tomorrow see if anyone can find out . Also think I’m going to start tamoxifen before radiotherapy.  
Thanks for the good wishes for tomorrow . 
 Love to everyone 

🌈xx

Gelbel
Member

Re: February 2021 Chemo Starters

Just a quickie while I remember... I look like a gone off dog's dinner so cropped some photos of my hair. How much salt and pepper? Too much white on top looks like my hairline is at my ears!

My hairdresser's ordered me some brunette coloured mousse so I can brave the bonce when we're away. Saw a woman yesterday who was obviously chemo hair very, very cropped, growing back (she practically had steroids stamped on her forehead) - she looked stunning. Like you @CrazyCatLady /Sam... I don't mean the steroids effect for you for 1 minute.

Ive signed up for the LGFB online course as I need help with my non existent eyebrows. Not helped that the top of my eye sockets look like very strange ones!

I've got that horrid everything tastes of diluted seawater back. What's that all about? 😢

@Rainbow70 yeah for tomorrow. Another of us flag planting on top the mountain. 👊

@Leftygurl I hope your port wound continues to heal.

Anyway photos. Oh and radiotherapy planning tomorrow.

Love and hugs to you all 🤗

AnGELa x

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CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning @Kaz11 - aww thank you for your lovely comments re my piccies.  Did feel rather nice getting dressed up a bit and putting full makeup on.  Good luck with your M&S trip today....I'd probably go for the early slot as it may be a bit cooler as my wig does make my head sweat but ok for around 2-3 hours (and as today's forecast is scorchio don't think I'd want to be doing it later in the day).

I think I've mentally adjusted to my fluff bonce and don't even think about it now if I'm out and about sans wig/turban - and many delivery drivers have seen me without a cover up (as my daughter has a bit of an online shopping habit lol!). 

I'm starting to use the Lush shampoo bar which is supposed to help invigorate the hair follicals and promote thicker hair growth so time will tell if this works. 

I figure if I'm comfortable with my appearance, why worry about what anyone else thinks, but I do know how difficult it can be if you think that all eyes are on you.  Also think part of it is showing my daughter that it doesn't matter what you look like - and she is now starting to expose some of her old scars (from her teenage self-harming) so she is getting into a better mind set of being comfortable in her own skin again now.  So I'm taking this as a big positive adjustment in the way she sees and feels about herself.

Good luck with your port removal next week and hope it heals well for you and that the last lot of sfx are now on the way out.  I too got a little bit of peripheral neuropathy - started being in my finger tips but last 2 cycles it moved to my toes/ball of my feet.  It does seem to be easing a little to hoping that eventually it may resolve itself.  It's not painful (as I know some people do suffer with badly) but more of a frustration as need to keep wiggling my toes to get the tingle to stop.  I find that when I'm in bed, if I press my feet on the baseboard of the bed, it does seem to help.  May invest in some magnesium cream as this is supposed to help too.

@Rainbow70 - aww thank you too for your lovely comments 🙂  As yet I'm still hanging on to some of my eyebrows but definitely thinning (as are my eyelashes) - I used the It Brow Power from my LGFB pack .  It goes on more like a powder so wasn't heavy or greasy like some brow pencils and there's a spool brush on the other end to blend/shape the brow.  Definitely recommend this as it does look so much more natural than some others and you can get it in Boots.

And thank you for the reassurance about the surgery...got my V pillow already so see how that goes for sleeping on my back.  Hopefully though can go back to my normal side sleeping after a few weeks once I've healed though.

All the very best for your LAST CHEMO DAY on Monday!!!  Hope the nurses give you some extra attention (and you don't blub too much like me and @Gelbel 😁...but if you do, then it's all good too as happy tears are very much allowed at all times xx)  Well done for getting through it...and hope your last lot of sfx will be kind to you xx

@Leftygurl hope you are getting somewhere with your horrid issues with your port wound and things are looking up for you.  And good luck with your last few chemos - won't be long till your last one now xx

@Teagold hope your results are as positive as was hoped for and you've had more chance to weigh up your surgery options.  I'm sure you will come to the right decision for you with all the advice and support you've received xx

@Linda1967 and same to you too with your surgery choices - we just have to go with what feels right for us and with the advice from our surgeons as to all the pros and cons for each option xx

So hope you all can enjoy a restful and relaxing Sunday and make the most of this beautiful weather xx I currently have a toddlers 3 ring paddling pool set up and ready for a little dip later (best £3 spent in the last few days!)

Love to you all xx

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

It sounds like a few of us are in the same boat with the aches and pains and tiredness!  That’s great it is your last chemo on Monday I hope it goes well and that will be another flag on the summit!  Let us know how you get on.

I am using Nioxin System 2 for non coloured hair with progressed thinning.  I got the starter pack which contained shampoo, conditioner and a scalp treatment.  The scalp treatment is a mousse.  I was also advised by the nurses to get the follicle booster which is in a white bottle with purple writing.  You can get these on Amazon and I also got the starter pack on the Look Fantastic website. I am willing to try it if it helps my hair grow back more quickly fingers crossed.

love Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone

Wow @CrazyCatLady  you look amazing . Your eyebrows/eyelashes  look fab !So pleased you are feeling ok after last cycle if EC. I had the same op you are planned for . I was in hospital over night . Managed ok with paracetamol/ibuprofen and  just had to get used to sleeping on my back. How lovely you get to see your grandchildren today .

 @Kaz11 @Gelbel @was thinking of you both Thursday /Friday not having to go for your treatment.  It’s my last one on Monday !! I get what you both are saying about feeling more tired / achy and feel like been hit by a truck !! It seems to my top half of body that aches and like tingles/burning sensation  !! Had bloods done on Friday last hb was 94 so dropping . I can’t help myself every time I ask to look at my bloods results !! Also won’t miss the bruises either to the back of my hands @Gelbel . @Kaz11 @Your shampoo regime sounds good I think I need to look into as hair looks about 5mm in length and very sparse. 
 
sending love to everyone 

🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

That’s reassuring that it’s not just me feeling this way.  Was so tired the other day I felt like I’d been hit by a truck until I got moving and only did a short walk that day to GP surgery to hand in my Letrasole prescription letter from onco.

I have been using polybalm as recommended by hospital on finger and toenails but the sensitivity only just started prior to last chemo.  I suppose it is the cumulative effect of the chemo - not just 9 Taxol but the 3 EC before that which I sometimes forget.

Thanks for making me feel better and for the heads up re the shops I really appreciate it.

Love Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

@Kaz11 - the side effects you describe are mine - perhaps it's not all low potassium. My legs feel quite heavy. Left thumb nail has started peeling a bit. I think the neuropathy feels slightly better today - not been that bad as just tips of fingers affected. My laptops don't recognise my fingerprint at the moment.

I've gone off tea as the milk in it takes off all the time. Ditto a nice cold glass of milk.

Enjoy your shopping - might be worth going towards the end of opening which is what I tend to do on a Sunday. Though TBH first thing Monday is best time of the week.

Kaz11
Member

Re: February 2021 Chemo Starters

Good morning ladies

So lovely to see your posts today was just thinking sbout everyone.

@CrazyCatLady wow Sam you look absolutely brilliant!  Great to see your hair coming back in.  Mine is very similar.  I describe it as quite fluffy at the moment.  As I was scared to shave my head mine is a bit of a mix of the new fluff at the top and the older strands elsewhere.  Using the Nioxin shampoo and follicle booster as advised by the nurses so hoping it does its job. Despite hating the cold cap I think it did make my hair start coming back a bit quicker.

Fabulous news re your surgery too.  You must be extra special having 2 surgeons working on you at the same time!  Seriously though just great that things can be preserved as that will make you feel so much better.  So pleased for you.  
Your wig looks great so glad you were able to go out for a meal.  I am still a bit nervous about that yet especially as I have portacath removal on Wednesday and rads starting week on Monday on 21st so think I will wait until after that.  However I have decided to take the plunge and go to a shop for the first time since December (why am I feeling nervous??). Going to M & S tomorrow as think it will be quieter on a Sunday and get some nice food.  I am such a party animal am I not??!!

@Gelbel I am similar to you in that I have still had some chemo sfx 8 days on from last one. Am feeling more tired than I was especially my legs.  Slightly concerned as the rads make you feel tired too and I already am.  Finger nails also very sensitive and some are sore to touch.  Strsnge sensations in feet too. One of the nurses called yesterday to check in.  She said this is all normal (likely some peripheral neuropathy) and my nails may peel so will just have to wait and see.  I can discuss with them on Wednesday when I am in for portacath procedure.  Certain foods still tasting a bit yuch so hoping that passes soon.

Great you are getting ready for your break with your family which will be lovely.  So what if there are tears.  We have all been through the wringer mentally and physically so it’s better out than in as they say.

Have a great weekend everyone.

love Kaz11 x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Aww thank you @Gelbel and good that your sfx also behaving from the last cycle 🙂 Hope you have the most fantastic time on your break to see your family....blub away 😊

My weight has been behaving oddly too...from 29lbs down at best but packed it on over last few weeks. But overall still got 21lbs off. Definitely think my appetite has returned - not helped by meal out and 2 x takeaways over last week lol 😆.  So looking forward to a Burger King on our travels on Monday...it's kind of a tradition when we go away haha 😅

Have the best weekend and enjoy xx

Love Sam xx

Gelbel
Member

Re: February 2021 Chemo Starters

Wowzers! Sam/@CrazyCatLady you look absolutely amazingly stunning. My hair was like yours around 2 weeks ago. I'll try to remember to take one of mine later.

And what fab news about your surgery - not long now. Time to regain some strength in readiness. I'm so glad work are being supportive - makes a big difference as that's a weight off your mind.

My final side effects were few and far between - I'm suffering more from the low potassium so feel a bit spacey and out of breath if I exert myself. If I see another bit of spinach or strawberry or banana... and I'm drinking orange juice and coconut water like there's no tomorrow. Really can't understand why I've not lost any weight as I've hardly had any 'carb' carbs. It was so lovely to have a 'normal' lazy, wind down for the weekend Friday afternoon and not waking up at 3am with no chance of going back to sleep nor buzzing from steroids today.

Not having bruises on the back of my hand nor in the crease of my elbow is a novelty too!

Have a wonderful weekend. We're packing for going away on 20th for 6 nights to see my family - mega blub time.

Love and hugs. 🤗

AnGELa xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning my lovelies - hope you are all doing well and getting to enjoy a little of this lovely summer weather.

Sfx from last chemo have been pretty much non-existent which has been wonderful!  So even though it's only been 8 days, I'm already feeling 'normal'...well, as normal as you get after chemo! 

I've now seen my surgeon and he's confirmed I'll be having exactly the same surgery as planned for in January, so bilateral lumpectomy with therapeutic mammoplasty.  Plus (and he only confirmed this to me yesterday) he now thinks he can save my left nipple - apparently when he saw me in January he was thinking it was likely I would lose this one due to the skin tethering/inversion, but as it is now less pronounced and only visible when I raise my arm, he thinks it may just be salvagable!  So not only will I get my reduction and lift, but both breasts will still have their nipples.  Sounds so silly to be worrying about something which serves no real purpose any more and is basically now just a cosmetic 'decoration'!  It's odd how pleased I am about this as I know it doesn't actually make any difference - and no-one other than hubby sees anything anyway (oh other than about 15 other people who prod and poke me lol!)

Surgeon also said he will still be removing same amount as before as the theory is that by removing around where the tumor bed was, it will ensure any stray cells which don't show on the MRI can be removed.  So will be around 3cm x 3cm amount of tissue taken from each one and they'll shuffle some tissue around to fill the gaps so will keep a good shape.

They also confirmed on the day that I have my surgery date booked in already - so Mon 12th July will be the op day (eek!).  I'll also have 2 surgeons working on me at the same time so as to reduce how long I'm under general anesthetic.  Said should be around 3 hr op and is going to be at my normal hospital, so only 10 mins from home.

This means I have a good 4 weeks of no treatments and can hopefully get to enjoy some good down time at home.  I'll be doing WFH (18hrs) from next week up until surgery and then plan to take 2 weeks' sick leave and then (if feeling OK) plan to resume my WFH.  Of course all depends on how I recover and if I still get hit by the tiredness post-chemo and post-op.  As always, my boss is being brilliant about it and keeps telling me to take as much time off as I need.

And more good news is that today (!!!) I finally get to see my two granddaughters....there may be tears again lol 🙂  Overall this past week has been so, so brilliant!  I have felt good, celebrated my birthday on Thursday and had my first meal out on Wednesday (taken to lunch by my mum and a very close family friend).  I received my Look Good Feel Better goodie bag with some really good high brand products (Clinique, Clarins, Channel, YSL!) - so these were utilised well for my day out, along with my wigs' first official outing!!  Plus, everyone is now saying they can see my hair growing....slowly but surely 😁

Hair!!Hair!!Wig outing!Wig outing!

Wishing you all the very best for the coming week and don't forget the Factor 50 this weekend 🌞😎xxx

Love to you all

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Thank you @Rainbow70 for saying those lovely things which has made me feel better.  It has been a huge emotional rollercoaster for us all and continues to be so doesn’t it.

Totally get where you are coming from with the muscle aches.  It kind of reminds me of the growing pains I got as a little girl.  Wouldn’t mind so much if these aches were making me taller but unfortunately not!

 I am getting Letrasole as I am post menopausal.  The letter from onco to GP says I will be taking the tablets for 7 years.  Bit scary when you see that in black and white!

Re radiotherapy I am getting 5 sessions - Monday to Friday starting 21st June.  I was told they are condensing it up here now so as people don’t have to travel back and forward for weeks on end.  It’s almost a journey of an hour for me to get there and is a bit awkward to get to but it’s only for 5 days.  Was told at planning session last week that actual treatment is only around 2 minutes each time.  By the time I get in and changed into the gown and lined up etc the whole process they said would be around 12 minutes.  It’s a faff of a journey for that but needs must.

Just realised the time so goodnight everyone and sleep well.

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Kaz11  you don’t sound pathetic at all. It’s totally understandable you will feel lost and tearful on this emotional rollercoaster. Im pleased you  have  the lady from ‘some one like me ‘ to chat with too . I thought that was lovely how the nurses decorated the little room you had treatment in for your last chemo. I have been moisturiser daily too. The body aches are awful aren’t they,  mine are like a burning sensation they come. Oncologist said I was to start radiotherapy around 4 weeks after chemo , so hopefully I’ll get appointment soon . Also said I could start hormone treatment(Tamoxifen)  before radiotherapy or after, I think I will wait to see how many sessions i will be having. I have read the nice guidelines so have an idea what should be offered. I didn’t know it could go through to your back so best start moisturising back too.  Oh yes the joys of hot flushes and the menopause !!
Love to everyone 

🌈xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Leftygurl so sorry to hear about your wound, as if you have not been through enough already.  Big hugs on their way to you, just awful what you have had to endure with this.

@CrazyCatLady your chippy tea and some fizz sounded fab.  I haven’t had any fizz yet but just received some lovely sunflowers from my cousin for completing the chemo which was so kind.
 I have felt a bit flat since completing chemo. Glad it’s over but the hospital visits have been my life and my new normal since November so it seems odd that I won’t be going on Thursday.  Will miss it (not the chemo obvs) in a strange kind of way.  One of the nurses said I would likely feel a bit lost without seeing them every week and that’s exactly how I feel.  Expected to feel elated but instead it’s more tearful.  Sorry for sounding pathetic.

@Rainbow70 hope you get the rads appointments sorted soon.  I didn’t get any advice about moisturising at my planning appointment but have a lot of E45 at home.  Someone Like Me lady advised moisturising at the back as well as the front as apparently the rads can go through to the back too.

My muscle aches have been bad too and tired again today.  I will start hormone treatment in a few weeks - Letrasole for me.  Onco gave me prescription for it to hand to GP.  She said to start it in a few weeks so that would mean post rads for me as that starts 2 weeks today on 21 June.  Will maybe check next week when at hospital for portacath removal exactly when I should start.  Nurse said pills will give me more aching joints and it will make my menopause flushes worse - happy days!

love and hugs

Kaz11x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Oh no @Leftygurl so sorry it's not looking so good for you today - hopefully they'll get to the bottom of it and get it all sorted for you soon xx Sending hugs and positive vibes your way xx

And fully agree regarding the steroids....seem to see every hour of the clock for first few days afterwards - but least these are the last lot for now.

Hope you got to enjoy some of the lovely weather today xx

Love Sam x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone 

@Leftygurl @so sorry to hear you have all this extra worry regarding wound bed . Hopefully you will hear back soon with plan if you need to attend clinic . Sending you a virtual hug .

@CrazyCatLady @Gelbel @Kaz so pleased for you all completing chemo  and planting the flag at the the top of the mountain. @Gelbel @That’s great you can have hair trimmed in 6 weeks. Will be lovely to have a well deserved pamper.  @CrazyCatLady @Fabulous news regarding your scan results. I had bilateral therapeutic mamoplasty not sure how many cup sizes I’ve gone down as not been measured as yet. Like the other ladies have mentioned compared to chemo surgery was much easier. Your  Chippy tea sounds wonderful. Thanks @Kaz  for info regarding radiotherapy , I rang last week as still not heard anything and good job i did as letter not been forwarded on for appointment to be made . 
@Teagold  Fab news regarding your recent reassurance from ultrasound so pleased for you . 

on number 8of 9 paclitaxal today, muscle aches have been awful all weekend. 

Is Anyone  starting hormone tablets after radiotherapy or before ? 

Love to everyone else , your all doing amazing 

🌈xx

 

 

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady 

Thank you for your good wishes, but not actually looking so good today I’m afraid as the wound bed is not how it should look so I was on the phone to my plastic surgeon’s secretary this morning. 
She requested a photo and possibly attending their wound clinic tomorrow. It’s for the best probably but it’s such a long way away from my home, an hour and a half’s drive! 🤦🏽‍♀️  But what will be will be as you say.

Didn’t sleep a wink last night either, bloody steroids! 🥴

At least it’s another beautiful day!

Alice xxx

Have a lovely day ever

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning everyone

My last chemo day was so emotional...in a good way!  Cried when I sat in the chair and the sister asked me if it was the last one...so she apologised for making me cry, but they were happy tears again.  Then she cried when I handed over my little thank you gifts and card thanking them all for making it all so much more bearable.  They also took my PICC line out too....bonus!  So having a shower on Saturday was bliss without the limbo cover on!  Also means I can use the swimming pool when I go for my break next week 🙂

The biscuit bribery worked though as both hubby and daughter came in to see me as I was leaving (more tears!) and then home to small glass of bubbly followed by chippy tea.

Then phone calls to family to let them know it was all done - they have all been so supportive and positive, but not in a patronising way.  They understand my humour is what keeps me going, so lots of laughing and giggles.

So after all that emotion, I crashed over the weekend, but other than the woozieness from the steroids and the tiredness, looks like this last lot of sfx won't be too bad again.  Even managed to cook a dinner on Sunday (but not a roast this time - just chicken breast in paprika).  Was also lovely to be able to nap outside in the garden, under a huge parasol and lathered in sun screen.

Also now had my surgery assessment appointment through for Friday morning so lots of questions to add to my list now - mainly if I'll still be getting as much of a reduction as originally advised (possibly loose around 2-3 cup sizes still?)  And also if the skin tether under my left nipple will be resolved with the surgery.  Initially at my original assessment the surgeon suggested doing nipple shaving...so unsure if this will still be the case (and also if they'll balance up the right one so I don't have different sized nipples!)  

So at the moment, life is good and looking forward to this break from treatments for a few weeks at least.  

Wishing you all the best of weeks and treatments, sfx and general life is good to you all xx

Love Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Oh Alice @Leftygurl - just been catching up on posts from over the last few days and can't believe what you've been going through.  Hopefully now though the wound can start healing properly - what an absolute nightmare for you!  Also wishing you well for your remaining pax....every day is a one day closer to the last one xx

Take care and hope the week is kind to you.

Love Sam xx

 

Gelbel
Member

Re: February 2021 Chemo Starters

Hi Alice

My hair came back quite early on Pax - in fact I asked if the chemo was actually working. Though in normal times it grows like mad. It's now nearly 1cm in places. And the back's thickening nicely. I dropped in for a natter with my hairdresser very early this morning... thanks to steroids awake at 4, putting a double roller blind up at 6 (still at it at 2!) popping out at 7:30-9:30 having a shopping mooch after that natter. She's going to get me some coloured mousse  to hide the patchy white front when I'm ready to go out with a crop. She'll take the very ends off in 6 weeks or so to force it to grow more. She said it's not baby hair but real, good quality stuff that looks like its going to be straightish! Hurrah! 👊 I've always been a uneven curly, never nice beachy waves nor coils or ringlets.

My eyelashes are coming back - you can actually see the long ones when coated with mascara. My team at work cheered on a call when I was rubbing my eye as I had an eyelash in it a few days before the holiday weekend. 🤣

Worried about my eye brows as I never really had any and they are not showing any signs of wanting to appear.

When I felt 🤢 on EC sour jellies were a godsend - made a change from more ginger nuts.

Hope you do feel better soon and your next cycles are easier. Perhaps as your wound is healing now it will. 🤞

Love AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Hi Alice / @Leftygurl 


My god I can’t believe what you’ve been going through, truly horrendous. Good to hear that things now seem to be improving but I’m so so sorry you’ve had this to deal with on top of already having to cope with treatment etc. And as you say, even more horrific given that portocath wasn’t the only route in the first place. I really am in awe of you for keeping going through all of this and just hope that things will settle down and start healing properly now and that you can finish your chemo as smoothly as possible with no more unnecessary pain or trauma. Hope you are getting lots of rest and being very kind to yourself, taking it as easy as you can etc. 

Sorry also to hear about the pax side effects - I found pax rough on the tummy too and mainlined ginger tea, don’t know whether it really helped but I guess anything soothing is worth a try. 

Big hugs to you 

Tg xxx 

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 

i don’t think I’m stronger or tougher than anybody else tbh, I think it’s self preservation and if you’re faced with something like that you haven’t really got any choice tbh, I suppose you could give up with the chemo or treatment but in my eyes that’s never been an option and I can’t think anyone in their right mind would give up, you just got to get on with it.

Yeah it’s been tough though, I can’t deny that, and there’s been plenty of tears shed but things are getting better! 😁

Thanks for replying, good luck & hugs to you too 😘

Alice

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @Gelbel ,

Thank you, yes it does feel better getting it off my chest lol as sometimes you don’t know where to start but I woke up at 4am and thought now this is the right time weirdly, funny how things strike you sometimes 🤷‍♀️
Pax was a surprise yes as I was told it wasn’t so bad, maybe it won’t be so bad this time, you never know. The one plus I have noticed is my eyebrows & eyelashes are growing back! Not much growth on the head much though. Has anybody else found this on Pax?

Alice xx

Kaz11
Member

Re: February 2021 Chemo Starters

Jeez @Leftygurl what an absolutely horrific experience you have had.  My heart goes out to you it really does.  As if going through the actual chemo journey is not bad enough in itself for you to have had all that with the portacath is down right cruel.  Something has clearly gone badly wrong along the way and the fact you now have to clean it out yourself literally seems to be rubbing salt into the wound so to speak.  You must be exhausted with it all and I can only imagine how mentally tough going through all this must have been.  You are one strong and very tough cookie Alice and I am in awe of you dealing with it all.  There is not much I can say that will help this other than you are getting through this step by step and hopefully now things going in the right direction.  You are also getting through the chemo cycles so that’s another huge tick to mark off after each one.  Huge admiration for you 💕.

Sending you massive hugs.

love Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

Good grief @Leftygurl /Alice that's nothing short of atrocious. When I was reading about how they were dressing the wound thought it needed saline douching and packing. See old school 2 years of nurse training for you (before I dropped out thanks to contracting Hep B).

And so sorry you're suffering on Pax. It's meant to be so much easier. Has been for me - then I had an 'easy ride' with EC compared to others.

Not too long a story at all. Needed telling and hope it's off your chest (no pun intended at all - sorry). Thank goodness for that great nurse of yours. A definite angel. 

Let's hope it heals well and soon. And you find Pax easier of your team can adjust things for you.

Love and hugs.🤗

AnGELa x

 

 

 

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi everyone,

Yes I know I’ve been a stranger for the past couple of months but I’ve been reading all your posts nonetheless but just not replying, I just haven’t found the strength tbh. So sorry, very long post coming!🥴😂
About the beginning of April I had my portacath removed to catch you up after a stay in hospital for a week on IV antibiotics to reduce the infection before removal. The surgeon said to me when taking it out that the wound bed tissue did not look healthy at all so advised that he leave the incision open to help the yuck to drain out so I agreed.  After a couple of weeks the wound swelled up again around the incision so I had to have another course of antibiotics for 10 days which kind of settled things down but not completely, it actually felt they were keeping the infection at bay rather than getting rid of the swelling completely and when I saw the lovely nurses at my cancer unit they agreed so was referred for an assessment by a consultant the next week. 
This was on the 10th May. The consultant took one look at it and said that the tissue on the wound bed looked necrotic (dead) and snipped out a sample, and I could see what she meant! So I was admitted there and then for a cleaning out of the wound, she explained that another incision would have to be made under general anaesthetic so they would have room to do a proper job and unfortunately the wound will be made deeper in order to do this also, and be left open again as they need to keep an eye on how it is healing. 
I went home the next evening and hoped for the best. Since the first procedure to take out the portacath I had been going to the wound clinic every other day and they had been filling it with a silver dressing with a plaster on top and when that didn’t really help they went to the next stage up, as they said to a honey infused tape as this is meant to draw all the slough out so that the wound bed has more chance of healing as it needs to be more red and show granulation which is the stage where it shows healthy tissue and encourages proper healing, which it wasn’t doing in a nutshell. Ok so this went on until about the 18th May when I contacted my lovely guardian angel nurse who’s taken me under her wing basically. She contacted a plastic surgeon consultant who she knows personally and who’s work is renowned in the area, and the next week I went to see him.

Now this guy was like a shining light in this whole sorry mess when he sat me down and said “ok so Caroline has told me everything that has happened to you and excuse my French but you’ve had a really shit time haven’t you?” I nearly cried in relief! Yes! I replied lol.

He started talking to me (all important stuff btw) but at the same time started snipping out all this dead tissue with his surgical scissors like I was having a trim at the hairdressers, it didn’t hurt until after a while when he hit a nerve and probably the healthy tissue so he stopped then. He suddenly said “do you shower it out?” I didn’t know what he was talking about as up until then all the nurses who had tended to it had been gingerly using long q tips and saline spray sometimes and swabs, but he said the best thing to do is do away with all the silver & honey dressing as they are acting like a plug and not allowing any air to it so every day I need to get in the shower and rinse it out trying to remove as much of the slough out as possible (sorry if anyone is trying to eat!) pat it dry with some sterile gauze and then loosely gather another wad of dry gauze and put it inside so it slightly contacts the wound bed and then whack a big plaster over the top. I went back this week for a review and although he told me this is going to take months to heal because the chemo will slow everything down the skin surrounding the wound is not so swollen and red which is encouraging 😊 

So, I’ve caught you all up now. I only go to the wound clinic now every two weeks for supplies and talk over any worries and I’m seeing the plastic surgeon in about a months time on 8th July, a week after my last chemo session. My 5th session out of 8 had to be delayed by two weeks because of the infections.

What is really gauling out of all this is back in March I was told I had to have a portacath because I had a collarbone plate and there would not be room for the line to go round the corner of my shoulder if I had a PICC line installed. Subsequently when my portacath was infected in order to give me my chemo they asked if they could try to put a PICC line in and it was successful so although lots of people have had a portacath have had no trouble at all this is not my experience and I just wish they had tried to put in a PICC line in in the first place! Sod the protocol!

I've just had my 6th chemo, oh the joys of Paclitaxel sfx! I actually had my first dose of Pax on my 5th infusion so I’m waiting for the bone aches, bloating, sore mouth, extreme fatigue to kick in next week but for now because of the steroids I’m not sleeping much lol.

I tell you what reading all your posts over the last few months has been amazing and I love hearing all your tales of hope, courage and sometimes despair (as we’ve all had our moments!) but I think we’re all going to be alright you know and we will get through this because we’re strong, and found have found hidden strength to get through this terrible disease. I hope you haven’t fallen asleep through my tale of woe and have a great weekend ladies in the ☀️ whatever you’re doing.

All my love 

Alice xxxx

 

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi ladies

@Teagold that sounds good re your ultrasound so fingers crossed for your results next week. Very brave of you being at the hairdressers.  I can only imagine how difficult that would have been.  I think the hair loss is a huge thing for us ladies to deal with.  As you say it’s hard when you know you only have small tufts.  Unless people have been through it I don’t think they can appreciate the psychological blow of the hair loss.  

@Gelbel well done you on completing number 9 and climbing the biggest mountain ever.  So glad for you that you were able to get it done today and it wasn’t delayed after your problems at the start of the week.  A delay to the last chemo would have been a hard one to take.  So with you on not hearing that 5 minute alarm any more and I certainly won’t miss having to get help to go to the loo and the military operation involved being attached to the cold cap machine and a drip and getting those contraptions into the loo with me each time.  
No bell ringing involved at my hospital either.  Think there is one at the hospital where I get the rads but I for one will just be glad to get out of there once that treatment is done.  I didn’t feel as comfortable there as I do at the main hospital it’s just a shame they don’t do rads there, I know I would be so much happier if they did.

I will get bloods done again soon before portacath removal and pre bone strengthening drug so that will involve a cannula but at least I only need to deal with that a couple of times.  The portacath much as I wasn’t keen at the beginning, did turn out to be the best thing for administering my chemo.

Hope you get plenty rest at the weekend.  As you say other mountains to climb still but not as high as the chemo one.

love and hugs

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

That sounds really good news @Teagold Let's hope the results dot the Is and cross the Ts on what the doctor could see. 🤗

Well at 5 to 5 on a Friday afternoon, 18 weeks after I started, I stuck a flag on the top of the toughest mountain I've ever had to climb. That's the hardest bit. We don't ring the bell in Leeds. TBH its never sat well with me from when I first heard about it years ago. Lots of little words in ears going on among the nurses so as I finished the final flush those that could came in and wished me well etc. I blubbed a bit til my nurse of the day found out I was driving home and got all concerned about my ability to do so.

There are other mountains - just not as hard. So don't want to do that one again.
And I so don't want to see another cannula, or hear another infusion 5 minute countdown alarm or have another blood test for a very, very long time.

Now to ride it out for a few days.

@Kaz11 @CrazyCatLady and anyone who recently had chemo are having an easy time of the side effects.

Happy, happy weekend.

Love and hugs 🤗

AnGELa x

Teagold
Member

Re: February 2021 Chemo Starters

Hello lovelies - sitting here reading all these posts is making me really tearful. You’re all AMAZING!!!! 

@CrazyCatLady I am so so chuffed to hear your amazing MRI results, that is flippin’ phenomenal! Especially pleased as you’ve had such a rough time on the treatment and I know the S/e have kicked you round the houses and you’ve been so brave about it. Sending you a massive virtual hug. Good luck today for the last one, what a milestone and I hope the biscuit bribing works and they let hubby and daughter in to see you ring that bell.

@Gelbel - so glad to hear you’re going to make the final stretch today after such a crappy week - go go go we are all cheering you on today too. Not surprised you’ve been soggy mess after such a rotten time of it, and like you say probably a lot of pent up stuff too as you’ve been so brave and positive all the way through this, and keeping us smiling. Let it all out - you did it, your turn to plant that flag and celebrate, you deserve it.

@Kaz11 you made it!! So pleased that 9/9 and hope the next few days kinder re S/e etc. Great that you’ve now got a clear plan for rads and all sounds v quick and efficient, though am sure will be tiring but if you can do chemo you can do anything. Can completely understand feeling emotional thinking about your mum and dad - big big hugs to you.

I had my ultrasound this morning - I’ll get the full results next week, lovely doc said still looks like everything going in right direction since the last one which was mid April. So I guess that’s good as I was a bit fearful they might say oh dear it’s growing again (massive worrier, obvs). 

Am currently sitting in the hairdressers with my two girls who are getting their first haircuts for over 18 months - watching lots of people getting their hair made beautiful whilst my terrible tufts are stuffed into a cap was making me feel pretty wistful but all your posts this morning have massively cheered me up so thank you.

Hope everyone else is ok, taking it easy, resting up etc.

Big hugs all round

Tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning all

Just wakened after a better sleep last night other than being awake 4-5am with flushes 🙈.

Anyway just wanted to wish everyone all the best again for treatment today and way to go @Gelbel you are getting the FINAL chemo - so pleased you know that now!  Woo hoo!

As you all say I know this week post treatment will be the same as last with the sfx so trying not to get too carried away about feeling well again soon.  As the SLM lady said the other day you forget how to feel well don’t you.

Don’t know what happened with my previous message as it must have cut off but just said that when starting chemo in February and knowing if it went to plan I would finish in June, felt like such an eternity and just couldn’t see getting there but here we are.  We are strong women right enough.  Let the tears flow today girls - better in than out.  I feel mine coming on today looking at pics of my late Mum and Dad who would be devastated I have had to go through this.  I miss them so much.

Anyway today is not about me.  Go and knock the stuffing out of chemo one last time and ring those bells loud ladies.  You all so deserve it!

Massive virtual hugs all round 🤗🤗🤗

Kaz11 x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 /Sian - thank you so much and for your reassuring words regarding the surgery.  Hopefully now won't be quite as much to take out!

Love and hugs xx

Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 - thank you for you lovely kind wishes - not sure if I'm buzzing from the steroids or the news!!  Not slept well for last couple of nights so not sure if it's because of the warm weather, the anticipation of today or the nervousness for the surgery (but likely all of it combined!)  But we've only gone and blooming well done it!!  GO US, WE WARRIOR WOMEN 💪!!

That's sounds such a lovely thing for your team to do for you by decorating your area....and good news on the hair front too, so fingers crossed for you that it starts filling out again very soon.  I'm quite looking forward to embracing the grey - it is after all quite trendy still lol 🙂

Hope you don't have too many sfx after your last chemo (doesn't that sound so brilliant!) - hoping mine will be like the last time so only around 5 days of yukkiness, but by far the easiest one yet out of the 5!

Take care and good luck with your portacath removal and rads....it'll all be over soon (well apart from the aftercare treatments and pills!)

Love and hugs xx

Sam xx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Aww @Gelbel that is wonderful news that it's all going ahead today.....yippee!!  And yes, lots of tears expected this end today too - it's surprising how emotional it all gets (I shed tears every time I hear someone else ring the bell as I'm so happy for them)!  Glad you're feeling a bit better today too.  Good luck for today and just those last few pesky days to get through once the last treatment is done!!!  And sincerely hoping you get the good results too after your chemo journey xx

I did manage to get my little thank you gifts for my nurses and staff for both the chemo day ward and the Lister Ward where I have my PICC line done (think they definitely deserve something after looking after me so well during my wobble-fests lol)!  Decision on what to get was made on Wednesday when I heard them talking about their 'cookie cupboard' so got 2 large chocolate biccie boxes for both wards - who doesn't like a choccie biccie!

Today is also my mum's 79th birthday plus the anniversary of my only other surgery I had 12 years ago (internal 'downstairs' cyst!).  So this day will also mark another significant milestone (for both of us).  Gonna see if my unit will let my hubby and daughter come in to see me ring that bell...I have afterall bribed them with biscuits lol 🙂  They have done it for others, so hoping they will for me too - they just let them come inside the door and not actually come into the unit. 

And hopefully I can also arrange my PICC line remove today too - couldn't do it on Wednesday as the onco hadn't updated my notes to approve it's removal.  Gotta feeling they'll make me lay down for this one too as can occassionally cause patients to pass out when line removed from the heart lol! 🙂

Wishing you the very best for today and will be thinking of you when I ring that bell!!

WE DID IT 💪🎉 WE ARE WARRIORS, WE ARE SURVIVORS WE ARE FIERCE WOMEN!!

Love and hugs xx

Sam xx

Gelbel
Member

Re: February 2021 Chemo Starters

Thanks @Kaz11 - got tears streaming down my face as it is going to happen. After bloods, i dropped in on the ward to speak to the charge nurse who did my observations and were happy with them. Woke up this am and my temperature is ok... though I'm still not 100%, I'm not far off.

@CrazyCatLady - was telling hubby about your amazing outcome yesterday and was blubbing as I told him.

It's so lovely we're on that final assult together - I know some have a way to go yet but we're doing this.

I'm going to be a mess today. I wonder if this is the reaction to the news I had cancer I never had?I

I've felt so bad I haven't been able to get the thank you gift nor card I planned. I'll have to get and organise when I go for my rads planning.

I'm off cry big style on hubby.

Love to you all.

A very soggy AnGELa xx

Kaz11
Member

Re: February 2021 Chemo Starters

So ladies first and foremost absolutely delighted for you @CrazyCatLady for getting such amazingly brilliant news.  I read your message just as I arrived at the hospital today so that gave me a lift.  Massive hugs to you absolutely fab!

@Gelbel hope you felt a bit better today and fingers crossed you get the chemo.  Will be thinking of you tomorrow.

 I am now pretty burst after today.  My bloods were fine so got chemo 9 of 9!  How good is it to say that.  Was a bit teary on arrival as the nurses had decorated the room I was in and I was so touched.  I also gave them wee gifts and they were all so chuffed it gave me a nice feeling.  They all said they wanted to give me a hug but good old covid meant that was a no go unfortunately.  Such a shame as I so love hugs!

Used the cold cap as I thought I may as well finish what I started.  Turns out the cap I had last week wasn’t working properly and is now in for repair so that explains a lot from last week.  One of the nurses who had not seen me for 2 weeks said she could see a real difference in my hair.  Long way to go before it is even half decent but it’s reassuring to see it coming back in albeit so silver it makes me look about 70 instead of 55 ?.

So the flag is now planted in the ground after climbing all those mountains @Gelbel .  Your words really boosted me and now it’s your turn.  Go girl tomorrow- one final push and you are over the chemo finishing line even if like me if felt more like a crawl.  The same goes for everyone else - you are getting there with the chemo.  Go us!  What a journey chemo has been.  Has felt like a marathon.  In February the 

Got other appointments today so back on 16 June to get portacath removed, then rads 21-25 June.  Have to expect a lot of tiredness after that.  Got prescription for Letrasole to start after rads (to take for 7 years letter says) - jeez.  I knew it was long but seeing it in black and white caused a sharp intake of breath!  Have then to fit in a dentist appointment ahead of bone strengthening drug - Zometa on 22 July.  Apparently this will make me feel dreadful for a few days (will feel like being back on EC!) but only the first time.  Then onco follow up early August.

Now off to have a bath then bed.

love and hugs

Kaz11 x

 

Gelbel
Member

Re: February 2021 Chemo Starters

Sam, that is such brilliant news. I am chuffed to pieces for you. What an absolute relief. Top news on the Dox being reduced too - good decision if its just a tick box exercise.

I feel a bit better today - in a might make the shower and lie on the sofa kind of way. I'll be going in for bloods later - they called at 20:45 to say I'm having the full set and depending on the results might need a chat with a doctor ahead of tomorrow's planned chemo. Seems I should've been followed up too not just left to it if I felt grottier... and they wonder why my pulse is racing which is causing concern. Hello, I'm quite laid back but didn't tell me what was going on, 5 hour wait for the results, 3 bourbon biscuits is all I ate on Monday, chemo since Feb and no exercise since 23 December (I don't walk and the weather's been so bad the bit I've done is not worth writing home about) is taking it's toll. I've put on 3-4 kg from eating beige as a reaction to steriods.

TBH forgot to mention Monday's might not be my post-chemo whoozy day but I know it's my least well day if that makes sense. 

@Guest user that's great news about the rads planning and appointments being so short - it's just all the travelling time involved. I'm lucky that I'm a 15-20 minute drive away from the hospital so it's not too bad. Hopefully an hour's round trip. What moisturisation regime did they recommend?

Right, I'm off for a dippy egg - starving as I've hardly eaten since Sunday though I've got cravings for tomato sandwiches with salad cream. 

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady I am over the moon for you! That is wonderful news and as you say, makes the sacrifice of going through a very tough chemo worthwhile. The surgery for me really was a good experience so I wish the same for you. Siân xxx

 

 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hello my lovelies!!

I have had the most fantastic news.....spoke with my onco on Tuesday and my MRI results are in.  Firstly my heart MRI showed improvement (from 55% to 63%!) so was not expecting that!  Secondly, and more importantly, my breast MRI showed NOTHING!!  So was told by onco that my tumors have now GONE!!  YAY!!  I cannot tell you how happy I was - cried me so many happy tears.  All that worrying was for nothing and looks like I have got the PCR result afterall 🙂

Onco also said that optimistic that after surgery they fully expect me to be cancer free with a NED outcome.  As no evidence of lymph involvement, also said that if there were any cancer cells in the nodes, the chemo would have blitzed these too!  Cue dancing in the kitchen and tearful calls to hubster, my mum and my dad 😀

After all that's happened for me on the wonderful TCHP regime, it has actually worked!  Haven't put myself through all of this for nothing - oh and they are reducing my dose for my last docetaxel to keep the neuropathy at bay.

Have also already got my surgery planning appointment booked in for next Friday, so it's all gathering speed - all being well surgery will be 3-4 weeks after.  Then the next anxious stage of waiting for pathology results coming in (but now not going to worry too much as it's all looking very promising!)

And for another chuckle moment - I'll be dropping off my work laptop to one of the other admin people as they are having to isolate and WFH due to her daughter and husband testing positive for covid.  She wanted to know my password but, guess what, completely forgotten it!  Not logged on for around 4 weeks and after having used the laptop almost daily for a year, could only remember the first part of the log on password lol 🙂  So had to message my boss to find out the last bit of the log in - blooming chemo brain d'oh!!

Good luck for tomorrow @Gelbel and hope you are feeling better after have such a rubbish time with your reaction and your bloods are OK for the last one!  We will be ringing that bell together!! And well done too @Kaz11 - whoop whoop to the end of chemo 💪🎉 xx

@Linda1967 I can't offer any advice on recon as I'm just having lumpectomies, but looks like you've got some good advice from the other ladies on here.  Hope you can work you way through all the options and make your decision....it's so confusing when they give you so many choices but I'm sure you will come to the right decision for you.

@Teagold glad you had a 'normal' night out and hope you managed to catch up on your sleep after the joys of the steroids!  Good luck with your plastic surgeon appointment too.

@Rainbow70 good luck for your last 2 chemos....so very nearly there now 🙂

@hopeful1974 wishing you all the best for your TCHP treatment and hope it works as well for you as it has for me! 

Hope you have all been able to enjoy the lovely warm weather and sunshine....even though I lathered up in sunscreen and wearing my floppy hat, and was sitting mainly in the shade, I have still managed to catch the sun (but not too badly!).  Just keep my legs out in the rays so they don't look like hairy white milk bottles lol 🙂

Take care all of you xx

Love Sam xx

hopeful1974
Member

Re: February 2021 Chemo Starters

@CrazyCatLady That is very helpful, thanks Sam. I am hoping that as they are starting on lower doses I may not lose as much. I do find it bizarre that my oncologist has said that TCHP is not as emetic as EC, but if that’s true, then I can take courage as I only lost about 1.5kg with each round of EC. I really was forcing myself to eat but that prevented too much weight loss. 

I will just have to see what happens with the first round, I guess, and my oncologist has promised to review it with me each cycle (I only actually saw him once during the accelerated EC and the other times I saw other oncologists). 

Thanks again for replying. Siân xxx

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 - aww don't worry too much about it.  My weight started to come off after diagnosis just before Xmas last year due to stress and worrying so this was all before any treatment started.  So by time my chemo started I was down around 14lb which for me was an absolute bonus as I'm in the obese category (I'm too short for my height!).  Once TCHP started I did lose around another 10lbs by cycle 3 and by end of cycle 4 lost a further 6lbs.  However as cycle 5 was much kinder to me, I seem to be putting all I've lost back on as I have been able to actually eat!  My issues for the first cycles seemed to be the loss of appetite and the lovely chemo trots, so was falling off at a rate of knots.  For me I need to loose the weight - something I've struggled with all my life unfortunately.  Having to take a steroid inhaler for my asthma does not help.

My diet is restricted due to my food allergies too, but carbs, protein, dairy and garden veg are all OK for me - just the healthy salad stuff I have to avoid, so never brilliant for me when I try to loose any weight.  

But as I am larger to start with, then it follows that I can lose more at the beginning as generally I find that people who carry more weight do loose a lot initially and then it settles down.  If you are worried then I'd speak with your team to see if there are high calorific supplements you could take (ie, fortisip or similar).  

So now as I approach my last chemo tomorrow, I am only 4lbs less than when I started chemo!  For me I wish it had stayed off, but I do understand your worries about losing too much as you are obviously already at a low weight.

Be kind to yourself when you start - your appetite is likely to be rubbish so I found things like porridge and 'bland' food was OK (ie, pasta with chicken & sweetcorn was a go-to food).  The conflict was the steroids made me hungry but the loss of taste meant nothing tasted quite right.  You will find what works for you, but please don't worry too much about the weight loss - for me it's back so all being well the same will apply for you too xx

Good luck with it all and please do speak to your team about your concerns, particularly if you have a rough time with the appetite, trots and generally being too tired to eat.  We need to keep our bodies fuelled so we can fight our battles xx

Take care xx

Love Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

Thanks for your good wishes re tomorrow.  Like you I have felt more tired and achy as the  Taxol has gone on.  On Monday night everything was aching - legs, arms, even teeth!  I think that is also a menopause symptom my friend tells me but it’s hard to know if it’s down to that or the chemo.  I tend to think it’s the chemo.

Not long for you to go now either on the Taxol so get the flag ready!

The CT scan seems to be a standard thing.  It was mentioned in the booklet I got with my appointments.  I had to lie on a hard bed (their description not mine) with my hands above my head.  This is where the post surgery exercises helped.  They put pen marks on me and lined me up.  Then I went back and forward a couple of times through the scanner.  The machine was quite noisy.  They then put the tattoo marks on me so that I will be lined up properly for the beams when I get treatment.  It will be a different machine for this that moves round you they said.  Was told treatment around 2 minutes each time and whole process about 12 mins from start to finish each day.  They also said it would be much easier than chemo.

 I was in and out in about 20-25 minutes today.  Just a bit of a round trip for me each day as this hospital is a bit more awkward to get to but that can’t be helped.

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone 

Not posted for a while but have been catching up on all your posts. I’m going to read through all posts  and reply.  
@Kaz11  will be thinking of you tomorrow for your last chemo and you have done amazing sticking with the cold cap too . Thats good you have had your planning appointment already for your radiotherapy. I’m still waiting for my appointment to come through . Does the CT scan have to be done to line you up for the treatment ? 

@Gelbel sorry to hear you have not felt well.  hope you feel a bit better after a restful day today and tomorrow ready for your last chemo on Friday , will be thinking if you too . Found  your words regarding putting the spear in the ground very moving and so inspiring .. so Thankyou 💕 . Keep resting . 

I had my 7th paclitaxal yesterday so 2 more to go finish on Monday 14 th June .  As weeks go on feeling more tired/achy and very very anxious. Can also relate to the wind issue and bleeding nose .also have put a few pounds back on . Hb dropping was 94 this week so hopefully should last the next 2 weeks was told don’t transfuse unless under 70 !!. 

hope you are all managing to enjoy some of this glorious weather . 
love to you all 

🌈xxx