Breast Cancer Now Forum

Morning ladies, I hope I find you all as well as can be expected. Me well I had my first docetaxel chemo yesterday, thankfully no issues on administration and feel better today compared to when I was on FEC, but what an awful time I have had re the oncologist! The chap who calls me is Eygptian so not easy to understand on the phone, the call Monday did not fill me with confidence. Firstly he got my appointment wrong told me I was visiting the hospital on Tuesday (I was in Wednesday) so I asked him if he had the right women (he had failed to ask my name and date of birth when I answered the call) but apparently a day or two each side is not a problem, it is for me as it is a 50 mile round trip! The conversation filter in my brain then switch to off.  I decided to ask a few questions . First one being how will they test that all my treatments have worked, I was told no scan would be done and that as my therapy has worked for millions of other women with my cancer, it was removed in good time and my oncotype score was low I should be fine hardly reassuring, and why chemo then??? So Dr how much radiotherapy will I need? 25 sessions apparently...most others I know have had 15 but I can stay free of charge at the hospital if I want to, for a an appointment that short jog on although it will take me longer to get there and change! I then get to my chemo session, running late, nurse comes out to apologise and asks what drugs I have taken, turns out I have been prescribed the wrong ones (they'd given me the ones for FEC), so had to have an additional infusion of steriods prior to chemo, so what was meant to be a 2 hour max appt turned into 5 hours, I did again turn the conversation filter to off and the nurse got it...patient liason service has been contacted this morning as I am loosing faith and more worryingly trust. What this space!! Much love Sue xx ... View more

@veestar Hang in there lovely we are all here for you. I can totally sympathise with you though I have my 4th round this coming Wednesday new drug for me to docetaxel (been informed it is the less pleasant of the two they prescribed for my treatments) I am dreading it and fed up with the hamster wheel of treatments and picc line flushes (especially the chemo: week or two of feeling like shit follwed by a week of relative normality only to go back down again after the next dose) really messes with your head, I am with you at that wall. As to why the different drugs I do not know maybe its something I should of asked about to, I just want to be reassured all this crap they are putting into us is doing it’s job, a question definitely for the oncs call on Monday. The only thing that is keeping me going is the end date, and the realisation that at some point this shit show finish. Also hoping to God radiotherapy is a little kinder. Sending you lots of love and hugs xxxx ... View more

Thank you for your support re Christmas @Magenta59 and  @Mrsmillie   😀 and so sorry to hear about your cat, I had to let my 11 year old rabbit go over the rainbow bridge a week before I started chemo and I still miss him, I doubt like you though I will replace him as he was so unique. @veestar so glad I made you laugh...it's often what I do when it comes to family dynamics!  😂  In answer to your question yes I have had the odd tipple (prosecco) I was warned it would have more of an effect on me (I always was a cheap date anyways, I'm normally the one who ends up driving) and boy did it, only had a quarter of a normal small single helping bottle and it went right to my head, had to have the rest in stages with orange juice...took me back to my teens  😂 I will be raising a glass of sparkling mineral water Christmas day as at the moment it's all I can face, my taste has definitly left the building after round three! Sue xx     ... View more

Good morning lovely ladies, From comments on here despite most of us being half way through this shit show it appears we are all struggling. @veestar I can totally feel your pain regards feeling wiped out after chemo, I felt like pants after my third round last Wednesday, definitely took a couple of days to get back to some sort of normal, what ever normal is now. I’m back on the filgrastrim  injections which I hate. They make me constipated…four days no movement…not good when you also have a prolapse! I will be having a word next appointment for sure. @aliess  hope you are on the mend and on top of your infection, been thinking about you a lot xx Getting fed up with all the talk about Christmas, don’t know whether you are all finding the same I have a round two days before and have told relatives they can all bugger off if they think they can come a visiting, some are understanding others are predictably selfish, never thought chemo would be the excuse I would use to get out of seeing my monster in law on the 25th Dec. One thing is for sure you certainly find out who can rely on when going through this shit as you’ve probably gathered she is not one of them 😂 😂 . Anyways back to another day in paradise, my latest dilemma what to have for breakfast which a. will be fibre rich and b. More importantly I can taste. Lots of love. Xx ... View more

Morning ladies @Asharia the photo below shows how much hair I have left, my husband now says I look like Max Wall! I was not given the option of using the cold cap and still have hair everywhere else on my body. Head hair is still shedding but very slowly. Third round Wednesday so hyped for that….not. Hope everyone manages a bit of normality this weekend, I am just off out with my boys for a bit of a walk whilst it’s quiet around here (Glastonbury) Sue xx ... View more

Morning ladies, I trust I find you all as well as can be expected on this journey we are all enduring. @Magenta59 hope you are feeling more yourself after your bog-trotting ...that brilliant expression really summed up your situation aptly!  @CT2021 I have to say good on you ditching the cold cap, it should make you chemo sessions shorter (a small blessing) I was not allowed it but tbh now 80% of my hair is gone I've accepted it ... friends have now likened me to Max Wall and the family call me the Merry Monk as for some reason I still have side bits and a fringe remaining! 😂 I have a daily routine of sorts and find it helps, but then I have always had keep days similar as my youngest (17) is autistic and this helps him remain calm and stable (proud of him as he has dealt with this major change in our lives very well, I can't be that bad a parent after all!) @veestar re the filgastrim side effects I get really achy bones especially around my shoulders, my teeth hurt bizarrely and it zaps my energy for a couple of days, hate it! @louby_lou69 sending hugs to you my lovely, I know exactly how you feel, I'm on FEC every three weeks (my last one of these is next Wednesday, I'll be half way through then like most of you, I start the dreaded, I've been told this is tougher, Docetaxel for 3 more rounds) results in a sore mouth, indigestion, hot flushes ...pants!!! @amy46 yep I am with you everyone is gifting me herbal teas, sugar free sweets and anything containing ginger all of which I am not a fan  😂 Although someone I haven't seen for a few years but is a facebook friend kindly sent me two chemo beanies yesterday which I thought was lovely. @aliess hugs to you to my lovely, hope you get some positive results today and manage to get out and about, wish I lived nearer the sea. I will give you a shout if I am in your neck of the woods in future hopefully I'll be there next May for a Pet Shop Boys gig 😃 I managed a ride out on my bike yesterday, a 5 mile round trip to the nearby Clarks village, first thing in the morning so very few were about, I am not allowed near a supermarket but can go shopping in smaller retail establishments with caution mask and gloves, Seasalt had gone...I was gutted... as I loved your snoods Ali but I did manage to get a couple of plainer ones in Mountain Warehouse (they have at present become my headwear of choice) I did feel better for it. I hope to get out for a longer cycle at the weekend with my eldest son (23), we used to do 15 to 20 miles rides before this  💩 show. Right I'm off to see what delights my middle fiddle has purchased for us all as I sent her to Tescos this morning....you give them a list but they always shop off list and you never know what you will find in the bag to wipe down (covid still high here) 😂 ! Hope everyone has a good a day as they can. Much love Sue xxx ... View more

Hi all,  Sorry @aliess I did do a reply to you at some unearthy time of the morning Thursday when sleep was evading me but for some reason it didn't post! @Lu_B so pleased for you, onwards and upwards now my lovely. Take it radiotherapy is not as bad as chemo? Have you used any creams or have any routines to keep your skin in good condition whilst undergoing this treatment, as it would be good to know for the future I too have to undergo this treatment post chemo. My chemo is the gift that keeps on giving, I am now getting the most awful indigestion 24/7 for which more meds have been prescribed. In my 'good' weeks atm, preparing for the next round which will no doubt take me down again, I am finding the  filgrastim injections the worse part of my treatment, they make me feel like shite! Anone else suffering with these? I should have been at a Rick Astley gig and a stay over in one of my happy places Bournemouth last night with my other half, but we all know things like that are on hold for us all. I did throw my toys out the pram a bit yesterday thankfully my family and friends understood and supported me through it. Live music is my thing, my last gig was February 2020 so really missing it, had to cancel 3 (all postponed because of covid) thanks to this shit show hopefully I'll make it to the Pet Shop Boys in May next year...a girl can dream!  Lots of love Sue xxx ... View more

Morning ladies @louby_lou69 looking good lovely, and that scenery looks gorgeous. I think I might have to join you in braving the shave I didn’t realise quite how irritating loosing your hair could be! Loads of mine fell out yesterday, I will admit I did find it upsetting, and like you I am finding it uncomfortable at night even when I go to bed looking like Norah in my hair net! Is anyone putting anything on their scalp in the way of moisturiser? My sis sent me some moo goo products, their oncology pack, wondering if anyone else has tried this? I keep asking the nurses but no one gives me an answer. No heating on here yet and I am still sleeping with the windows open! Hubster is on our sofa bed downstairs keeping away from me as he has a cold, every chemo so far one of the buggers in this household, apart from me is poorly. I have to get friendly with the anti bac and bleach and keep my distance. You would all laugh though I awoke in the early hours to discover a worrying damp patch in the bed ….thankfully nothing from me the hot water bottle I used to ease tummy ache had leaked 😂 😂 ! Turning a king size mattress at 3am did not do my various veins (a badge of honour inherited from pregnancy) any favours! Four other people in this house and not one of them heard me! 😂 😂 ah well here’s to another day in paradise, start the injections today to boast the bone marrow production whoop de do 😂 😂 😂 roll on next Wednesday when I’ll be drug free for a few days. Hope you all have a fab weekend. Lots of love Sue xx   ... View more

@ksg123 I am on FEC-T, second one today went better than the first, I am home now and not feeling so zonked out but the weird taste is already back in my mouth  😳 I know the next few days will be playful to say the least, came back with yet more drugs, I reckon I'll rattle by Christmas and probably give Santas reindeers bells a run for the money  😂 I also had my wig fitting today and decided upon Erika, she a bit lighter and straighter than my own hair but that is probably a good thing. Told the ladies the only Erika I know of was Erika Roe the lass who bared her chest at a rugby match back in the eighties, told them that as my boobs are not very symmetrical post op that will not happen anytime soon  😂 Autistic son didn't seem to freaked out by it either which was a bonus.   I was in with a lady who has terminal liver cancer, only having chemo to help extend her life for fives years, I did make her giggle (I can be quite out spoken, what you see with me is what you get) especially when I was offered another one of the NHS delicious cheese sandwiches on white bread! Yuk!! Been there out of desperation once and never again!!! I had the hindsight to purchase a BLT from the hospital M and S food which made them all well jel. Helped the chemo nurse I had was fab and was willing to chat, as some don't makes the experience a little more bearable. Anyways hoping I'll sleep well minus any hot flushes, look after yourselves all.   Lots of Love Sue x   ... View more

@ksg123 welcome my lovely.  I'd never written anything on a forum before either, and yes I find it good to talk to those going through the same experience, My chemo journey started just after you on the 29th September, second one today, if  it is anything like the first like you the week following I know I will not be that great, me and the recliner chair will once again become bessie mates  😂 My kids are just a bit older than yours  18, 21 and 23. They still worry and yes take the mick out of me especially now I am loosing my hair ...thank heavens for our sense of humour! Lots of love Sue x ... View more

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

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

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

@louby_lou69 my maternal grandma used to wear them to, I remember a blue one worn at bedtime to protect her curls after her weekly shampoo and set ...bless her...she was fab and I miss her even though she's been gone 20 years, she lived to 98 though. Thank you for your kind words, we've all got to remain positive and support each other  😊 I am thankful for all you lovely ladies on here, we are all in the same boat and this journey we are on can be a very lonely one, especially in covid times . My humour is helping me get through this...apologies if it's slightly warped  😂 . If your head is itchy you are probably on the verge of shedding as my scalp today has been sore and I've been wanting to scratch it, but I donned a scarf to prevent myself from going there. Dreading washing it tomorrow, and cleaning the shower drain after (with gloves on don't panic!). I've been keeping what's fallen out, I've decided to give it a burial/funeral in our garden, closure for me I guess. Husband thinks I've lost the plot. Doing this as I have a suspicion (and knowing my luck) it'll grow back grey and curly like it was in my teens..my worst nightmare!! xxx ... View more

Norah Batty eat your heart out Hello Ladies,  Well it's finally starting to happen, I am shedding more hair than my ancient rabbit used to, and he moulted like a good un (god rest his soul). The hubster and kids unbeknown to me last night had a "find the hair" competition at the dinner table  😂 , so I am thanking the lord that I used to ride horses (we are talking years ago here) but had the hindsight to keep the hair nets, this is no how I looked to do the sandwiches and breakfasts this morning....very Norah (no wrinkly stockings though!). Round 2 Wednesday and I am containing my excitement, but atleast it will be another bitching (being polite here) one down. Onc just rang me (or rather one of her minions), not that I could hear him very well (he had an accent which made it harder to understand what he said on the phone), I think he said he was prescribing mouth wash and more drugs to help with the ensuing indigestion and constipation (honestly never thought I'd be putting this on a post on the net  😂 ). Wet and horrid here today in Somerset, I'm off to do some baking in a bit, so that my tribe have stuff to eat when I am feeling pants and have to rest post chemo. Hope every one has a good week. Lots of love Sue xx ... View more

Morning @Lu_B, @veestar and all my other breast friends, I still have hair but I am expecting it to start shedding after next weeks second round. I have a wig fitting beforehand and it will be interesting to see what they come up with as suggestions. My hair was nearly to my waist in length before I had it cut into a bob prior to my first chemo so I may have choices...who would think that would ever be a thing we would have to consider in life? Already told the other half if it gets itchy I may have to borrow his clippers. @veestar hope you feeling as well as you can in the circumstances today and not so spaced out, sending a virtual hug xx I have to take  Filgrastim. Injecting yourself is another joy of this that I was not expecting, husband did the first few then I had to do the rest as he was back at work. First one made me feel a bit rough and achy, to the point where I took the wonder drug (in house joke here as it gets mentioned every hospital appointment 😂 ) paracetamol (I am not normally a pill popper) but there after all fine, although don't know whether that might have been responsible for my sore mouth, I am going to check with Onc next phone call (Monday) as I was on steriods 2 days prior. Walking about with a syringe in my pocket was never on my agenda either but you need to warm it up a bit as apparently injecting straight from the fridge can be more painful, like a bee sting I have been told by friends who are the other side of this shit show. Anyways Picc line flush today...I am containing my excitement!  😂 Hoping the bitch of a nurse (large lady no humour or personality) I had last week either isn't on duty or does not put the dressing on to tight, else I might have to have a word as it's been bloody sore since she did it last week, could have rang them but tbh I could not be assed to another hour and quater round trip just to get it sorted. Wedding anniversary tomorrow...26 years (29 together). Thank God he is in my life, hoping maybe we can get out for a coffee and cake somewhere out doors to celebrate.  Lots of love to you all Sue xxx     ... View more

Hi @Magenta59  and all you other ladies, Like others have said wobble away, I have found the mental side of things harder to deal with than the physical side effects of treatment, and I hope you hear something soon, fingers crossed for tomorrow. xx I had a bit of a melt down Sunday, started to feel trapped in my own body, felt like I was being held hostage by this blasted disease, everything you do you have to question or question someone else, it's so annoying. I like to get out and about but living in a tourist/alternative town (Glastonbury) this may not be wise, just to many people about at the moment, covid cases here are also high think we are 11th from the top in the country.  Also had issue when I went to get my flu jab, they questioned whether I could have it , I told then it was okay as it was written as such in my notes, eventually had it, only to them discover in the depths of another information booklet that I should have left it a couple more days into my current round. I'm okay today and taking it easy so think I have got away with it. Another frustrating issue was I the inability to get hold of anyone at the hospital to check this, 20 mins hanging on the phone to get through to the ward (who take calls in the evening and at weekends) only to be told to ring again in the morning. Anyone else notice how short staffed hospitals are??? Flipping hope I don't get an infection in the future out of hours if that's the response time!! It will get mentioned next oncologist call (Monday next week). Anyways lovelies, here's to another week in Paradise. Lots of Love Sue xx ... View more

@louby_lou69 I have found the same first few days are crap, not helped by meds I have to take for a week following treatment, they make me feel like pants, but at least we know what to expect now and can mentally prepare for it. I am not allowed in a supermarket oncologist told me to avoid them and to basically sheild (COVID cases are high here atm) so it’s down to my other half but my lord I do miss it. Hubster rarely shops off list, thankfully my eldest son is a shopper so when he is about at weekends I get treats 😂 😂 😂 Jigsaws and maybe a walk on my agenda today to although my 55 year old right knee seems to have joined your hips and it’s giving me pain. Sue xx ... View more

Hi @veestar ,   Mine is three weekly and always the same day but not the same time. Must admit I asked for a schedule before it all started as I work for my self employed gas technician husband and this time of year is our businesses busiest time, it has meant he can still work (thank the lord as otherwise I do not know how we would survive financially) I also I have a son with ASD and my chemo day is his only whole day at college which means I do not have to worry about him whilst receiving treatment. Hope this helps.  How is everyone doing? Holding up? Don’t know if I am alone in this but I have  found I am eating for England! Breast cancer survivor friend has told me it’s the steroids, the plus point to this (never thought I’d be writing anything positive about this shit show we are all enduring 😂 😂 😂 ) is that I don’t appear to be putting on weight 😃 . Some foods I love though taste metallic and go on the avoid until ‘normal’ list. My mouth especially my tongue have been really sore as well so crisps and toast have been put on the back burner for a while. From memory think Tangtastics were mentioned in an earlier post did they taste the same? As I love sherbert fountains but had one yesterday and it was like eating chalk with a twig so again something else I’ll now avoid 😂 😂 Enjoy your weekend ladies, much love Sue xx     ... View more

@louby_lou69 Wow just wow lovely…. 100 miles! …. let me know too and I’ll donate also. You must be one fab teacher, it’s so nice to hear your pupils and parents are supporting you accept the praise my lovely and draw strength from it xx I have actually managed a few household chores today and prepared a meal for my husband to finish off cooking, go me ha ha ha, but once again I’ve taken to the recliner this p.m. Mind you I had to deal with my youngest son college this am, as he has ASD and was not told what was expected of him on a NCS course they had put him which zapped some of my strength …. I am hoping for no fall out from that when he gets home later.   ... View more