Hi Helen, maybe you are losing weight but also gaining muscle?
xx
Hi all, how’re you all doing? Sound perky, which is good.
How’s the Tamoxifen going Lynn? Hope you’re lucky and don’t get any SEs. Are you still glowing at night Helen? Hope they soon settle.
I spoke to the onc reg today and she seems to think that any side effects will rear their ugly heads within the first two weeks of taking it. I was also a bit worried about taking it, simply becuase my hormones have been a pain for years (she seems to think this is significant enough to have consider it a ‘cause’) She did agree that if I didn’t get on with it, or if my periods return and are mental as before I could be referred for hysterectomy.
I had planning today - anyone else had the blue tack, ball bearing thing? It made me laugh so much when they told me what they had in mind…for some reason it tickled my sense of humour. I start rads next Wednesday which is good, but I really hated feeling like a bloomin patient again!!!
How are all your hairy bits? Hope that you are all sprouting fiercely 
Lotsalove to you for now
Loo
xxx
PS - Should I be worried. I know they said radiotherapy will be tiring, but I only had my planning, and am ready for bed! Pooped with a capital P and its just 7pm!!! LOL x
Hi All,
Loocie - you’re sounding perky yourself, which is great. I didn’t have the blue tack and ball bearing thing…what is that?? I had the 3 dot tattoo. They put a ruler on my sternum first…I felt like a human spirit level LOL! I start a day after you Loocie on Thursday - I’ve had 2 1/2 weeks between planning and starting which I thought was quite a long time.
Tamoxifen - taken for 1 week now. Was ok for 3 days then felt unwell Sat night, fluey, achey, hot flushes, cold chills. Had my bloods checked by the GP which were borderline ok so it was probably the s/e from the Tamoxifen. Have been better since that 1 night blip. Just have mild-ish s/e’s, swollen ankles, light headed, and today I woke up feeling muscle achey. If it doesn’t get any worse than this it should be ok.
Hair is growing back around 2mm - but it’s a start. We live quite near Brighton which is really cosmopolitan where anything goes. I reckon if I wore my daughters laced up punky boots, put a stud in my nose, whipped off my hat I would blend in no problem - no-one would bat an eyelid!! The armpit and leg hair can stay away but wouldn’t mind my eyelashes and eyebrows now please!
Good luck to Babs and Anne for round 2 on Thursday - LOL sounds like you are going to do a few rounds in a boxing ring (well actually thinking about it that’s what chemo feels like LOL).
Lynn xx
Lynn, thanks for your good wishes. Am having to have bloods done again this morning as came back on the low side yesterday. Hoping they ok so can get 2nd cocktail over with, fingers crossed.
Best wishes to yourself for your rads and hope se’s stay doable.
Anne xx
What on earth do they do with blue tack and ball bearings? I had lots of measuring up with rulers and drawing of lines with felt tip pen and then the three tats. My boob is sooooo itchy it’s driving me nuts. I peeled all the scabby bits off my nipple yesterday which gave great satisfaction but didn’t help with the itchiness - I am hoping it will die down over the next week. It’s all tender but doesn’t stop me doing anything (other than lying on that side in bed and running anywhere too fast). I’ve been exercising at the gym ok but not swimming yet.
Tamoxifen going ok apart from the hottish flushes - disturbed sleep is the worst problem. Got a cold and lost my voice but don’t think I can blame that on the tamoxifen. I had one day of complete depression on Tuesday - this is really unusual for me then I discovered that I had forgotten to take my venlafaxine the night before and wonder if this is acting as a bit of a happy pill and disguising that I am actually depressed underneath. It’s such a small dose that it shouldn’t have this effect but it’s happened twice now so I am beginning to wonder. I dread to think what’ll happen when I come off them permanently.
I do find that the chemo brain has got worse - I really cannot concentrate or focus on anything properly, my mind is skipping all over the place, I feel really dippy. I can’t multi-task anymore and really not sure how I’m going to function in a work setting, I feel particularly stupid. I really hope this is not permanent as it is really annoying me but I think it’s the lack of oestrogen to the brain, and that is now permanent so might have to start thinking of myself as literally a dumb blonde now.
And still not losing weight, but looking forward to going snowboarding next month - will have to buy a whole new set of snowboarding clothes which I can ill afford as I can’t fit into anything!
good luck all
Helen.
LOl - the blue tac and ball bearing thing was quite interesting really, but it just made me giggle. When I walked into the CT scanner, there was a radiographer rolling out a thin ‘sausage’ of blue tac - I couldn’t belive my eyes, but as a hard core NHS worker didn’t think too much of it. We have to get pleasure into our working days in strange ways! Anyhooo…once I was bared for the world to see they explained that they use blue tac to mark the incision areas and ballbearings to mark the areas they intend tatooing as neither scars nor ink show up on the CT scan - this way they can tell that the lasers will be focussing upon the correct area, and can make any necessary adjustments without having to keep re-scanning. All clever stuff really I’m sure people would probably pay good money for that kind of malarky.
LOL - would love to see you ‘punked’ up Lynn, as you say I’m sure you would blend in nicely. I seem to look like an elf or a Romainian gypsy when I get dressed now. Not too sure whether its the clothes which are in fashion (baggy tops with jeans or leggings tucked into boots) or the Buffs I wear, but it’s always a bit elfin looking! Like you I would love my eyelashes back (was more worried about them than head hair), but eyebrows I’ve conquered. I use eyebrow powder from Body Shop but mix it with a little water to make a paste of it. I also use an eyebrow ‘paint’ brush from a beauty salon and it works really well. The shape of the brush means that the eyebrows go on really easily - no need for a degree in art
Sounds like the Tamoxifen is making itself known, I really hope the SEs calm down for you and you start being able to function again Helen - I’d find what you are going through really frustrating too. I feel a bit more confident about taking it, but not relishing the thought of filling myself with more chemicals. Enjoy the snowboarding - where are you going? Wonder if there is a technical term for boob-ich?
Keep strong Babs and Anne and anyone else I have missed out, you’re doing-the-do and will soon be out the other side. I wont say post chemo is a walk in the park as it is frustrating to continue with the mangey bits like fatigue, nails and hot flushes and people’s expectations. They think that once the chemo stops you should be back to normal again - but I’ve found that it will take time. It’s glorious though when you do something you couldn’t do the week before, or realise you’ve been up and about all day Bit like uncovering little gems.
Right…off to get some inspiration in the kitchen - anyone else still off food?
Lotsalove to all - sorry for the long blather!
xxx
Hi Anne (Richo)
Just wondered how you got on yesterday. Did your bloods kick in so you could have next dose? I hope so.
I had my 2nd FEC and asked them to change my tablets however instead of changing them they gave me extra which is Cyclizine Hydrochloride and this is supposed to suppress the part of the brain that makes you feel sick.
Must admit didn’t feel so bad yesterday however once again I was sick last thing at night when I brushed my teeth. Didn’t mind that too much as it was only the once and am now okay again. Slept really well.
Still feel woolly headed but I guess that’s all part of the treatment. Am managing to eat more this time although I am still taking it steady.
Must say to the other ladies that the tattoos sound interesting, is it permanent or does it fade in time. Is there any other choice than tatooing as I am allergic to inks such as rubber stamp inks etc. I shall have to ask nurse/Dr when my time comes.
Keep well and hopefully all your treatment and various s/e’s will soon be over. Roll on the warmer weather.
Babs xx
Hi everyone,
Babs, Managed to have chemo and was very nauseous last night but thankfully not actually sick. Feel a bit off today but just taking it easy. Have been for injection in stomach to aid white blood cells, so hopefully no problems next time. Glad you feeling not too bad, its just something we have to get through.
Thanks for your thoughts Loocie, glad things going well for you.
Take care everyone out there xx
Anne
Hi All,
Babs and Anne - well done, round 2 over!! Hope the s/e’s are minimal.
Babs - the tattoo’s are very tiny, pinhead size, which you can barely see, 3 dots, one each side of the chest wall and one on the sternum. I think it is permanent but like any tattoo it will fade. It is a type of dye or ink so you may have to check that with the radiographers particularly if you are allergic to inks. They used to use marker pens - which I think are still possible but they don’t like using them as the marks do wash off.
Tamoxifen update - mild s/e’s, not too bad - slightly light headed, mild muscle aches in the mornings, slight fluid retention, thirsty, hot flushes. But all in all not too bad - phew!
Hope all is not too bad for one and all
Lynn x
Hi Ladies,
Glad to hear everyone is doing pretty well, especially Babs and Anne having FEC, think I would say I preferred TAX!! I think the nausea was the worst thing plus the woolly head.
I am 3 weeks past my last TAX and hopefully over the SE’s apart from a slight runny eye still which maybe drying up a bit and my nails are still peeling off.
Helen and Lynn when exactly were you told to start Tamoxifen, I’ve been told between 2 and 3 weeks after last chemo. I am due to go away for a couple of days next weekend to a trade show and don’t want to feel yeuchy. It will mean that I am about 4 1/2 weeks post chemo, do you think that will matter?? Because the Onc ‘didn’t have time to discuss it with me’ I didn’t get a chance to discuss it with him.
Due to see Radiotherapy Doc on Monday to discuss Rads, don’t think there is a chance of getting to the Marsden Lynn, apparently they are getting a bit fed up with ladies being referred to them just for rads. Think I shall be back to Guildford.
My hair is about 2mm on my head, completely white so no change there. Will have to carry on with the hair dyes for a bit longer yet. I was so upset about losing my hair but can honestly say I haven’t missed washing, colouring, straightening etc. Eyebrows still falling out. No hair coming back elsewhere yet. Hurray!!! No shaving, waxing as yet.
Love to you all, keep smiling,
Jane xx
Hi Jane, I think we’ve all been told slightly different things about the Tamoxifen. I’ve to start mine on the first day of radiotherapy. I’m going to follow the tips of the folks here though and take it at night - is that what you’re doing too Lynn?
Have a lovely weekend ladies, lotsalove to ya
xxx
Hi JC
I don’t think there is a definite start date to tamoxifen. I was due to start mine a couple of weeks after chemo finished but I was suffering with such bad hot flushes the onc said give it a break until about 4 weeks later. When I saw him about then for the rads planning he said give it another two weeks break and then start. Eventually he told me not to delay any longer and I started the week after I finished rads, about 8 weeks after my last chemo cycle.
I really don’t think that a few days or a week will make any difference. I think I pushed it to the limit lol!
I take mine last thing at night with a glass of water. No side effects other than the mild hot flushes. Maybe some weight gain too, I’ve not put any weight on but I’ve not lost any and I should have. I think the lack of brain power is due to the chemo, not particularly the tamoxifen.
good luck,
Helen
Thanks Helen, good to know how you manage it
I know there are some mangey nails out there - mine are grotty too, although I’ve found a concoction that might help you? I’ve mixed some tea tree oil with vitamin E oil in an old hand cream pot which is wide enough to get my finger tips in. I ‘dibble’ (technical word for chemo patients only) my finger tips in the oil then massage it into the nails. It has stopped them from being all dry and flaky, and although a lot of them have lifted from the nailbed they aren’t actually coming off. I also file them (most days) and keep the shape rounded which helps to stop them catching. It feels quite oily to start with, but absorbs really quickly, so it doesn’t go over everything. Hope this is useful to you?
Anyhow, gotta dash, TV and setee is missing me - LOL well, I did do a workout (after a fashion) this morning.
Laters peeps
xxx
Hi Ladies
Anne, glad you managed to have 2nd dose although sorry you were feeling so sick. Hope it soon clears up for you. A tip I was given to help bloods is to have kiwi fruit and also to have an occasional drink of Mackeson which is rich in iron. I had one each on the last 2 saturdays before chemo and it seemed to work. Or maybe I just needed an excuse for a drink lol.
Lynn - thanks for info. on rads. tattoos. I will remember to ask nurse when time comes but as they are so small hopefully it should be okay. Pleased to hear you’re doing okay with hot flushes etc, hopefully as your body gets used to it everything will settle down.
Jane- glad your hair is growing back on your head albeit slowly. Yea, its good when we don’t have to shave or pluck isn’t it. Good luck with Rads.
Hope you all have a great weekend.
Love to all, Babs xx
Hi,
Babs, thanks for the hints re bloods, will give it a go. Still feeling rough today (not happy) seems to be a bit worse this time. Only one more FEC then is on to Tax (apparantly there are two different types and by chemo nurse said the one I would be having does not affect nails). Anyway thats a few weeks away, one step at a time.
Hope everyone feeling ok and having a good weekend.
Valentines hugs to all
anne xx
Hi All,
Just back from a short weekend away seeing my sister in Wales - great doing normal things again. Went for a longish walk - around 2 hours and had the best nights sleep since last September!!
Jane - I wasn’t specifically told a start date for Tamoxifen. I saw the Onc team 3 weeks after the last chemo and she sort of implied that I should take it around this time. I hesitated for around a week and then took it - so it was 4 weeks after chemo. I would say that 4 1/2 weeks would be ok but it might be best to give your team a ring to check. Like Helen I have generally been ok on it - just had a blip on the 3rd night of taking it and then ok since.
Loocie - love all your changing photos, you’re looking great. Yes am taking the Tamoxifen at night - well anything between 8-10pm. Thanks for the nail tips - will try it as both my hands and nails are so dry.
Babs/Anne - you’re doing really well. Anne - is it the nausea that is making you feel rough? They should be able to change/add to your tabs. I had one added on the third FEC called Nozinan (can make you feel drowsy which is good if you want to sleep) and that helped a little.
Anyone had/have dreadful indigestion, belching (sorry!!), acid reflux since chemo? This has been the worst residual side effect for me. I saw my GP last Monday who said it was probable Oesophagitis caused by all the drugs and in particular the steroids, and also a possibility of thrush in the oesaphagus/stomach etc. I have been given different ant-acids (have tried Lansoprazole and Omeprazole), now Zantac and some anti-fungal oral gel. It might be a little better but not much though. Just wondering?
Lynn xx
Hiya, your weekend away sounds lovely Lynn I’ve booked to go to Suffolk for a week with a friend in March, can’t wait and looking forward to getting a good lungful of fresh air - and the lush sleep that comes with it.
Are you ready for the rads this week? Will be good to get it under way, but not relishing the thought of being a patient again. It’s so nice having a life again - Anne, Babs and any others hang on in there, it’s lovely out here :0
How’s your eye Jane? Mine have mostly settled down now although the right one still crys first thing in the morning. Every now and again they’re a bit puffy, but they are heaps better than they were. I truly hated that particular side effect.
Well, in to the office tomorrow afternoon, and looks as though I’ll be going back properly in April. I’ve got heaps of leave to use and intend having a nice long break, and need to make the most of them so that I’m ready to face the workforce. Also need to think about taking up my degree again…there you go thought about it, now that wasn’t so bad after all LOL! Oooo scary yet exciting times.
No doubt will be writing to this thread until I’m old and grey, but just want to thank everyone for helping me out. You’ve really kept my pecker up and helped me when I thought the bottom was falling out of my world or rather the world was falling out of my bottom - well both of those actually!
Big hugs to all
Loo
xxx
Hi all
Loo, you look fantastic and sound so happy. All the very best to you and have a great week in Suffolk.
Good luck with your degree.
Lynn so glad you managed to get a decent nights’ sleep. and that your s/e’s have subsided. Hopefully life will get back to normal for you now.
Anne, I hope you are feeling much better today. The extra tablets they gave me made constipation worse and indigestion but have managed to resolve that now. Bum’s a bit sore now though LOL. I am catching up to date on Winter Olympics at moment so pretty interesting tele. Still feel like a recluse though as weather so miserable that I don’t feel like walking anywhere.
Babs xxx
Hi Lin,
yes I’ve had indigestion -never had it before in my life till I started chemo so was a bit of a shock. I used lameprazole and omeprazole during chemo and directly after but stopped fairly quickly. It’s not bad at all now, it just gradually got better on its own. I find it bad if I drink red wine or lie on the sofa after dinner so I tend not to do either!
Hopefully yours will just improve on its own with time too!
all the best
Helen.