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Starting chemo October 14

Re: Starting chemo October 14

Bettypoppit and Jingo good luck tomorrow and Junash for Tuesday. I think I've missed someone else for Tues? Hope tax is not too difficult for you all. Keep us posted about how you're all doing xxxx

Re: Starting chemo October 14

Hi Betty poppit . Your posts are so comprehensive ! I don't know how you remember everyone . To clarify I had no lymph node involvement . I had a oc type dx test which gave me 15 PC risk of it coming back mitigated down to 6 p cent or less with chemo . This took into account tamoxifen and rads . If u do the maths that makes each chemo worth an xtra 1.5 PC therefore I have gained 6 PC by having 4 chemo bringing my risk down to 9 PC . I miss out on 3 PC by not completing and it is the significance of that 3 PC that I will discuss with consultant on Wednesday . Good luck to everyone both having and recovering from treatments this week xx

Re: Starting chemo October 14

Hi AMDriver, great to hear from you and sounding in fine fettle tonight 🙂 Fantabulous that Christmas us being put on for you by your family...put your feet up when you need and soak it up....great stuff. Hope you find your list!

Jingo_x, good luck tomorrow and thanks for the info update, feeling a little reassured i can do this. Hate, hate, hate the steroid se...took 2nd lot of 4 this afternoon and already biting the 'heads off whippets' in true Monty python style! lolol

Zelda, thank you and good luck for Tuesday...guess it's back to the unknown again that's making us anxious for new dose. Sorry to hear that you have a toe infection...not really not what you need and please be extra careful with your tootsies in walking boots/wellies when heading out with poppy. Its a goid heads up to me so thanks for posting. Think I might try the cold gloves but I'm not going to bother with cold socks.

Are others at different hospitals (Zelda and I are both at UHNS) using cold gloves/socks?

I really need to followup on the counselling option...thinking I'll need it by the end....the ever present 'monkey on my back ' and feeling a guilty fraud at times with my wle (not MX) and micro Mets (not full clearance) etc....and my bouts of crying moody blues and self pity when many many others are dealing with so much more than me:(

Tired, tired, tired so heading to bed very soon. xxx. I sooo need a mood hat to warn OH to take a wide birth of his one and only baldie spiky wife! Lololol

Re: Starting chemo October 14

That's good to hear Jingo_x... and thank both you and LainieG, I am feeling a lot better since yesterday. I have no idea why though!


Am pretty terrified of this week - first tax on Wednesday assuming bloods are ok tomorrow. I still have just enough hair left but and thin eyebrows and full eyelashes but think none of them will last after this and I will have to resort to a wig.


I cannot say how much I admire you ladies with young chidren, I don't know how you do it. My adult children have rallied round (well 2 of 3 have) and sorted out Christmas between them so I don't have to put up any decorations, drive anywhere, cook anything, or basically worry about anything at all which is marvellous and takes a huge weight off my mind. For that alone i am very lucky.


Debtex glad you are out of hospital and Murphy hope you soon are.


I have appointment with the oncologist tomorrow  as well and had a list of questions but have forgotten where I put it! Smiley Happy


Re: Starting chemo October 14

So sorry to hear of all the complications in our group - it's a good reminder that we need to be vigilant about all kinds of infections and symptoms and as Bettypoppit says I am full of admiration for how everyone has bad days and still manages to bounce back, mentally and physically.  Having said that I think we all need help to do that sometimes.  I have just finished my six sessions of counselling and I think it has helped so hope others can access that where they are getting treated. (AMDriver how are you doing this weekend?  hopefully not so teary?)


Bettypoppit we are still on the same schedule so I am back in the chair with you tomorrow having Tax #2.  FEC wrecked the veins in my arm, but they managed to find one on the underside of my arm for Tax and it caused no vein problems I am happy to report - not even a bruise.  Trouble getting bloods on Thursdya for me but that was from a FEC vein so the nurse told me to tell them next time that it isn't as good a vein as it looks!)


Tax has been harder on my eyebrows and eyelashes (or I guess it could just be the cumulative effect of 3 cycles of anything!).  Bald patch has grown a little and my hair has thinned in the last few days so I would say Tax is harder on the hair too!  But I have done pretty well all told - played football in the park with my 6 year old and felt full of energy and didn't even have any pain from my mastectomy when I was jiggling around.


Also I am now the proud owner of a prosthetic breast - took a long time, been using a rubbish little sponge thing since 24th July!! I am over the moon with my new one - a really good match to my other boob and I finally look ok in a t-shirt.  

Re: Starting chemo October 14

Hi Ladies Having a quiet weekend but nervous of what next week holds. Having my first Tax on Tues , just hoping my veins will be ok otherwise it's a line.
I have what looks like an infected toe redness is radiating from the toenail not sure why. Don't think I'll bother with the black nailpolish I have as the nurse said it doesn't work and I don't fancy cold hands and feet in this weather.
Good luck Bettypoppit with first Tax tomorrow and for any other ladies having treatment this week .xx

Re: Starting chemo October 14

Hi lovely ladies...it's getting a tad difficult to keep it all together but I think we are all doing really well with this horrible regime.

Debtex so so glad you're home and resting up after your time in hospital...love your 'I will if I want' attitude - way to go girl:) Your spirit is truly inspiring to me. Tough, tough, tough decision to be made but I'm sure you will get to the right. Can I check whennyou say 'no lymph node involvement' would that include "micro mets" which i had and was the tipping point by my onc for me to be having chemo? I'm doing my first Docitaxal/tax tomorrow.. bit worried I'm heading for a bad reaction as I can have adverse reactions to stuff, but I also do know as you say that I very well might not! Thinking of you. Xxx

Murphy, thats really tough for you too being so poorly and laid up in hospital...I'm absolutely sure it is the best..in fact very possibly the only place for you right now. Fingers crossed that your bloods will soon be on the up with the treatments and care you are getting. Thinking of you too. Xxxx (thank goodness for Kindles and tablets 🙂 lol)

PETA, fantastic that you are on the countdown to getting in to your new home 🙂 🙂 🙂 Hope you are still feeling OK. Thinking of you too. Xxx

Riversidedawn, that's truely grim for you and what a worry about your wound...do you need to get that treated / sewn up? Mmmm hope you get your school run sorted as I'm sure you can do without that mither! Absolutely all encumbant partners and grown up children need to step up for Christmas this year - way to go girl :). Thinking of you too. Xxx

As I've said before, FULL OF ADMIRATION for all of you ladies and particularly those with young ones and knee deep with school runs, school clubs, monster Xmas shopping, etc... hoping you are all getting help from somewhere and getting some R&R along the way.

Also I'm just about holding onto my eyelashes and eyebrows... but I think I've heard that D/T can finish them off, so watch this space!

My vein shut down during my bloods on Friday 😞 - does anyone know why that happens? Can we do anything to improve this? Now worried I'll have to have them done again tomorrow and the bloods taken at the hospital where up there in terms pushing my fainting buttons 😞 I know, I need to get a grip.

To all I've missed I am thinking of you all...<<<hugs>>> I do hope all with a trip to the cocktail bar have a successful trip and are OK after with minimal se's xxx

Re: Starting chemo October 14

Murphy, I'm with you, totally knackered post chemo 2, just can't get excited about Christmas. Husband and kids went off to get the tree earlier, I couldn't face it. I did put the lights on and now have left the kids to it. We usually have a small tree in dining room and kids play room - just leaving them to it, so far boxes everywhere and I think I feel a rest period coming on! Also decided no Christmas cards this year, just can't do it. And if the kids presents are going to be wrapped, hubby had better learn quick!


Having a bad day as my wound has opened up, I can see my implant though a 10p piece size hole!!!! On antibiotics and very very scared. Also due chemo on 19th Dec so guess that will be put off - again.


I was hoping to get help with school run next week, but my help has just asked for my help as she's working.... just at the wrong time!


Someone said we WILL get through this, I suppose we have to, just pretty crap isnt it? Son age 12 just walked in dressed as Santa, so that's a bit cheering!!! He's also wearing his Christmas jumper and cat had the reigndeer ears on earlier!!!!




Re: Starting chemo October 14

Hi everyone I'm home now . Feeling stronger . I do have a bad chest so prob that was cause of temp . I did get looked after well in hospital eventually . I did arrive v stressed and passing out . I seemed to be assigned a student who tried to do the admission stuff . She wanted to weigh me and when I shakily got out of bed to stand on the scales , the scales tipped over due to a faulty leg and I fell over onto the bed ! Then later they said they wanted to do a rectal exam because I had lower back pain . This was at one in the morning ! Let's just say I declined that one ! Then I was told I had to lie flat , use a bed pan and not move all night ., again I ignored . I knew I was having muscle cramps not spinal problems ! At one point I said I'm leaving !!!! I was a bit delirious and I did get sorted after that but omg what a feccing nightmare !! X

Re: Starting chemo October 14

Junash hope your infection is improving and your chemo goes ahead. Delay is frustrating so fingers crossed. It must be so much worse going through this for the ladies with young children. How do you keep on a brave face when you're feeling so bad? I'm trying to be positive for my sons but they're grown up now and I don't have to think about school runs, clubs and routines etc. How do you do it? 💖💖
AMDriver hope you're feeling a bit better and not so down. 💖💖
GeeG Hope your nausea is improving. You seem to have such a tough time with that. Loved hearing about the old lady. It helped me put this in perspective. It'll soon be over and we can think about how much nicer Christmas next year will be. 💖💖
Jingo I loved your photos. You have beautiful thick hair. Can't believe you still have so much! I hope you manage to keep most of it. All you need is a hat if you're going out, to hide your bald spot. 💖💖
I know I've missed lots of you but thinking about everyone 💖💖

Re: Starting chemo October 14

Murphy it's rotten that you're still in hospital. How long have you been in? It's horrible being stuck there. I remember being desperate to get home. I hope your bloods start to improve and you get your next treatment on time. Like Debtex I'm 3 fec and 3 t with no nodes involved. I wonder how they decide what we're having. Maybe it's another of these postcode decisions?? Anyway hugs to you Murphy 💖💖
Debtex you're sounding a bit more positive. Hope you're doing ok. Are you still in hospital? I think you're right about not doing any more tax. I suppose if the reaction is so bad and the percentage benefit is so small you have to think about whether it's worth it don't you. 💖💖
Peta glad you're feeling ok. Hope it continues. Glad we have 2 ladies doing ok on tax just now. I have my first one on 19th and I'm worried about how I'll feel over Christmas. If it was fec then at least I'd be able to predict. Let me know if your eyebrows go quickly on tax. Mine have definitely thinned a lot on fec so dreading tax. 💖💖
Hugs to all you lovely ladies and hope everyone is having an ok weekend xxxxx

Re: Starting chemo October 14

Two of us in hospital now Debtex and Murphy - I hope you're both feeling a bit more comfortable in there at least and that they're looking after you well. I hope you get out soon. Xx

I had Tax #1 on Friday, feeling very tired, a bit achey and a bit dry mouth but not too bad though, very little energy though so definitely a sofa day. Junash in many ways I think I felt worse with the FEC nausea, so grt not to brick it too much, this seems manageable and Jingo seems to be doing okay on it too.

Sorry about the monk look Jingo - at least you can cover it up with a little hat or do a comb over, that'd be attractive 😉 - I think I read that tax can be a bit harder on the hair than FEC - have you still got eyebrows? Mine are there at the mo but I'm watching with interest.

I hope everyone else is feeling reasonably okay. I move house in 5 days time so haven't been able to do any Christmas decorations yet, we'll have to wait until next week to buy a tree! 🌲

Re: Starting chemo October 14

Hi murphy . Hope you pick up soon . After speaking to the onco on Friday he said that the percentage gain from another 2 chemo was v small and I had made things better for myself by having the 4 . Obviously 2 more would give a tiny bit more benefit but as you know by now they just don't know ! Some research has been done in the u.s that showed for people with no lymph node involvement survival rates were no higher from 6 sessions than 4 . If I had carried on the fec I may have got to 6 more easily but maybe the tax evil as it is has done a better job of killing any cells than the 2 fec would have ? Who bloody knows ? If they could test us halfway thru and say yes we have zapped it all or no we haven't then it would be so easy to decide wouldn't it ? The main thing for me is that I was borderline for chemo and the onco was sucking his teeth long and hard looking at my onco type dx test . I knew that he did not know what to say to me about the need for chemo , and I could have walked away from it. . I chose not to and having 4 chemo will have helped to knock a few more percent off risk . I still have rads and tamoxifen to get through.i don't want to end up so ill from chemo that I can't get on with life again , I don't even eat healthily at the moment as a result of it . I'm also mentally stressed and need some phsyc support . Anyway will see what onco has up his sleeve next week to tempt me with !

I do hope I haven't scared anyone with my tax tales as not everyone gets the same effects .

Re: Starting chemo October 14

Hiya ladies, hope everyone is well. Im still in hospital. My bloods are going down instead of up. Possibly having blood transfusion today, will find out later. I wont be getting out anytime soon. My good week next week was jam packed with stuff I needed to do for xmas but it wont be happening. I just hope my treatment isnt postponed for 17 dec, still plenty time.

Debtex I hope you are picking up now and back home. Let us know how you get on on wed. I never understood why you didnt have fec the whole time. You had no nodes involved same as me so the regime is normally fec x 6. You might be able to tolerate another 2 fec.

im off for an exciting day. Good book going on my kindle so everything's rosey!!

Love to all xxx

Re: Starting chemo October 14

Oh my what a lovelies what an awful time some are having - I'm so sorry you're suffering. Murphy and Debtex stay strong - you're both so close to the end of chrmo but that's just words as some days feel like an eternity. Murphy sorry about your son, like you I'm trying to shield Sam from this as much as possible so he has his normal routine but it's so tough! God I csnt wait for next Xmas

Was reading about PTSD - there is counselling given to those that have met life changing scenarios - I'm a great believer in counselling, have had it when dealing with a couple of major issues in the past. Am thinking about getting some more as it helps me off load and gain some strength.

Little update - am still on the antibiotics trying to shift infection so that Tuesday chrmo - no.4 1st of T - will go ahead, got meeting with onc at 8:30 & chrmo scheduled for 11:30 - want it to go ahead but absolutely bricking it as well due to the switch.

PETA - absolutely loved the Belgium story - made me cry as it touched my heart.

Sending you all a great big hug - thinking of you so much xx

Re: Starting chemo October 14

Thanks everyone . I will contact the Bcc helpline when I get our of hospital . I have seen my onco who was v sympathetic and I am mtg on Wednesday with him when I will hopefully feel stronger . It was clearly explained to me tho that we are only looking at a small percentage benefit for me by having a further 2 chemo and that the surgery and radio for me where the most critical factors . What is obvious is that I can't repeat two further tax . I also feel I have had a mental breakdown which means all my inner strength has for now gone . I was upset too the read about Murphy who has had a similar journey to me and I hope you feel better quickly . I won't make any rash decisions but I'm also a person who challenges and I rarely do entirely as told ! It maybe that for me moving swiftly to radio and tamoxifen and not having. 2 more T makes little difference long term . Will know more on Wednesday xx

Re: Starting chemo October 14

Aw Folks… what an unpredictable rollercoaster we are on… most of 'The Professionals' really don't understand what it is like, do they? I just hope there's more audit and monitoring going on behind the scenes than we are aware of - those following behind us really should be given a better experience than this…
But horrendous as some are finding this - we/you have gotten so far with it - the end is within reach - you /we really can do it - and you/we deserve to get thru it having come so far… be gentle with yourself - this really is such a mind bending Life Experience - of course it is challenging, unbelievable and thoroughly IMPOSSIBLE to cope with… but here we all are … following in the footsteps of hundreds who have walked this path ahead of us - I was talking to someone last night who was in our shoes 24 years ago … she is a lovely lady … her grandson sings in the choir … who would've expected her to become and enjoy being a Granny if they had met her 24 years ago…
So do please hang on in there - give it your Best Shot - and then some - and then some more… there's Good Times Ahead for all of us Ladies - it is just still out of sight round the corner …
Hugs… x

Re: Starting chemo October 14

Hi folks ive been reading how youve been getting on. Sorry you are back in hospital debtex. Dont give up only 2 more for us. I too got rushed in by ambulace yesterday shortly after my last post. Really bad pains and was struggling to geta breath. Temp 39.2. Very low bloods. Been in isolation since I came in. First class care at forth valley hospital. My son missed his xkas fayre which I felt so guilty about. He shouldnt have to see his mummy wrivering about on bed in agony. Btw we should all invest on reliable thermometers, the one I got from chemo suite showed temp as 37.6, still high but not as high as 39.2!!! Night lovelies, keep going not long now xxxxx

Re: Starting chemo October 14

Debtex - sorry to hear you having such an awful time - try not to think about giving up as I'm sure they can do something to make the next cycle easier eg they can alter your dose.


AMDriver also sorry to hear you are feeling down in the dumps and I can well understand why, but things will be different for all of us next year and you never know what good things might be around the corner.


Bettypoppit try not to think too much about long term side effects - my father in law is a retired GP and when I start fretting about the side effects he says 'none of the side effects are compulsory' to stop me fretting.  I now try not to even read the list of side effects if I can help it.


Peta thank you so much for the Belgium story - the Belgians make great beer and chips so there is lts to look forward to.  So far the people seem very nice too 🙂


Regretting putting my 'hair shot' up this week as I lost a ton of hair int he last 24 hours, all from my crown, so now I have thick hair and a beautiful little bald patch on top of my head - I guess my cold cap wasnt so snug on my 3rd cycle!  Also had our car stolen last week and my son dropped my phone and broke it yesterday so I have lost all my phone numbers.  I think that is my 3 bits of bad luck for this week!!


Back on steroids on Sunday for T #2 on Monday, so going to enjoy feeling knackered tonight as I will be bouncing off the walls soon enough.


wishing you all the best weekend possible - keep those chins up and tick off the days.  We will get through this!




Re: Starting chemo October 14

Oh nicnac I feel for you. I'm a week into 2nd chemo so feel ok, although waiting to see nurse as I think my wound is infected again! I have felt rotten for first 5 days each time dizzy, headache, nausea, tiredness when my husband says he feels tired I sent to thump him! My son was off throwing up for 3 days either side if my chemo last week! What mums have to put up with eh? My husbands also having to get in an organise Christmas as I'm too tired - don't feel guilty x

Re: Starting chemo October 14

Love the mood beanie idea junash

Re: Starting chemo October 14

Hi Debtex, I really feel for you. You are having such a bad time of it but you are on the home straight....i think LainieG is spot on...BL***y hard when you are feeling rotton and in hospital, but do try and focus on the end game...the light at the end of the tunnel. We are all here for you...BIG BIG virtual hugs xxxxx

Re: Starting chemo October 14

Hi Debtex
I am sorry to read that you are feeling so low, our helpliners are here for you with a listening ear on 0808 800 6000 so please don't hesitate to call and talk things through

Weekdays 9-5 Saturdays 10-2

Take care
Lucy BCC

Re: Starting chemo October 14

Oh Debtex. I feel so sorry for you. I don't know what to say but I hope you don't give up. I completely understand why you feel like this but you have how many to go? 2? You've come through it so far although I know you've had such a hard time. Focus on the end date if you can and think about how you'll feel when it's all over. I wish I could say something to help you more Debtex. Sending you lots and lots of hugs 💖 💖 💖 💖

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Tommorow is my husbands birthday , we have a meal booked . Instead of looking forward to that I am in hospital again with bad reaction to Tax and temperature . Am considering quitting chemo as I can't cope and mentally I'm broken . Sorry to be so negative x

Re: Starting chemo October 14

Hi ladies just trying to catch up on all your posts so much to take in ive been off here few days on day 4 of 3rd fec and its hit me like a ton of bricks for the first time, ive cried so much this week Feel dizzy and knackered stopped me doing the school run and last night my other half had to miss a concert he had booked with his mates as my temp was rising feel so guilty. This blasted thing has stopped my family doing all the things we want to do. Supposed to be at a party tonight cant see that happening either.

You all have your own problems and side effects and we try and cope in our own way and i know how you mean when friends say how are you ? U find yourself saying ok but really you want to say i feeling bloody shocking!!

To top it off this morning my 7yr old son has a viral infection so doctor cant give him anything but all he said was dont get to close to him.
I hope you can all have some sort of ok weekend and the side effects get better. Love to you all. Xxxx

Re: Starting chemo October 14

bettypoppit - please don't worry about long term side effects. They are much more a problem, I think, if you have had a lot of chemo - and as we are all (as far as I know) having just 6 to 8 cycles for the very first time, it would be very unlucky to result in anything long term.  I only focussed on this as the onc was asking me to sign the consent form at the time, which specifically asks you to tick a box to say these had been explained (nope). In the end I signed that form without ticking any boxes. I'm willing to bet it's sitting in my notes all ticked off !


And yes, I've been told I am within my rights to ask to be assigned to a different onc.


AMDriver - I am so sad to hear you say you feel you are on the border! You've had the worst time, but I expect some splendid new men and jobs will be in your future. You just don't know it yet. I don't mean that to sound flippant, because I know it's hard to be positive when you are feeling down. Remember that you ARE stuck right here in central Belgium with the rest of us Heart


Ladies, just a thought, but perhaps we should add Brussels into our list of potential meet up places next year?

Re: Starting chemo October 14

So good to find you all here - nausea has been ongoing again after my 3rdFEC - despite Amend - how is it this stuff affects each of us so differently? My2 days at work this week were a bit of a struggle but so good to get preparation stuff done for next year… now due low WCC days so off tomorrow and hope to catch up properly - hugs to Everyone - x

Re: Starting chemo October 14

Lovely story PETA, thanks for sharing. We certainly are all on different flight paths now.

Murphy it's pants you are suffering so much and I hope you will soon start to pick up, but just go with the flow...sometimes it's the only way. I've used the bicarb mouth wash which I found was better than salt water and this cycle Diflam which has made my mouth bearable. Big hugs xxx

Linzz, I cannot imagine going through this and not trusting my oncologist...can you switch to another consultant and team? I'm also sorry to hear your mother isn't well - an extra worry you really don't need. Think I'd be tempted to speak to your BCN and maybe your GP...they might have some ideas to help to support you. I hope so.

I had not thought much about any long term se from all of this...now feel something else to worry about. I'll have to have that conversation with onc next time.

On the theme of inappropriate comments, the one I HATE is the "you'll be fine"... how do they know that when my oncologist doesn't know that!!!! grrrrrr

Good luck to any at the bar tomorrow xxx

Re: Starting chemo October 14

I've been crying for no reason all day and that story just gave me a reason Peta!


I'm dreading my life after this - at least now it has a focus but when it's all over I will have no job and I'll still be single and netiher of those things were anticipated let alone this BC.


I feel like I will be on the border of Belgium and some other country.....rather than with you all in Brussels - which is lovely by the way.


Murphy I really hope you start to feel better soon. xx

Re: Starting chemo October 14

You made me cry with that story Peta. It really made me think and it's so so true. We'll all have to get used to living in Belgium and our new, different lives. It's scary but you've made me realise that it doesn't have to be all bad. There will be lots of nice parts and lots to discover. We've already made lots of new friends. Without this detour I would never have met all you lovely ladies and I really believe that you have all enhanced my life at this horrible time. 💖💖💖
Murphy gelclair is great for coating your mouth and soothing mouth ulcers. Use soda Bic in water to rinse first. I also got difflam oral rinse which helped to numb the pain. Soda Bic then difflam then gelclair every 4 hours or so really cleared them for me. Hope you're feeling better soon. You're going through so much just now. Allow yourself the down days. Sometimes we just need a cry 💖💖💖

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Murphy, I think Gelclair on prescription is the best thing for ulcers, though I managed with Bonjela when I just had the one [monster] one during my first cycle, I couldn't have managed with OTC if I'd had more. And sodium bicarbonate mouthwash and a very soft toothbrush. Hope your mood lifts a bit soon Robot Happy


Peta's excellent Belgium story made me tearful too - and also a tad ashamed because all I could think of was the film "In Bruges" where Bruges is just lovely, despite the dark plot of the film. We always refer to the film, as it is very sweary, with a swear word inserted. Which fits in nicely - we are all on that flight to "In FEC-ing Bruges". Lets hope the turbulance stops for a bit and they start serving champagne...

I'm rambling. Sorry!

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Hi Murphy, have you spoken to the doc about the chest infection? I believe they can prescribe some good stuff for mouth ulcers too. I've been told that bicarbonate of soda mixed with salt and then gargle with it can help loads too. The recipe is

Rinse mouth with water frequently (every 2 hrs while awake & when awake during the night). May add salt or baking soda (1/2 to 1 teaspoon in an 8oz glass of water)

I think something lovely and soft might help too. Maybe your favourite ice-cream? It's get a few calories and some liquid in you, and it's ice cream! It has to help in some magic way too.

Feel better soon in all ways, we're all around the halfway mark now, we can do this! See you in Belgium! We'll all be there together so we won't be alone. Xxx.

Re: Starting chemo October 14

Herceptin is an injection given every three weeks for 12 months I think xx

Re: Starting chemo October 14

Hi Peta. I'm not sure how I find out if my Postcode qualifies me for a nurse to come out to do these injections at home.All I know is this injection is given slowly over 3-5 min in case of a reaction . Yesterday the needle was in the top of my leg for 5min while it was pushed in at 1ml a minute I think but I didn't look.
At the Hospital it seems whoever I ask about anything the answer always varies and I think sometimes if they don't know they guess.But maybe that's me being less tolerant and fed up of hospital visits.
I think I will ask the breast care nurse because if they don't know they will ask someone that does.xx

Re: Starting chemo October 14

Hi Zelda

How often do you have to have the injections? Do you think you or someone close to you could learn to do them, it sounds like it would be much easier? Maybe even a neighbour? Or maybe they could give you the prescription and then you could just take it down to your doctors surgery? There must be an easier way than having to go all the way into the hospital.

I've been doing my own GCF-S injections, and I'm used to it now. It's a bit of a mind bender, but when you get used to it it's really okay. There must be something easier out there!

I've been all the way into London today for my blood test, back again tomorrow for my first Tax chemo. As it's one drug it can't be counted as a cocktail from our lovely chemo bar, so do you think we're moving onto shots or slammers at this point? Only time will tell I guess. 😉

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Oh PETA, thank you so much for sharing the Belgium story. Once again I'm sitting here crying my eyes out, you are so kind to have taken the trouble to try to make me feel better. It is defo another way of thinking about things. I will be fine in a couple of days, it's been extremely hard this time round. First time I've had ulcers (anyone know a good remedy) and think I might have a chest infection. This chemo malarkey just keeps giving xxx

Re: Starting chemo October 14

Murphy please know that we are all here for you, now and in the future. We're all getting weepy days, so completely understand what you're going through, up one day and then completely beside ourselves and upset another. Big hugs and another big hug. We can keep hugging as long as you need them! Hug!

Re your bit about never getting over this and it being a life sentence. I've got a disabled daughter, and this story circulates among parents who are just coming to terms with the fact that their child is different. I thought it might help you too.

When people are having a baby they get all excited, it's like planning to move to New York! It's all going to be wonderful and amazing and the prospective parents just know that their child will undoubtedly be brilliant and gifted and go on to have a glittering career, a beautiful apartment and a heap of beautiful grandchildren many years down the line. Their lives and those of their child are all set out and planned, if only in their minds. So the big day comes and the child is born and it isn't like all the others. There's a problem or a disability, maybe it's a Downs Baby - and suddenly all their hopes and dreams are shattered! All those things that they just knew were going to happen aren't any more. They're devastated. Instead of going to this glittering future in a wonderful place like New York they feel that their flight has been diverted to somewhere completely different that they had absolutely no intention of going to ever, like Belgium. So they have no choice, they get off in Belgium to start their new life. At first they hate it. They didn't want to be there and it wants their fault that they were diverted. They try to fly back to where they were, but they just can't, they're in Belgium forever now. So, they start to look around. They make new friends, people they'd never have met if they lived in New York, and they suspect that these people are nicer especially since some of them didn't intend to like in Belgium either, so they're welcoming and kind. Slowly the new parents start to get used to it. They had no idea of what to expect because they'd never planned to go there, but once they start to look around they find that there are good nice things that they enjoy, even in a place like Belgium. It's not New York, it all runs at a slower place, but after a while they start to like it, and then love it, maybe this is a nicer place anyway. Maybe New York isn't all it's cracked up to be and they'll be just as happy, if not happier in Belgium.

I think we're all the same. I certainly didn't want to get on this darn flight to Belgium and the flight is making me feel sick and I'm fed up of being diverted. I don't know what's coming and that is definitely very scary, we all knew our futures didn't we and now we don't. We're on a turbulent flight and are going to the wrong darn place! But, maybe Belgium is nice. I expect there are going to be some absolutely wonderful bits. I have no idea what they are because they weren't in my grand plan but I'm pretty sure being in a Belgium will chance me a bit and I'll get used to living there, and then all will feel fine and I'll find my happiness again.

Meanwhile I just can't wait to get off this flight and land, so I can start rebuilding my new and slightly different life.

Good luck Murphy - see you in Belgium. Xxxxx

PS apologies to Belgium, I'm sure it's lovely !

Re: Starting chemo October 14

Hi Ladies Had first Herceptin injection yesterday , have flu like symptoms and nausea but I have enough energy to get out and about.Doxetaxol is now on Tues instead of today but that's ok as it seems to catch up over Christmas when all appointments seem to be juggled.
My Christmas appointment will be on the 30th December ,but I have no outings arranged for Christmas or New Year, just want to get through this now carnt really get into the Christmas spirit . I was hoping the Herceptin injections could be given at home when the Chemo is finished but apparently it's a postcode lottery. Wouldn't mind but the parking at the hospital is horrendous .
Hope everyone is good today especially those having treatment xx

Re: Starting chemo October 14

Murphy I feel for you. How awful that you're still in bed. I wonder if the dose is too high for you. My dose has been decreased and after feeling like you last time, I've been much better this time round. Still not great but I've been up and around more and feel a bit more human. Like you I've been worrying about how I'll feel on Christmas Day but I start tax next time so haven't a clue. I wish I'd thought of just leaving it open like Debtex in case I don't feel like it on the big day but my dad has paid to take us all out so I feel like I have to go. I know he'd be fine about it but I still feel I should try.
Linzz it's bad enough having to go through this without having an oncologist you don't like. Hopefully they'll find you another one next time who you'll get on better with. I've only seen my oncologist once just before I started chemo and I've never seen him since,just the onc nurse. I wonder if I'll see him before I change to tax?
Hugs to everyone 💖💖💖

Re: Starting chemo October 14

Debtex, your post made me cry, if I didn't have this I don't know how I would cope. I am feeling so down and only my friends on here appreciate what we are going through. What you're saying is so true, and if one more person says how brave I am I think I might deck them. I'm not f@@@ing brave, I am a quivering wreck, I will NEVER get over this, it's a life sentence. We can pretend all we like but life will never be the same. Today is a weepy day, yes it will pick up debtex, put on my face, but boy I'm feeling it bad xxxxx

Re: Starting chemo October 14

Well ladies, that's me back from my oncology appt. It WAS the same doc as last time, and I have mixed feelings about how it went. For a start there was a student present. Now I usually don't allow that, but I reckoned a witness would be a good thing. So she was being extra pleasant in front of her minion. "Grandstanding" is how I would describe it. She was OK with some of the stuff, but after a bit she clearly got fed up with me and got snippy again. I therefore didn't persist with all of my queries, because what would be the point? I have an appt about rads in a few weeks and I am hoping they will cover the ground I want to know about. I am still not sure what to do, but may still ask my BCN to change my next appointment (due after chemo ends) to another doc. On top of everything else I discovered she is due to go on mat leave not long after my chemo finishes, which may well leave me in follow up limbo, which I'd really like to avoid.


Oh, and she said that because I am young (hurrah!) - and thus pre-menopausal - she is going to put me on Zoladex as well as tamoxifen. Which had never been mentioned before. Spent the bus journey home googling it, and it does NOT sound like a bundle of laughs. At least I know about it now though so have time to do some research and get my head round it.


So, on the whole less confrontation than feared, mostly because I couldn't face the fight this morning. I am more worried today about my 87 year old mum who rang 10 mins before the appt to say she has a chest infection. She sounds awful. The last one almost did for her, and I'm not exactly in the best of positions to be playing nursy on a daily basis, which is what I had to do last time. There's no-one else around to help, so really not sure what I'm going to do if she gets very ill again.

Re: Starting chemo October 14

Murphy I have been doing the , this is how I will feel on Xmas day routine plus I have the added drama of a change of drug . I feel like I'm missing out on all the fun but I'm preparing everyone for the fact that Christmas may happen in between Xmas and n y for us . My husband is adamant that we are not going yo try to keep up appearances , if I'm ill I'm ill end of . As usual some friends and family have only seen me bewigged in full make up on my bouncy days and assume chemo is not a big deal . In fact if I have to explain again that it is a drip not pills and u have 6 not one I will scream . Why does everyone feel the need to play it down .?they should have seen me passing out in a and e or crawling to the bathroom ! Hope u pick up soon , I know you will cos you have before . Don't get down girl xx

Re: Starting chemo October 14

Thought for today. This is me day 8 after number 4 fec. Still no energy, still in bed. I get fec 5 on 17 December so this is how I'm going to feel on Christmas Day ( it'll be today on my next cycle) hoo hoo hoo 😞 I wish it wasn't Christmas, I am getting so down about it. It's usually my most favourite time of year. January can't come quick enough to get this horribleness finished with. Has anyone else got their radiotherapy appointments through? I have my planning appointment on 15 jan and start my sessions 27 January and finish 20 February. Fabulous to have an end date in sight. The travelling will be a bissom as I have to go to glasgow everyday (19 days), I'm not looking forward to that but it's a means to an end. Walk in the park compared to chemo my oncologist said.

Debtex, hope your feeling a bit better today. That was truly shocking the way you were treated.

Anyone getting treatment this week? I've lost the plot and can't remember!!!

Re: Starting chemo October 14

Wow, what an inspiration all your fighting talk is to me. Thanks for input, re getting to speak to a phycologist. I'm holding it together most of the time, but sometimes my head is spinning with it all and I just know that the closer to finishing trestments I get, the more the 'monkey on my back' is going to surface.

Just loving all the wit and banter ladies 🙂

Debtex I'm appalled and frankly shocked at your being told to wait it out and then being told to go wait in your car...although given the level of germs in your vicinity I might well have done just that! I can so understand choosing pragmatically not to go down the shouty shouty route...but sometimes being reasonable and accommodating doesn't get you very far. It has been stressed to me by the 'chemo unit" that any sign of infection is a straight call to the emergency chemo unit....not much point in that if you can be as ill as you were and you get turned away!

Cannot keep my eyes open....big hugs all xxxx

Re: Starting chemo October 14

Peta your post did make me laugh. Lady garden is half gone but still hanging in there thank you 🙂 didn't try ice pops in the knickers but reckon it would give everyone a good laugh in the chemo unit!

Just been out for my first evening in 3 months - wish I'd done it sooner really. Oncology appointment in the morning, with a huge long list of questions including 'can I book flights for the 28th march' and ' can I please have a mastectomy on my other boob'. As I am the first appointment of the day I reckon my onc will be in tears by the time I have ploughed through my list! Good luck with your meeting Linzz!

Sleep well ladies x

Re: Starting chemo October 14

Thanks Peta, and everyone else. Notebook already in the handbag!  For the record the first thing I usually do when I meet a new doc is produce the notebook and say "I'm afraid I'm the type to ask lots of questions" to alert them to the fact that I DO want info. They usually then adjust the consultation accordingly. This onc responded with "oh you won't need to write anything down" and handed me a print out (from this site, or Macmillan) of the side effects of FEC. Which she proceeded to read out loud to me verbatim. Like I might not be able to read. Ahem.


The biggest porky was when I asked "are there any side effects that might be permanent?" knowing full well that there are - I wanted to know which she would highlight, thinking those were the ones worth being concerned about. And she said "No." Plain and simple no.  I then asked her about cardiac effects and peripheral neuropathy - which can happen, and can be permanent. And she repeated "No" and then paused and said "you have done your research haven't you?" But didn't recant the "no". 


I have a couple of questions which I already know the answers to for tomorrow which I will be kicking off with. And yes, I will write down her answers and read them back to her for confirmaton - that's such a good idea. And if it's more porkies from her then I'll be bringing up the peer-reviewed papers I've read on the topics.


Gawd I hope its someone else tomorrow as I'd really like a positive consultation and not a fight.


I'll set off a flare if I need one of our famous posse's organising!

Re: Starting chemo October 14

Good luck with your Onc tomorrow Linzz.

I can see understand that they don't want to stress us, and don't want to push information onto people that they're not ready to hear, but there's no excuse for lying to patients. If you've asked a clear question they should show some respect and answer the question as honestly and openly as they can. I know you said that you like facts and info - I'm the same - can I suggest that if you think she might lie very obviously take a notebook and write down what she says, and then read it all back to her and overtly ask her if the facts and stats you have written down are correct? Maybe even get ask her to sign it? She might suddenly have a desire to stop telling porkies? Obviously going to a new Onc is a good idea if you have no confidence in this one, but don't let her off the hook lightly! Make sure she understands fully that she's an idiot! 😃

My local Maggies offer counselling in the Maggies centre, perhaps your local one does too? I think I'd have more confidence in them than in NHS counselling, and there might be a shorter waiting time?

Anyway, good luck tomorrow and kick some butts. 😃 - and of course tell us how you got on.

Re: Starting chemo October 14

Jingo I love the photos, your hair is amazing, I can't believe that you've managed to keep so much. Have you kept your lady garden or have you been slipping some ice-pops down your knickers? 😉. Seriously, it looks fab, you prove once and for all that the cold cap can work. 😊

Re: Starting chemo October 14

Blimey Debtex, that sounds like one hell of a battle. How are you feeling now?
I'm surprised they let you out and didn't keep you in for observation at least. I hope you're feeling much much better today. I can't believe your chemo team suggested that you sit it out at home with a temperature, that's really appalling. Give them hell from all of us when you speak to them and let us know how you got on. Xx