Starting chemo in August 2012

[jackster50]

Sarah you must have been typing the same time as me. Great minds think a like (especially great chemo brains 🙂
Dont worry about things ending - we are just following the treatment path and yes it will be scary when it finishes as we all struggled to understand why we had to start it in the first place but while things may change from the norm we knew - we start a new journey 🙂 xxx

[jackster50]

Hi Mandy & June

Glad to hear that you both coped with xmas - you must have had to dig deep given the effects of chemo, so well done. I dyed my hair so I had a thin covering of mousey brown hair rather than grey; bought a red fluffy jumper and stuck a big smile on my face. Xmas was good though cooking xmas dinner meant i was in bed by 9pm - with a little tipple to send me to sleep 🙂
The new year is fast approaching and like you June I will be glad to see an end to 2012. What an horrendous, horrible year this was. Still we start a new and I pray that 2013 brings us all good health, happiness and a little bit of wealth wouldnt go amiss either.
Mandy I hope there are no more delays and you fly through the rest of chemo (i will have my fingers crossed) x
June you wont be on your own as we are all here to get you back to a new life - with hair I might add 🙂 x

Happy New Year and big hugs xxxxxxxxxxxxxxxxxxx

[Luvvie66]

Hi Ladies,
Just popping by to wish you all a very healthy and happy 2013.
i finished chemo on 28th Nov and its taken me ages to feel anything like normal. I still don't really! Still very tired and suffering from numb toes and fingertips..... But that's it really, so cannot complain. Oh, and brain still not functioning properly!
I am finding it hard now, emotionally. I've still to rads to go (starting 2nd Jan) so don't have the feeling of 'abandonment' lots of people talk about. It's more that, without the next chemo cycle to focus on, my mind strays to the 'bigger picture' andd longer term.
Im likening it to hitting 'the wall' when you run a marathon, just got to get through this bit before reaching the finishing line!
So Well Done ladies for getting this far, and hoping 2013 brings us all thah happiness we wish for
Sarah xxx

[mandymid]

Hi June
glad you managed a reasonable Christmas and are almost at the end of the dreaded chemo.
I too have had a reduction in dose.... Two actually, which I've hated the idea of but what choice do i have? Even after delays my bloods are still just about borderline.
If (and it seems a bit of a big if) I don't have any furather delays I will be done by the beginning of march. No rads afterwards unless they change their minds.
thankyou for responding June and all the very best for 2013
Mandy xxx

[June22]

Hi Mandy,
Yes, I am still having chemo.
I had a dose of Tax/Carbo on the 20th Dec, and next is due 10th Jan, and that should be the last one. Then Rads will follow shortly after, but I don't yet know how many, or when.
Then, as I am TN, that will be 'it' for me apart from the regular check ups!
I know it is going to be hard to get back into the swing of things after living from one appointment to another. Kind of scary to be on our own after all the attention and regular health checks... but I guess we aren't ever alone, as BCC/forum will still be around if we need support. 🙂

I enjoyed Christmas despite having little taste or appetite and a few other SE's... they lowered my last dose so I managed it much better this time - still feel rough though.

This forum seems terribly slow to respond tonight! I know they are trying to fix the problems... let's hope they do so for 2013, so it is easier to use for all those unfortunate enough to find themselves facing the BC journey!
2012 is one year I will be glad to see the back of.... may the new year bless you all with good health and happiness.

June22

[mandymid]

Hi lladies just wanted to say hi and hope you all had a nice Christmas ands to wish you happy new year.
pretty aware that I maybe the only one still at it! (Chemo just to clarify) maybe June still is?.
i was due a chemo the Monday before Christmas and one Christmas Eve but true to form, was delayed til yesterday meaning its dragging on longer but that I felt well over Christmas
After much badgering they have agreed to try me with neulasta rather than lenograstim so see if that sorts my pesky bloods out.
How have you all felt post chemo?on top of the world or a built glum? I'm aware some of you are facing further surgery and radio and hope that goes well.
I have joined the younger women's facebook group and that's helping me lots. Plenty of online chit chat And support.
good luck with what you are all facing next and check in occasionally to keep me posted.

much love, good health and best wishes for 2013! It's gotta be a better year ladies

Mandy xx

[Luvvie66]

Hi Ladies,

Just had a giggle reading your posts.

Very impressed with the cake making Mandyj, I love cooking, but baking has always eluded me.... too creative for me for sure;-)

I'm a little envious of everyone's hair, although the new growth does sound a little comical. I might have a tiny bit growing around the sides and back.... It's hard to tell, but nothing in the top yet. I hope I don't end up with a comb over!!!

Mandymid, my onc said it was ok to dye the new hair. He said lots of Oncs don't recommend it, but he said that as long as you use a 'natural' type of dye it is ok. I'd imagine the H&B ones are ok.
Perhaps wait until its a bit longer.... I remember using one of those 'Shaders and Toners' when I was younger.... My hair stayed the same colour but I ended up with a bright purple head!

All I want for Christmas is my taste back too June22. I have moments when it seems ok (ish) and I actually enjoy a meal. But, other times everything just tastes of nothing. It's like it's been dialled down to a really low setting. But it's definitely better at some points than others.
I'm off to Brasserie Blanc for my work Christmas lunch today..... please let me be able to taste it!

Oh, and I want my fingers and toes to get their feeling back...... My toes only went numb after my final chemo, and again its intermittent. Reckon the cold weather has something to do with it.

I don't want a lot do I?!

Hope you all enjoy the festive season and look forward to finishing all treatment early next year.

Heres to a much happier and healthier 2013 🙂

[June22]

Hello August ladies,
Just popping in to say "hi" as I keep reading messages but fail to respond and keep up with it all.

Mandyj - you are amazing to have made that cake. I have no concentration at all right now, and even doing a row of crochet on my scarf is a challenge! I think you did so well, especially as working with food isn't easy when you feel nauseaus.

Glad to hear some of you have hair growing - even if it isn't the hair of your dreams!
I currently have 2mm long eyelashes showing through, but my head-hair keeps coming and going through the sessions. At best, it is fuzzy fluff.

Jackster50 - I hope you too are able to enjoy wonderful moments and happiness this Christmas.

All I want for Christmas is some taste buds that don't make everything taste like salty ditch water! I'm finding it hard to even drink water to hydrate myself...

If I don't get a chance to say it before the big day... Have a lovely holiday whatever your belief.

June22

[mandymid]

My hair sounda the same jackster, I look like a fuzzy white tennis ball with a dark patch right at the front, quite frankly ridiculous. Despite still having a long way to go with my chemo they said it would start to grow back and it has....yeh....hurrah for stubbly legs.
on the hair dye front I can't wait to get some colour on it as at 42 I am not walking round with white hair. They do so me in holland and barrat, so assume that's ok!
Good on you for having a go at the cake Mandy...kids won't mind how it looks but bet it was fab.
lots of bugs about at the mo so get well soon to those of you with extra bugs. My kids all have colds which touch wood don't seem to be affecting me despite my lack of white cells. Makes no biological sense really!
swoot glad yr little fella is keeping you busy. I love that age so much. So cute and no answering back....yet!
xxxxx

[jackster50]

Mandyj you made me laugh with your cake baking. I visualised a mad woman in the kitchen throwing icing sugar in the air 🙂 Well done you. Well last chemo out of the way and along with what felt like a bout of flu meant sofa time for me. Im begining to see the light at the end of the tunnel and have even starting cleaning for xmas Yeeeaaahhhhh.
Done and dusted girls- we are getting there!
I have a thin coating of grey fuzzy hair with an annoying dark patch on the side. Thinking of getting a soft dye to change it all to brown - in the hope of no wig or scarf.
Going to try and make this a brilliant xmas as Ive had enough of misery and I hope for all of you that you have a fantastic time and that there are moments were you all have real smiles and feel true happiness. big hug to all and Merry Xmas x

[TigersGirlie]

hello all,

sorry been far too busy rotting in a ditch outside my house (or so it feels like), so had my last chemo then came down with fku, which has left me with a chest infection, am coughing so much now that i think the next problem i have will be bladder control issues!!! sorry you have been back in hosp mandy!!
well done to the cake making, bet it lookedd amazing, i missed out the female cooking gene as even thinking about baking things gets me stressed lol.
sika i sometimes think my head iss very similar to candy floss or cotton wool, i pose such a good gormless corpse.look its hiarious.
PS MY HAIR IS.COMING BACK BUT ITS NOW A DIFFERENT SHADE IF GINGER, lol just wwaiting for the fro as had curly hair before

love and hugs to all. xxxx

[mandyj]

Well the Landrover cake went down well at nursery, although it did look like it had been made by a 7 year old. Turns out that I am not at one with ready to roll icing! I am not ashamed to say that there were tears and tantrums when trying to make it (me that is, not my little boy) as I wanted it to be perfect. My OH said 'you are still going through the effects of chemo and making a cake, most people without chemo wouldn't do that' so then I felt quite proud of myself. I may not feel that way if they all come down with botulism tomorrow!
On the chemo front I want to know how soon after the last dose do I get my taste buds back and how long does it take to get some hair. Its getting pretty nippy out!!

[Swoot]

Odometer?! That's meant to read come a cropper... Stupid spell checker - argh!

[Swoot]

Cake - mmmm, Mandyj!

Seems silly not to give you the injections over a 3 day hospital stay, you're right Mandymid.

Hurrah for fluff Sika!

My son has just started to walk, so I am being kept busy following him around making sure he doesn'todometer a cropper anywhere. But it's magical to see and great motivation to keep up and busy 😉

Looks after yourselves everyone - good luck with the chemo, surgery and everything x

[Sika]

Good luck with the cake MandyJ! I know what you mean about forgetting about gettingthrough the last chemo.

Mandymid, sorry to hear you have been back in hospital and the injections don't seem to be working for you. I am sure your hospital stays are far more expensive than neulasta. I will be sending virtual neutrophils your way 😉

Hope everyone else is doing okay? I won't write more individual messages as the iPad does horrible automatic things that makes typing really really slow and excruciatingly frustrating.

I am booked in for my axillary node dissection on the 18th. Woohoo. Not. So worried about lymphoedema.

Head is quite fluffy though!

[mandymid]

Good luck Mandy j I'm afraid despite liking cooking/baking my 3 kids get shop bought cakes tut tut.
i have just had another little 3 day stay in hospital due to a bit of a temp, and neutropenic again. I don't seem ill with it, but they are super cautious and of course once they get in you they dont like to release you.
The doc who discharged me admitted that the reason they don't give neulasta here is cost. Meaning that basically I have had 12 injections of lenograstim in a fortonight, plus a hospital stay and am still very neutropenic. That cost must surely be taken into account. Essentially since starting chemo I've rarely not been neutropenic so clearly the injections are not working.
oh well only another 3 months to go!
mandy xx

[mandyj]

Just checking if everyone is ok. We seem to have gone a little quiet. We are either suffering or far too busy living! I am a bit of both to be honest. Had some mad idea that once the last chemo was in I would be fine, on the mend! Forgot that I have to get through the crap of this one too!
Will be busy the weekend making a birthday cake for my little boy. He is 4 on Monday. He has gone to nanny and grandads today for 2 nights sleepover - peace and quiet at last! Bless him. No pressure but I have got to make the cake in the shape of a Landrover - just like daddies!!! Aaaghhhhh. I will be at one with the ready to roll icing by Sunday teatime. Thank god its only got to impress a class of 3 and 4 year olds at nursery!
Wish me luck.
mandyj.xxx

[Luvvie66]

Hi Ladies,
Had my last chemo Weds........ it's not been good:-(
I had one FEC and 5 TC. I'm usually ok until the Friday eve, but this time the side effects kicked in straight away. I'm anaemic and don't think I really got over the previous dose properly. The aching is starting now, to add to the mix.
Still, can't moan..... It was my last one:-) Being tattooed for Christmas so they can line me up for rads starting on 2nd Jan.

Reading everyone's updates, it is a roller coaster isn't it. There's so many other issues to deal with. 😞
Ive not really got any hair regrowth yet, but my onc told me my hair was quite likely to grow back curly..... And yes, it could be white, although it wasn't before! He did say that id be fine to colour it as long as I chose a natural colourant for the first few times. He laughed when I said 'not peroxide then'..... He said it wouldn't be his preference for me!

Its cold but sunny here in the West Country. I hope all you lovely ladies manage to enjoy at least a bit of the weekend.
Luvvie xxxx

[TigersGirlie]

hi all,
Mandy mid, i did but same as you they were smack bang in my chemo, but definitely looking forward to meeting people my age through my new charity experience. i had a meeting with the Macmillan nurse and it really helped me understand what's happening, as we know genetic research is still young so lots of things out there. let me know when you go to see the geneticist. I'm sorry you r chemo is so long, but by sounds of it you won't need radiotherapy i have a 45m journey every day for a 1hr apt. sorry to hear you may have to have the same as me but am so pleased you have had your family, but its still not a nice episode or decision to make so sending big love and hugs back.
well done June number 5 gone, hope the Se are minimal and bone aches less.

much love to all

Victoria xx

[June22]

Hi Lovely forum friends,
Just popping in to say my fifth Chemo - the first of Tax/ Carbo combination went okay yesterday. I did get a tight throat feeling, but they slowed the flow and it eased off, and everything then went through without further problems.
It took about 3 hrs though, and I was tired and a bit giddy when I came out.
Had the follow up injection to boost my cells today - it was painless as I have tummy fat for it to go into! Nurse was a bit grumpy at having to fit me in to a busy day at short notice, but I think she later realised that it wasn't my choice (Oncology made the booking) and will be a bit less grumpy next time - I hope.
Legs feel heavy, had sinus aches, and feel a bit wobbly with a headache, but so far not too bad. Just going to rest a bit before the inevitable bone aches begin in a few days.

Anyway, just letting you know it all went okay, in case someone else has to do the same combo.

Have lovely weekends free of SE if possible 🙂
June22

[mandymid]

Congratulations to all you lovely ladies who have completed your chemo sessions, it must be a great feeling I imagine although ihave read lots of things about that being when ladies will struggle the most emotionally. Mixed feelings are bound to be normal luvvie I guess. I had my 6th dose of chemo on Monday and still have 6 to go. Cmf is administered on day one then day 8 then a 3 week gap. I refused to believe that I was half way there until that one was done with. For the first time I rang for my bloods and they were normal. I almost had to ask them to repeat themselves. I have a cold so guessing that's done it.... Yah I have an immune response!! I have felt queasy all week but not too bad. Managed to take my little boy to school today without feeling like passing out so that's progress.
hope for these of you embarking on radio therapy that it goes smoothly. I won't be needing that apparently unless they change their minds. Please keep me posted.
Victoria I'm so sorry to hear about the tamoxifen and the whole fertility thing, but I think June is right there are lots of other options out there. I know it's not the same but things to consider. Have you contemplated going on one of the younger womens things that bcc run. I want to go and will do but as yet the timings haven't been great with my chemo sessions. I know fertility is one of the subjects they cover. Maybe you would gain from it and meet other ladies similar to yourself. Congratulations on becoming a boobette. When you wrote about that I looked it up and it sounds amazing. You will meet other younder ladies through that won't you? I will also probably have the gene testing too. My sister has had it and has been told that she doesn't have either braca gene but I'm not sure whether they will also test me. I'm meeting the geneticist in a couple of weeks but was under their care anyway. I am now doing some research trial thing into families where there are high incidences of br / ovarian ca etc but no evidence of braca. As I guess there's lots of as yet unnamed unknown genes. Like you Victoria I'm sure they will remove my ovaries but much easier decision for me as my family is complete. Sending you a massive big hug xxxxxxxx
Sika glad things have been easier for you this time. I'm also waiting to see the cancer psychology team.... A long wait apparently! My eyebrows and hair sound like yours. My head looks like a white tennis ball....ruddy knew my hair would come back white and it is doing. i mean i need all the help I can get with my appearance at the mo not a fuzzy old lady look!
June think its only you and I still having the lovely toxic poison....keep going flower!
take care
mandy
(love all the typos on this iPad my name just came up as "aantsy" yes that's deffo me!)

[June22]

Victoria... that is rotten and so unfair. Darn these tumours that feed on what we need to get on with life!

Whatever you decide, it doesn't mean you are committed to a childless life if the hormones make you feel that way. Many children need families.

I really do wish you well with all that is still to do.
June22

[TigersGirlie]

hi June,

thank you for your thought, i had considered not making any decision and staying on implants for as long as i can as you say medicine moves forward so fast.
i did have a discussion at diagnosis and because my tumor was so fast growing i didn't have the option of freezing unfortunately, also to get harvested they need to give me the hormones that feed this nasty beast,

thank you again for advice, a decision not to be taken lightly

much love Victoria

[June22]

mandyj, Luvvie66, Sika, Swoot ...congrats to you all on having your last dose of chemo 🙂 Well done ladies - you deserve medals.
Sika, glad the emotions weren't so bad with the reduced steroids.

TigersGirlie ...so sorry to read about the blood clots causing a change of treatment plan, and you are so young to need to think about ovaries being removed. Could you perhaps have some eggs saved and frozen in case you consider someone to carry a child for you in the future? Not a happy thing to have to decide amidst all the stuff you are going through, but maternal emotions can change as you get older, so don't make any hasty decisions without considering all the options available.

Sorry about the 5 yr tamoxifen not being suited, but maybe in the two years on the implant new discoveries will be made that will provide new treatments that do suit you! 🙂

Good luck with all the last SE's everyone, and please do look in on us stragglers who are still going through the sessions, to tell us how your Radiotherapy is going.
I guess Radiotherapy requires a new thread... maybe you need to start a new subject for those starting radiotherapy in December over in the Undergoing treatment - radiotherapy section?

I hope you can all relax a little on the run-up to Christmas without so many appointments.
(And a bath w/o a PICC sounds lovely.)

June22

[TigersGirlie]

hi all,

got to admit am so so glad done as absolutely pants. im looking forward to a day of not feeling sick, wow some of you are moving quick to rad, mine not starting till mid jan,

so had my onc apt mon, got some answers but also some poor news, so because i got the pulmonary embolism (clots in lungs) i have thrown a curve in my treatment plan. i am 8/8 on both hormone receptors so have to have min of 5 years treatmenr. so tamoxifen CANNOT be given with history of blood clots, BUGGER so i have to go onto a 28 day implant, this is available for 2 years therapy but i need 5!so they have told me i REALLY NEED to consider removal of my ovaries!im only 31 and don't have children. but it looks like the best option in long run.(i will just settle with lots of four legged furry friends) then i was told i need to be tested for the BRACA 2 gene, and the steps to take if pos.
anyway to be a BOOBETTE i go to different events,schools festivals etc and raise the awareness of checking by sharing my story and others. Dermot oleary is a patron and am sooooo looking forward to hopefully meeting him.

SIKA sorry to hear you had hosp again hopefully the last for a while

love and minimal side affects to all

Victoria(posted by Tony )

[Swoot]

Congrats Sika! Congrats Luvvie! Congrats Mandy! It's a funny feeling, isn't it... Good, but strange if you know what I mean x

[mandyj]

Had my last chemo today too!!
Bought the nurses a big tin of biccies and a card to say thanks for their support and excellent ways of cheering you up on chemo days. I did a small tap dance with jazz hands as I left the reception which made the admin staff chuckle! It still feels so surreal. As though none of it really happened. Hope the SE's will be less as I am now psychologically thinking the worst is over re treatment. Was measured and marked for radiotherapy yesterday so now I have until 19th Dec with no more hospital appointments, just my reflexology - marvellous.
Felt like a veteran today as there was a lady there having her first of the FEC-T misery and i was full of information and advice. She was rather tearful throughout it all. Only had 6 weeks to get used to the shock as having chemo first to shrink the tumour. I gave her my email in case she needs to ask any crazy questions and I mentioned getting on the chemo threads here for good support from fellow chemo chums.
Hope you are all feeling as well as you can.
Luv mandyj.xx

[Luvvie66]

Final chemo infused!

PICC line removed!

All went well, apart from possibility of blood transfusion if my haemoglobin levels dropped any lower.... They were the same, so onc hoping they increase now chemo is finished.

Feeling bit woozy and only had 45 mins sleep last night. Longing for a 'proper' PICCless bath, but in serious danger of falling asleep in there.

i should feel elated, but I actually feel a bit deflated. I don'I know what I expected.... Airs not as though I was going to throw a party, but I'd almost forgotten I've got the side effects to come...... And now chemo is over I've got rads to look for award too..... And then well 'normality' kicks in...... whatever the new normal loos like.

Feeling a bit mixed up

[Sika]

mandyj - That's a lot of messing around with dates, and seems to be very early for the pre-radio stuff! I imagine you're right about them trying to fit things in before Xmas. Last chemo on Weds - yay!

Congrats swoot! All done! Hope all is going well 🙂 I've joined the FB group by the way! It is great.

Victoria - I'm really curious what it means to be on the boobette team?!

Hugs to you, ((jackster))

mandymid - good that the SE aren't too bad and I hope your bloods sort themselves out somehow! I also worry about every single ache and pain and worry that I will always worry. I guess if there is any good side to this, it's that they will always check things out for us, thereby putting an end to the worry. I had back ache before all this, but there's times when it has seemed treatment related. Certainly in the days I have the injections my back is very sore.


I had my last chemo ten days ago. Of course, as per usual, I got a temp on day 5 and spent three nights in hospital. It was silly being in there though as my temp went down again soon after I was in, and I wasn't even neutropenic! But the onc wanted to run more tests to see if there is something viral going on, seeing as my temp spiked pretty much every day last cycle. It has spiked again on each of the last three days. Just low-grade, and only for a couple of hours each day. Still no explanation.

Either the reduced dose or the reduced steroids made a big difference to the emotional side-effects this cycle. Given that I had similar physical SEs and pain (in fact, the pain and weakness was nearly as bad as the first round this time - my body completely collapsed on me one night - legs and arms just gave in and I was on the ground), I think the steroids were responsible for the emotional mess I was in. I'm still miserable, and very very anxious, but it's different to the post-tax feelings.

Struggling to do work, or do anything really. I rang my BCN for the first time today and she was really really lovely. She's referring me to psycho-oncology.

I am meant to go to an event at work on Wednesday. It's quite important that I go. But it's with people who have no idea I've been having cancer treatment. There will be talk about activity that I would have been doing had I not been diagnosed. I'm worried I will cry. And goodness knows what I will do with my eyebrows. One brow has way more hairs than the other which has basically none. And there's three stubborn little lashes in the middle of my lower lids. It'd be better with none at all. Good news is that I have a relatively lush head of fluff!!

I have an appointment about my node clearance in a couple of weeks. The surgery will either be just before or just after Christmas. I thought it wouldn't be until January! Apparently they like to have the clearance done no longer than 6 weeks post-chemo. I don't know how long they leave between surgery and rads, but this does mean I could have the treatment all finished by Feb/Mar! Except for the hormone treatment ...

[mandyj]

Hi Swoot
Well done you!!! All complete. No more toxic chemicals! I too have a new bottle of gin ready as my last chemo is on Wednesday!! Not heard from hospital so assume my bloods are normal. I have got my radiotherapy assessment and measuring up tomorrow. Originally it was Dec 11th, then Dec 4th and now its tomorrow! I think they are getting people done in prep for xmas. They said my rads won't start until 19th Dec but who knows? They change their appointments so much I could be in at any time.
Well done to all of us who are done or almost there and I am thinking of all those whose journey will be a little longer.
Luv mandyj.xx

[Swoot]

Hi everyone, just checking in after my 6/6 chemo :-). Victoria, I wish I could emulate your sloth, but with all these steroids knocking about my system there's no chance! I celebrated last night with a curry and a g&t, not quite what the doctor ordered, but it was good!

Jackster59, I'm sorry if I've got the dates wrong, but re. makeup I just used a foundation before I put any eyeshadow on and it kept it in place for me. Back in the day I wouldn't have bothered, but it helps with the no eyelashes thing, and the looking a bit grey around the gills thing too. I found using eyeshadow for my eyebrows worked really well too.

To all you other ladies, I hope you're doing ok as well. Sika, just to let you know that I'm thinking of you and hoping that you aren't getting horrid side effects on your last dose.

Look after yourselves xx

[TigersGirlie]

So I've decided that I should call myself a sloth am awake for approx 6 hrs a day now lol, but keep thinking were nearly there Mandy you must be on your last one next week like me, and to everyone else who is, YES we have made it, to those of you who still have stone to go, you will make it,
I also went to the head offices of the charity coppafeel and it looks like I will be becoming part of the boobette team.

Sending love and kind thoughts to all
Victoriaxxxx

[TigersGirlie]

Hi Jackstar,

Sorry just managed to get on and reply to you, am thinking of you and your family at this awful time. It sounds like your own family will be there to support you, you must remember to grieve for yourself, don't try to be strong for everyone.
Your family are having such a hard year, like all our families. I know you prob won't feel like it but rem to include your mum around Christmas, its healthy to talk about our lost loved ones and you will find it will help get you through the Christmas period.
Unfortunately my mum lost her mum 3 weeks before my diagnosis so it was like she was hit with a wall, but she is getting there and so will you.

Sending love, big hugs and lots of sloppy kisses from Bernard(see my pic)

Victoria xxx

[jackster50]

Hi Mandymid

Thank you for you lovely message.
When I was 47 yrs old I started suffering from back ache and pain in my hips which got continously worse so I went to the doctor who prescribed HRT. Within 30 mins of taking the tablet the pain went - proving it was related to menopause. Chemo as you probably have been experiencing brings us into a menopausal state so honey the back pain is most probably due to the delights of menopause. I never experience those pains again but with Tax I have been having something similiar. Due to our predictament your team is probably thinking about giving you a bone scan to make 100% sure they are giving you maximum care so try not to worry too much.
I think going forward we are all facing a new form of physical and psychological normality and there will be times when fear of recurrence will mess with our heads but equally there will be happy times to look forward to - at this stage in the game when we are very low its hard to imagine that those times will come BUT they will.

[mandyj]

Hi Mandymid
I had backache once I started on the Taxotere. It felt like the backache I usually get before my period. I did spot for 5 days with the first Tax dose but didn't with the second (probably because it was a smaller dose). When I went for my second Tax the chemo nurses asked how I got on with my Lenograstim injections and they asked me if they gave me backache! They said alot of woman complain of this when having these injections. It might be worth asking your nurses what they think.
luv mandyj.xxx

[mandymid]

Hi All, Firstly Jackster I am so sorry to hear of your terribly sad news. The loss of your mother is awful at any point in your life but whilst dealing with this too must jus be the final straw.
I hope the funeral went as well as it could do and you gave your mum the send off she deserved. I also hope that you found it within yourself to go ahead with the chemtherapy I believe yesterday. f I have got the days/ dates wrong I apologise. I am thinking of you and your family xxxxx
To everyone else I hope the treatment is going according to plan, I feel I have left it a little too long to reply to everyone individually.
I got my first CMF on Monday after yet another week delay. My bloods still werent right. I am supposed to go for another CMF next Monday but cant possibly see how the bloods will be ok to go ahead. Since starting chemo my bloods have only been ok once and thats when I was admitted. I am on max dose lenograstim. So not only am I concerned that I am having delays I will probably miss a dose altogether and poss end up on a reduced dose too (Great!) Side effects so far not bad at all which is what they say, epirubicin is meant to be harsher than CMF although Ive read mixed things about that from ladies going through it. Must say I have a very odd churny tummy Not sure what thats all about.
I also have a lower niggly back ache which is unrealted to chemo I think so they mentioned a bone scan . Scared of that too! Has anyone else noted that at all. It seems to be especially when Im walking or actually worse when Im standing still (ie for an hr and a half watching footy!) I dont need pain relief its just a niggly dragging sensation. I worry that Im going to spend the rest of my days worried about every ache and pain now!
Positive thoughts to you all
Mandy xx

[mandymid]

Swoot
May I just add I had a double mastectomy in July and to be honest I was expecting it to be far far worse than it was. I had it on the Friday (with immediate recon using implants) and was home for the Monday after the drains had been removed. I honestly wouldnt stress too much about the surgery if you can help it! The pain was never too bad and I didnt have morphine so was never drowsy when I came around. (Control freak!)
Mandy xx

[Sika]

Jackster50, I am so very sorry to hear about your mum. My thoughts are very much with you and your family and I am sending super-sized hugs your way. Be kind and gentle to yourself and take care xx
(I am not good on the makeup staying on thing - i try powder, but my daughter has said I need 'primer' to help keep eye makeup on. There's gel eyeliner that is meant to stay on for 24 hours)

[jackster50]

Thank you all for the lovely messages. You are lovely women and giving what you are all going through makes your compassion more poignant.
Now lets get serious. How on earth can I turn a hairless head, wrinkled up face and red teary eyes that bulge out like ET into what others would gauge as acceptable. For the funeral I want to look, well I was going to say glamourous but heh, something appearing normal would be nice.

Any tips on makeup that stays on longer than 5 minutes would be a great help 😉

[Swoot]

Jackster50, I'm very sorry to hear this and I'm afraid that I can't say anything as nice as the other ladies, but just wanted to say how sorry I am and that I'm thinking of you and your family at this difficult time xx

[mandyj]

Jackster50, So so so sorry to hear your sad news. What an awful shock for you and your family. Just wanted to let you know how much I am thinking of you at this time. I will never forget the kind words you sent me when I needed support. You are a wonderful lady and you will get through this.
Take care of yourself.
luv and massive hugs
mandyj.xxx

[Luvvie66]

Jackster50,

I'm so sorry to hear about your Mum. My heart goes out to you and I'm sending you huge virtual (((hugs))).

I lost my Dad when I was only 17. He died aged 46 from cancer having only been diagnosed 4 days previously. it was an awful time but i did get through it.

I cannot recall the ages of your children, but I think they will surprise you - just like I surprised my Mum all those years ago.
All your maternal instincts are coming out when you say you need to strong for everyone else. From what you say, or imply, it sounds as if your children are already showing signs of being strong for you.
You say they want you to have the final chemo....... you say the onc has said to your son...... So he's spoken to your specialist. See what I mean.

Listen to your close family, do what they ask, for them and for yourself. Let them look after you for a few days. It is only a few days.
Most importantly, take some time to grieve for yourself. These things have a way of catching up with us if we dont take that time when we first need it. You may have to support your children a little way down the line, but get yourself sorted first. They need you to be strong and healthy longer term.

And like June22 says, think about what your dear Mum would say.
(((hugs)))
Luvvie

[jackster50]

removing duplicate post

[jackster50]

June, I dont know what to say other than thank you. I hate the fact that you had to experience what i am feeling to write those words but they have really helped me. Take big care of yourself and again thank you xxxxx

[June22]

Jackster50 - I am so sorry to read that your Mum has passed away. My condolences to you and your family, and I send you supporting 'virtual hugs'.

A Mother is such a special person and I can feel your pain in your message.
These are extremely difficult times for you and your family and I'm sure that grief is overwhelming you.
If you can, imagine what your Mum would say to you now about your chemo... wouldn't she want you to complete it so that you can soon move forward with your own life, and share with your family all the wonderful memories you have of your Mum?

I spent too long holding on to memories of my parents, and my own life was put on hold for too long. Eventually I realised, they live on in us, in memories shared, in the people we are, and the things we do.
Celebrate all that your Mum was to you and openly love those around you. Together you can get through this horrible time.
Be kind to yourself right now, you are entitled to grieve and feel angry at such loss.
Take care,
June22

[jackster50]

Hi All
Like June I was planning to write a message to each of you last week but unfortunately, the unexpected happened and I lost my mum. She died last Friday after having a fainting spell on the Thursday and spending the night in hospital. Words cannot explain the pain a mothers death brings and I havent coped well since it happened. I was supposed to get my final tax treatment Thursday but I called it off as I simply couldnt undergo anything else at this time.
My mums funeral is next Monday so the onc and unfortunately my children want me to have the final dose the day after the funeral. Things are so miserable and I desparately need to appear strong for my children and I cant do this if I am blasted with tax.
The onc told my son that she couldnt quarantee that the cancer was gone if I dont have this dose as without it I am relying on 2nd generation chemo and as such I feel he would never forgive me if the cancer came back and I hadnt had the chemo but without it I could him my sisters cope with what is the most horrendous time in our lives.

[June22]

Hello August ladies,
I'm just touching base to say hello really.
I keep intending to respond to individual comments, but then the conversation has moved along before I get around to feeling up to sitting at the computer...
I just want to say I do read your messages, and I laugh along with you, and moan along with you too. Well done everyone for sticking it out despite all that it throws our way. Keep going, you are all doing great.

Apologies for this message being added to the September list too, but I follow both and enjoy all the messages (my 1st Chemo was the last day of August so I fall into both groups!)


Luvvie - I laughed at your list of SE's to give to enquiring well-intending folk.
My sister made the mistake of asking me 'what else' it did to me apart from killing off cancer cells.... I said a similar list of se's to yours, and also how I have to take a tablet to protect my stomach and prevent acid reflux, and other tablets that have to go in with food, and yet more tablets to combat the nausea so that I can take the food even though I don't feel like it and can't taste it, and then tablets to deal with the constipation or trots caused by other tablets as well as the chemo... and so on... and in the end she wished she hadn't asked! But she did give me a big hug 🙂
Chemo... the gift that keeps on giving! I can't recall who said that first, but it is sooooo true.

June22

[TigersGirlie]

Luvvie I'm with you on the how do you feel answers! Maybe we should take a sheet of paper with all of issues and if anyone asks they can have the real deal. Unfortunately we protect the people around us and say I'm OK.

Another fellow sufferer Victoria

[TigersGirlie]

Hi All,

Oh no you all are having bad times, I've just returned after the fec blackness that get. In regards to the immune boosters I have a week of the injections after my treatment and this seems to keep my neutrophils up.
Mandymid sorry you have been delayed again.
Mandyj I have awful earache all through but I'm on the fec not tax
Sika keep strong rem its these drugs that send your mind in a reel, I hope they can get things on control for you.
SWOOT glad you looked and felt good for the wedding, hope they give you guidance re surgery, at 35 they will hopefully choose breast conserving surgery which I had, I def think the surgery was nothing compared to the chemo so hope it is for you
Anyway I have the awful cancer pain and can't get it under control is awful and getting worse, my bones ache, muscles and my legs feel like they at re about to fall off!! !
Hugs to all
It will soon be Christmas 🙂

[sdfmeg]

Hi Sika,
all well and good for health professionals to designate our SEs as inconsequential when they don't have any personal experience. I still remember a GP telling me the visual disturbance part of a migraine (which he got) were far worse than all the other symptoms (which he did not). Well, not in my opinion.
My temperature has been low ever since I started chemo. Normal for me is somewhere between 35.2 and 36.5. (Only exception was this week, when I was in hospital with high temperature and low blood pressure.) I was concerned about this at the beginning of my chemo, but none of the health care staff felt it to be anything to worry about.