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June 2016 starters?

blueash
Community Champion

Re: June 2016 starters?

I had a flu jab and they told me to have it between 7 and 4 days before my next chemo. I started mine in August. If you have finished then it might not matter when you have it but still ask in case it is better to have it after a couple of weeks.

Belle
Member

Re: June 2016 starters?

Hi Popkit,

I'm so sorry you're still feeling rubbish 😞 but hurray on the tastebuds!

I will be having the flu jab. I'm seeing my GP next week so will arrange it after then. My plan is to get it after we come home from our week's holiday the following week.

I'm not up to it yet but I've begun to think about trying to get fit and lose the weight I've piled on so I began browsing the BCC site for inspiration. Did anyone else know that they do a free DVD with a 30min exercise class specifically aimed at post surgery/treatment recovery? No, nor me but I've got one on order now! I'm not sure I'm ready for the likes of Davina McCall but this could help me get off the sofa 🙂

https://www.breastcancercare.org.uk/information-support/publication/eat-well-keep-active-after-breas...

B x
popkit50
Member

Re: June 2016 starters?

Hi Terri

 

I hope your radiotherapy appointment goes well and that you feel ok today. So bad that you've still got awful side effects. I do still feel really exhausted/breathless most of the time. Last night I had quite a high temperature but not for very long (not long enough to warrant going to A&E) and dreadful stomach cramps and diahhorrea. All seems to have settled now although I am going to be very careful about what I eat today. Wondering if it was side effect or a little bug, although my stomach has been unsettled all week. No constipation this time round! My feet are still quite sore too - loads of skin has peeled off my heels, so I am going to bed everynight with a thick layer of E45 and cotton socks on them, much to my husband's amusement. 

 

judith63, Sorry to hear you've still got a way to go. I hope your side effects don't get any worse. 

 

Rosie, well done with the last T!! My mouth hasn't been so bad this time and I'm wondering if it's because I've been having a spoonful of high strength Manuka honey everyday, my tastebuds have almost returned to normal and water doesn't taste gross anymore. Manuka honey is really expensive but Holland and Barret sometimes do great offers. I just have to make sure that the rest of the family don't touch it ie: spread it thickly on crumpets etc. It is just for me!

 

So pleased that today will be the last day I have to inject myself with the GCSF. 

Spoiler
Spoiler
Woman Happy

Finally - is anyone on here having or considering having a flu jab? I have been told it's probably a good idea and to wait until the very end of the whole chemo cycle (after 17th October). Only thing is I will have to have it in my thigh as I still have PICC line in left arm in preparation for the next lot of surgery and right arm is no go area. 

 

Hope you all have a good day. It's a bit chilly where I am, even too cold to go bald around the house. 

 

Popkit xxx

 

 

 

bagpus
Member

Re: June 2016 starters?

Had my pre-mx chat with BN yesterday (still waiting for my date Smiley Sad) and found out that I will be joining the bluetit brigade! Almost glad as I was worried I was missing out!!! Smiley LOL

 

RosieFlower - I hope yesterday went OK and that the se's pass quickly. Just keep remembering that every bad day is the LAST bad day.

 

judith63 - I was told that they had to wait a minimum of 4 weeks after my last chemo treatment for the mx to happen, so assuming the same applies to you then you should have most of December to recuperate. I think that the target is to have it within 4 to 6 weeks (though, again, I don't know if the same applies everywhere) if that helps you plan.

RosieFlower
Member

Re: June 2016 starters?

Hi Popkit.

Glad you've got a date, and a 'little' time before to try and get some strenght back before op

 

My last T is today at 3.30pm - YAY!! Can't quite believe i've got here!! Not looking forward to the dreadful mouth and tongue ulcers, but have Gelclair ready this time as they were so bad after number 2 T, had to ring out of hours doc, and never done that before!

 

My radiotherapy starts 3 weeks today for 3 weeks,  - wish i could have had a little more time off before hitting the rays, but the computer said NO!! - Guess sooner done, sooner over.

 

Sending positive vibes that side effects for you subside pretty damn soon

Rosie

xxx

judith63
Member

Re: June 2016 starters?

Hi Popkit,

 

I'm glad you've finally got a date for surgery, makes life so much easier when you can plan.

 

It sounds like I'm one of the few still working my way through chemo.  I've got 8 (weekly) sessions of paclitaxol to go - don't finish until the end of November!  Luckily these weekly sessions are so much better than the first round of AC, but still have the yuk mouth, tired and weird pains in the bones and joints.   I'm hoping that they will let me have December to recuperate before planning the mx for January...

 

Judith63

Terriannes90
Member

Re: June 2016 starters?

Hi Popkit

So glad you've got your surgery date - another step forward for you 😊

Same as you I've finished chemo but still feeling quite rough. Thought I'd feel better by now but still got such terrible achy legs, really tired & still so nauseous. My mouth is also still disgusting and wish my hair was growing back! The tax made me loose what tufts I had so am completely bald including eyelashes & eyebrows!! Thank god for my wig 👍

Got planning appt at 9am in the morning for radiotherapy so just hoping I can pull myself together to make the appt as can't remember the last time I've had to get up & go out so early as haven't been to work since April!!!

Take care & lots of love

Terri ❤️
popkit50
Member

Re: June 2016 starters?

Belle, What a nightmare being stuck in a lift. Bad enough thing to happen when you're feeling ok. 

 

I found out my surgery date yesterday from my breast care nurse, 27th October. So I've got a few weeks to feel a bit more 'normal' beforehand. 

 

Slowly beginning to feel better: my knees still ache terribly and my mouth is still disgusting but it is good to know that once these side effects pass I won't have to go through them again. My hair has started growing back too - a grey fuzz. I was dark blonde before but going grey in streaks.

 

Has everyone who started in June now finished their chemo or near the end of it?

 

Popkit xx

Belle
Member

Re: June 2016 starters?

I'm so sorry to hear you didn't get any answers Popkit, and totally sympathise with both you and Bagpus re lack of dates - I hate not knowing when things are going to be!

 

You made me smile about the right appointment/wrong hospital Bagpus!  Thank goodness they went ahead anyway.  There was a lady in front of me today in x-ray who done exactly the same but was sent away to go to the correct hospital which was about an hour's drive away!  

 

Sounds like today was a day of appointments for lots of us.  Mine was for my DEXA scan prior to starting on Letrozole.  I was 20mins late thanks to getting stuck in a very small lift for fifteen minutes with five other people!  Not my favourite passtime!!  Was very glad when the doors opened!

 

B x

bagpus
Member

Re: June 2016 starters?

Completely sympathise - I'm waiting for my mx date and have a holiday booked which I might or might not have to move, just wish they could tell me when it is so I can start to plan my post-chemo/op life.

 

Great chemo-brain moment today - went to the WRONG HOSPITAL for an MRI scan!!! Actually, it wasn't entirely my fault, poor NHS admin also to blame. On the up side the sound system was much better at the correct hospital MRI machine, so half an hour of lying there singing along to 80s hits!!

popkit50
Member

Re: June 2016 starters?

Thank you Oncewild for the advice. I will definitely bear this in mind and the previous advice about exercise. I have been told that I won't get to see a physiotherapist unless I still have limited mobility two weeks after the op. 

 

The appointment with the surgeon was a bit disappointing; no bad news thankfully, but he didn't have a date for the surgery for me. All he could say was it will be in about three weeks, not very helpful as I was really hoping to be able to get away for a couple of days once the chemo side effects had worn off enough. Now I have another appointment with him in two weeks. I also felt I knew more about what was going on than he did. He didn't know when my last chemo had been (I thought they were supposed to get this information at MDT meetings) and he said "when you next have bloods done...." Well the answer to that one is unknown as I don't have any appointments with oncologists or anyone except him! I feel a bit adrift. I have booked a call with my breast care nurse this afternoon so hopefully she will be able to tell me more. Sorry to be moany but I just wanted to get the date in my diary and get it over with.

 

Popkit x

 

 

OnceWild
Member

Re: June 2016 starters?

Hi Popkit

 

i noticed your query about the effects of ANC on nerves. I had full ANC with my MX and was told it was highly likely that nerves will be damaged as it is pretty impossible to avoid. I realised straight after the op that mine were damaged because I had highly sensitive skin down the back of my upper arm. It was so sensitive it was painful when touched so I avoided touching it. This is the WRONG thing to do - I read that rubbing it, touching it, tapping it helped the nerves settle and when I did this it soon subsided. I now have slight numbness and altered sensation in the skin from my armpit to the elbow, just down the back of my arm. As for me it is just the skin nerves I can still feel touch, such as putting on roll on deo, as the tissue receptors are still intact. It does not affect me in any way at all, thankfully. 

 

All the the best with your op x

Anon16
Member

Re: June 2016 starters?

If you've had genetic testing I'd recommend calling up to chase the results. I did and they had then just hadn't got round to giving them too me! All negative phew. Hope your all OK xx
Terriannes90
Member

Re: June 2016 starters?

Hi Popkit

Just to say hope all goes well with your surgeon appt today - you'll be fine.

I had mx and total ax clearance back in April and yes it's uncomfortable but as soon as the drain is out you must exercise exercise and more excercise!!! They give you an exercise sheet & most probably a physiotherapist appt. it's quite difficult to get your arm up at first, but it will get better. I got cording but with more excercise & physio it soon went. I think you'll have full use by xmas. I still feel like I have a balloon under my arm - tho had it checked on numerous occasions & it's fine - but think chemo targets weeker points so still feel like I'm healing inside! Apparently radio also makes it a bit stiff so I'm still doing the exercises twice a day and will probably do these for ever!!

Anything you would like to know or ask please do as only too willing to help you ❤️

Lots of love

Terri xx
popkit50
Member

Re: June 2016 starters?

Doesn't seem to affect hairs on the legs! Still shaving mine....
haz25a
Member

Re: June 2016 starters?

Terri - Glad you're feeling a bit better. x

Belle - Yes! I've had tinnitus on and off throughout chemo. I'm overdue an eye test but as chemo has also affected my eyesight I've put it off for now. I don't want to spend money on new glasses until my eyesight has settled. Is there any part of our bodies chemo doesn't affect??

Hazel.x
blueash
Community Champion

Re: June 2016 starters?

Popkit I only had one node taken but I have heard that excercise is vitally important to prevent problems after several nodes are removed. As soon as you are able too you have to lift your arm above your head  and make big circles. Then do a few moves imagining that you are swimming and doing the breaststroke. You do not want lyphodema on top of everything else xxx

Belle
Member

Re: June 2016 starters?

Really glad to hear this Terri!

It is good knowing we don't have to do it again but it's still miserable waiting for it to pass 😕

Has anyone else had an issue with tinnitus? Throughout I've had a problem for the first week but then it goes, this time it seems to be persisting. Very annoying.

B x
Terriannes90
Member

Re: June 2016 starters?

Morning

Thanks for your kind support Popkit & Bagpus. Took your advise & rang Hosp & the chemo nurse was really helpful. As my temp was fine she told me to take double anti sickness tabs which seemed to work & the nausea seemed to subside. I'd also stopped taking Claritin as they made me feel away with the fairies but, after reading about anti sickness, think that was the wrong thing to do as apparently they're good for that too!! So feeling bit better today, thank god, can only get better now 😀 Still got the dreaded achy legs and body and bad lazyitis so intend lying on sofa all day dreaming about what I'm gonna eat when my tastebuds decide to make an appearance 😊

Good luck to all of you & happy Monday ❤️

Terri xx
bagpus
Member

Re: June 2016 starters?

Terri - I also think it maybe sounds more like a bug than a side effect. Sods law, I think it's called! Keep an eye on your temp and perhaps call your chemo helpline to get their view?

 

xxx

popkit50
Member

Re: June 2016 starters?

Hi Terri,

 

No it definitely doesn't help when people say things along the lines of 'all over now, you've done the last one...' etc. We still have the side effects to go through and it can take a very long time for our bodies to recover from the poison. I am so sorry to hear you are suffering from nausea with the last Tax. I started to feel really nauseous on day 4 after the last T (we're same day I think) also felt like I was going to pass out and kept going really light headed. It seems to have passed now but I have the awful knee pain that I got after the first Tax before they reduced the dose. Taking painkillers and also taking things as easy as possible. 

 

With regards to blue tits - I had the radioactive substance and blue dye when I had my mastectomy/reconstruction and had three lymph nodes taken. I remember the blue pee and green poo well - bit of a shock as no one had warned me! I didn't have any 'staining' on my skin though. Like Belle I was quite large before and now am C cup on affected side and H on the other. I also find that I hardly ever use the partial prosthesis and depending on what I wear no one can really see any difference and if they are staring hard enough to see one then they are quite frankly being very rude!

 

I am going to see my surgeon on Tuesday to find out the date for the axillary node clearance. Does anyone know if I will have to have the radioactive stuff again? 

 

For some reason I am more nervous about this op than the mastectomy. My breast care nurse told me that it can be more painful and that there is a risk of nerve damage to the armpit and upper arm which can take a while to heal, if ever. Is this worst case scenario or is she just being realistic? I have also been told that I need to get almost full use of that arm back asap as they want to get my radiotherapy started before Christmas. 

 

Terri, I really hope you feel well quickly - perhaps it is a bug and not a side effect?

 

Love to all xxx

Terriannes90
Member

Re: June 2016 starters?

Hello All just come on for a moan really!

Am on day 6 of last tax & am feeling really unwell 😰 Not sure how it happened as was not too bad up until yesterday morning! Got the usual se's but the nausea has hit me big time. Been up all night lying on bathroom floor! Have never known this sickness feeling before! Really feeling sorry for myself & it doesn't help when everyone says "oh it'll be ok it's your last one!! That doesn't make me feel better just makes me think about all that I've been through.

Sorry to moan 😞

Terri xx
Flopsy
Member

Re: June 2016 starters?

Thanks Sue H-S

 

I am more looking for medical evidence not general health care advice.  Plenty of that around but I'm after the actual evidence to support these claims.

 

The BMI type ones do seem common and I already have those. I understand that medical evidence on diet (as opposed to weight) is thin on the ground.

 

If anyone comes across any specific papers please bung them my way. I'd have thought that diet would have generated more papers but maybe it has been a dead end so far? 

 

Don't want to monopolise this thread.

 

Appreciate any help and thanks. 

 

Belle
Member

Re: June 2016 starters?

Hi Hazel,

My boobs are currently about a b/c cup on my affected size and an h cup on the other!! It's hilarious 😄 Pre surgery I was totally obsessed with it and couldn't possibly imagine that I would cope with it. It seemed the most awful thing about this whole affair. I will be having a reduction and am delighted with the prospect of having smaller boobs but I really thought the inbetween time would be harder than it's been. If you do end up with a disparity in size, Hazel, they will sort it out for you whenever you are ready for them to do so. Whether that's in 6 months or ten years. I wouldn't want to stay like this forever but I can honestly say it doesn't bother me. I have several partial prosthesis but most of the time I don't bother with them. Once I'm wearing a bra it's really not that obvious - even with such a large difference.

Hope that helps,
B x
haz25a
Member

Re: June 2016 starters?

Ah right, my lump was above my nipple. My boobs are the same just now BUT I start radiotherapy on Thursday and I've heard that my affected boob could shrink! I wouldn't mind smaller boobs but don't want significantly different sized ones.

It just goes on and on..........:-(
blueash
Community Champion

Re: June 2016 starters?

I did not have a drain for the lymph node either - they said if they took several I would get one for those plus the drain for the lump. I had a drain for the lump because my nipple had to come off so it was delicate surgery. I had a plastic surgeon for it and have a starfish incision which all the nurses and a couple of other surgeons wanted to have a look at. I have to say it is healing incredibly well and you cannot see any scar. My boobs are still the same size (my cancer was only 3mm, as big as a peppercorn) just one of them is without a nipple but they can fix that if I want later on.

haz25a
Member

Re: June 2016 starters?

Blueash, I never had a drain? The lymph nodes removed were clear thankfully x
blueash
Community Champion

Re: June 2016 starters?

Hazel I bet yours were all close together. I remember that they said if I woke up with more than one drain then they would have taken several lymph nodes and I would be going home with the drain and they would show me how to look after it.  I just had the one drain which was taken out an hour before I went home. I stayed in hospital overnight.

bagpus
Member

Re: June 2016 starters?

Brilliant colour co-ordination with the pink-pee post FEC!! Smiley LOL

haz25a
Member

Re: June 2016 starters?

Hi bagpus,

I had 3 nodes removed at the same time as my lumpectomy. After my op I asked my surgeon "Why 3", she said they removed the nodes which had turned blue with the radioactive dye, in my case this was 3.

Hazel.x

 

Oh and you get blue wee and green poo for about 24 hours. Smiley Very Happy

bagpus
Member

Re: June 2016 starters?

Wow, radioactive? I don't know whether that sounds really cool or really scary!

 

I think I'll miss out on it as I've already had a biospy with the microbubbles thing (pre-chemo) so I think they're just going to whip out the two sentinel nodes during surgery. That's assuming they don't need to bluetit me to identify them during surgery of course...

 

Thank you for the info!!

Sarah04
Member

Re: June 2016 starters?

Hi Bagpus

I had sentinel node biopsy and escaped the blue dye. The reason? My surgeon wasn't a fan! I did worry slightly when I heard this but all ok. She was adamant she wasn't going to use it so I guess some people get away with it
Sarah xx
blueash
Community Champion

Re: June 2016 starters?

bagpus - when they do your sentinel node biopsy you get an injection of radioactive something or other a couple of hours before your surgery. Then once you are under the anaesthetic they inject a blue dye which follows the course of your lymph channel and the first node it reaches is your "sentinel". They have to have the radioactive whatever because they listen with a geigercounter for where there is more lymph pooled (that is a node) and they need the dye to see to cut the  one they want which will be the first one the lymph collects in. If there are 2 very close together they will take both but if they can easily see one takes up the dye sooner than any other they just take that one.

 

I only had the one cut out and it was clear - if is is not clear they cut another 2 or 3 and test those. If they are clear they stop - if they are not clear they carry on and some people get a total clearance.

 

The blue dye remains visible for quite a while by the look of it. The radio active stuff remains for about 30 hours and I had a bracelet saying when it would be gone by.

bagpus
Member

Re: June 2016 starters?

OK, someone needs to explain this to me! I've had a microbubble biopsy on the sentinel nodes, but no titmouse-related reaction from that, so what on earth are you all talking about?

 

Is this something extra to look forward to with my surgery?!

 

xxx

 

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blueash
Community Champion

Re: June 2016 starters?

I am still bright blue and had mine done in June! It looks like a vein so does not bother me.

Belle
Member

Re: June 2016 starters?

They lopped of my blue tit in its entirety Judith although I was expecting the skin to remain blue as I had a skin sparing mastectomy but they obviously had acres of skin to work with so took pity on me 😉 I am still very fond of the wee creatures though and friends have taken to giving them too me! I have a feeling the blue staining can last many months I'm afraid. Definitely knit a birdie and do post pics! I want to see one. Scratch that, I want a knitted blue tit of my own! *scurries off to contact friends who knit ...
haz25a
Member

Re: June 2016 starters?

Belle - Well done!

Judith - I'm still a bluetit and I had mine in May. 🙂

Hazel.x

judith63
Member

Re: June 2016 starters?

Does anybody else still have a blue boob from the sentinel node procedure? (0r blue tit a la Belle!!)  I didn't think it was bothering me, but tonight (in a post taxol state) it is.    Minor in the list of things to worry about, I know, but standing infront of the mirror in my white bra + white t shirt I can still see it.   I had the procedure in June and was told the blue would disappear in time - I took time to mean weeks not nearly 4 months.  It's like having an unsolicited, badly done, tattoo.  I'm not due to have surgery until the New Year so I'm stuck with it until then - I think I'm going to therapeutically knit myself a bluetit to stick pins in!!

 

Have a good weekend all

Judith63

bagpus
Member

Re: June 2016 starters?

Brilliant news Belle, well done! x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Flopsy and all

It is challenging to find specific, well based research on what we should or should not eat post a breastcancer diagnosis and treatment.

Yes, there are specific thoughts in cutting down on dairy, cutting down on red meat, avoiding soya and any foods high in phytoestrogens, for those of us who have an ER+ diagnosis.

However, I agree with Belle - a good, healthy and balanced diet, trying to keep to a healthy BMI - seems to be the best route. 

And although this is an article from 2009 - and referrs to primary breast cancer is post menopausal women - the findings of a high BMI and relationship to etrogen production in our bodies does apply to all.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2689796/

Our nurses can, in the end, only give us us the advice, which is scientifically well founded, although sometimes personal opinions do creep in. 

If anyone would like to know more about how to achieve a healthy and balanced diet - this link may be of great help

http://www.nhs.uk/Livewell/Goodfood/Pages/Healthyeating.aspx 

Hugs

Sue xx

 

Belle
Member

Re: June 2016 starters?

Hi everyone 🙂

 

So excited I had to share!  I wrote to my MP earlier in the week about Breast Cancer Care's Secondary Not Second Rate campaign and asked her if she'd visit the the BCC stand at the tory conference next week.  It's something I feel quite passionately about and intend to get involved with.  This morning her office rang to ask me to come and discuss it with her 🙂  I have an appointment in a fortnight which at least means there's an outside chance I'll make it through the meeting without falling asleep or needing a lie down!

 

B x

Flopsy
Member

Re: June 2016 starters?

Hi Julia,

 

My two big toe-nails started to come off this week. I'm 6 weeks past my last Tax injection.

All OK on my hands so far.

I had dark gel on my toes and Evonail on my hands all through chemo.

Not sure if it would help but I was thinking of buying something like this to try and cover them

 

http://www.healthandcare.co.uk/insoles-for-blisters/10495.html?gclid=CLiqjszrts8CFWUq0wodMYUOuA

 

 

 

Julia S
Member

Re: June 2016 starters?

That makes total sense, bagpus. I thought the nail polish was to help with damage from direct sunlight, so might still help a bit. I've cellotaped my two lifting nails down for now, feels much more comfortable (even activities like typing this), but probably makes handwashing less effective? Grumbles some more.

 

bagpus
Member

Re: June 2016 starters?

I talked to my once about nails and neither of us could see how the nail varnish helps cos the growth happens at the base of the nail. Hence why the lifting happens months later as the damaged part grows out. Having said that, I'm keeping mine painted on case!! I saw someone suggested masking tape to help hold them down when they start to lift.

xxx
Julia S
Member

Re: June 2016 starters?

Hi All,

 

I just noticed my right hand thumb nail is lifting off, a well known Tax side effect. I have been wearing dark colour nail polish throughout and not had any other nail problems. I don't really know what to do, but I think avoiding using nails for lifting things (like lids off tins, or coke cans etc) is probably a good precaution for those of us on tax for the future (i.e. 3 months or more). I've been reading other threads where women lost their nails months after their last chemo, so feeling quite grumpy about this.

 

X Julia

Marije
Member

Re: June 2016 starters?

Haha, yes, hagelslag is in my blood!

A while ago my parents sent over a parcel containing 16 (!) packets of hagelslag! Still working my way through it 🙂 

Flopsy
Member

Re: June 2016 starters?

Hi Belle,

 

Thanks for the reply and the email address.  

 

On reflection I don't think the best use of my limited strength just now to email a general email address. If there was a named individual and they made claims about diet during that talk that would be a different.

 

I could email them and ask for the papers that support their views but a general email address isn't going to give me that as they may not know what I mean - I think so anyway. I would need to ask the specific person who did the chat what the evidence is as not all nurses may think the same. 

 

Hope that makes sense. I'll look at this when I am recovered. Brain will work better then,

 

Thanks for posting!

Belle
Member

Re: June 2016 starters?

I love hagelslag 🙂  Sadly I have none left.  But maybe it's as well, I have no discipline.  I brought some back from Amsterdam last November intending to make it last 6 months.  It made it till Christmas!

judith63
Member

Re: June 2016 starters?

Oh Marije - that made me smile,  You eating hagelslag in the UK whilst I'm eating marmite in NL!!

 

 

Marije
Member

Re: June 2016 starters?

Thanks, that is interesting.

I really need to regain some self discipline! I''m sitting here eating toast with chocolate sprinkles and mocha, after having had a healthy smoothie... somehow I think it balances out then 🙄