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September 2016 starters

879 REPLIES 879
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Re: September 2016 starters

Hey su,how are you doing?

Ru
Member

Re: September 2016 starters

Thank you See See and Sue. I know Cancer treatment is more advanced than ever and there is hope that one day there will be a cure. I started on Carboplatin chemotherapy on Wednesday and side effects are not too bad. Apart from the usual tiredness and the horrible feeling when you have dexamethasone😩. Sue these secondaries have come on the wrong person 😁I will send them packing faster than they come. 😘😘😘
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Re: September 2016 starters

Oh Ru, my heart goes out to you. This is what we all fear and however "normal" the life we have got back to after initial treatment we will never be completely free of what has happened and our ongoing risk.

 

In our local support group there are several people living with secondaries and they have been for years - and they are living great lives. One has a new partner and is taking holidays with him, another continues to lead various local Committees and seems to have more energy than me! Nothing can change your bad luck or the awful way you must feel right now but please take life by the scruff of the neck and give those secondaries hell!

 

love and hugs,

Sue X

Member

Re: September 2016 starters

Oh dear. There seems to be lots of new treatments happening all the time. My oncologist recently said that cancer is becoming a long term condition rather than a life shortening one. Hope they find something that works for you and doesn’t have too many side effects. xx

Ru
Member

Re: September 2016 starters

Hello See See unfortunately it is secondary
Member

Re: September 2016 starters

Hugs. Is it secondary or a new one?

Ru
Member

Re: September 2016 starters

Hello everyone hope you are well enjoying the weather. I had a routine check in June unfortunately it is back and I started chemotherapy yesterday.
Member

Re: September 2016 starters

Hello all, how is everybody getting along? I hope you are all continuing to recover from a dreadful year and things are looking up.

 

I have completed my second year nursing and just when I was gearing up for a rest I have an extra assignment landed on me because the stupid doctor gave me a 4 week sick note after my surgery last August, instead of the 1 week one I had requested. I am beyond cross but I have planned out a timetable so I can still get a rest otherwise I won't have any holiday time this year.

 

That aside I am feeling better and better. I have finally got rid of the last lingering side effects of chemo, although I still get tired more easily than I used to. Tamoxifen doesn't seem to be giving me the appalli g side effects that some people get. My whole body temperature has increased from a usual 36.5° to a steady 37.5° but maybe that means I won't shiver quite so much in winter, lol.

 

My hair has grown back enough to actually be cut into a style, rather than just a lump on my head. I am growing it to bob length then deciding what to do about it. Previously I had hair almost down to my waist but I don't know if I can be bothered to grow it as long as that again. My hair has always been a dark strawberry blonde but it has grown back black! Both my grandmothers had black hair and so do some of my cousins but it was a bit of a shock and I am still getting used to it!! There may still be a cut and colour at my hairdresser in the future.....

 

I see my oncologist tomorrow and hopefully I should be discharged from her clinic. I still get a bit of muscular type discomfort on the side of my breast and under that arm but it is slowly improving. Having seen how surgeons stretch the skin to get at the parts they need to operate on I am not surprised it is taking a long time to recover! After that I will see the breast care nurse and consultant every six months for the next five years, as well as the annual mammogram. That's not too much out of my daily life to keep my mind at rest, and certainly preferable to the dentist.

Member

Re: September 2016 starters

Hi Jo-Jo

 

I've had so many people now tell me that my short hair suits me that I'm going to stick with it. It's much easier to manage anyway. I get told I look well too - which I do compared to when I was on chemo - that I just say 'oh it's that make up' which is true. I can't be bothered with it most of the time but that's like I was before. I've just decided to be positive and look to the future.

 

best wishes and hugs

cathy

Member

Re: September 2016 starters

Hi Annie, no you are not the only one. I've returned to work and finding the mental adjustment there the worst. I wore my wig to start but got fed up of the "you look so well" comments plus the heat that I gave up. Now apparently I look "really good" with new hair. I just want to shout at everyone "no I'm not ok, I've had f**** cancer that's why I look like this. But then no one else can understand that.
We will get there and who knows this time next year we will hopefully feel different again.
Xxx
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Re: September 2016 starters

Hi Lisad great to hear from you.  Sorry you are having pain left over from the mx and your ear is bothering you still.  We are still recovering slowly from a traumatic year aren't we?  I know I am.

 

I sprained my ankle very badly the night before we were to go to Holland and couldn't believe it.  I went into shock and was quite shaken by it.  I am sure it is the side effects of all the drugs I have been on (+ Herceptin).  I went anyway and hobbled about.  It was hubby's only week off all year so I couldn't not go.  Lovely time but I am very drained by it.  Will I ever get my old strength and enthusiasm for life back I wonder?

 

I was frisked by a security woman in Amsterdam airport this morning!! I am sure she felt my boobs and hesitated about one feeling solid and the other feeling floppy!!!  I was mortified and was ready to shout at her that I had had the big C but she thought better of it and let me go on through!! Omg am I never going to get away from this hanging over me???

 

I am still wearing a wig.  My own hair is too scary to show the public.  The problem is the wig is so good that I am getting too many compliments on how well I am looking.  My hair will never look that good.  It will be at least October before I can take it off and even then it will look really short.  It is going to be quite traumatic I know and I am steeling myself for that day.

 

How are the rest of you getting on now??

Are you readjusting to life without chemo!!!

 

How is the hair regrowth and are you having any problems post treatment?

 

I am finding the mental readjustment can be quite hard sometimes.  I was walking around Amsterdam and people watching.  No-one seemed to have health problems and the Dutch are so tall, slim and attractive.  I kept thinking is it just me?  Am I the only one here who has had to deal with cancer?  And why me?

 

Anyway I am always glad to hear from any of you...keep in touch now and again...

 

Big hugs from Aine

 

 

Member

Re: September 2016 starters

Hi Ladies

 

Just checking in to see how everyone is doing?

 

Had my check up last week - all clear on right breast.  Although I am getting pain under my arm where I had the masectomy and going back in a couple of weeks as may have a scan to put my mind at rest!

 

Still doing Ok on  Letrozole no side effect, no weight gain Woman Very Happy although I have been feeling really low these last few weeks, not sure if it is the side effects of the tablets or the anniversary of losing my left boob Woman Sad

 

I am finding my partner really irrataing, again not sure it's the tablets are just a revaluation of our relationship?

 

Still have a  hearing infection 2 months on, tuns out due to getting an infection it has caused me to have a perforated  eardrum and a  Polyp and slight loss of hearing! Another dose of antibotics and hopefully in tme the hole will close up without the need of surgery! 

 

I would still be interested in meeting up around mid September if anyone is interested?  I think we agreed Birmingham would be the most central location to meet, athough I am based in kent.

 

Anyway enough of me, look forward to hearing how you are all doing.

 

Take care

 

Lisa x

Member

Re: September 2016 starters

Hi Ladies,

 

I'm on anastrazole as I'm post menopausal. I do have the joint stiffness and pains, particularly in my knees and ankles. I have a friend who had breast cancer 13 years ago and she assures me that the pains do wear off after a couple of months as you body adjusts to the lower oestrogen levels. I' m guessing that she must have been on tamoxifen as she would have been pre-menopausal at the time.  

 

My bowel habit changed too but as I'm normally more prone to constipation, it has more or less "normalised" me! Will have to be a bit more careful with curries though!!

 

Also started a bit of beard growth under my ears 😏 but  a small trimmer off Amazon has fixed that.

 

I have had discomfort around the area of my mx and ANC a couple of weeks ago. I agree it is scary as your imagination runs riot with every twinge of pain. Don't know what caused it - maybe it was just the area readjusting after rads? Whatever, it seems to have resolved now and is always better after exercise.

   

I will also have bisphosphonates soon as my pre-hormone DEXA scan showed I already had osteoporosis! I started with 6 doses of high doses of vitamin D over 6 weeks and will start the bisphosphonates soon. I' m told it will be a weekly tablet but am not looking forward to it as it seems a hassle. Has to be taken 30 minutes before any other meds or food and you can't lie down during that time, to make sure it gives down OK and doesn't affect the oesophagus - sounds like a lot of early rising required......

 

Will see my Onc next week and am still waiting for my first annual mammogram date.

 

Hope everyone's SEs are few.  

 

Hugs to all.

Sue O x

Member

Re: September 2016 starters

Not sure about Letrozole. I had anastrozole which gave me 10 x diarrhoea daily instead of the usual 5 (had a right hemicolectomy for my Crohns years ago). The oncologist who has been doing the job for yonks said he didn't think it was a side effect of the drug but it settled down when I stopped taking it. I started on a different drug in the same class beginning eme.... and still need the biophosphonates. For anyone having to have these injections I told the consultant I felt like I had the flu for 2 days after this. He suggested the maximum dose of paracetamol the day before, day of, and day after the injection. I'm going to try this for my injection at the end of June. Will let you know how I get on.

 

good luck with hopefully diminishing side effects and feeling crummy 😀

 

Cathy 

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Re: September 2016 starters

Sorry that should say Letrozole!!
Member

Re: September 2016 starters

Hi everyone- lovely to hear how people are doing, for most of us, one year post diagnosis. I've had my first mammogram already and although they forgot to give me my results and I had to chase - it was all clear. Phew! My hair was growing ok but then I made the mistake of letting a new hairdresser "shape" it and she cut too much off. So keeping the wig for a while longer. Is anyone else on Letrozone? My oncologist suggested I take the 50mg daily tablet of ibandronic acid to counteract the potential bone loss. I started the Letrozone in Feb but didn't start the ibandronic acid till 31st May. After about 6 days I noticed arthritis in my hands was painful and by day 8 were so swollen and painful I couldn't grip anything or fasten buttons. Needless to say I stopped taking it and phoned the breast nurse to report that I was going to trial not taking it for two weeks to see if the symptoms disappeared. Interestingly she said another lady had reported the same issue although it's not listed as a side effect. Four days of not taking it and my hands are back to their normal, slightly arthritic state and bonus - my ankles have stopped hurting too! Anyone else had this experience? Also if they switch me to Tamoxifen are bisphosponates like ibandronic acid also advised with this drug? Good wishes to everyone with ongoing side effects and pains. Xx
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Re: September 2016 starters

I'm glad to hear that people are doing so well. I hope aches, pains and itches disappear soon. I still get the odd twinge and itches right inside my breast but that's nerves healing (and having seen surgery I know why it hurts so much and takes so long to fully heal!). I still have muscular pain under my arm when I lift it. It isn't bad pain, it feels as if the muscle isn't stretching as much as it ought to be. I am thinking I ought to try applying tiger balm, which is fab for muscle and joint pains. I just need to remember when me and the tiger balm are in the same room Cat Very Happy

 

My hair has come back really well. It is still too short for my liking but it has moved on from Sinead O'Connor! It's almost a year since I first felt a lump so I'm sure I'll be sent an appointment for a mammogram soon. It's almost difficult to believe it has been almost a year, so much has happened. I am feeling a lot less tired than I have been, which is good for uni work as I have 2 assignments, a portfolio and 2 placements to complete before I can sign off 2nd year.

 

I hope you all continue to improve and that all your worries are unfounded.

Member

Re: September 2016 starters

Aw Lisa it is great to hear from you....I remember the first time you put up that photo of you with the wig and it looked great!!

I hope your arm pain is not getting any worse...they will investigate it for you ....don't be worried it is probably just a normal side effect ....I have very itchy armpits at times...dont understand why and it usually happens when Im in public...so I cant scratch them or I would look like a lunatic!!

 

Yes due a mammogram soon.  I had my Consultant appt last week and she said Im all done and dusted and to continue with Herceptin until November....and to just put up with the SEs...diarrhoea, itchy armpits, sore hands, numb toes, disgusting nails, runny nose, etc.

 

Hair is a Sinead O'Connor still and Im getting a new wig this week.  I havent ditched it yet..I look too freaky still so will give it another 2 months growth. 

 

Im really feeling a lot better...am keeping very active all day but still have to take short rests....I went into school and that was a huge step forward for me.  Im going back on the last day of term....

 

How are all the rest of you doing?  I hope you are enjoying the start of summer and are going to make the most of every day....Im trying to be as positive as possible...and am succeeding most of the time!

 

Never thought I would see the day when I am feeling better...

Aine x

 

 

Member

Re: September 2016 starters

Hi Ladies

 

Just checking in to see how we are all doing??  I guess some of you will start to have your first mamogram since your op?  Mine is scheduled for the 7th July.

 

I have been getting a lot of pain under my arm on the breast that I had removed, is it possible to get something come back in that area?  Also my breast seems swollen or inflated Woman Very Happy so not not sure again if something is causing this to happen?  Not mentioned to anyone yet but will discuss with my surgeon on the 7th.

 

Hair has grown back really nice and in some sort of style! although grey, will go for a small tidy up some time  this month, but generally happy with it and cannot believe that I actually like it short after spending years trying to grow it a bit longer!

 

Cannot believe  that a year has gone by since diagnoised and all the chemo and rad treatment seems like a blur now. 

 

Apart from the breast pain I am generally very well, apart from an ear infection or something going on with my middle ear, now waiting to have an CT scan to find the route of the problem, been going on for over a month and also have slight loss of hearing!  It''s great getting older isn't it Woman Happy     

 

 

Anyway, look forward to hearing all your news.

 

Take Care

 

Lisa x

 

Member

Re: September 2016 starters

HI all!!!

How are you all enjoying the long weekend??

Olddawn how was going back to work? I hope it was ok?

I am doing ok.

Still the SE's...diarrhoea, fatigue etc.

But getting there........

hoping to go back to teaching for the last couple of days of term

 

Keep telling me how you are getting on ....so I can compare it with my progress....

 

Aine xx

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Re: September 2016 starters

I had my rearranged OH appointment this morning and have FINALLY been declared fit to go back to work next week!

Member

Re: September 2016 starters

Hi ladies,

 

I've found that the internal scarring  abused by radiotherapy has made me feel more pain than I did before and the physio really is necessary. I have a good range of movement but it's not without discomfort. So I reckon the physio is really important. I've also had physio appointments to work on the cording in my other arm as a result of the chemo and that's improving nicely. I thought I'd lost as many nails as I was going to and then another big toe nail came off just as I wanted to start wearing sandals. My hair is a bit like yours Dawn but I'm not sure it will be curly 👎🏻. I was looking forward to that as a bonus. Now I'm back at work full time I am getting more tired and you can often find me in bed by 9pm. It used to be 11 or 12. Anyway, off to Pilates for those who've had breast surgery soon so will sign off for now.

Best wishes to you all xx Cathy

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Re: September 2016 starters

Hello again, it's warm and sunny here too  I am over the cold (no more sniffing or nose blowing!), and pretty well back to normal now. It's been a long time since a cold affected me like that. Everyone says it's because the chemotherapy has weakened my immunity so I can't fight off colds as well as I did before, and they are probably right. So if you see anyone sniffing or coughing give them a wide berth!

 

Thanks for your replies - I thought my husband had gone a bit over the top about postponing the mammogram, but I guess some people just want it to be done asap so hopefully they can be reassured everything is OK. Anyway, it's all water under the bridge now. I assume the mammogram will be similar to the routine screening but I'll let you know what it's like when I've had it. My appointment is at 9.20, so provided it is on time and they don't take forever about it, and the traffic is kind to us, I might just about be able to get to the Moving Forward course which starts at 10.00.

 

My hair has grown quite a lot so I don't bother wearing anything indoors now - its too hot. There is full coverage and it is quite thick, but it hasn't been properly styled so it doesn't look great. There are also more grey hairs than before! It is showing signs of being curly, but whether it will be as curly as it was before only time will tell. I reckon that by July it will be long enough for a trip to the hairdresser for a proper cut, and I'll be able to dump the wig. I don't know whether to stick with short hair or try growing it a bit longer. Don't know how to put up photos but I will look into this.

 

Auntienanna - sorry to hear you are still having problems with the wound healing and excess mucus. My scar tissue seems to have largely gone. I was told to increase the frequency of the post surgery exercises to 4-5 times a day in the run up to radiotherapy, and although this was a pain, it was worth it, because I had no problems with positioning on the radiotherapy machine, and it seems to have helped with the healing as well. Massaging with aqueous cream during and after radiotherapy has also helped reduce the appearance of the scar. The middle tattoo still looks like a big blackhead though! I am still doing the exercises 3 times a day and will continue until I have my final appointment with the specialist at the hospital where I had the radiotherapy on 6 June. I've never had a problem with excess mucus except when I've had a cold (although the Herceptin does make my nose drip from time to time!), so I don't know what drugs are available to stop this, but I hope your GP can help.

 

Aine - glad you are feeling more normal now and are coming to terms with the hair issue. It's funny what you said about putting the horrors of chemo behind us. I thought I had until I got the cold. The first few days of it I had a sore throat and a cough, and it would gradually get worse as the day wore on. It was so horrible at one point that it brought back unhappy memories of T chemotherapy!

 

It is good to feel a bit more normal again and to be able to get out in the garden​ in the sunshine after being stuck indoors with a cold. The garden is looking nice now the roses are starting to come out. Hope you are all managing to get out and enjoy the sunshine.

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Re: September 2016 starters

Hello everyone!  What lovely weather!  Hope you have all been outside taking deep breaths! Smiley Very Happy

 

Im delighted to hear from you all and to read about your current problems...I mean that they are not about the horrors of chemo torture on a daily basis like we used to post on this forum. 

That means we are all moving forward and beginning to establish a new quality of life on a day to day basis that gives us a positivity and a return to the real world.

 

Olddawn....sorry you were so sick...you are usually such a fantastic contributor to this support network.

I would have gone for the mammogram and missed the first day of your course.  I just did the Fatigue Workshop (1day for 4 weeks) and some of the people missed a day or two...didnt matter a bit.  You want to be reassured by the mammogram.  I would love to have one now...but am told not until July.

 

Auntienanna...the hair is such a problem for me...I think about it all the time... look at the October 2016 thread because lots of lovely ladies put up great photos and comments last week in response to my whingeing about not having any hair growth!  My hair is growing yes but I expected it to be much more at this stage.

I got Naturtints hair dye from Holland and Barrett....dyed my hair dark blonde as soon as it was a cm long...didnt do it a bit of harm and omg I felt better not having white hair which was horrific!

Apparently hair grows at 1cm per month so I hope mine does.

I am still wearing the wig.  I have got quite a few comments on how great my hair looks which is extremely off putting.  Its like congratulating someone on being pregnant.  Never do it. 

You could definitely try dyeing your hair yourself....it would do no harm....

 

I hope you are all 'recovering' on schedule. 

I went out with my work colleagues for dinner tonight.  They never even asked me how I was and talked about work all evening.  This is the real world ladies. Woman Very Happy  Be glad to be back!!!!!

 

Positive vibes only ladies.  We have the rest of our lives to look forward to...

Aine Big Hugs to All

 

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Re: September 2016 starters

I would have postponed the mammogram too but I can understand why your husband was anxious not to. I'm due mine next month and I was warned that they might want to do an ultrasound around my scar just to make sure scar tissue isn't hiding any lumps.

Other than that I am trying not to get frustrated at the slow pace of healing. I'm still suffering excess mucus, which is really wearing and drags me down a bit, especially when I vomit every ten days or so, but I have an appointment with my GP next week and I will demand anti-mucus drugs! They give them to asthmatics so I can't see why I can't have them. Fortunately my GP is sensible.

I hope you recover from your cold soon Dawn and that everybody else is recovering well too. How is the hair growth coming along? Mine is long enough to be very short hair. I asked my hairdresser to trim and shape it for me and she suggested I should dye it back to its old colour the next time I go. She does the hair for a couple of other chemo ladies and one of them said it helped her to feel more herself while her hair grew to a length that she was happy with. As I don't feel myself with very short hair I think it is a good piece of advice. I want mine to get to bob length and then I'll decide what to do. (Pre chemo I had very long hair)
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Re: September 2016 starters

I would have postponed the mammogram

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Re: September 2016 starters

For some reason two messages got posted so I have tried to get rid of one.

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Re: September 2016 starters

Hello everyone, just catching up after being out of action for a while with a bad cold.

 

This was the worst cold I have had in years, and was nearly as bad as T chemotherapy! It started with a sore throat and cough followed by very snotty nose. It was so bad that we ended up coming home from holiday a day early, and I also had to postpone my last Herceptin injection because of it.

 

I am now much better, and hoping to return to work next week (at last!). I have a re-arranged OH appointment on Thursday morning (the one I was supposed to have on 2 May was cancelled by them at the last minute - they phoned just as we were about to set off). So fingers crossed there will be no more stupid unnecessary delays over returning to work.

 

I was also warned my treated boob might shrink after radiotherapy, but it is now nearly 6 weeks since it finished, and I have not noticed any change, except the boob is still very slightly swollen, and my skin is back to normal. From what I read in the radiotherapy booklets, there can be delayed effects, so the shape could still change. This is why surgeons want to wait a few months before doing any more surgery, to make sure it has settled down. If I get significant shrinkage, the options will probably be lipofilling, reducing the other boob to match, or padding.

 

My first annual mammogram appointment has also come through. This has come round quicker than I thought, because the appointment is less than 12 months after diagnosis. Unfortunately, the appointment clashes with one of the dates of the Moving Forward course I have booked. I tried to re-arrange the mammogram today, but the only alternative they could offer was a fortnight later (which would be 12 months from diagnosis). My husband made such a fuss about not delaying the mammogram (and couldn't understand why I was content to postpone it) that I have ended up sticking with the original appointment.

 

When I telephoned BCC to cancel the Moving Forward course they said I could still go ahead with it on the three days I can make. I haven't cancelled it yet, but I am not sure I want to go ahead if I can't go to all the sessions, so I will have a think about it over the next few days.

Has anyone else had this problem? And am I being unreasonable in thinking that it would have been perfectly acceptable to postpone the mammogram for a couple of weeks to avoid the clash with the course?

Member

Re: September 2016 starters

Hi

I have an appt early June to see about evening up the other boob and about doing a nipple tattoo.

 

Did you read Blueash's post about her nipple tattoo fading?  I cant remember which thread it was on but that was quite a shock to me. (I hope I didnt dream that!!!)

 

Still not exactly sure if Im going to go through with it but I think why not get it on the nhs and have 2 similar breasts.  My mastectomy and implant op was really straightforward with no complications and so I expect no probs with the evening up operation. 

 

Positive vibes only!!

Aine x

Member

Re: September 2016 starters

Hi Cathy,

 

"The plastic surgeon want to 'tidy me up' and give me a nipple at the end of the year but I'm not sure I want to undergo surgery that will only be cosmetic. We'll see."

 

Mine wants to do the same taking a big of fat from my tummy to fill out hollow breast tissue but not sure whether to have any more done as to be honest it's not something you have on displaySmiley Very Happy nobody knows whether there are any imperfections there or not only you, but time will tell!

Member

Re: September 2016 starters

Hi Lisad,

Yes I had reconstruction. I was told that radiotherapy was likely to 'shrink' it a bit. I too have a bit of space in the bra but got a post surgery one from M&S which is a little padded and hides the gap. I may have some more plastic surgery at the end of the year to 'even up'. It is a bit painful still when doing physio but I don't notice it much otherwise.

 

hugs

 

cathy

Member

Re: September 2016 starters

Hi ladies,

 

Glad to hear that eveyone is getting back to normal or as normal as possible Smiley Very HappySmiley Very Happy

 

Well have been to see the fabulous musical "Beautiful" in London a treat from my lovely friend.  Been on holiday to Cala Bona in Spain over Easter weather was great.

 

Hair growing back nicely and have lots of comments how it suits me really short Smiley Very Happy It's growing back white and dark grey which I expect at 62 and even the bra assistant in John Lewis thought the colour really suited my skin tone, so I guess not all bad.  I am still using using http://www.viviscal.co.uk/viviscal-gorgeous-growth-densifying-elixir twic a day and I am sure this has speeded up the hair growth and I have also been putting it on my eyelashes and they are better than before I started this journey!.

 

Did anyone have a reconstruction surgery?  If so just wondered how you are getting on? as after radiation I find it quite uncomfortable especially at night.  Also getting pains under my arm and sometimes in my collar bone, so my mind goes into  overdrive!.  I ams also coping with chronic lumber pain on both sides and awaiting an MRI scan!

 

Apart from all of thatSmiley Very Happy life is back to normal. 

 

Does anyone have trouble findng the right bra to fit?  I went to John Lewis on Friday and paid £31.00 for a bra that was one size smaller under the bust and one cup bigger than I was buying but the bra fitted beautifully, they only offer it in skintone so not sure if other bras of this size will fit.  I am sure that my reconstruction has shrunk slightly as I seem to have a gap in my bra that is not very nice and don't really want to wear anything inside the bra, so any ideas would be good to hear.

 

Mamogram due on the 7th July I am sure this will come round soon - not looking forward to it.Woman Sad

 

Been on Letrozole now for almost 3 months and have to say I have not experienced any side effects from taking it - any one else had an issues with this if you are taking it?

 

Keep posting ladies, good to keep in contact so see how everyone is doing.  Cannot believe it will be a year next month when first diagnosed!

 

Lisa x

 

   

 

Member

Re: September 2016 starters

Yes everything and anything is better than chemo!!!!!

Delighted to hear from you and that things are improving for you!

Look after yourself well!!!!

 

How is everyone else getting on with life???

 

We still need to support each other....

 

Aine x

 

 

Member

Re: September 2016 starters

Thanks for the prompt Aine.

 

Yesterday I finished the HOPE course run by MacMillan (Help Overcome Problems Effectively). It was a 6 week programme with all attendees having pretty much completed their treatment. One was still on Herceptin. It was BRILLIANT. We got to know so much about each other in those two and a half hour sessions and learned so much. We had to be grateful for something each week and had homework which has involved me completing an assignment that was due a couple of weeks after diagnosis and getting back to aqua classes.  

 

I'm well into my phased return to work. Next week will be 7 hours a day (I started at 3 hours) and they have been good with me and not overwhelmed me with work. I found a free Pilates class for people who have had breast surgery and I'm really enjoying it. There is so much out there for people who have been in our situation.

 

My hair is still really short. However with the exception of my husband everyone thinks it really suits me and one manager even told me to think hard before growing it again. Given that my greatest trauma was worrying about it falling out, enduring the cold cap for three sessions before it was falling out in clumps and leaving bald patches, I'm  amazed that I quite like it too! My eye lashes and back and when I had a make over for my birthday last week the girl said they were really long and she was jealous. Of course leg hair is back too Smiley Sad

 

The anastrolzole is is giving me worse diarrhoea than usual  given my Crohn's disease and I'm still on daily Clexane injections cos of a blood clot caused by my first  PICC line. My follow up appt with the breast care nurse is next week. I've also got an appointment for physio to treat the cording on the first PICC line arm. The physio for radiotherapy continues to be a bit painful and seems sometimes to be getting worse rather than better. But it's all better than being on chemo. Anything is better than being on chemo.  The plastic surgeon want to 'tidy me up' and give me a nipple at the end of the year but I'm not sure I want to undergo surgery that will only be cosmetic. We'll see. 

 

Overall life is is better after cancer. I appreciate the small things now and don't get distracted by the rubbish . Don't get me started on the election though.

 

sorry to go on so long. Best wishes to you all. Xxxxxxxx

Member

Re: September 2016 starters

Hello everyone and how are you all getting on?

 

I am just updating this thread to remind you all that we are now starting to get over the bad SEs and are trying to get some normality and routine back into our disrupted lives!!!

 

I am getting better every week and beginning to get back my personality and energy!!!

 

It would be lovely to hear how you are all feeling now.  What an awful winter we all had.  Isnt it great to see the sunshine and to get outside for a while?  And to be talking about holidays instead of talking about being sick!

 

So let us all know how you are doing...my big gripe at the moment is my hair....omg it is so slow to grow and I am getting sick of having a convict haircut!!  My wig is getting a bit scraggy and I have ordered a replacement but it is taking forever.  The mesh bit at the front is curling up and is obvious under overhead lighting.

 

Treat yourselves...you deserve it....I am buying every flowering shrub I see in the shops!!  Before this I wouldnt have wasted my money!!!!

 

Hugs from Aine

Member

Re: September 2016 starters

Hi Aine, looking forward to the mascara moment!!

Think you are about 3 months ahead of me and its lovely to read that you are feeling so much better.

One more chemo for me and looking forward to the hair growing back but think it might be a pain until it has some length.

Will enjoy the wig in the meantime and no such thing as a bad hair day !!

Had my hair coloured for years and very curious to see how it grows back.

Enjoy your day - Lou xx

Member

Re: September 2016 starters

Thanks Aine. Glad you're feeling better and your eyelashes have returned.

 

I was also feeling a lot better before l started having radiotherapy! About a week ago my energy levels started to drop, and it's now a struggle to get up in the morning and do my exercises. I don't know whether it is the radiotherapy itself or the travelling and waiting around when we get to the hospital that is wearing me down.

 

The internet is a wonderful thing - this forum wouldn't exist without it - but like all technology it has positives and negatives. I take the view nowadays that if something sounds depressing I won't bother to read it. I prefer to look at positive stories and articles about new research or treatments.

Member

Re: September 2016 starters

hi again!!!

I am starting a Fatigue Workshop on thursday for four thursdays.

I will let you all know how beneficial it is.

I am still bursting with energy and then fall off a cliff.....up and down, up and down.

 

It is very discouraging to read the internet don't you all think????

 

Miranda Hart talking about her best friend passing away from cancer and the Nolan sisters also talking about how cancer has affected them and their families.....it is extremely scary to read when we are all thinking about getting better and putting it all behind us.....

 

I don't know how to deal with all of that.  What do you all think??

 

x

Member

Re: September 2016 starters

Hi all you ladies!!!

I hope you are all feeling better as the days and weeks go by.

I am really improving all the time.

 

I actually was able to put mascara on yesterday for the first time in 6 months....Yeeeeeesssss!

I can't believe how happy that made me.  I no longer look like a freak!!

 

Lisad ....I also am wondering when I can start to colour my hair.

Its starting to grow but very fluffy and not like real hair.

Trouble is the hairline is starting to show around the edge of the wig and it is white omg.

I am really tempted to dye it now but I am afraid that it will make it fall out as it is still very fine.

 

Any advice out there as to whether or not I should dye it?????

 

Aine x

Member

Re: September 2016 starters

Hello again, Madmac and Lisa, nice to see you are both returning to normality.

 

I still have a way to go because of the radiotherapy. I'm glad we managed to fit a holiday in before it started because I was beginning to get fed up and bored.

 

My hair is now about an inch long, but thin in places and I've also got more grey hairs than before like Madmac (hardly surprising really). I'm not brave enough to dump the wig just yet, but hope that by May my hair will be long enough and presentable enough to go out with 'nothing on.'

 

Nice to hear from you again, keep in touch.

Member

Re: September 2016 starters

Hi Ladies

 

Just checking in, god it's so diffcult to find this thread, with so many posts!

 

Sounds, as if most of  you have now completed treatment and settling back in to work routine shortly. Although I expect it's a bit scary if you have been out of the work place for quite a few months to make the adjustment to return.

 

I work for my partner, so have been able to work from home or go  to the office, we have an office in a multi office business centre so it has been easy for me, not sure how I would be coping if I was in full time employment.  

 

I am pretty well almost feel as good as before I started this journey.  I still have a very painful shoulder which I am taking pain killers for especially at night when it appears at it's worst.  Not sure what has caused this but if it is still there in June when I see my surgeon I will discuss it with her.

 

Have been using http://www.viviscal.co.uk/viviscal-gorgeous-growth-densifying-elixir nad can see a definate improvement in hair growth I have also been been putting some on an ear bud and putting in our my eyelashes and they have really grown.  Also started using http://haarwachstum.plantur21.de/en/products/nutri-caffeine-elixir.html

 

Trying to pluck up the courage of going out without anything on, I think I have been hiding under my scarves for too longWoman LOL  My hair is coming through dark grey and also white.  Does anyone know when you can colour your hair, dont want to do it yet until I have a full head of hair again, but just wondered if there was a timescale?   

 

Anyway ladies keep well and keep posting  xxx

 

 

Member

Re: September 2016 starters

Hello ladies, 

 

i havent been here here in such a long time and I donut know what prompted me to pop in tonight but it is lovely to see posts from familiar names. I hope you are all well.

 

This is my third week back at work after 8 months. I had quite a frank discussion with my manager before returning and I had an OH discussion last week. My manager and I had already come up with a sensible plan before OH and they were happy with the content. I was a nervous wreck on Day 1 but once I actually got my feet across the door it's been great. It feel like another step towards getting back to "normal" and everyone has been really supportive. I worked 16 hours over four days week 1, 20 hours over five days last week and I am doing 26 hours this week. but I am working from home one day a week which helps. 

 

Ive been left with some issues following treatment including cording and carpal tunnel syndrome from the Letrozole. But my work have got me all sorts on new equipment to see if it helps. 

 

And the big news...I had my first hair cut and colour treatment last Thursday. Woohoo! I'm amazed at how much thicker it looks and it's actually in quite good considition. And yeah people tell me I suit it too. But to be honest I don't really care what people think anymore. I'm just happy to be wig free. 

Member

Re: September 2016 starters

Nice to hear from you both!

 

See See - my return to work arrangements will be similar. OH recommend a similar phased return for me, starting with only a few hours and building up gradually. Realistically I don't think I'll be back until May, allowing time to recover from radiotherapy, because there will have to be another OH return to work interview before I will be allowed to go back.

 

Vintage - I went to my GP to get a 'fit' note, as I'd originally been told to do, only to be told then that I also had to have an interview with an OH advisor - and then she wouldn't sign me off as being fit to return! I guess it depends on your employer's policy, so you need to ask your manager (and hope he or she is better informed than mine was).

Member

Re: September 2016 starters

Hi Vintage,

I had an assessment with the Occupational Health advisor used by my employer and my manager went with what they suggested. It's been 10 months for me, so yes it's a bit scary going  back. Not sure I'll be able to fit it in!! 

Take care

Cathy x

Member

Re: September 2016 starters

Hi See See
I am not back at work yet eather. Can I ask , did you have to discuss with your GP first then speak to your work about a staged return? I am frightened it's going to be too much so not in a hurry to go back. Its nearly a year since for me, i think i will have forgotten alot. But yes I am thinking about what hours would work out best.
Well done on no wig🙌 my hair is coming in almost a centimeter at back and sides but still pretty bald at the Crown 😩 so I look a bit like an old man from the back.
Hey OldDawn
You are almost there x I found my 15 rads not too bad at the time but worse after I had finished them. I think it keeps working for a good month after. It was not unbearable but tender with nerve pains. It has settled down now.

Take care ladies
Vxx
Member

Re: September 2016 starters

Hi Dawn,

 

I've just been in for my return to work interview and will be starting on a phased return on 13th April. I will do 3 hours a day in the first week; 4 hours on the second week and so on. They've agreed that any side effects of ongoing treatment requiring time off won't be treated as sick leave (e.g. my zoledronate injections). It's rather daunting but I have to do it sometime. I do get really tired occasionally without warning, and upset (the same). I went in without my wig despite my hair regrow the bring minimal because for the last few days it's just been too hot!!! Several people said it suited me. I'm beginning to think so too despite the fact that losing my hair was my biggest concern when it happened. 

 

 

Good luck to everyone still having treatment.

Member

Re: September 2016 starters

Hello ladies - where is everyone? I expect having finished your active treatment a lot of you are now back at work or doing other more interesting things, and too busy to post. Unfortunately, as you know, my radiotherapy was delayed, and didn't start until 13 March. I had number 10 of the 15 whole breast treatments today, and will be seeing the oncologist on Wednesday to talk about 'boosters.' If I go ahead with them the radiotherapy won't be finished until just before Easter.

Community Champion

Re: September 2016 starters

As some of you know I used the cold cap and kept lots of hair but for those of you that lost it all and it is now coming back, I can really recommend toppers. They are clip in so really secure but you have to have a bit of hair for them to clip on to. I wear them because although I have lots of hair it is thin and shabby.

 

There are a few but this is my favourite:

http://www.internetwigs.com/toppers/medium-tp-top-piece-.html

 

You don't have to pay VAT on them if you fill in the form and tell them you have hair loss due to medical reasons.

Member

Re: September 2016 starters

I had trouble swallowing things during my T cycles of chemotherapy, at the same time as the other mouth problems (dry, sore mouth and tongue etc). It went away when they did (around Day 11 or 12) so I assumed they were all connected. I eventually worked out that the problem was a swollen throat. It wasn't realy very sore, but it was swollen and constricted making it hard to swallow solids. Difflam helped a bit.

 

I managed to swallow tablets most of the time but the antibiotics I was on for the infection were quite big tablets, so I had to get the liquid version when it got really bad. I don't know whether that is an option for you. The main problem I had was swallowing solid food, so I had to eat mostly soft foods (e.g. porridge, soggy Weetabix, pureed soup, shepherd's pie and fish pie).

 

I haven't had anything similar with Herceptin only so far (had Herceptin number 7 on Monday). If it persists the best thing to do is go to the doctors and see what they suggest.

Member

Re: September 2016 starters

Hi!

Actually we only discovered Newgrange a few years ago and have taken all our visitors there since!  Older than the Pyramids!  It is very impressive and has a great visitors centre.

However you have to crouch and walk up a narrow tunnel so definitely not the place to wear a wig!!!!!

 

I was on Irish tv last weekend - just me clapping - and my wig looked perfectly ok I'm glad to say!!

 

A new SE this week!

I am having trouble swallowing tablets - they stick in my throat and take ages to disappear.  Never had problems before.

Anyone else experienced this??

 

Also my toes are going numb.  Big toes and now all my toes.  Never had any of this during chemo.

I have plum nail varnish on my nails cos they are disgusting looking.

 

Herceptin Nbr 6 last week ....I had no SEs at all so Im delighted.  My medical team were right that the SEs diminish over time.

 

We are getting there ladies.  I hope you are all beginning to feel more cheerful and energy levels are going up as the weeks go on. Go us!!!

A x