Had my 1st appointment since finishing treatment on 5th Sept. Saw yet another oncologist, she checked my scar and reassured me it was OK, I was a bit concerned as it still feels quite lumpy, so at least I know what normal ( for me) feels like. She also said feeling low after treatment is normal, I couldn't avoid blubbing at one point. I'm having injections to supress my ovaries and now have set wheels in motion to have them removed, at 46 I have no need for them and it will mean less drugs.
Yesterday went to a moving on day organised by local breast care nurses, it was good to talk to many others and share experiences. There were lots of useful sessions, especially on reconstruction, I'm still not sure about this, but they won't do anything until at least 12 months from RADS.
I have also had a session with the lymphoedema clinic, the idea is to prevent rather than treat, lots of tips, nothing new really but it was nice to talk to the professionals again and they did do a measurement of fluid using some kinds of electrodes I think they were, they were normal anyway and they'll be measured every 3 months. After MX, full node clearance and RADS I'm at a greater risk of lymphoedema, they told me. Yippee.
Still having physio for my good arm, it's a bit better.
Still have wobbly moments and hope one day cancer thoughts will occupy less time.
Interesting about your neck and arm problems..I've now got a frozen shoulder on my 'good' side, which is really annoying as I'd hoped to have two working arms by now! Hope you improve soon.
I might try some mouthwash - I suspect my whole digestive tract is still a bit messed up by the chemo as I have had a few mild tummy upsets.
Yes, that book is good. I liked the convalescence bit too, I think the victorians had the right idea - I prescribe us all a nice break by the seaside!
Whilst 'getting back to normal' helps alot, I do think we also need to recognise that our bodies and minds have been through a heck of a lot, and that it does take time to recover.
I'm taking things slowly, enjoying feeling well, (but tired) and taking pleasure in small things, like a lovely walk in the sunshine yesterday with the beautiful autumn colours.
After reading the article in the Guardian mentioned on this site I bought 'The Cancer Survivor's Guide'. It seems to have been written for me and now I don't feel in such a rush to climb Everest or swim the channel, it's OK to sometimes feel rubbish and tired. The book says we should think of a convalescence like the Victorians had after an illness. I thought this was a good word to use.
I've had some physiotherapy for neck and arm problems, not sure if this is due to my MX possibly overusing my right arm to protect the left?
Catseye you have my sympathy the dry mouth was horrid but mine went about 10 days after each cycle, I used a lot of mouth wash.
I finished chemo in July, but still have a really dry, furry mouth. My GP said it 'may' go with time and that the radiotherapy probably didn't help, but I was wondering if anyone has had this, and if they have any helpful tips.
Thanks and I hope everyone is keeping well,
Hiya there Spacehopper,
Regarding your hair it is 6 months before you can colour it.
I had what I call action man hair after my chemo-(Very short and stubbly) and I coloured it with a natural henna dye.
Oh it was fine until I went to the hairdressers to get my hair coloured-that henna sticks like glue to your hair ha ha.
But I was impatient and wanted a colour to my hair -a few interesting gold and red options available.
Also what I did was,when offered the cold cap I did it once and thought heck I need to control this better.And having a cap on that was giving me a brain freeze was not helping hee hee.It does work for some lucky people but for me I found it very uncomfortable.
I have very long blonde hair,I cut it to shoulder length and then asked my friend to shave my head.I found that to be the best for me.I could not bear freaking out with clumps of hair on the pillow in the morning.
My hair grew in at the same rate and I have my long hair back,took a while but things do grow back.
I had a wig but found it so warm and itchy especially with the flushings,so I ended up wearing my bandana a lot.
The stares from people did get me down a lot but a day came when I went-Heck I am alive and if they can look at me then I exsist,therefore Iam part of Society and the real world again.
It is hard but turn a negative into a positive,even just for a moment and you will gain confidence again and feel part of the world you left when the hospital became your life,your social outings and your go to place.
Open the locks you have built up to keep yourself sane and safe.You will be surprised that the world is not as cruel as you first thought.
People will always have problems coping with how they look and if they look at you then you are helping them to be kinder to themselves in their own mirror.Because you do know,don't you -that you are stronger than you think,more beautiful than you think and such a special person that you will be stronger than any look anyone can give you.
My eyebrows and eyelashes did not seem affected.But I do use a great product called Brow zings from Benefit make up.It is a wax and a colour in a little pallette,a small tweezer,and 2 small brushes for colouring and defining as well as filling in eyebrows.
False eyelashes are everywhere now and if you feel self concious as we all do-there are lots to choose from and not just giant false ones.Superdrug in Glasgow has a Brow bar and they can fit them at not too an expensive price.They last for about 6 weeks I think and you can also have individual lashes added and built up to complete a full natural looking set.
Also you can have an eyebrow tint-that will colour what you have and you can fill in the rest with the brow zings or an eyebrow pencil - Benefit Brow Bar in Debenhams,Silverburn,Glasgow.
Check out other debenhams stores near you for a Benefit make up Brow Bar - you will need a patch test first if getting a eyebrow or eyelash tint -these are still dyes.
The girls are very happy to help and advise you and can fit false eyelashes for you -that is with special glue.If you let them know you can not have a tint at that time they will help you and show you how to create and fill in your eyebrows.
Just remember the girls are young and like thick eyebrows and use a lot of the brow zing make up.Just tell them how your eyebrows used to be and they will show you how to create that.
Hope this helps you and if it can help others then I am glad.We all have different experiences of chemo,reconstructions and how our body copes but we are all here together in the hope of helping each other.
Im so thrilled !! , I popped in to see my hairdresser yesterday to show her my new coering of WHITE hair, as last time I saw her I was bald ( with scarf on ) very bloated and feeling preety Cr*p all round, anyway I went in to ask when she thought it would need trimming and she said NOW , lol I couldnt believe it, so on Thursday im having my first trim since shaving my hair off for chemo back in March , it wont look very different obviously she is just going to tidy it up around the back/ears etc but I shall be sitting in the hairdressers chair , the weight is slowly and I mean slowly coming off, its strange how quickly it goes on isnt it ? ive done 3 part time weeks back at work and after next week I am back five afternoons which Im not as happy about as I thought I would be, work dosent seem so important now but perhaps I will feel differently in a few months, lovely to read posts and see many familiar names/faces getting back to their lives , so sad to see many new names joining the forums as it means more poor souls having to face what we have been through, but we will all be here for them I am sure this forum is amazing, love and good vibes to you all , onwards & upwards
Good to see we're all thinking ahead and starting to enjoy all the little things. I agree with catseye you don't realise how hard its been to get through until you come out the other side.
My poor lovely nurses, my last radiotherapy session I was so excited about finishing, I was on the table getting set up and the tears started to flow....I couldn't stop them.....its the relief, I still can't stop crying when I thank everyone for their support and kind words and think about the year and all the treatment, emotions. I'm blaming the tamoxifen for making me more emotional hee hee.
Catseye thank you re my hair, I'm not brave enough to go without a buff, scarf or wig yet....also its very chilly. Its growing quite alot on the top and slower round the sides, but a good covering and I love it I've got hair back. All the rest has grown back too mixed blessings...hairs on the chin grrr hee hee
I'm back at work managing 2x7hr days....need to build back up to 2x12hr days, 2x12hr nights. My doc has given me a phased return certificate for work with no nights until the end of October and to go and see her before I start nights. My boss is being great and said best to stick with this until I'm past the 'fortnight' tiredness. Although I've been shattered this weekend and spent most of it sleeping and watching films. Looking forward to the day when I don't have to think about how much rest I'm getting before saying yes to something.
Kathryn thank you for starting this thread xx warm hugs xx
I've been reading this forum since my diagnosis in January, and have found it really helpful and supportive. I have just plucked up the courage to join in!
I had a WLE and reconstruction, then 6 x FEC and have just finished 30 Rads and started 5 years of Tamoxifen. Like Kathryn, I feel a bit 'abandoned' and am getting fed up of everyone saying "all done, back to normal now".
However, apart from feeling very tired, (I was told this would peak two weeks after rads finished), I do feel well and now realise how ill I felt during treatment!
My hair is growing back, (I gave up on the cold cap after two FEC - was getting sick of hoovering up hair, or eating it when it was falling in my food), but I am a long way off booking a hairdressers appointment and not ready to go out without my wig. Eyebrows and lashes are good though.
I am not enjoying the hot flushes but am experimenting with reducing caffeine and (sadly), wine.
My thoughts are now turning to when to return to work, a scarey prospect, but I feel I need to get a holiday in first!
Spacehopper: I read it is not advisable to colour your hair for at least 6 months as it could still be weak, but that natural products, (henna or vegetable based colour), may be OK. This was in the BCC booklet, "Breast Cancer and Hair Loss", and in a booklet from the charity "My New Hair".
Best Wishes to everyone,
Popping in from the Mad Marchies to read up on others that are at the finishing post. I was diagnosed last December, lumpectomy in January and started Chemo in March. Finished Rads in August and now back at work 6hrs a day, 4 days a week. I too was impatient for eye lashes and brows but when they started to come back they were literally through within about 7-10 days. Thumb nails look awful but its slowly growing out, does anybody still get the tingly feet and fingers, it gets me so frustrated.
I know what you mean about appreciating more in life, things before we took for granted
Take care, hugs - Liz x
Hobo, this disease really is the pits.
Good luck with RADS keep moisturising, it's 4 weeks since my last session and my skin is still red but no soreness and I'm still liberally applying aqueous cream. You sound very positive not always possible I'm sure. I'm impatient for my hair too, I had chemo first so last chemo was end May so my head now has a covering, I went round town today without a scarf but have now bought a nice hat as it's getting cold.
Had a physio session today so now have more exercises to do to relieve the stiffness in my neck.
Lottie I share your joy, even the heavy rain today! One day we'll feel the wind blowing through our hair.
Keep well love
Im not quite at the finishing line but I was diagnosed in March this year aged 32, had MX and full node clearence 11/17 had cancer. Had 3xFEC 3XTAX. Horrendous time on tax was hospitalised whilst on it. Start my 15 RAD sessions on 2nd Oct start 5 years Tamoxifen tomorrow. Had my first week of feeling happy as been able to do things i was too ill to do whilst on chemo, walking the dog, seeing friends etc but very emotional now, think i have crashed back down to earth. Starting Tamoxifen is making me feel sad as was 2weeks away from IVF when got diagnosed,only now is it hitting me what my 'new' life consists of. But trying to look at tamoxifen as a good thing and i am grateful to still have a life. Mynails are awful although still have them,just! dread to think how long they last like this?? my arm where i had chemo pumped in has a horrible vein that wont let me straighten it and my other arm is swollen and although i get it checked regular i fear its the onset of lymphoedema. Had last chemo 4weeks ago but already im frustrated that no eyelashes have grown back or eyebrows, now that im feeling a bit better i want to start looking it! Im hoping to go away somewhere very soon for a deserved break, i intend to return to return to work part time as my job is very physical and feel like full time would be too much for me. Feels sad that im now 33 having to go part time, I thought I would be pregnant this year not getting the horrid C!!
I really struggle with my thoughts sometimes as find it hard to beleive i will have seen the back of this for years to come, especially as it was so aggresive and in so many nodes.
Lots of luck to us on this journey as it doesnt end at the last date of treatment,
What a great thread, I too finished my treatment 3rd sept and feel a little lost after it all being so full on for months, DX feb, surgery, chemo ( Fec-Tax ) then 20 x rads and now Tamoxifen for minimum 2 years Phew !! Im back at work part time now, hair growing back nicely but WHITE Im 49 🙂 but its hair and im sooo pleased to have it, eyelashes back so can wear mascara, oh the joys its the simple things I appreciate so much, walking the dog, the smell of fresh grass, rain even I know it sounds corny but I actually am noticing these things now, this sure has been an eye opening experience and I promise never to take the little things for granted anymore,
Hello 'Spacehopper', I've just about managed to hold onto my nails, it is taking ages for them to grow back properly. I did have some good news at the dentist though, after all that comfort eating and horrid dry mouth whilst on chemo I felt sure my teeth would be in a bad way, but my dentist, who had been concerned about my receeding gums was quite pleased, mind you I have been spending at least 10 mins every morning, brushing and flossing etc I 've now got to keep up this regime to avoid future dental work and expensive bills.
I'm now much more body aware so was very concerned when I had a stiffness in my neck which lasted more than a few days, so got on the phone to the BCN. After asking me a few questions she reassured me it wasn't anything serious and has now referred me to a physiotherapist as it is still stiff 2 weeks later. I'm very conscious of my posture and trying to keep straight but I still fell very lopsided even with the prothesis.
Mads79 I'm on Tamoxifen too, I'm not very good about remembering to take it and nearly went on holiday without them. I'm more achey than usual and wonder if it could be the Tamoxifen. I'm also having injections to supress my ovaries so now am in a early menopause at 46.
Spacehopper you must have a long journey to Bath for RADS, I live in Taunton and all my treatment has been at the same hospital, a 10 minute drive away. The cancer centre has only been open about 3 years, I've lost count of the times I say how grateful I am to live so close to a good hospital. Not sure about hair colour, mine is so soft at the moment but very short still, there are a few grey strands just above the ears, they had appeared before my hair fell out so I can't blame the treatment. I went out 'commando' for the first time on Thursday but everyone there knew about my cancer, I still need to pluck up the courage to go out amongst stangers, I expect no one will notice. There are lots of women with very short hair but mine doesn't really look like is supposed to be short as it's not growing at the same rate, top and front is very short but it looks lovely from the back, besides it's getting quite cold now.
Keep well and look after yourselves.
Hi Kathryn, I think this is a great idea! I was dx 18.12.11, ops Jan & Feb 12, Chemo from April 3 FEC, 3TAX (tax was awful) all at Swindon then had to change hosps for my radio 20 sessions at Bath, 3 to go. Tamoxifen for 5yrs.
Its true while you're going through it you keep focused on the next step. Everyone is there to support you and help you work through all the side effects.
Mads79, I'm the same the hosp stuff and talking about it is fine although the nearer it comes to the end its strange I'm becoming more tearful watching an adverts, seeing a bow which has really surprised me.
I know what you mean about nails, 6 have all fallen apart now and painful. I'm keeping them short with a clear polish to help keep them together. Went into a nail place to ask advice(I won't shame them by naming).....they didn't seem to understand my telling them and showing them my nails are coming apart, peeling off and they kept offering me gel nails? So I smiled politely as you do and said thanks but no thanks. Like you I'm now looking through the forum for going forward and getting back to 'normal'.
Also, does anyone know how soon you can colour your hair when it grows back?
Hi Kathryn. I'm at a similar point. I a couple of weeks I'll have my final herceptin and then it's just the 4 and odd years of Tamoxifen to deal with! It's surreal looking back at the past 18 months. I find going to the cancer care suite and other appointments absolutely fine, but walk past a 'Tickled pink' sign in Asda and I get choked. It's madness!
Hope you're keeping well. Onwards & upwards, eh! 🙂
Sorry you haven't had any replies yet but I'm sure people will be along soon (a few threads are very busy at the moment which pushes new ones further and further down the list). I think it could be a really interesting and supportive thread, and wish you well as you move on and face these new challenges. (I'm just over two years from diagnosis but never quite managed to escape from the forum as it's so friendly!!)
I've been following various threads since my DX in Jan and had my last RADS on 5th Sept 8 months after DX. So I thought I'd start a new thread for those finishing and wondering what next?
I had chemo first (3 x FEC 3 X TAX) usual SEs but nothing too dramatic thank goodness.
MX and node clearance in July.
15 lots of RADS finishing on 5th Sept.
Taking Tamoxifen and 3 monthly injections to supress my ovaries.
Now I wonder if any of you ladies would care to share the journey of finding a decent bra, booking that long awaited visit to the hairdresser/leg wax, wondering if I'll never be ashamed of the state of my nails, not to mention the hot flushes, extra weight and worry about lymphoedema. And of course comments like 'now it's all over you can get back to 'normal'.
Strangely enough I miss the regular hosp visits but it's reassuring to know there's always a BCN at the end of the phone, but before I go ringing them with every niggle I hope there'll be someone on this forum to add some pearls of wisdom, there usually is.
Looking forward to sharing experiences.