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 long 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
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.
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).
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!!
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.
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.
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:
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.
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.
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!!!
Aine - maybe you'd be better off visiting Newgrange instead! You may have already been but if not, check it out: http://www.newgrange.com
it's nearer to you, and is more impressive than Stonehenge. And it's older!
Hello again everyone!
We got back from our holiday on Saturday. The weather was a lot better than the forecast suggested it would be. My wig only came off a couple of times, the first time when I was wearing a wide brimmed hat which blew off in the wind and took the wig off with it, and the second time at Stonehenge when my woolly hat got caught on a twig sticking out of the doorway of one of the reconstructed Neolithic houses, also taking my wig off with it! I had to dash back inside where some very kind ladies helped me put the wig back on straight. But at least I was able to get back into the habit of walking. We didn't do very long walks, only one or two miles at most (e.g. around Stourhead landscape gardens, and along the Kennet and Avon Canal from Bradford-on-Avon to Avoncliffe Viaduct and back), but it's a start. It is back to the treatment treadmill now, though. I had my first radiotherapy treatment yesterday morning (at last!), plus Herceptin 7/18 in the afternoon.
Aine - thanks for the advice. Having thought about it, I now realise that you and the OH doctor are right about not being ready to go back to work yet. 23 radiotherapies will be a lot to cope with. I didn't start to worry about the effects of the radiotherapy until just before I had the OH interview. After looking into the SEs, I was seriously considering not going ahead with it so I asked for the OH report to cover that scenario. I only confirmed I would have the radiotherapy last Friday, while on holiday. I'm still not 100% committed to having the boosters and will see how I get on with the standard 15 first. The slow hair growth must be so frustrating, but you will probably find it starts growing faster soon. I must admit there are times when I am a bit impatient with it. I will be glad when I can say goodbye to the wig, even though it would have been difficult to face the world without it. I had a similar comment about my wig not long after I started wearing it, and took it as a sign that the wig was OK!
Auntienanna - congratulations on finishing your radiotherapy - I've only just started mine! Sorry to hear you are still suffering with nausea and vomiting so long after your chemotherapy ended. It could be the hormone tablets rather than the chemotherapy because they can also cause sickness. I don't think it is normal to be still getting this SE from chemotherapy so long after finishing it, so I would definitely seek further help if I were you. The zombifying anti-sickness tablet (Cyclizine) worked for me, and you only have a 3 day course of it, but you wouldn't be able to work while you are taking it. I can't remember whether they have tried you with Akynzeo before, but if not, it would be worth a try - you have nothing to lose by asking. They should be prepared to give you something new if nothing you have had up to now is helping. You are already having to cope with fatigue while working on busy wards and studying, so you shouldn't have to put up with this any more. Hope you get some help with this soon.
Lisad - it's good to see you are settlng back into some normality after your active treatment, hope you enjoy the musical and holiday. My hair is growing back fast as well, it is now about 1cm long but still a bit thin in places and there are more grey hairs than there used to be before chemotherapy, so I am not brave enough to dump the wig just yet. I also have eyebrows and eyelashes (hooray!) and hairy legs (boo!). I am just using E45 shampoo though and will let my hair grow in its own time - I don't think it needs a lot of help anyway. I can't advise on your shoulder problem I'm afraid. You may be right about the Letrozole causing it but it could be completely unrelated. As it has persisted for 3 weeks, it is probably best to get it checked out.
Truey - you are ahead of me with the radiotherapy, despite starting and finishing your chemotherapy after me. They were very slow organising it after the oncologist said it should start 4 weeks after the operation, which was on 19 January. If this had happened I would have nearly finished it by now instead of only just starting, and I wouldn't have had time to worry about it and have second thoughts. At least it is now underway, and unless there are any unforeseen delays it will be finished by Easter.
Im sorry you are still getting nausea at this stage. Could you not go on some tablets to lessen it? I was offered several choices when I had nausea - mind you they either didnt work or zombified me!
And as for SEs Im still getting sore fingertips, nails and hands. I had another Herceptin on Thursday and they have got worse since then. Also numb toes which is strange! Im just going to be patient and hope they will gradually lessen over the next 3 weeks. My nails are disgusting looking - black and rising off my fingers. Painted them plum which looks great so at least thats a success.
Im soo fed up with my bald hair....the wig is ok and I have fluff now. My friend tells me that when I have some hair the wig will become more and more uncomfortable so that the next problem to deal with. I had my first comments about my hair from a woman I havent seen for a while. She said my hair was looking great and had I just been to the hairdressers. Yuk!!! I just changed the subject but I hope other people arent thinking the same thing or they will eventually figure out its a wig.
Im getting soo bored - you are lucky Auntienanna that you are studying - it keeps you busy. You are fantastic to have kept going throughout all of this - I just dont know how you did it. Im a teacher and am starting to miss the pupils and staff. But my energy levels are all over the place and no way could I go back to school wearing a wig anyway. Ah well as the weather improves I have to enjoy being outside again.
How is everyone else doing? I hope you are all getting over RT and all our lovely SEs. I am waiting for my next appt with my consultant in April to see how I move forward from here. Patience. Patience
Thanks Rosie & Sue for your replies.
Sue it's weird about the shoulder pain, i shall monitor and see if it settles down now rads have finsished. Although I do have bone pain in my hands and wrists so not sure if that's from taking Letrozole.
I felt quite emotional today, not sure why as it means no more on going to hospital apts for a while just check ups.
It will be inetresting to see how the next couple of weeks go as nurses did advise today that the area could get more sore and may also feel more tired
Thanks Rosie for the recommendation of "Beautiful" looking forward to it..
Perhaps July time we can sort out about meeting up in September as we will need a central location which is best for all of us. I will keep it posted on this thread, as I am getting lost on the forum with so many threads running.
I started chemo in the last few days of September so am only just now starting rads. I've had 3 sessions so far. I thought I would just mention that I have noticed and ache in the shoulder and upper arm of my mx side since starting rads; like you I haven't had this before. Hopefully this means it is a result of the rads and not the range of awful things our minds leap to!
I'm having 15 rads with both chest wall and clavicle area done every time. I think the ache might be fromthe clavicle because I can feel it most when I turn my head.
Congratulations in advance for finishing rads tomorrrow. Hope it goes OK - I turmed up this morning for number 4 only to be told the system was down and they would have to add an extra one onto the end. Good job I hadn't already set up a celebration for the end!
Regarding hair, I'm using Plantur 38 caffeine shampoo and my hair is growing at a fantastic rate
it's good to hear all your updates, and pleased that most of us are finally at the end of our hospital tretament. It's been a long 9 months. I finish my rads on Tuesday
So far no side effects, except for the usual redding of the skin, but other than that all Ok. I have had a nagging pain in my shoulder joint on the side I had my mx and never had pain there before and 3 weeks in it is still there and now quite painful. Having to my your arms in the strurips everyday hasn't help so I am hoping that the pain will settle down, of course your mind goes in to over drive wondering if the pain is something else going on!
Like Auntieanna, I am surprised how quickly my hair is coming back through, although I think the dark grey and white hair is a very popular colour Hopefully in about 3 months I will be able to colour it again.
I was talking to a lady at one of my apts and surprised how much hair growth she had and she said that she had been using http://www.viviscal.co.uk/viviscal-gorgeous-growth-densifying-elixir so I bought some at Holland & Barrett and also bought the shampoo as it has get one buy one and get one half price I am using twice a day to speed up the process She also had quite long eyelashes and she said that she had also been putting it on her eyelashes.
I wish you all the very best going forward. My friend who has been so supportive throughout my chemo and my rad tretament has treated me to see "Beautful'" The Carole King story http://www.lovetheatre.com/tickets/3990/Beautiful-The-Carole-King-Musical?nst=0&utm_source=bing&utm_... in April and then I am going away with a friend over the Easter break to Majorica to hopefully put some colour back in my checks"
Wishing one and all a happy rest of the year and hope all goes well with you. If anyone still wishes to meet up around September time, I happy to organise this, so just let me know.
It is wonderful to see so many people reaching the end of their treatment, one less thing to worry about!! My radiotherapy finished on 28th Feb and apart from reddened and itchy skin I don't seem to have suffered too many SEs from it. I am sure the tiredness has played it's part too but working on placement helps me not to notice it too much. I have had a "study week" this week, but I buckled down and made myself work hard for a couple of days so that I could finish everything and have most of the week to rest. The nausea and occasional vomiting from chemo are still lingering, but I was wondering if the RT was preventing that from clearing up as quickly as it might have done? At least it isn't permanent nausea any more, so much easier to deal with mentally.
Aine, I agree about people thinking that once the treatment is over people expect you to bounce back overnight. The only ones who don't are those who have had family members go through cancer treatment, and a couple of my uni tutors who used to be cancer nurses. Having said that it is nice to be told that you are looking so much brighter and better than a few weeks ago. Definitely ego boosting! I do like your sign idea, and I do hope that at least some of your children do remember you and your attitude once they have grown up and left school. I find that my attitude has changed that way too. Life is too unpredictable to not grab opportunities when you are presented with them. I find it has even improved my nursing skills and attitude. Yes, I am going to make mistakes but whilst a student I am shielded from the worst to a degree, so I need to grab life with both hands and just go for it!
SeeSee, it is a wonderful feeling knowing you have completed treatment but still be gentle with yourself. I was told after my final RT that sometimes the SEs can get a little worse in the following 2-3 weeks before they get better. Obviously that isn't the same for everybody but they told me to be prepared for that. That is why they leave a follow up for 6 weeks. I agree with Aine about exercise, although at the moment I don't do a vast amount when I'm not at work but I make up for it spending a 9 hour shift on my feet. I must do at least 20,000 steps a day then!!!!
Rosie, I am sorry that you have had to put up with such a lot during your time on chemo. It must have made a difficult time a hundred times worse. You are such a wonderfully strong person to have come out the other side fighting, as you have done.
Dawn, I am sorry that your return to work has been so botched. I hope that it is all sorted by the time you come off holiday and that you enjoy the extra time off. I completely understand you wanting "normal" back as soon as possible, I am the same, but sometimes these hiccups work out for the best. I used my extra time off as a period of reflection and picking up some of the dropped threads from my non-working life before plunging into work again.
Onwards and upwards, ladies, we have come this far, we can do it!! I am enjoying having eyebrows again - they grew back quite quickly and it was a lovely feeling going to have them threaded once more. In fact I think they need doing again! My hair is also growing back well - I look rather like Sinead O'Connor at the moment. I used to be strawberry blonde but it is coming through a mixture of dark and white. Maybe I'll end up looking like Cruella De Vil??? Sadly the leg hair is also growing. I could have enjoyed never having to shave my legs ever again but it appears not.