I had my rearranged OH appointment this morning and have FINALLY been declared fit to go back to work next week!
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
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.
Hello everyone! What lovely weather! Hope you have all been outside taking deep breaths!
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. 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
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?
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!!
"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 display nobody knows whether there are any imperfections there or not only you, but time will tell!
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.
Glad to hear that eveyone is getting back to normal or as normal as possible .
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 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 that 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.
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!
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....
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 .
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
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
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
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.
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??
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?????
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.