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,
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
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.
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
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
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 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
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.
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
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 😀
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
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.
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...
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 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
Anyway, look forward to hearing all your news.
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....