Think I am suffering from chemo brain,
Petal, I forgot to mention I was also going through treatment with a lady who had the same type of cancer as me and we both had the exact treatment, chemo first then surgery then radiotherapy all at the same time, we even shared the journeys to hospital and became friends, sadly she passed in June this year and believe me I was devastated, took me several weeks to pick myself up from that and found myself questioning why I am still here and she's not. Very sobering and sad.
and Barbie, job is still going well and still enjoying it. Grandson is growing into a proper little boy before my eyes lol and now walking, He is hilarious to watch and I love it. 🙂
Petal totally understand why you want quality of life rather than put up with all the horrible side effects you have been enduring. I am sure I read somewhere in the forums that these meds may only increase survival rate by approx 1%, so I think I would be making the same decisoion as you if I was on meds. I suppose it's easy for me to say as there is no meds available for TNBC so didn't have option.
Barbie I sometimes get weeks when it's all I think about from the moment I wake up but I think the anniversary of this time may have something to do with it as well as dark nights drawing in
( takes me back to feeling ill and like a prisoner in my own home) but thats because I didn't feel well enough or want to go out during active treatment. So hang on in there cos it will lift soon, hopefully you get your results soon and that will help you move on. Wow great news on weight loss, I eventually started slimming world 2 weeks ago and have lost 7lbs so far but seem to be struggling a wee bit this week ( poor planning lol).
Think I might go back to GP as I am having re-occuring abcesses/cysts under arms and thighs, they just seem to dismiss it each time I go and I feel I am bothering them but this has only been happening since treatment which makes me think my immune system is still not recovered!!!.
Looks like we have fallen off the front page which can only be a good thing as we are all moving on slowly but surely.
Petal - hopefully they can get you sorted with your osteoprosis treatment.
Barbie - Hope your results from mammo were good and you can relax, I am due mine in two weeks.
Best wishes to everyone
Oh forgot to say that's a fantastic weight loss Barbie - well done. I still haven't joined lol every time I get myself prepared something turns up haha. Plus everyone keeps telling me I don't need to lose weight which doesn't help
Barbie - great news about your daughter, so happy for you both and hopefully you get good news from mammo too. It's a tense time when these appointments are due.
I am due my mammo next month as well as breast clinic appointment on same day, the good thing is I will get results on same day so don't have to wait..
It's about two years now since we all entered into this unknown journey with all its up and downs and scary moments but I am so glad I have been able to share it with most of you and hopefully the rest of the journey will be calm,happy and plenty of celebrations to come.
Petal - hope you are continuing to improve, been thinking about you
Take care everyone
Barbie - that sounds good there is no concern over swelling, I hope your daughter gets good news too, it must have been a worry for you to say the least.
How is the diet going, I have yet to get started, but now the winter nights are in I might just bite the bullet and join on Monday night.
Petal, Glad you are feeling a bit better and I hope the book you are reading is helping you too.
My new job is going well, thanks for asking, the couple I am working for has just set up their own business in the care sector and they asked me to be their administrator/HR and allow me to work my own hrs which is good, at the moment I am only working 3 days a week from 9.30 - 4 and that suits me as I dont feel ready to go back to work full time ( maybe never will again lol), I am getting used to having days to myself.
It's my little grandsons 1st birthday on Monday so having a family get together, so looking forward to it.
I am looking after him for a couple of days just now as his parents are away for a well earned break for a couple of days to barcelona but will be back on Saturday, its the first time they have been separated for so long and we expected him to be discontented but he is just amazing although very tiring and at the stage he wants to walk so my back is breaking haha
Hope everyone else is keeping well
Thanks for asking after me. I can't seem to get on with hormone tablets so am having another break but may try them again in a few weeks and see if I get on any better. I had almost instant bladder problems, have had visual disturbance again and was so low I cried all day and couldn't get motivated to do anything and wouldn't have cared if I had died. Off them again, I feel fine and although I still worry about things, I can cope. My GP and cancer nurse have both said I just may not be able to tolerate them (I never could take the pill or HRT as they gave me dreadful migraines and high blood pressure). The "good" news is that my cancer was mainly HER2 positive and I have the added protection of my year's worth of Herceptin.
I have been trying to understand the statistics of risk of the cancer returning but the programmes available (even to the cancer nurses) don't take into account that you have had an operation, the level of hormones in the cancer - my oestrogen level was only 10% which they call weakly positive- and most don't allow for the HER2 bit or the Herceptin. It would obviously be better if I could just take the tablets but the way they made me feel was so bad that I think I would rather have better quality of life and the risk element is reasonably small.
Barbie, I know everyone says it is perfectly normal to be scared by every little thing and think it is cancer again but it doesn't do any harm to run things past the GP and go back if there are any changes. Hopefully any lymph swelling is because the glands are working harder after the removal of the ones under the arm.
Good luck with the new job, Wyn. I love my grandchildren to bits too!
Best wishes to one and all. Petal x
Hi Ladies, hope you are all well,
Petal, I understand that low mood feeling, but it will pass - just try to keep busy as it helps to lift your mood.
Barbie - I have a swelling around collar bone for about a year now and when I pointed it out to oncologist she said not to worry about it!!!!!!! but it is quite obvious and makes me feel a bit self concious.
Well I have been busy in last few weeks and changed my job again lol, this time I am quite happy with the part time hrs and responsibilities, so fingers crossed I have made the right decision, I am also enjoying the time with my grandson who will be a year next month ( how time flies) he is just my little ray of sunshine even on my dark days :-).
Thanks for that, and good luck when you have your op. I have a cousin in Australia who had that done and she is much happier now she is balanced again.
I think the new hormone tablets are affecting me already as I am pretty down just now but hopefully I will get used to them. I just feel my whole life has turned upside down in the last couple of years but I know it is because I miss my husband and sister as well as having the after effects of all the treatment.
I do appreciate you taking the time to answer me about mx versus excision.
Just checking in and good to see that it is reasonably quiet on the forum; hopefully everyone is getting on with their lives.
I've been doing ok; still have restricted movement in my right arm but that was due to the mx and the lymph node clearance. It is what it is and a small price to pay.
I hope everyone is enjoying the summer and has been able to find a new "norm".
Sending love and hugs,
Barbie glad you feel reassured by my post. We have a few similarities lol, I also had very smallmargin and remain very high risk of reoccurence but try not to think about it.
I also moved house, although it was 3mths prior to dx so never really had the inclination to do any improvements until recently lol.
As for slimming world I also joined them prior to my hols and was doing great ( lost 19lbs) before going on holiday at end of April and was so near my target but Hey I was on holiday so all went out window again haha and haven't got back into it since, prob one of the reasons I have been feeling a bit down so will be joining again next Monday, felt it was really easy to follow and never felt hungry, good luck with your weightloss and let us know how you are getting on with it.
Hope everyone else is doing ok since forum is quiet
thanks wyn, you have reassured me as I feel exactly the same as you. I wish I'd had the mx too as I feel so lumpy I wonder how I would notice a recurrence also the margin was only 0.6mm so my surgeon said I'm high risk of recurrence.
I am trying not to be so paranoid about it all and get on with my life which I'm loving my new home and enjoying buying new things for it. Haven't done anything about the job yet. Joined slimming world last week as I'm sick of carrying around this extra weight from all the cake I ate during treatment.
How is everyone else doing?
I agree Barbie - it sucks, just when you think you can put all this behind you another hurdle gets thrown in your path and starts the paranoia all over again,
My breast is constantly changing from feeling like thickening or hard particularly in the surgery area to feeling soft and normal, and painful at times. I get so confused to what is Normal now that I dread checking now and sometimes I wish I should have pushed for a mastectomy so I didn't have to worry every time it feels different, if that makes sense.
I have been finding the last few months a struggle in comparison to the 6 months prior, not sure if its because I hit that brick wall and everything just hit me, I really need to give myself a kick up the backside and get back on that feel good bus.lol after all we didn't put ourselves through all this to come out the other side feeling miserable and stressed.
Here's to Happy Days Ahead 🙂
Barbie- Glad your move went well, it sounds so nice to be living by the beach, I have always lived by the water ( although not really a beach) but the views are amazing and during the summer I get to watch all the cruiseliners passing ( one can dream haha). Hope you recover quickly from cold.
Petal- happy that your appointments went well but unfortunately I can't help with hormone treatments either as I dont get any, it must be a real nuisance to you having to wear the sleeve but if it helps then its worth it in the long run.
Didn't even get shortlisted for interview lol but it's not surprising really as i have very little experience in personal care so guess I will need to keep looking.
I have noticed my hair is thinning a lot, it never really grew back to the thick healthy stage it was before dx but it was ok to manage, When I discussed this with hairdresser she said it's not uncommon for it to happen and she has currently a customer in same situation two years after treatment ended. hopefully its not too drastic so I have started taking vitamin D3 to see if that helps.
thanks ladies, I'ts a comfort to know i am not the only one experiencing that brick wall.
Barbie I feel exactly the same about other people complaining about irrelevant stuff, eg people telling me they are Dying with a cold, or I don't know how much they are suffering with pain in their back or absolutely sick of their lives because they have falling out with their OH, don't get me started haha feel like saying to them all GET A LIFE.
anyway on the job front, I was a Housing Officer with local authority for over 20years and took early retirement package about a year prior to dx and I absoutely loved my job but felt the time was right to go. After a couple of months I got a bit fed up and decided to look for p/t work and successfully got employed with NHS however wasn't there long when dx so decided not to go back after treatment as job was heavy.
Since Jan I have taken on a couple of p/t jobs in retail and currently working p/t in local school with bank work with another housing association.
I know I should be happy that I have got these jobs as I know there are lots of people struggling to find a job but I just don't seem to get the job satisfaction I once had and therefore still job hunting.
I have applied for another p/t job with local authority in a day care centre as a support officer and feel this may give me the satisfaction I have been looking for, Like you I have always worked with members of the public and there is nothing more rewarding than going home knowing you have made a difference to someone else's life if that makes sense. At the moment I just feel part of the rat race and not going anywhere.
If you are thinking about changing your job take time to think what you would really like to do and what will make you happy and don't be like me and rush into it haha. Good luck
Petal - glad you are feeling better
Barbie - so pleased for your news.
I havent been posting for a while due to hitting a brick wall and having a bit of a meltdown. I had been experiencing pain in my hip and down my leg for a while and casually said to oncologist during my follow up appointment in may, she then said to me "As your tumour was very aggressive and you are very high risk of recurrence I am taking no chances and referring you for a bone scan as it can return anywhere in your body". WOW i really didnt want to hear that. Anyway to cut a long story short I was in that dreaded waiting room for a few weeks, had scan and glad to say it was clear.
I now have labyrithitis for the last 10 days, ears very sore and severe dizzy spells.
Dont know how you all feel but I just think I am taking one step forward and two steps back.
In addition to all of that I dont seem to be contented either as I have changed jobs four times since Jan (haha) I seem to have developed this attitude that If I am not happy with anything anymore then I will change it no matter what the consequences and really don't care what people think. This is soooo not me.
Anyway enough said for now hope you are all enjoying your summer
Oh Petal, I am so sorry to hear this news, stay strong and cherish those memories you had with your sister, sending you lots of hugs and holding your hand to help you through this.
Love Wyn x
Excellent news Barbie, soooooo pleased for you, you can relax now.
I haven't had any flare ups of bladder problem so lets hope it stays that way.
It's prob part of the norm for most of us to become more anxious with any pains etc since DX but it must be a good thing as we are paying attention to our bodies more now than previously when we would have just shrugged them off.
Take care everyone