New Normal

I’m not really sure what I feel at the moment.  I am three weeks past finishing my active treatment.  I was lucky and got clear margins in the first WLE and had 15 sessions of radiotherapy.  I have had some pretty horrible burns under my breast but they have all healed now.  My scar is lumpy and I think the seroma I had is getting bigger, I can sort of feel it under my arm which is uncomfortable rather than painful.  But I don’t want to go back to the hospital or the doctors again.  I have my next consultant appointment on 30th May and I am waiting for an oncologist appointment to come through.  The radiographer rang me last week to see how I am doing and said an appointment is on its way.

 

I know I had much less treatment than so many of the lovely ladies on this forum but I feel so exhausted by it all.  I have had a coldy thing for the last week and it has knocked me for six. I went to bed for two days and that’s not like me at all.  I don’t have any get up and go left.  Just feel shattered.

 

I am also trying not to panic that the swelling under my arm is another lump.  It cant be, I haven’t got the energy to go through anything again.  My sensible head knows it won’t be, blimey they only went in there in November and it as been cooked by rads since then.  I think I tried to be all brave and ‘normal’ while it was all going on and it’s now hit me.  I don’t want to be a moaning Minnie, but I’m fed up and a bit sad.  My hubby has been brilliant and just wants me to feel better, please tell me it gets better. X 

Crocrazy

 

Right and breath xx 

 

Well your cold is not going to help and obviously at the moment your immune system is a bit low so the effects of it will be more than usual

 

You are only 3 weeks post rads finishing and it is very early days, give yourself time to recover from everything you have been through just listen to your body and make sure that you get rest.  Your scar is still settling down after the rads so it will be lumpy for some time.  It is very easy to panic and think that there is something wrong and that the bc has come back, but it does settle down in time honestly.

 

I know that it will not be easy because of the way you are feeling, but you have to be very brave and contact your bcn, she will totally understand how you are feeling, have a word with her she might suggest coming to see her about getting it drained which will give you relief.

 

You are not a moaning minnie, I can promise you it will get better but it is early days so try not to be so hard on yourself and start to enjoy that you have finished active treatment.

 

I am sending you the tough pants to give you to the support from all the ladies on here and loads of hugs

 

xxxx

 

tough pants.jpg

Hi Crocrazy
I think we went through our radiotherapy at much the same time. I’m 5 weeks on from the treatment ending, and so not much ahead of you in terms of getting back to anything like normal. I think other women may be better able to reassure you. But we’ve been through such an intense phase that it’s no wonder we’re feeling a bit weird now. Like you, I’ve been thinking that no one likes a Moaning Minnie, and I’ve tried not to inflict that on my family who have been just brilliant. But having this safe place to let all the moaning out has been my rock to cling to, knowing that everyone here understands what it’s like. My advice would be to let all those thoughts out here. They seem to me to be much reduced once I’ve written them out and shared them. Hoping you will find reassurance from people further down the line than us, but just to let you know that I feel for you, and can completely relate to what you’re saying. X

Hi Crocazy, just wanted to say “hello” and that I am thinking of you.  I finished radiotherapy 2 weeks ago and have hardly left the house as my boob has been so sore and itchy and I just wanted to sit with it uncovered in the house.  I also had a WLE and the scar is really bumpy.  I have felt really bad about not being able to do “normal” things again but realise that I have not had a period of recupperation since this nightmare started last  year…so this is now a bit of time to do that and to stop feeling guilty for finally taking some time for myself.  I totally get the not wanting to engage with the hospital etc but if you do have any concerns far better to get them checked out - just for piece of mind.  I have signed up to do a Moving Forward course as I think it will do me good to be with other women who have been through this - maybe something in your area?  And vent away…always someone here to listen.  Take care xx

Hi ladybowler and thanks very much for the tough pants. Your advice is so sound (it always is).  I don’t really like my BCN, which is probably really unfair on her but she always seems to make me feel like I am doing it wrong somehow.  I feel a bit like she is box ticking rather than helping.  She is perfectly pleasant but seemed to be horrified I wanted to go back to work so soon and I felt like she thought I had therefore brought any problems on myself.  That sounds mad when I put it down, but she upset me at our first meeting by telling me I wasn’t on her list for that day so she shouldn’t be seeing me.  Well no I would rather not be here either! She is always somewhere else too on the days I was in clinic, hospital etc.  I can’t put my finger on it but I didn’t take to her.

 

Hi Nuthatch and Shefgirl.  We did do rads together.  I hope you are both ok.  That sums it up perfectly Nuthatch, weird is how I feel.  I think I am trying to run before I should.  Just feel flat and poorly, and more than a bit sorry for myself.  I don’t think I factored in how hard this bit is, thought I would breeze through rads and leave it behind me.  I am never normally negative, and don’t recognise how I feel at all.  And I know what you mean Shefgirl about having to take some time to be almost selfish, which is another thing I am not good at.  

 

I’m putting on those tough pants Ladybowler.  Thank you ladies, I know you ‘get’ how I feel.  I am going to try and banish moaning Minnie for today x 

 

 

Thank you Ladybowler, I really appreciate it.  I think I need to shake off this coldy thing and then look at signing up for one of the moving forward courses.  There is also a support group locally who meet every so often at one of the local cafes - the lady who runs it is really nice and I think I am going to go along. 

 

I think I have realised I need to be kinder to myself.  X

 Hi Crocrazy,

 

I’m a few weeks ahead of you in terms of all of this, having finished radiotherapy before christmas. What you describe about not knowing how you feel summed up exactly how I felt at the start of the year. I wanted someone to tell me what I should do and how I should feel. I kind of just muddled along really! I went back to work 3 weeks after rads and was incredibly anxious about this. I’m a nurse and my job is stressful and physically demanding. Initially, I found things difficult in that I felt I could only cope with being one part of ‘me’ at a time, because I was so tired. If I 'd worked for example, that felt like my priority role for that day, but I still needed to be Mum. The multitude of household tasks weren’t going to do themselves either! I did feel pretty overwhelmed at times. Fast forward a few weeks and everything is so much better! Work is, and always will be, tiring. It’s a different tiredness now though, not the post-radiotherapy exhaustion, that definitely gets better. I  recognise the psychological benefits to me of being around people and doing my job. I’m so lucky to have fantastic colleagues who have been so lovely and supportive. I feel much more like ME again. It is still such early days for you. Be kind to yourself, listen to your body and take your time. You will get there. It certainly doesn’t help when you’re feeling poorly either, and it’s so cold outside. 

Very best wishes to you xx

Thank you Ladybowler, I am feeling calmer now.  I think it really helps to admit how you feel, rather than trying to bottle it up.

 

Thanks for the link Shefgirl, that puts things into perspective too.

 

Thank you Hufflepuff, it is very odd not knowing how you ‘should’ feel.  I think all through actual treatment we are in someone else’s hands, they are the experts and while we have to make the final decisions about what we want to do treatment wise they guide us and you have to trust them.  I felt swept along and didn’t really have time to think too much.  Once the security of that goes I felt almost like I didn’t know what to do next, certainly not how to feel.  And what I am feeling wasn’t something I recognised.  It didn’t feel like me if that makes sense.  Real life does carry on too, you are so right about the normal things still needing to be done, but they feel unreal somehow.  Weird things like sorting out what to have for tea have stumped me when normally it is just something which happens.

 

I have a stressful job too, I am a partner in a law firm, so it’s mentally taxing rather than being physically tiring. I do all the HR too so I am used to sorting problems rather than having them.  I think the loss of control has affected me too, admitting I don’t feel myself has been hard.  Unfortunately it’s still a mans world in law and anything which is outside of normal can be seen as weakness and pounced on which is not nice but unfortunately still true. 

 

Its really helpful to know time really does help and things get better.  I think I have been trying to rush this stage, whereas I need to take my time a bit more.  I really appreciate the support you all give me and the wise words of advice.  This forum is a godsend.  Thank you all x 

 

 

Hi everyone i finished my rads on jan 9th and still feeling really floored by treatments im not back at work yet either i feel a bit of a wuss tbh when I hear that others are back at work and i can’t face it yet I started a where now course today with my Maggies Centre the first one was a little intense as we had to all share iur stories as introduction i found this quite hard as did everyone elde quite a few tears shed, although it was also nice to have others in similar situations to myself but again alot if them are back at work
Im struggling with fatigue atm i just feel like i have no energy at all even tired after walking the dog i desperately want to not feel like this,
The work thing i think is abit of fear that my job will be too stressful for me now, it was very full on and stressful before the BC i rarely got to take my breaks and was constantly juggling too many plates at once my role is an activity coordinator in a care home fir people who are elderly have dementia and frailty, i am the only person employed to do my job and was in charge of funding committees, fundraising and grants, organising all activities family events, student visits trips , risk assessments, liaising with families and facilitating activities too, i really just don’t know if i have got it in me anymore and i know no job is ever easy but i know that my job is really full on i also feel like i am letting people down if i don’t get back soon as they keep asking me for a return date and a colleague told me some of the families are asking when im going to be back as tgey are Ann at the lack of activity now im nit there as that was why they chose my care home it had a reputation for a very busy social calendar (down to me) and of course financially i really can’t afford to not work but feeling like I owe it to myself to get myself on the mend, has anyone wlse felt overwhelmed at the thought of returning to work sorry for rambling and ranting ladies i just desperately need someone to advise me
My treatment was may WLE with lymph node removal july to Nov Chemo Rads 20 Dec to Jan

Sorry about typos was meant to say they were annoyed at lack of activity x

Hi Ladybowler, I am feeling calmer and more positive now.  I think admitting how I feel has been helpful.

 

Thanks for the link Shefgirl, that really puts it into perspective.

 

Hi Hufflepuff, I certainly had no idea how I was “supposed” to feel at this stage.  When I was going through treatment I didn’t have time to think really.  You are in the hands of your team who are looking after you and they tell you what is coming next, what they are going to do and how it is going to happen.  You have to trust them and let them get on with their jobs. I was swept along with it and didn’t really have time to think about how I felt, just concentrated on getting through the next bit.  I suppose I did the practical stuff and din’t think about the feelings/

 

But suddenly there is no more security of that - the treatment bit is done, its the getting used to how you feel which comes next.  I think I have tried to rush through this bit, especially as I don’t recognise how I feel.  I just don’t feel like me.  That made me uncomfortable and I thought I could just ignore it and it would go away.  

 

You are so right about the normal day to day things still needing doing, life goes on, but somehow they feel unreal.  Things like deciding what to have for tea each evening have stumped me when that sort of thing would normally just have happened.  Its like a bubble and only so much can be processed at one time.  

 

I have a stressful job too, I am a partner in a law firm so it is mentally tiring rather than being physically demanding.  I also do all the HR so I am more used to solving problems than having them.  It is still a very male dominated/orientated profession too and any admission of emotions or anything which might be a bit ‘difficult’ is seen as being a weakness and can be pounced on.  I am used to hiding how I feel, and just getting on, but this has been too big for me to be able to do that.  I think the lack of control about how I feel has been difficult for me too - I normally box things up and deal with them one at a time, but this time the two areas have collided and I have not been able to simply carry on and pretend it isn’t happening. 

 

it is really helpful to know it does get better though and the old me is likely to come back.  I just need to be more patient and take some time.  It does help to know what I am feeling is normal too, I was wondering whether I was just being duff somehow, was it only me who felt this way.  

 

I really appreciate the support and wise words you all offer to me.  This forum is a godsend, thank you so much to everyone, its lovely to know you all understand X 

 

 

Hi Mishy,

 

I have been struggling recently too - and the lovely ladies on this thread have been really helping me feel calmer about how I feel.  I think I went back to work way too soon - I went back three days after my op in November (when I was so sore still it hurt to put my bra on but I was going in come what may) and worked all through rads.  I thought the normality would help me.  However, I think I would have been much better having a break and concentrating on getting and feeling better.  If you can I wouldn’t rush back.  It just adds pressure where you need calm.  I am a fine one to talk, if only I could take my own advice!

 

Sending hugs X 

Croccrazy i know how you feel about boxing up feelings and putting them away i normally have survived all of the trials life can throw at you during treatment i went into right lets get this done mode and i had a few hiccups during chemo so did it even more as i honestly think i may have thrown in the towel at one point, rads was again for me right lets get this done all these feelings have come afterwards i never felt them take over during treatment so i find it difficult now dealing with my feelings and i really don’t like feeling this, im also really disappointed that i don’t feel well still plagued by joint pain and fatigue why can’t i just celebrate that i got through the treatment and bloody get on with it!!!

Thanks Helena i do drink alot however I’ve slipped back into the old habits of more tea less water which has happened quite easily so making a mental note to have more water with the odd cup of tea
Re work i know what you mean Helena about it being early days but i have already had a letter re a phase 3 meeting and may have to be finished due to ill health if i cannot return within a a time period of April which is still 4 weeks off but im still feeling well not up to my job if that makes sense and im already thinking about the reality of the job and its nature how can i really improve someone’s well being when my own isn’t fully back to full working order i hate having to worry about this tbh Helena its played on my mind since last chemo its like people think because the treatment is ovrr ee sre better… Shame thats not the case i feel relieved and grateful but still a little broken xx

Thank you for understanding Helena its hard getting others to understand especially when they haven’t been through anything like thid or know someone who has and were in their words “fine” this what we do though say we are fine to those close as we want them to not worry anymore but then because they think we are fine they expect too much too soon x

I shouldn’t post without my glasses my typos are terrible ?

Thanks ladies for the advice and tips i have been to see my GP today he has signed me off for next 2 months just to give me a bit extra time to get well enough for work he is recommending that my return to work is part time with a couple of rest days between shifts he says my fit note can be reviewed before if i feel ready he feels i need some time to also mentally recover as i had a rough time during chemo (lots of hiccups and my father passing away) but i have told him im attending a where now with Maggies for 7 weekly sessions which will be good for me in terms of moving forward etc i will be discussing all this with my employer at next meeting so hopefully i can be eased back in gently if they will wait that long, if not i may need to look at a different type of work long term x

Helena its a huge relief for me as it gives me a little more time to mentally heal as well as physically, its quite hard admitting to a mood related thing after getting through gruelling cancer treatment but my mood is letting me down i think i just stress too much about everything work included, i called them up and told them about sick note they were OK have said i will have a meeting with them back end of March so hopefully this will be a good thing for me i can see a way forward now as my GP has confirmed that i just need more time and thats perfectly normal for a lot of people after bc treatment x

You know Helena i think you are right my natural streds buster go to is normally my garden or dog walking zo the garden is out of action atm
But today i have made a mental note to think positively and reflect on the journey i have had, and how lucky and fortunate i am no more doom and gloom!!
I am now going yo have myself a nice relaxing lavender and chamomile bath!!
I will take a tip from you that i need a winter hobby i think x