Feeling really low just now

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Hello all,

 

I’ve not been on the forum for a while, but I think I need to vent some feelings with people who understand what I’m going through. Well, that’s the hope anyway!

It will be almost a year since my cancer was diagnosed and I had a right breast mastectomy on 21st May last year. I started chemo on 5th August, after getting married on the 2nd August!!  Not a great start to married life, eh? I had 4 out of 6 sessions of FEC chemo, due to severe side effects. My oncologist said that would’ve been enough, and didn’t want to put me through any more discomfort. I lost all of my hair, I had foliculitis, my taste buds were knackered, I was tired all of the time and I felt like pooh, basically.  The chemo also had an effect on my Dystonia. This is a neurological disorder which affects movement and posture, and it means I have to use a wheelchair for mobility.  I wasn’t expecting it to do affect this and neither was my oncologist!! My Dystonia is still being affected, to a degree, but is slowly getting back to normal (well, my normal, anyway!) ? 

 

I have been up and down, emotionally and physically, all of this time.  It has drained me completely, over and over again. I have so many mixed up emotions I don’t know what I’m feeling. I don’t know how I’m supposed to feel, almost a year on from diagnosis. I feel so tired, still, and I don’t know if that’s normal or if its to do with my condition. I get upset easily and cry. I have no real motivation or get up and go. Occasionally, I’ll feel great and I want to do things and I do, but that doesn’t last long, unfortunately. Everyone says how well I look. My hair is slowly growing back, I do wear makeup when I go out, and I do make an effort to look good. But inside, I’m like a rollercoaster of emotions. I try my best to look OK but I’m not really. 

 

My confidence has been knocked so badly. I really didn’t expect any of this when before my treatment. I don’t really like the way I look anymore, if I’m being honest. It seems like everything I had before the chemo has just disappeared, and I’m trying to get it back but its just so far out of reach.  

 

I had 6 sessions of counselling just before and after Christmas which brought up so much but, because it was via the GP, that was all I could get!!  So, I had to find another counsellor myself, which is is hard enough for most people, but trying to get one that was in a wheelchair accessible building was a bloody nightmare!!! Anyway, I have found one and I’ve had 3 sessions so far which is going OK.  

 

Please tell me these emotions are all normal. I’ve not been well lately, and I’m quite down about that because its taking a lot longer to get over it.  How long will this go on for?  It’s  really making me worry because I think I should feel better about things than I actually do feel.  

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Hi Elsie Lou,
I think what you are describing is very common after such life changing events. It is certainly how I felt after my first round of diagnosis, surgery and radiotherapy and it got slowly better, but it took a long time. You are only at the one year mark and that’s early days yet. Don’t be hard on yourself. Have you read Peter Harvey 's articles, one of which is called “after the treatment has finished”, I think there is a link somewhere on this site to it. But in the meantime don’t fall into the trap of thinking you should be feeling better than you are, or that everyone else has got over things faster.
It will get better for you, but it’s a bit like try to get to sleep, to more you worry about it the further away it gets.
Lots of virtual hugs
Jojo

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Hi All,

 

So much of all that has been written here could be me too. I was diagnosed a year ago March 2014 - had surgery x2 & rads, and now am on anastrazole. I am currently recovering from matching surgery, and am so looking forward to putting all of this behind me. However having had the year review mamo slightly early I was a little surprised how antsy i was in the days before & weeks after as I was awaiting results again.

 

I have found a book (booklet really 70+ pages) written by Cordelia Galgut - Emotional Support through Breast Cancer a real comforting read. The author is a clinical psycologist with her own diagnosis & therefore unique perspective to the emotional rollercoaster we all travel.

 

I have also recently joined a local closed facebook support group for my county (Berks). These ladies are amazing helping to pick us all up with their loving & supportive messages.

 

Be kind, eat well, enjoy some sunshine if you can, and keep posting. Much love

 

LL

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Thank you all so much for your replies. It really does help to read your posts and know it’s all quite normal to feel this way. I understand now that I am being hard on myself, thinking I should be feeling better about everything that has happened. I do put on a front for people, a mask really, to cover up what I feel, and I always have. I’m now beginning to realise that it’s not always good to do that. 

 

I feel a little better today about it all, but I know it won’t last.  However, I also know that it’ll just take time. I had another counselling session this afternoon and talked about this.  I talked about not liking myself at the moment, not liking to look at myself in the mirror, not liking my hair. Hating the way this is making me feel. I sometimes feel guilty, as well, that my husband has had to go through this with me. I’m not the same person he married last August. I don’t look the same, I don’t behave the same way, I get upset at any little thing. I sometimes wonder if he thinks like this, but he says he doesn’t and he still sees me as the same person. He’s really such a lovely man and I love him so much.

 

One of the things that has lingered after my chemo treatment has been the headachesmigraines, and they have been making things so much worse. Before treatment, I had them under some sort of control with medication (Gabapentin and Sumatriptan). However, they got worse during chemotherapy and have not got better. My neurologist has upped the Gabapentin so I’m hoping this is going to help. Did anyone have this side effect during their chemo?

 

On a more positive note, yesterday I spent the day with my family (mam, step dad, brother, sis in law and my niece and nephew), which was great because it took my mind off things. My nephew was 6 yesterday and we bought him a Lego 4 wheel drive truck with a boat and a trailer. He was very excited as I said I’d help him put together the truck after his mam put the boat together! It was such a fab day and he was so excited that it really helped me focus on other things…and I quite enjoyed playing with Lego lol ?. 

 

My counsellor wants me to think of one thing every day that I like about myself, to help with my self esteem and confidence!!  Day 1…it may not be conventional but…I’m great at reverse parking!!! Lol! I have a VW Transporter which is wheelchair accessible so it isn’t a small vehicle, but I can park almost anywhere in it! Tomorrow I will try and think of something more personal ?. 

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I have had another good day today. It was my mam’s birthday so we spent a few hours there.  My niece (10) and nephew (6) are both such great kids who can take your mind off anything and make you a part of their amazing world without any effort!  I absolutely love them both and there’s no way you could be down when they’re around. They just wouldn’t let you, especially my nephew. It has lifted me so much just being with them today.  They’re a fantastic tonic. 

 

I’m finding it quite difficult to think of positives about myself. My husband keeps telling me the positives he sees in me (many are unmentionable on here lol!!). It is much easier to think about other people’s good qualities than your own.  However, I’m going for empathetic. I like to think I can understand how others feel without feeling sorry for them.

 

Day 2…I can empathise with people ?

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Hi all,

 

Today was the right day for me to be reading this thread! I was diagnosed in October 2013 and had to move countries for my treatment, and suspend everything else (work, household, etc). The upside was that the treatment was in my native South Africa, and since we had been living overseas for many years, it was a massive privilege and joy to be able to go through the hardest time in my life with family and friends around me. My treatment finished in July 2014 and we moved back to the UK in September. Since then it’s been about, as I call it, running “project health”. Don’t you find that you have to manage all this and add the right people and identify all the strands? 

 

I returned to work in September already, though on an 80% basis, and found that very helpful in terms of feeling normal. But of course it wasn’t as before - I had to change jobs from a senior management job to an adviser role, which isn’t a demotion at all but still made me experience a loss of status and purpose. People at work are lovely and understanding - I’ve worked there for a long time - but I veer between feeling frustrated that I’m not more passionate about my current role and feeling grateful that this is the case, as I don’t think I have enough energy yet to be passionate!

 

As others have said, officially I’m looking well and moving on etc. But I feel like the anxiety about getting sick again is just underneath the surface and any little thing makes it grab my ankle. In the process I’m also struggling to work out how best to manage moving forward - London GPs have only 10 minutes per patient and the Royal Marsden, where I transferred my follow-up treatment to, have an “open access” system, which basically means I have to report when I feel any symptoms and otherwise they only see me for an annual mammogram. What is the follow-up regime for other people living in London? Is this the normal way of going about things?

 

I understand that they don’t want to expose me to too much radiation/CT scans as I’m only 42, but I’m also nervous that this has more to do with financial decisions rather than best care - and I only have one shot at staying healthy!

 

Has anybody explored functional medicine as a way to be a bit more holistic and preventative? I found one clinic in London who charge about £300 per session…without private insurance and working for a charity, that isn’t really an option for me.

 

Re feelings, yes, I would echo the advice on here. I also go up and down and a few abnormal liver tests recently have sent me into a bit of a spin - so glad to know this is normal. While going through treatment I stuck some post-it notes up in my bathroom and am considering doing the same again. Some of the things I wrote there:

  • Find the joy (in everyday things, like hanging out with people and kids you love)

  • My body does not define me

  • Breathe (really, I’m not kidding! When I feel sad or anxious I do some deep breathing where I picture breathing in golden, sunny air and breathing out black, dark air. Sometimes I give it a name, like breathing in hope and breathing out sadness. Sometimes I just picture the light vs darkness. But it makes me feel calmer and like I’m releasing/cleaning out my feelings.)

  • One day at a time (really important - I’m an impatient person so a hard one to do but the only thing that works in my experience)

 

And then my latest addition: Is this fear I’m feeling fact or feeling? If it’s a fact, fine, then I can feel a bit anxious and try to deal with it. If it’s a feeling, anticipating something that isn’t actually reality (like being anxious before a scan), then it’s a feeling and I shouldn’t allow it to take over.

 

Sorry, turned into a long post but I guess I also needed to vent a bit! Most important I think for all of us is to love ourselves for who we are, and to be patient and kind to ourselves, every day. And as for Elsie-Lou’s next positive thing: you’re brave! People say that and sometimes it feels a bit shallow, but all of us have come face to face with a hugely traumatic experience and we didn’t cower, we took it on head-on. That’s brave no matter what goes under underneath the smiles!!

 

big hugs to all

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Your feelings are so normal. We have all gone through so much and have so many losses to grieve, not least the person we were before all this happened. Ive also had a compliacted time and am only just coming out of it over three years later. Now the emotional stuff is really kicking in. I thought I was pretty chilled about losing my breasts but suddenly , Im really not coping with it. I find I either live in the past, reliving chemo etc or am so demotivated, that I do nothing with my days. I dont want to be like this as it means missing out on huge chunks of life. personally, the thing that has been the most useful for me is mindullness ad it deals with living and coping in the moment. I have been using an app called Headspace which is well put together and the “sessions” start at 10 minutes. 

Looking “well” is in itself a problem as people will tend to assume that you are in fact emotionaly and physically well.I dont know about you ,but despite knowing people mean well, “youre looking well” actually makes me feel very frustrated as with out sounding like a hypochondriac I cant tell them how things actually are. People are hoping we are well and many do struggle to know what to say if they thought we werent. I find that on the whole people respond very well and supportively to physical problems but struggle to know what to say to emotional ones. There is a tendency for them to say a version of “you need to pull yourself together so you can get on with your life, youhave your whole life ahead of you. You are so lucky to have survived this…”

My friend is dying of breast cancer, and i find myself not knowing what to say, so im far from perfect in this respect…

ive taken a very long time to say that it is very normal to struggle emotionally and psychologially with losing parts of ourselves, undergoing traumatic experiences and contempating death. During all the treatment our resources are very much used up in coping with the physical challeges. Its only when that part is over that all the stored up emotional stuff really pops up. at this point a lot of support falls away too. There is penty of research done on this subject. Do you have a good GP? it is worth finding out if you are actually suffering from depression. ( there is, not surprisingly, a much higher than average rate of depression in cancer survivors).

Please try and be kind to yourself, you and your poor body have and are going througha huge trauma. You are allowed to cry and rage and fear… If it sounds like your cup of tea, give mindfullness a try…

 

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Hi reading through the posts it could have been me writitng them all.  I was diagnosed at the end of October, got an op in November and finished radiotherapy at the end of January.  I have been getting terrible hot flushes with the tamoxifen and I am constantly exhausted.

 

I started back work at the start of March working two days a week, and have now gradually managed to build it up to three.  Everyone tells me I look really well but inside I feel like screaming I am tired, have lost all my confidence and fell like crying constantly.  To-day I attended the hospital to be told I have lymphedema I feel I take two steps forward and three back.  My breast and hand are all swollen and I struggle to lift my arm above my shoulder.

 

I am determined BC will not beat me but, can’t see any light at the end of the tunnel.  I am lucky that my partner and family are great and really supportive but, they must be fed up with me constantly complaining about how I feel.  Hopefully, now the sunshine is here I will start to feel better getting out more in the fresh air.

 

 

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Hi Elsie-Lou

 

Apart from you being in a wheelchair, I could have written your post.  I was diagnosed same time as you, and had EXACTLY the same treatment, chemo stopped after 4 rounds as my tumor was still growing, so had the mastectomy and finished chemo (Docetaxel).

 

I too feel exhausted, and having fibromyalgia doesnt help, and I too have many private moments, when I just weep.  I think I should probably have sought counciling as well. 

 

We have come such a long way and endured gruelling treatment, its hardly surprising that we are tired and weepy.  Being unwell lately will only magnify your emotions too.  Your feelings are entirely normal,  I think everyone who has had BC of any type will have these private moments, for fear of upsetting family and friends.

 

Just remember, you have come such a very long way in 11 months, your body has had to endure so much harsh treatment.  You will start to feel better soon my lovely, and enjoy life again.  You are an amazing woman, and have gone to hell and back to get to where you are today.   

 

I hope you feel much better soon, everyone heals physically and emotionally at different rates, it will take as long as it takes for you to feel well.

 

Gentle hugs and best wishes to you xxxx

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Hi everyone! I completely recognise what folks are saying here regarding the emotional side of trying to move on after treatment. I just wanted to share a couple of things which I found really useful - as well as this wonderful site, of course!  For me, I’d put my ‘coping head’ on through chemo, surgery and radiotherapy, so it was only when I finished active treatment in October that everything hit me.

 

 I had some very helpful counselling sessions at my local Maggie’s centre. These were very informal one to one talks which I found really helped me to begin to think about what I’ve been through and my feelings about it. 

I also read Stephanie Butland’s books - Saying Bah! to Cancer, and Thrive! which I found very encouraging and motivating. 

 

 I’ve been back at work full time since Feb and just beginning to feel more like ‘me’! My hair is almost back to a style that I like, and I feel my confidence is increasing. I’m starting to feel more confident in finding out what ‘normal’ now means for me - I think this is one of the trickiest parts, because the experience of cancer changes us and there’s no going back, and it can take some time for the way forward to become clear. 

 

Take care everyone.

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Thank you all so very much for your replies and sharing you own feelings, thoughts and advice. I don’t know what’s happened but I feel so much better now.  I feel more positive now than I’ve felt in such a long time. I keep thinking I’m bloomin’ bi polar with the endless ups and downs, though I do have more downs than ups lol! However, I’m very keen to keep this positive vibe up so fingers crossed!!  

 

Last week I had a bit of a revelation. I was looking at myself in the mirror, looking at my scar and my mono boob ? and suddenly thought that my scar is a reminder of something that potentially saved my life!  It hadn’t really occurred to me before because I was thinking of what had happened for it to be there for.  And at that moment my whole attitude changed towards to it. I don’t mind looking at it now, or even touch it!  Can you believe in just a few days that my thoughts have changed significantly?  I really do think I’ve turned a corner ?

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Hi Elsie-Lou

How fantastic really chuffed for you (and us) as you have popped back to share your brilliant mind switch moment :smileyhappy:

Understanding the worry point is half the battle Long live clarity of thoughts x x

LL xx

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Hi all,

Thx Roadrunner, a story that has heartened me x x

LL xx

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Thank you Road runner for your positive post.  Its good to know its normal to feel up and down. I know I’ll probably have a lot more ups and downs to come, but trying to think positive thoughts will help. Also, I have decided to go back to the gym. I had my induction last week to see what I could do and how far I could realistically push myself. Starting off slowly is the way to go ?. Looking forward to getting back there. Its been nearly 3yrs since I was there as I had a hip replacement and haven’t been back since. Going to get myself some new gym gear tomorrow!! ?