Everyone's forgotten I've been ill

[Jo_BCC]

Hi riversidedawn

I wonder if BCC's publication 'In it together' may be of help to you and your husband?  I have put you the link below.  You can either download a copy or order one to be posted to you free of charge.

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/it-together-partners-people...

Take care,

Jo, Moderator

[riversidedawn]

Pammy et al, I am constantly checking my good boob (making it sore with my pummelling!) and my bad side for lymphodema, so worried about my cats scratching me, I'm using Germolene as body lotion!!!!

I'm having such a hard time with my other half who is in total denial of my situation - diagnosed Sep 14, mx 3 weeks later with recon, infection and removal of implant in December, 6 months of chemo finished mid April. Now facing expander implant end of May then 3 weeks of radio. Husband still hasn't asked me about my meeting with surgeon last Thursday, goes on and on about his own knee problems (knee replacement 3 weeks before the end of my weekly chemo!!) I;m running around after him when someone should be looking aft3er me.

I don't know about "Everyones forgotten Ive been ill" but in my case "husband doesn't acknowledge I've been ill" !!!!!!!!!!!

[Pammy1965]

Hi to all.

After nearly 50 years of no health issues at all, I was diagnosed with bc last July, and have had chemo, then WLE in December and 15 radiotherapy sessions finishing mid Feb.  Went back to work at beginning of March.

I think I'm harder on myself than anyone around me.  I keep telling myself that treatment is all over now so I should be 'back to normal' , but then can't understand why I still ache all over and am tired all the time. My husband is amazing and keeps telling me to slow down or leave things, but I just want to be me again.  I can't get used to not being able to do everything I could before. 

I also have a constant worry about getting lymphoedema and am always checking my arm.  Does anyone else feel like this? 

I know I should now think more in terms of this being a new me, and working out how to live to that persons limits, but it's hard to change my thoughts of what I want to do, when my body doesn't want to do it 🙂

Reading through this thread has helped me realise that its not just me who is tired, and that it will take longer to recover than I thought, so thankyou all for that xxx

[Nextstep]

I know this may not be feasible for everyone but I have done something which I have found a massive help workwise.  I have been on Tamoxifen for a couple of years now.  Those years have been pretty stressful for other reasons I won't go into.  However I believe in looking for a silverl lining however hard I have to look (sometimes with a telescope!).  I realised that an indirect side effect of one of the stresses was that I could afford to reduce my hours at work, so I now don't work Wednesday mornings (although it's the kind of job where I still often work more than 40 hours a week).  I have joined a gym and go there, do a pilates class and have a swim.  As I always want value for money I now go on a weekend too!  I feel so much better physically and mentally.

I have lost my uber enthusiasm for work and focus on just doing what needs to be done, because that's my limit these days.  At the begining of the week I know I only have to get through two days.  On a Wednesday I only have to do half a day.  On a Thursday only two days to the weekend!

My close colleagues do know I am affected by the medication - I whinge much more than I used to, but then apologise and say sorry it's those bloody tablets.  If I get on their nerves they are kind enough not to say so and we just up the chocolate rations!

[dragonbunny]

Hi

I am nearly 3 yrs post diagnosis having had WLE, chemo and rads. I have suffered right sided abdom pain since chemo no.5. It is a burning pain and the GP has prescribed amitripyline for nerve pain. My onc has referred me to a gastro consultant but referred me for an ultrasound scan on liver in meantime.

I can really identify with not knowing how to relate to others - I have good days and bad days. The scan has put me right back in that very anxious place.

I had a scan 2 years ago and the operator told me it was fine there and then. This time I was told the report would be available to my onc in 7 days. The person did not give any eye contact and sat typing as I left the room. This has added so much to my anxiety...I rang the helpline here which really helped and it seems some people who do US are radiographers and others are US staff - the latter more likely to have expertise in US. Have any of you who have had scans been told at the appt that the results were fine? Is there a policy not to mention results at the appt?

 I have dealt with cancer by getting on with it and keeping worries to myself mainly (especially with my children) but would like more support from a few close adults. Trouble is I don't knowhow to get it! I feel upset that they can't empathise with the anxiety of fearing the cancer has spread. Thus I clam up even more. It is like a vicious circle. Waiting is the pits. Hard to be close to someone going through cancer I know but also hard to be the one actually going through it.

Would appreciate any thoughts on US

xxx

[Lucy_BCC]

Hi Gilly73 and welcome to the BCC forums

Along with the support here BCC can offer further support including our 'Someone like me' service and also our 'Moving forward' support for people who are moving forward after treatment for primary breast cancer.
They aim to provide information, support and professional guidance on how to cope with and adjust to life after treatment, here's the link to these and other services which I hope you will find helpful:

http://www.breastcancercare.org.uk/breast-cancer-services

Please also feel free to call our helpliners to talk things through and to find out more about the support services above on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays (re opens tomorrow after BH)

Take care
Lucy BCC

[Sisterjayne]

Hi gilly it's hard sometimes to get your head around it all isn't it!! I'm having a blip at the mo ,my lumpectomy breast is so tender and painful to touch and all sorts goes through your head I'm 7 months post radiotherapy and I'm thinking why ? But I logged on here and a lot of people have this so I feel reassured again that it's prob the radiotherapy still working ,but this is what we go through , always wondering what's next and people just don't see that part of the healing process at all , it's been such a traumatic time and no one unless they have been through this journey themselves can really appreciate how we are feeling its hard for them ,that's why this forum is so fab and we are all here to share how we feel and support each other ,so when you have a teary day just remember you're not alone at all xx

[Gilly73]

So glad I'm not alone, although I feel it!  Everyone seems to think that once treatment has finished that you're back to normal, but that's not my experience.  I am not normal and am very emotional and often teary but feel that most friends and family think I am OK and don't seem to understand. 

[Sisterjayne]

Hi Helen Rose I just logged in to the forum I was on here a lot last year when I was diagnosed with BC and had a lumpectomy and radiotherapy and I'm now on tamoxifen. I had my treatment in August and went back to work in October on a phased return and here I am 6 months later still having weepy days, still having pain in my breast now and again still quite moody and far less tolerant at times than I was before all this hormonal upheaval!! Have had problems with the tamoxifen thickening my uterus lining so that was yet another worry but it seems to have settled down and I'm going to stay on them for the time being . All in all I do consider myself lucky to have not required chemo and I'm so trying to be positive and move on with my life but it can be hard at times and surely we are all entitled to having these days when we do not feel smiley happy people who are 'well' again ,as we all know this has been a scary , frightening experience in our lives and it's not something we can just forget and most of us are on tablets that we weren't on before , most so us have scars we didn't have before which are constant reminders of what we've been through ,and yes we do move on but people just don't get it do they!! So you certainly are not alone in your feelings and I for one def feel the same way !! Xxx

[Judithvr6]

My standard response to how are you was

'I'm ok at the moment, up haven't cried for [insert applicable time here]'

Currently it is

'Physically I'm healing well. Mentally and emotionally I'm a mess'.

And to try and explain how I'm feeling, what's going through my head, to my fella I thought up the analogy of a nasty car crash he was involved in a few years back. He had just, 3 months earlier, bought a classic car of his dreams before someone ran into it from behind at a roundabout.

Once fixed, I know he initially was really scared of driving the car (6 months of intensive repair) and very nervous of stopping at junctions, especially roundabouts and if there was traffic behind.. well.. nightmare.

I said getting into the car everyday is like seeing my scars each morning. A little reminder of the accident.

Driving it is risking another accident, like living every day... what's the risk of bc returning.

Approaching roundabouts is like each time I have an appointment, I wonder what will happen this time.

I think he got my meaning.

[SamanthaL]

So GREAT to have found this thread thanks HelenRose, Sebreeze, Fizz .... And all the others, but Chemo memory is still very poor.

I've found trying to be strong and not stunningly affected by people's reaction is my biggest battle. I've had friends who quickly scarpered. Friends and workers who really dug the knife in.

BUT luckily I have some good friends and they have been my life saver, discovering that some people are really here for me has given me strength to go on.
I have to work to pay for a London mortgage, thinking of downsizing, but it's hard to find anywhere cheaper with my energy levels.
Planning to be around for another twenty years so grabbing opportunities of mindfulness and co unsealing with both hands. In the meantime, seriously learning notto react all over the place, and crawling home to bed and avoiding not - real - friends is my best way forward, oh, and if they are me how I am, or say I look great, I say yes but I feel **bleep**.

[Butterfly318]

Afternoon FizzB

No you're not bitter and twisted people are very insensitive.I don't have any parents and a Brother who is a serious nighmare (alcohol dependant and a personality disorder  /  not one visit in two years of treament).  However i have had the support of my Husband, Son and my lovely Sister, not to mention a large group of friends.  Some more helpful than others.

I am sorry that you're Mum and Sister are being peevish (no other word).  People's reactions are funny, strange and hurtful in equal measure.   

I am not poor and can pay for things but following my treatment i have accepted anything on offer, not 'cos it's free but because it is appropriate in trying to figure out the new me, take care of myself and meet different people who are like minded and not expecting me to move on. 

I have done Pilates, Reiki, Reflexology, Mindfulness and have just started Counselling. My GP has also offered me 'Prescription for Life' which is linked to local sports facility and offers 8/10/12 sessions of aqua fit / gym etc for the cost of a prescription (which as you know is £8 or free to the 'lucky breast cancer girls'........FizzB  you take care of yourself anjoy your Pilates and try to filter them out / let it go.  

Take Care  Gilly x

[FizzB]

So glad I found this thread! Back at work as Child Protection lead in a girls' secondary school this week. Phased return, and work have been great. It's my family I'm struggling with. My sister (who has not so much as phoned throughout my treatment - let alone visited) has told me this week I need to "start moving on now" and when I mentioned to my mother that I was offered free pilates through the hospital she uttered the unforgettable words "I didn't get anything like that, and my cancer was worse than yours" (she had bilateral mx 20 yrs ago).
I have been incredibly "lucky" in that my DCIS was found early and I have been treated with a bilateral mx & recon with no chemo or rads, but feel so let down by my mum and sister who seem to think I've just had a free boob-job and should now be "over it" and really don't want to become bitter and twisted about it all. My usual fix-all of a good 10 mile run is sadly out of the question at the moment!! Just wish I could let it go.

[Trouble32]

Hi Pamlicious, like you I am so glad I found this thread, i don't feel so alone hearing about similar experiences and getting good advice. I hope you have had a better day today, I've found it hard realising the extreme differences between one day and the next, but with the help of postees (not sure that is a word but hope you know I mean your wonderful forum people) learning to go with the flow. today's 30 minute nap was great just fell asleep for a further 3 hours ... Oh well, must of needed it.

take care

[pamlicious]

Thank goodness I have found this thread, I was beginning to feel crazy, I can relate to almost all the posts, at work its a casual Hi how are you, obviously same greeting for most people  but all I can say is knackered, because thats how I feel.   Been back since end of January after lumpectomy and snb at the end of August, I did have 15 rads, and also got the 'all clear' good margins etc. no spread through the lymph glands - I know I am lucky a little unfortunate but very lucky.  But I feel so weepy, I think its time to ring my breast cancer nurse just to see if I am 'normal' boob all sore still and swollen, one day I think its getting better and the next it hurts somewhere else.   I can talk to myself and say its all part of the recovery and believe it some days - not today though its been rough.  Thanks for listening xx

Pamx

[JCJ]

I am 3 years on from BC dx. 6th March 2012, surgeon told me "Your cancer has all gone", but my oncologist took away that euphoria by suggesting I consider chemo as the tumour was 28mm and grade 3. I didn't have chemo in the end, but was still 4 months off work (in a primary school) by the time the surgery and radiotherapy were over. I was very lucky as my Head teacher at the time was very understanding and let me set my own phased return.  My colleagues have also been very supportive, but I still, regularly, remind them that the Tamoxifen makes me tired.

Recently, I have been suffering with bouts of upset stomach and have had a series of scans - Ultra sound, then CT and now I'm awaiting an MRI, next Monday, to be absolutely certain that the patch they found on my liver is not mets. The US scan picked up a gallstone, so I'm fairly confident - most of the time - that that is what is causing my symptoms.

I have found friends, family and colleagues respond well when I tell them:  "I *THINK* I'm alright - but then I felt OK before I got the initial mammogram recall 3 years ago, so I can never be sure."  My colleagues have been very supportive and know how worried I am, at times, waiting for scans and, worse, results. Honesty is the best policy - and if they don't like it they are not friends and are not worth worrying about their feelings!!

These forums are wonderful for talking with ladies (and some gents!) who have been there and understand. I've made some really good friends on here over the last 3 years. Be gentle with yourselves, and remember: whatever you are feeling you are probably not alone!! x

[Trouble32]

How true. I find it difficult to ask for help so probably not great at explaining why I need the help. This is such a new and different situation to be in and we are all learning as we go along. Must remember that our supporters are also new to this.

[HelenRose]

Yes Cassie I think your probably right ...they're damned if they do and damned if they don't. I realise too I had loads of lovely girlie oestrogen in my body for the past 40 yrs, sailed thro menopause with periods stopping and no side effects at all and find myself now with depleted female hormones and wondering when the old me is coming back. Well she's not coming back but the new me is here now. I've taken up new hobbies with different people and I must tell people nearest and dearest to me when I need help xx

[CassieB]

In defence of the people who don't understand what you're going through - I realise that until I was personally affected I simply didn't know what it was like. My neighbour had a max and we were very supportive of her while she was going through treatment but, quite honestly, I just assumed that at the end of treatment she was OK again. She didn't tell me otherwise so how was I to know as it was my first encounter with bc. May be your colleagues are in the same boat as I was - they just don't realise.

[baylissa]

These posts echo exactly where I am now. I've gone back to work and Ive been trying to build up my hours. I overdid things big time last week and was wiped out all weekend. Its hard to explain to people how tired I get and how easy it is to do too much.

People at work think as Im back I must be better. Ive got  strange looks from people when I leave early. I have decided I'm no going to let it get to me.  Im  trying not to feel guilty about leaving early and doing part time and Im not going to let it get me down.

I am not usually one for going to support groups but I have found one locally, which was advertised in the breast care unit at the hospital. It is great to talk to people who really understand where you are in terms of your treatment as they have all been there. There are ladies all at different stages, some like me diagnosed last year, right up to others who are over the 5 years.  It really has been my lifeline these last couple of weeks, so I would recommend it if theres anything near you.

[Trouble32]

Lolly73 - good answer I'll use that thank you.
Seabreeze - good to know I'm not the only one who suddenly yawns at work!
Great to hear that this is a 'normal' phase of the journey and great to chat with people who understand

[Seabreeze]

Trouble32,
Nothing muddled about your post at all. I've trying various responses to work colleagues like pacing myself, ok but still getting very tired...
I stayed much later than I really should have today, was spotted doing a massive yawn by a colleague, who jokingly said "are we keeping you up?"...to which I replied "yes actually!" Did cause a few chuckles and wouldn't have responded so if the person wasn't someone who kind of gets it and means well. It led onto a wider conversation about cancer with some colleagues which helped....
Seabreeze (less blustery today)

[lolly73]

Trouble32, when people ask if im ok now, I just say 'im getting there...'

[Trouble32]

Thank you all for posting. I have been thinking and feeling the exact same things over the past few days. I know I am so lucky to have had the support, visits and cards and have established new, good, friendships with people I only knew to speak to before and they have been great. But it is difficult when the visits end and the hardest part for me is realising the people I thought would be there for me, I've not seen. Yes I feel angry at myself for being selfish but it feels like I have a new pair of glasses and can see true friends clearly. I know this sounds ungrateful but I don't have the energy to support 'fair weather friends' and that is so difficult for me to comes to terms with.

I feel as if I want to spring clean my mind and emotions and move on from the ones that were negative or perhaps just out of date, so I can appreciate the real benefits of friends, a kind word from a neighbour, or thoughtful words/enquiry from a work colleague. Anyone know where I can find that feather duster to spring clean?

One last thing, I keep being asked 'so your alright now?' compared to where I have been I am fantastic but it would be wrong to answer yes, it's just different?
Apologies if this sounds muddled it is the state of my mind at this moment !!

[lolly73]

I quit my job when my cancer came back, but I feel exactly the same regarding friends and family.

I had 2 ops in 6 weeks last year when my i had a recurrence. Load of trouble healing. Still loads of pain and swelling and side effects from meds, plus emotional side of being 41 with one breast and trying to be normal for young kids.

No one asks how i am anymore. One 'friend' said to me 2 weeks after mx... r u all back to normal now? !!!! She knew what op id had too!! I will never feel  normal looking the way i do. No one understands the long term physical and emotional effects. Ive been dealing with this since the first time age 34 and it doesnt get any easier. Unless uve been there, no one understands the long term effects x

[catchpole]

Im retired but can sympatise i live alone and friends were great during the actual crisis i couldnt stop one friend constanly checking up on me, coming to appointments  with me etc. having me round  Now i waiting rads and on taxmaxifen , i look and feel fine, im on my own at weekends again, no invites round,the freind who kept checking has promised to come round the past 3 weekends,she only lives a mile away, hasnt. I spose its partly my fault as i never make a big fuss, and i do feel ok and havent got to have chemo.  But ive got this hanging over my head for ever, and on your own a lot, you try not to dwell on things too much but you do. you cant ever be same,  I got very down being on my own before and think maybe was that combined with my long term HRT that caused it as im very healthy normally,so dont want to get in that state again. its hard without someone in your life, one friend suggested i join another dating site, seize the day, she said, but i dont feel i want that,most men on them want one thinglol even in 60s, and that is last thing im interested in at moment, with wonky boob and sore underarm, If im honest m not interested in in anyway, stopping HRT i doubt if i ever will be againlol . 

Think much harder for woman having this who do live alone, you want to enjoy life and make the most of it, but can be damm hard on own. Know you having work problems as you say but i feel at least at work, id have something to concentrate on, but know how my old company is now, id be having similar problems to you June

[Jules1064]

It seems quite a few of us are going through the same thing. It's right you feel guilty for not being able to perform at the same level which is ridiculous really after what we have been through. I feel like I am causing trouble going to occ health but I need to take care of myself. Starting an 8 week mindfulness course through my oncology centre which helps deal with the psychological scars through meditation. Hoping that helps so I am stronger to deal with the not so kind people at work.

[Seabreeze]

Helenrose, Jukes1064 and Nannysal,

So agree with your feelings...I went back to work approx 2 months ago and the number of people who say oh you are looking really well....one (who previously said she had 3 close friends who'd had breast cancer) was suggesting catching up over a beer or two one eve. Nice but no one seems to have a clue that by the time I'm done at work I have ****** all energy to give to anything else. ..it is really hard when you live on your own since knackered post work can so easily = no social life and no support. Not always easy to pick up the phone for a comedy rant when exhausted although overcame that this pm and felt so much better 4 it! thankfully it was mutual!

Recently saw consultant onc who offered to write a letter to my employer if needed (since she was somewhat shocked by employers approach to bc returnees). I take your poor insubstantial OH report and raise you 2 GP fit notes plus one leading onc (specialising in breast radio) letter! Who should have to play such a ridiculous game of Top Trumps? Let alone when you have previously flogged yourself for said employer who claims health and safety is paramount! Pah! Show it!

Weird, in the office dealing with some crisis or the other one min, then discussing 10 yr survival stat's with the onc the next....not sure which world is Narnnia! Then the well meaning colleague asking how's it going...for first time I found myself saying I feel like I've hit a wall this week. Colleague looked stunned that I hadn't said something positive. I felt guilty...but why should I? Are we really supposed to be 100% superhuman in the office at all times while recovering from this horrid disease?

Feel like I've got one foot in Narnnia and the other in the old wardrobe full of coats...and only other people who really get it are either in the same situation or exceptional friends, more often than not with either personal or medical experience of something similar. That sounds like coming out of the closet!

Hope this week is better...during treatment I was told to be kind and compassionate to myself...think we all need to remember that.

Oh and to the colleague who said, "I just think it's amazing that you are back" - thank you - thank you for momentarily reminding me of what counts, what I've been through, and how far I've got.

Jules - approach a manager, director, hr whoever with a fit note or letter from onc...don't stand for it, turn the tables...I had to but it improved xx

seabreeze (rather gusty and blustery this eve)
X

[Jules1064]

I am experiencing the same thing. I went back to wk 4 weeks ago to a demanding admin job in the nhs after 11 months off wk. I had only finished rads 6 days before I returned to wk. my boss has been great saying I can lead my own phased return but the girls in my office who I thought were friends have been really unhelpful. I have cried everyday I have been back they want me to work as I did before but everything has changed and my thought processes are slower. Got an appt with occ health after I ended up sobbing in one of the managers office when a colleague insisted I took some work back I didn't feel ready to take on.
I didn't imagine returning to wk would be like that. It was all I longed for when I was poorlyduring chemo.

Julie x

[Nanny_Sal]

Don't worry you are not alone! Lots of us feel like you do. I started a post saying almost the same thing just the other week. Truth is our lives have been turned upside down. We are trying to get used to the new 'normal' whatever that is. But the people around us think because the main treatment is over, then we must be okay!

Apparantly things will slowly get better, but don't be too hard on yourself. Think after all we've been through, we are entitled to grieve for our old, uncomplicated lives.

Sending you (((((((((((Hugs))))))))) take care xxxx

[HelenRose]

Feeling sorry for myself today. Does anyone else feelthat those around have forgotten yyou've been ill. I had surgery in August and Rads in Oct/Nov and now on Letrozole. Back in work in Dec to a demanding job in Social Services. I've been really positive but feel that everyone - husband, family, friends work colleagues etc have forgotten I've been ill and expect me to be 100% like I was before....and I'm not. Should I just try and pull myself together or do others feel the same xx