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.
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" !!!!!!!!!!!
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
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!
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
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.
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.
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
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
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
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.
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.
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
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