Breast Cancer Now Forum

Beeny, I hope everything went well for you in the op. I have been looking for something positive for you to cling to. If it helps, after my right mastectomy I thought how fortunate I was that it wasn't bilateral as I wa able to use my left arm to do a lot of things that I couldn't temporarily do with my right arm. I am not sure if that is of any comfort to you but don't feel bad about this knocking you down. Try to take strength from anger (I'd be angry at being messed about) - it's a very strong emotion but perhaps you could channel that strength for your benefit, to make you determined to beat the cancer and the system and everything else! ... View more

Week 8 Got my new boob! I was expecting a BCN but the lady who does the fitting explained that she isn’t medically trained, although obviously very experienced. She was very kind, understanding and went through things at a relaxed pace – I never felt I was being rushed into a decision nor did I find it embarrassing in any way. I hadn’t realised how many types of prosthesis there were either! We tried quite a few and eventually decided on one we were both happy with, which we tried in a few different bras I had taken – two mastectomy bras and one old one. She gave me a form to take with any bras I wanted pocketing to the Nicola Jane shop so they would be done free of charge. She also said I may be a 34D rather than a 36B. When things have settled down I think I’ll go to the Nicola Jane shop and try some different sizes. I was going to donate all my old bras to Oxfam but I kept them in case there were any I could still use once I had my proper prosthesis. At some point I need to do the trying on exercise. ... View more

I found I slept better on my back, although my normal sleeping position was on my bad side with my arm up under the pillow - I still can't do that and my op was on 1 March, but it's one of my aims! I moved on to sleeping on my good side I think after a few days. I can now sleep on my bad side but it's still a little uncomfortable. I still have some of that sponginess and puffiness 7 weeks on, although it is much better than it was. In the early days I found I woke up early so went to sit on the settee and read a book and inevitably found I then fell asleep in a kind of half sitting/half lying position. I hoe you find something that works for you as sleep is so important to your recovery. Best wishes. ... View more

Hi Dunstan 12, It is understandable that you are hurt and angry. I think anger can be a positive emotion as it gets the adrenaline going and that gives you strength which you need. It seems to me that cancer patients are always portrayed as brave and saintly so people don't feel free to say actually I feel dreadful, I'm really angry that people who do terrible things get away with perfect health and people who are genuinely nice people get sent this disease to cope with, and I am scared. I think that's one of the really good things about this forum, everyone can take off their brave face, stick it in a drawer, and tell it how it really is. You have tons of sympathy and understanding from the other users of this forum and I am sending lots of positive thoughts your way. Try to do something fun today. ... View more

Week 7 Received a copy of the occupational health report which said I would qualify under the disability provisions of the Equality Act. That took me aback. I am not sure I want to be thought of as disabled, but I suppose if it helps me to keep my job I shouldn’t complain! Minor panic when 10 year old walked in to chat to me whilst I was in the shower because I hadn’t locked the door, which I had been doing since the op. No-one except me and the medical team have seen my scar yet and because I wasn’t expecting it I probably overreacted and turned away and asked him to talk to me when I was out. I should have just not made anything of it but I think I was worried about upsetting him just before he left for school. So that’s still a hurdle to overcome. He was a great help though when I was trying on my mastectomy costume with shower puffs as padding as recommended on another thread. “Too big” “Too small” “Just right” – it was like a scene from Goldilocks! I caught myself in Tesco’s deliberating whether to buy the ordinary or luxury shower puff and holding them out in front of me trying to decide which was the right size. There was a woman next to me who must have thought I was taking a long time trying to decide whether the luxury one was worth an extra 50p! I was telling a colleague at work that I feel I haven’t got my “oomph” back yet. There could be all sorts of reasons – recovery from surgery, simply having got out of the work habit, the fact that I am not working full hours yet, the fact that I don’t feel “normal" yet or possibly the Tamoxifen. I just want to fast forward through this awkward phase to having my permanent prosthesis and being used to it and being able to work without that constant awareness of pressure – I know it’s going to be a different normal but I want to get to that stage. But why am I wishing my life away, haven’t I just been warned that every minute should be made the most of? ... View more

Hi Littlescoot, just to say that I struggled with nerve pain at about the same time as you. When I saw my BCN a week ago (so 5 weeks after MX) she asked how I was doing with it and I said it was much better. She asked what had helped to relieve the pain and I told her I thought it was simply time - she nodded rather wisely. I think sometimes if you know that a pain is temporary then it makes it easier to bear. I hope the meds are working for you. ... View more

When I saw my sugeon and BCN last week they said they were happy for me to swim now (and in fact recommended it) - that was 5 weeks post op, but I should imagine each case is different as it depends upon how well you have healed, any infection etc. Funnily enough the BCN recommended the shower puffs which I thought was really weird and then funnily enough have just seen it on here, so, having got my cossie (in the M & S sale as a result of this thread!) I'm going to see if I can find some in the supermarket tomorrow! ... View more

I haven't been on for a few days but felt really touched to read your lovely kind and supportive comments, and I am so pleased if my diary is helpful to anyone else. Week 6 Back to work! Everyone has been very kind and asking how I am. I had only told certain people what the problem was, most people just knew I was having an operation. That was mainly because I didn’t want people feeling awkward around me and wondering if I was going to die. I knew word would get round anyway so I have been open with people and emphasised that I am really lucky and have an excellent prognosis. The most difficult thing about going back is the message I give about what I can do. On the one hand I don’t want to overdo it and cause myself problems and therefore need people to understand that, but on the other hand I don’t want people to think I am now not able to give 100% and therefore put myself in the firing line next time there are redundancies. My job is mainly office based and I can avoid strenuous lifting but I do find using the keyboard and mouse for long periods tiring and the discomfort around my scar increases as the day goes on. I was supposed to be doing half days this week but one of those turned out to be 8 – 3 and I was really feeling it at the end. But it is really hard to say I’m not going to finish that piece of work, especially when colleagues have been working extra hard and long covering for me. On Friday I had a call from a doctor who deals with occupational health for the firm and she thought I was overdoing it and next week should just do 8 – 1 although we agreed I could do 8 – 2.30 if I feel up to it, and then increase by one hour per week so I will be back to full time by the end of the month which was my aim. I don’t think she realises my full time is 7 – 6 minimum! She is going to recommend a different “penguin” mouse which she thinks will help. I wonder if other people have struggled with a mere desk job, I feel a bit of a wimp. I took the opportunity to ask her when I would be able to lift any weight again and she said there had been studies done which suggested lifting heavy items could lead to lymphoedema and that I shouldn’t lift anything heavy for two years!! When I was bringing in the supermarket shopping today I was thinking but how heavy is heavy? Oddly I found flushing the toilet at work difficult! (push button type in the wall – I can’t push with any force). That was easily sorted by using my left hand but I found myself thinking again how much harder it must be for someone who has had a bilateral (I would have had to take a shoe off and use my big toe!). Also when one of the printer drawers stuck I was wary of giving it a good yank which I wouldn’t have thought twice about before. Spent most of Friday morning at the hospital where I had been booked in to the wrong clinic. I thought I was going for the prosthetic fitting and they (and they were honest about this) really didn’t know why I was there. They did try to find a BCN to sort me out but no luck. They did however put me on the phone to agree an appointment time at the right clinic week after next. So – different challenges at work, but it is good to be heading back to normal life. ... View more

Week 5 (can't believe it!) Days 29 - 31 Took one son each day shopping – so much less stressful than both at once! Building up my confidence of being in crowds; when it gets busy I get nervous that someone is going to barge into me. Wore softie each time but off again when home! I am wearing the sloggi crop top all day now though – progress and (crossed fingers) I don’t think the nerve pain is as bad. Maybe it was listening when I told it to b***er off! Funny thing happened this morning (not at the time but looking back!). When I went to get in the shower I noticed that all down my right hand side from the wound down was a strange red/purple colour. I thought I had some weird infection and then realised it was just where I had been leaning against the side of the settee and it was where my pyjamas had been touching – probably happens all the time and you never even notice it. Must not get paranoid! Day 32 Oh dear – meltdown hit out of the blue. Thought I was coping so well but I think a combination of things, pain build up through day, problems with OH and then my son not eating his tea and me getting cross about it was the pathetic little straw that broke the camel’s back. So I sat on the bathroom floor and cried into the towel, hoping they wouldn’t hear, but my little boy knew by my face and gave me big hugs and said how sorry he was. I had to explain that it wasn’t his fault and that sometimes I would have bad days when things that wouldn’t normally bother me would be upsetting. We had lots of hugs and he read some of his book to me to cheer me up. I love him (and his brother) so much and I must be grateful for the treatment which means I will be here to see them grow up. Day 33 and 34 Delivery of the things I bought online last week. I ordered a sports bra from M & S in medium and large. Optimistically opened the medium and laughed – definitely the large (I’m a 14). As I put it on over my head I reminded myself I probably wouldn’t have been able to do that a week or so ago. Had to put a hanky under the seam running under my arm but otherwise good and wore my softie for a good few hours. I felt quite positive about myself but realised I would have to keep an eye on the softie otherwise I would have a left boob and a middle boob but still no right boob! The first time I came to take it off I really struggled and thought I would have to cut it off but perservered and got there by taking my good arm out and then over my head and then bad arm. Day 35 Moved on to post surgery bra and managed to wear it all day although I was desperate to take it off after meal out in the evening – a thank you from me to a very supportive friend. Walked to doctors to pick up (as arranged!) “fit note” saying I can go back to work on Monday on phased basis. When I got there they told me I couldn’t pick it up until Monday as they can’t be post dated. Sounds bonkers to me but I enjoyed the walk in the sunshine and it blew the cobwebs away!. I seem to be free of the nerve pain now thank goodness. Day 36 Back to hospital for check with surgeon. He and BCN very pleased with healing and my range of movement (felt quite proud of myself!). Can go swimming now – have ordered a costume and need to sort out a swimming boob, will probably wait until I have a costume and then go to the Nicola Jane shop. I asked the question my son had asked me about how many stitches I had in the op (I had promised my sons they could ask me anything and if I didn’t know I would find out – of course boys are interested in things like how many stitches!). I don’t know what I was expecting but I wasn’t expecting to hear the answer – hundreds! I asked him if he had done needlework at school! Met colleague for lunch to find out what has been going on at work before I go back on Monday. Almost nervous about it! ... View more

Angie - you have done really well getting back to work so quickly. Are you working full time and did you find it difficult going back (physically and mentally)? I am aiming to go back mornings only next week because I find the pain builds up as the day goes on and I am hoping I will gradually increase to full time (which unfortunately in my case is about 11 hours a day). ... View more

Hi TDJ, I hope things have improved since your post on Sunday. Advice is easier to give than take when you are feeling really down, but firstly it shows that people care about you and secondly it may give you some ideas. I can't say that all of this will work for you but maybe worth a try. I think number one is regular sleep, eating and exercise, whether you feel like it or not (you have to be disciplined, take it like medicine). I know the sleep bit is hard as you can't make yourself go to sleep but you can stick to a regular go to bed and get up time. Have you tried talking to someone on the helpline? That may be a hard step to take as you may be frighterened of bursting into tears as soon as you being to talk, but I am sure they will have plenty of experience of that. They are bound to be able to offer advice. I am not sure how old your children are but could you explain that this is an ongiong part of the condition - the side effects of the treatment are probably the biggest challenge and come when everyone is getting a bit bored with being sympathetic. They really may not understand that this is the situation and if they do understand then they can help you more. Can you plan some little treats to look forward to? Coffee with a friend? A trip to the cinema or theatre (depending on budget?), a soak in the bath with some nice bubbles? If it helps, I had a meltdown last night and just sat and cried on the bathroom floor. Not about the big problems (BC being just one of them!) but seemingly because my son wouldn't eat this tea (what?!). I don't know whether that is the Tamoxifen or just letting out tension I have allowed to build up behind my brave face but sometimes you just need to let it all out. I feel better this morning and try to remember when you feel down that it will pass and the time will come when you will be looking back at the dark days. Lastly - bananas are supposed to be good! Hang on in there. ... View more

Deb - just thought. If you want to go to the Haven and would like someone to go with I am more than happy to meet up and go with you? It might be a bit less daunting to go as a pair? ... View more

Hi Deb - I have been on the website for the Haven but haven't been there. I looked at events there and there didn't seem to be much on and I didn't want to just turn up. Also I feel a bit of a fraud as there will no doubt be lots of people there who are undergoing chemo and rads and basically the hard bit of my treatment is over with the mastectomy,I just have to wait for the pain etc to fade away (hopefully!) and keep on taking the Tamoxifen. I kind of feel I would be taking up resources which other people need more than me, if that makes sense! ... View more

I would say baby wipes so you can freshen up even when you can't get out of bed and mints or sweets to suck as sometimes you can have a sore throat due to tube inserted for general anaesthetic. I didn't have either! Also button through nightie or pjamas - definitely not an over the head job! And make up to make you look human when you depart (if like me you look inhuman without). If you are interested I did a diary of my experiences in the undergoing treatment:surgery thread but you may prefer to just see how it goes. We are all different! ... View more

Hi Deb, I am in Rothwell but work in the centre of Leeds. I think you are about a week behind me and I am pleased to tell you that it must be about a week since I lost that red hot poker pain - you sometimes don't realise a pain has gone until someone else mentions it! I don't know if you have seen it but I have posted a diary of my progress under the thread about treatment: surgery. It might help to see progress being made, even though we haven't had exactly the same procedure. I had a bit of a mix of treatments. I was diagnosed at Jimmy's after a referral from my GP (who told me she thought it wouldn't be anything (just like last year when I actually had skin cancer!)) Because I have private medical insurance through work I discussed private versus NHS with him and decided to transfer to see him privately at the Spire. He told me the care was just as good at Jimmy's but it is nice to have a private room (and the food is better!). I also went to Jimmy's for the radioactive isotope injection. How did you find your treatment there? Probably one disadvantage of private is that you don't have other patients to talk to. I went to investigate the new Trinity Centre in Leeds today. I took my ten year old who was my bodyguard. When it was busy he stood in front of me as I was frightened of getting knocked - he did a brilliant job. I am working on building my confidence ready for a return to work (wonder if I can take him with me ) ... View more

Sharon - I am confident you have the strength to get through whatever this trip throws at you - one step at a time. You never know how strong you are until you are tested. If you have raised three boys I am sure you have the strength of an ox! I am only two years older than you but my boys are still only 10 and 13 (late starter!) and they test my strength on a regular basis. You must have had your traumas with them over the years which were scary at the time but which you have come through and now look back on. One day you will be doing that with this. If you feel wobbly post on the forum and someone will be along to give you a virtual hug, or reassure you that what your are experiencing is not out of the ordinary. Ranting and raving in a way you may not be able to do with friends and family is fine here. I think everyone's first thought is whether they are going to die and that is perfectly natural. I don't know what results you have but bear in mind that a lot of the problems people post about are side effects of the treatment - and that is because there is such a huge range of treatments available now. I don't know if it helps but it helped me to think of my diagnosis as something positive - the start of beating the cancer; without the diagnosis I would have been happily ignorant but with a cancer growing inside me and spreading. As you get further down the line hopefully your medical team will be able to give you positive confirmations as to the success of each step. I felt so relieved when they told me they had removed the tumours and I am sure you will too - that is a big positive step. It's not easy but you can do it! As to tips, apart from what I have put in the diary I would just say ask if you have concerns as your medical team will have so much experience which they can use to help you. Also take all the help you can get from family and friends. When is your op scheduled? ... View more

Week 4 (for anyone who hasn't got bored to death yet!) Day 22 I must be getting better as I am noticing all the jobs that need doing round the house! I have been working through old paperwork a bit at a time – must be good physio and makes me feel I am not just watching time go by. I think the fluid bulge under my arm is smaller? Got very cross with OH for moaning about one child not liking onions as if that was really a big issue in the scheme of things. I have always been impatient with him for not just accepting that our children aren’t perfect and never will be and that many people would love to have two healthy, normal children, but, as I explained to him later, at the moment I just can’t cope with him bothering about things that are just not bl**dy important, and people in glass houses shouldn’t throw stones (ie he is far from perfect!). Got my punishment for being stroppy as I wacked my finger on a drawer. I fretted about that for a bit as I know you are supposed to be really careful to avoid injuries because of risk of lymphodoema and trying to break your finger is probably not good. Day 23 Interesting purple finger this morning but it moves! Decided I should make more effort with bra and softie so put them on this morning and a top that pulls over my head. I couldn’t have done that a week ago so that is good progress. I am conscious of the bra and softie all the time, a bit like when you first start wearing a bra, and of course that feeling disappeared years ago so presumably at some point the time will come when a wearing a false boob won’t feel uncomfortable. I had to take it off in the early evening as soooo uncomfortable. Fluid back under arm! Day 24 Had to do quite a bit of driving today running the boys around. It is still quite sore when I drive, especially when I go over bumps – I seem to get more jiggle where I don’t have a boob than where I do! Found it helps to hold one arm across my chest (but not practical to do this when changing gear!). Inspiration from reading other posts – will ring BCN tomorrow and discuss whether should have fluid drained. Day 25 Lovely BCN said to pop in to see her whilst there to see oncologist but also to try a crop top rather than old bra. Go online and buy couple of crop tops in different sizes and a few other things whilst I was on there! When I see her she can see the problem but says she doesn’t want to drain unless absolutely necessary as any procedure carries a risk of infection and once you start draining you often have to keep doing it (sounds a bit like breast feeding!). I may be unlucky and have a suture under the skin at the point where the scar and bra side cross. Give the crop tops a try and BE PATIENT! Oncologist confirmed no rads required – good job as one of the factors which led to me choosing mastectomy over lumpectomy was that I understood I then wouldn’t need rads. He said rads only needed if there is any indication of local reoccurrence – questions being lymph glands affected (no), vascular invasion (no), size of cancer (presumably ok) and margins (clear). He also said 90-95% chance no reoccurrence in my case and no-one gets an absolute guarantee. I know I have been so lucky; thank goodness I didn’t bury my head in the sand. Day 26 Got stressed today as my work remote log in wouldn’t work and I spent most of the day on the phone to IT. I think when you get stressed you tense up and that makes pain worse. My mum (bless her!) has lent me two Sloggi tops (size 18 – I am a 14!) and I have tried them on with the softie – think I could cope with those, especially as there is no seam/scar crossover. Never thought I would be wearing my mum’s underwear! Also – secret confession – I shaved my armpit with a wet razor which I know is not allowed but I don’t have an electric razor and those creams remove my skin and leave the hair there. I was really careful and it wasn’t the smoothest finish but I feel better for it. Day 27 Tried mum’s sloggi top with softie and was really pleased. I think because there was constant skin contact it seemed to put a stop to the “sensitivity” type pain which I got when anything even slightly touched my chest/side/arm/back. It began to get quite sore at the side near my arm but I put a tissue in to spread the “load” and that was better. I was a bit lobsided as my real breast has more gravitational pull (!) but I don’t think anyone else would have noticed. Wore it until late afternoon but was then getting too sore so took out softie. It seems I have to choose which pain I want, but a change is as good as a rest as they say! Am working on my back to work plan – I am doing bits from home, and next week, whilst the boys are off school, I want to get out and about more to test physical strength and confidence and the week after I want to go back half days. Let’s see! Day 28 BCN rang to see how I was doing with softie. Told her still having problems, especially if I wear it for some time. She thinks I have nerve pain and if it doesn’t improve soon they can prescribe some tablets for it. Don’t want more tablets, just want it to b***er off! ... View more

Thanks janemod. I have to count my blessings - no rads or chemo and I seem to be able to sleep fine. It just builds up during the day and more so if I wear the softie. I am going to take some ibuprofen and go shopping - either the tablets or the retail therapy might work. I don't think the Tamoxifen is bothering me (YET!) but I have only been on it for a few weeks so I am not counting my chickens. I use my old spray deoderant under my good arm and roll on Sanex under my bad one - how mad is that! It must be really hard, feeling smelly,even if you aren't to other people. I know I was desparate after the op to have a proper shower and wash my hair. One day you will be through it and will look back and laugh at your stinky self! Just keep looking forward... Best wishes ... View more

Hi ladies, hope you don't mind me posting on this but two things caught my attention. Debcully - I am another Yorkshire girl - in Leeds. Janemod - do you mind me asking about your nerve pain? I thought I was doing really well originally and have hardly taken any painkillers but what I have been calling my sensitivity is starting to get me down. The BCN called me today to see how I was getting on and she says she thinks I have nerve pain. What is your pain like? My difficulty is that I don't have continuous pain; if I stay still there is nothing, but if I move and clothing touches me, expecially a seam or the edge of a bra it is really sore (as if I was wearing something new that was rubbing badly even thought it may be barely touching). It means that I am struggling to get anywhere with wearing even my softie with a crop top; the pain builds up over the time I am wearing it and it starts to feel as if the softie is really pressing against me. She has mentioned some different pain relief but I really don't like to take a lot of tablets; it's bad enough having to take the tamoxifen, but I accept I need to do that. It may be that I don't have any choice or I just have to stick with the pain, but I want to start a phased return to work the week after next. (I had MX and SNB (4 nodes removed) on 1 March). How are you managing? ... View more