Hi 

I am glad you have highlighted this area. I had 37 yreatments for radiotherapy for prostate cancer and the hospital amost seemed to be a second home for a while. Plus all the other apointments I had I didnt seem to have time to even scratch myself. Then when the radio finished, it all seemed so quiet. Lickily I have always been a positive person and it didnt really bother me that much. 

I hope your get good results and thanks for posting, Brian

Wow I just been reading your posts. How on Earth have you managed to continue to work. ????? I do not know a great deal about breast cancer. I have lung cancer. I have had 2 separate lots of chemo. Also immunotherap. Had I known then what I know now. I honestly would never have stepped into that chemotherapy clinic. It's left me with certain things that I wouldn't wish on my worst enemy. As you know being a poison it kills bad but it also kills good too. Some of the good I never got back. My next separate course of chemo. Ouch, ouch, ouch. Never ever again. That one almost killed me sooner than the cancer was supposed too. Having been given 6/8 with the chemo less without. It did have a partial affect.. however seriously it kept me bedridden for almost 3 and a half years. No one actually knows why I am still alive. I have let my oncologist have as much blood and extra tissue from biopsy's. I know it's been sent to different countries and also some at cancer research. Only one thing they can agree on is I should not be here. I then spent 7 months on immunotherap. A new one. I pulled out of that. I am now at a point of pause. Some days I feel so lost in the world of cancer. Like I am walking all these corridors and can not find my way out. Other times. I feel extremely confused because no one. I do mean no one can actually tell me anything about why I am here. They know I shouldn't be. I know I should not be. Yet I am. I know I said when I got told I had aprox 6/8 left. I said no sorry it's just not happening. I have people to see places to go, so if you think something like cancer is going to beat me. Your very much mistaken. No a tear shed not a why me. I thought at one point they thought I was in denial. I looked and said oh I understand what I have been told..... I am a natural born fighter. I just want to know if it's purely down to my attitude towards cancer. Is what they think now is keeping me alive. If it is then I will be looking at a very long life. The pause comes. Because I genuinely do not know if I want anymore treatment. Definitely not Chen. That ones been sorted come hell and high water they will not get me back into chemotherapy. Now I am rambling. I just wanted to say keep positive whatever you do. Some days you will feel like giving up. I know I did. Yet although it can all get confusing and overwhelming. Keep positive my love. Just keep fighting. I wish you all the luck in the world. Keep me updated please. Lots of love Marj xx

Hi Poland,, you want to have a word with macmillan or citizens advice. Find out what you're entitled to, don't know if you know but you are now classed as disabled. I understand you plight. I'm on palliative care since February 2016 prostate Cancer gone to lymph nodes, spine, ribs, pelvis and a lung, plus other medical problems, on permanent hormone therapy and some cemo working when OK (not being sick everywhere) then had to retire to look after my disabled wife she needs 24 /7 care (Alzheimers) it's surprising what things you can get (payments and money off) but it's finding out that's the problem government doesn't tell you you have to search for it. Good luck... Billy 

Hi Billy and thank you for your suggestions, we have a Macmillan drop in at the hospital so I popped in and asked. Im a frequent flyer health wise cos I got a dx of some weird autoimmune disease in 2003, went back to work after about 7 months, it erupted again, making me temporarily blind in one eye, lots of faff, eventually they agreed it was a complication of immune disease attacking my optic nerve - an online contact in the USA said my symptoms matched hers and told me to get an MRI, the eye dept wazzock doctor said its "probably just MS" and hearing such a cruel and throwaway remark I burst into tears and  I lost mytemper, went nuts in reception (rheumatology is next door to eyes here) and receptionist luckily knew me well, immediately dragged out my consultant, who dropped everything including his lunch, came to talk to me privately, went to speak to eye consultant, rang the consultant at a Birmingham hospital then did as I told him to and checked what I said on medline., Immediately admitted me for gramming with steroids, three times.  Since then I got medically retired from my old career, After several years faffing about and pensioned off in mid 40s (thank god for public sector pensions that give long timers a golden handshake) I did voluntary work at a school, then got a chance to join a service user carer group at local uni, helping recruit future nurses and physios etc. One thing led to another and through that I got a job supporting disabled students. Im disabled, had numerous joint replacements, foot rebuilt, physio, you name it, cos of the autoimmune thing, so I got DLA, it was downgraded as happens to most people when I got switched to PIP, and they even had the cheek to demand I return a mobility vehicle cos I no longer get high rate mobility.  I lost my temper again! Id never had a vehicle! Ive been through the PIP machine several times, last time Id been wheelchair bound unable to weight bear after foot was rebuilt, stupid assessor woman demanded that I stand on one leg. I lost my temper again, refused to play her game. and although I got PIP, I was shocked to see the downright nonsense they put in their report, I face being reassessed this year, and am frankly dreading it. I use a local advice line place to help with forms so they will probably help again.  Macmillan say I cant get ESA because havent been well enough to work to make NI contributions, so only option would be to claim universal credit, but because I have savings and a self employed husband, I cant get that. SO- Im very lucky and I know that I have a works pension from 15 years ago which goes on for life, and PIP at the moment. Im cross that my workplace have been slack about even letting me know if I could get any sick pay off them as Ive been working with them for about 6 years, albeit with breaks and term time only, but I love the work, and its payback time because I had to fight to get sponsorship for doing my professional training at Uni, because my health record sucked, and yet a doctor who checked me over for the sponsorship said it was up to the Uni to make things possible for me. SO thats how I end up now as a support worker, and I miss it terribly.  Im hanging on hoping that I dont end up having long drawn out chemo, Im on so many drugs already I dread it. Sorry to rattle on so much,  .I suppose its that having faced near fatal sepsis, then been dx with the autoimmune thing, then going part blind and getting my sight back, Im getting flippant. I found out my medical records were full of nonsense and serious errors like diseases I havent got - a specialist centre had agreed to see me for a second opinion on treatment and had started to work with me to cut down the drug burden. I was supposed to be seeing them again this month, but cancer got in the way, and takes priority. So I have no idea if when I can return to work,. if when I run the risk of recurrence, and if when I face further treatment, or a blooming PIP reassessment!   All I do know is how much I appreciate the concern and support from people on here, like you, and feelingI  that its ok occasionally to let of steam about this whole circus.  I also know that tomorrow I will get some answers from oncology about my DX results, and get some sort of road map of what next, Then Friday, its a meet at the Breast Unit where they have a get together with cake and biscuits for those on the treadmill of treatment etc.  Havent been before, but as I got my fake boob on Thursday last week, it seems I have graduated.  Apologies for rattling on. Think today will be mostly spent making cushions for "Jens friends" to send out to mastectomy patients.  Hoping that your palliative care team are supportive, and that you get some support in your carer role, its terribly hard being ill whilst having to do everything for others, having done that long distance for my late parents, you have my respect. wishing you support and good care, K.

Hi Marj and thank you for replying, it's heartening to hear that there are other people who class themselves as fighters!  As you will see from my reply to Billygoatt, Im a frequent flyer in terms of health hassles. Grew up as the only child of parents who had grown up in the 20's and 30's. lived through the war, battled horrible illness, and dad ended up war disabled as a consequence, The family approach was what doesnt kill me makes me stronger!  Neither of them ever complained (I need to be more like that) but Ive been bionic since age 18 when they fixed me up with a breast implant because of a dented chest (congenital deformity I have now been told is Poland Syndrome). I got bullied for that, horribly, by girls at school, so at 18 I got the boob, which has just been removed.  Ive had to battle to get my career, had to have a medical before government would fund my professional traininng, and luckily work went well until the autoimmune disease was diagnosed in my mid 40s, although the national centre for it at Birmingham disputes the diagnosis and was due to see me this month had I not been wacked with cancer.  Irony is they had started to reduce my methotrexate and steroid dose in August, and the breast lump arrived in October, wondering if there was a connection?  Anyway, I get it about not wanting chemo- One of my career roles involved working in a prison, I had to be moved because at one point I was a sitting duck for infections, yet they put me in an office by the triage point for any newcomers to the gaol, then of course I was carrying opioid painkillers so I couldnt have got in past the drug dogs at the gate, and I would also have been a hostage risk! So I went into training dept for a few years then had the final event of going temporarily blind. My professional career ended, but by fluke, I got told about opportunities for casual work with a group of service users and carers to support local university in its training of ots, physios, nurses and social workers, and paradmedics, they involve us alongside academics in things like recruitment of students, and also in review of courses and talks to students and staff about our experiences and areas of expertise.  That role led on to liking being back in a setting where I felt I could contribute, and I found out they were recruiting people to take notes for students with disabilities as support workers. Ive done it for several years, part time only, and Im missing it so much, I really need to b e around people, but right now, priority is to get over the oncology hump tomorrow, see the next consultant, find out if chemo is on the cards, and MAKE him talk to the consutlants at Birmingham and sort out how the heck to get me off steroids and methotrexate before sticking me on any other long term heavy medication. I know that if its anastrazole, it has effects on bones, and joints, and muscle pain. and as someone with a history of all those causing problems and a hospital that left me on steroids without a dexa scan for 6 years, Im not optimisitc this will be managed properly. Ive worked hard to get of controlled painkillers and dont fancy being in a lot of pain again, as our pain clinic just prescribed stuff that had awful side effects and stopped me feeling like a human. Its a quality of life issue really - whats the point of extending my life if I have to take stuff that makes me feel so rough I end up taking shedloads of other stuff to cope with it, which in turn makes me feel ghastly, been there, done that- got the second opinion and they dont even think I had the illness that required the drugs in the first place! I will bear your remarks in mind when I see the oncology people tomorrow, they are in the main local hospital, and I have issues with that place as I have in effect been told it is where I was misdiagnosed all those years ago, and stuck on heavy meds for what is approaching 17 years.  Who would you trust, them, (some of whom hadnt heard of the illness I was labelled with- one registrar said it was impossible for me to have it "because you dont look egyptian!"     at which point all I could respond was "excuse me?" )Im more confident with the second opinion I got from a  national centre of excellence who suggest I have been "mislabelled" and over-treated despite having elements of the illness the local place labelled me with?  Thanks again for your comments, good preparation for tomorrows oncology discussions, Im anticipating hormone blockers, just need to sort out if they can also advise about getting me safely off methotrexate too.

Hi Woodworm and thanks for your reply. Sounds like a heck of a haul of appointments and I hope you are finding it a relief to have come through that. My husband is finding it weird now he isnt having to drop everything to ferry me around to appointments any more. Hes self employed, and has in effect been off work for the last two months, luckily its his quietest time of the year as you cant garden or gut lawns or go up ladders etc in gales and mud. not if you have any sense. Anyway, we will both have to try to keep positive, think forward not backward, we have our daughter's wedding to look forward to next year, and once I get clarity tomorrow from oncology I should be able to start thinking about future.,and whether or not I get chemo on top of hormone treatment. I know husband is getting wound up and wants a holiday even though he has been housekeeping me since end of October when I first got ill. I have fantasies of going to norway and the channel islands, maybe even the gardens in Singapore, although that part of the world is becoming a no go zone isnt it.

Perhaps positivity is the thing we are going to need most to put up with the cabin fever we have both had. We sat together yesterday in the cold and damp attacking some tree stumps from an old hedge we had taken out. I was shattered afterwards but actually doing something in fresh air made me feel so much better. I now have a stinking cold, but hey, thats small beans compared to cancer. have a great week k

Hi Poland (K) if you have cemotherapy, some people work full time it depends on type and strength of course if you have any side effects. Then it's just be careful if Any bugs around, when i had cemo i worked when I could. sometimes i was being sick but as soon as felt OK work it was a factory work muck and dust everywhere metal fabrication and welding, i had no problems, i also have addisons. My adrenal glands don't work so I'm on permanent steroids to keep me alive. Anyway hope you don't kneed chemo. But there's a good chance if you do you can carry on fairly normal.. Best wishes for the future........ Billy

P.s I've other medical problems as well, those ones above are the main ones.