Breast Cancer Now Forum

Hi, No I haven't started treatment yet. Initially my employer said they wanted 3 months' notice (i.e. they expected me to resign to get treatment - and my notice period is 1 month only so they really exaggerate). They have also been saying over and over again that I don't have cancer, 'they' must have made a mistake etc. They have also told me over and over again that if I wanted to have treatment, it had to be at the weekend or during my holidays, and that I could not have chemo or radiation as I would have too many absences. I also had to find a treatment centre as the hospital where I was initially diagnosed was too small and the surgeon has a bad record (I didn't know about it at the time but she butchers patients...). I had planned to start treatment in June and had booked a week off (using my holiday allowance) but my medical cover won't start until 1st August and at the time I was still trying to get on the housing ladder. Now it looks I may have to rent. In the meantime my employers moved to a place which is not commutable by public transport (today left work at 17:30 and only got home at 21:30 - cycling...) so I feel completely washed out. They told me I had to relocate closer to work, but my rent would go up by 66%. The area where they work is very hilly too and I am concerned getting around will be an issue if I develop heart failure. I have really nice neighbours where I live now and I am keen to stay in the area as I may have to depend on them for supermarket shopping, cooking, doing the laundromat run etc. I don't know how 'independent' doctors are in the UK, but I am starting to get worried that my employers might use their connections to dictate a diagnosis (and treatment) of their choice to the small local hospital where they absolutely want me to go (I have chosen a big cancer centre abroad). My employers insist I have a double mastectomy ('this way you won't have to worry about your breasts any more') and no systemic treatment, but it looks like I may very well need systemic treatment. On top of it, they want me to have an ovarectomy, but my cells are probably ER - ! Anyway I called a lawyer today. Turns out they are the very people who are advising my employers (to help them fire me). I am really, really worried. I think I will have to end up not having any treatment at all: I don't fancy acquiring resistant cancer cells. Looking for another job is not an option as I won't have the time to wait a minimum of 1 year for an income protection policy to come into place, plus another employer might use a provider which uses underwriting, in which case cancer will be an excluded condition. I think it might even be excluded anyway as I already have a diagnosis. I am completely at a loss what to do. At least I managed to get MRIs done so my doctors will have a little more information to mull over. It really isn't straightforward though: my usual radiologist (who is an alll rounder) told me to go back to the cancer centre for future scans as he feels he doesn't have the necessary expertise, whereas the radiologist there spends his whole day looking at bc as they don't do screening, they only work on patients who have or have had bc. Thank you for your time and advice, much appreciated. ... View more

Thanks Bondgirl, this matches what I've heard from other women. Moving house during treatment/while recovering is a big no-no, unless you can just lie in bed all day and let the brownies do all the work! Best wishes. ... View more

Thanks Jax. I have shown my employer the biopsy reports but he keeps insisting 'they must have made a mistake' and 'you do not look like you have cancer', and even: 'it doesn' say cancer here, all it says is you have is a carcinoma'!!! I had a formal meeting in May when my employer gave me the choice between resignation or a disciplinary procedure: I am using my holiday allowance for scans and consultant appointments (although I still have 6 days left, and some of my colleagues have used all their holiday allowance by June). HR claims my 'absenteeism' is causing disruptions in the office as people wonder why I come and go all the time, and it increases their workload as they have to cover for me (one of the ladies who has been complaining just came back after taking a week off, another one is going away for 2 weeks soon). my colleagues do not like me, and they 'need' to know I have cancer. I have to change my lifestyle, i.e. move to new rental accommodation closer to their new offices (in the middle of the fields... I am actually getting a tent and am going to start staying at camping places nearby a couple of times a week, until I have a driving licence and a car - renting in the town near their offices would cost me at least £200 more each month, so it is not an option), stop going to the gym (already done), stop going to the physio (not an option, especially now that I can no longer go to the gym and the swimming pool and am spending several more hours in transport every day - however I am going to start looking for a physio in the town near their offices, it is just going to cost me £10-£20 more each time) and start eating the same thing as the others (bacon sandwiches, tea with sugar and milk, biscuits etc.). I get diarrhea because of the stress (and because I've stopped going to the gym, so slowed down intestinal transit, constipation, bloating etc.) and HR claims it is because I eat too much vegs. I was extremely upset after those 2 meetings (2 of them, 2 days running), especially as the day before I had seen a consultant (2nd opinion) who had yelled me that my cancer was probably invasive and had probably already spread to the lymph nodes etc. - he wanted to do a MRI the next day and operate a couple of days later... My GP signed me off for a couple of weeks for stress (which I used to pack my belongings in cartons as my landlady is going to give me notice any time soon). HR told my colleagues I was suffering from depression... So now I have to put up with the jokes about mental heallth issues etc. HR told me that if I insisted on taking several months off for chemo (he won't allow me to work from home), he would have to make up an excuse saying I am undergoing psychiatric treatment. Anyway, one of my colleagues who is sympathetic (but doesn't want to lose her job) knows I have cancer, I am going to tell another one, and I emailed 2 other people, explaining I had a genuine disease and it was not psychiatric (I guess they can read between the lines and understand it is cancer). I had another formal meeting with HR last week and at one point he made a lapsus and told me 'we have been having formal meetings for one year now'. Huh, no, first one was one month ago! What happened over one year ago is that I passed a qualification, they had refused to fund it on the grounds it would be too difficult for me, and one of the directors (never mentioned at any of the formal meetings when I know this is coming from him) was absolutely incensed as I was now as qualified as he is, and as they keep promoting people who are less qualified and less experienced than me, it does not make them look very good. After the meeting last week, HR took a call from what I think is an employment lawyer: his office is right next to my desk and he closed the door so that I could not hear the conversation but I have very good hearing and he was discussing the meeting he just had with me... He was particularly annoyed about the fact that I am keeping a spreadsheet with the time I come in to work and leave work every day (also showing when I leave home and get back home). I do work less hours since the office move: I used to stay until 10pm-11pm and have only been able to stay until 9:20pm as it takes me 2 hours and a half to get home, and the country road where I have to walk then wait for the bus is an accident spot. However I am still doing my contractual hours and a little more. I am going to start making compliments to every single one of my colleagues every day, and keep a spreadsheet of that too. HR actually suggested I go to them and 'have a rant' about life, clients, providers etc. but I am sure this is a trick to  help build a case saying I am an extremely negative person, suffering from depression etc. So I am just going to make up lies about how pretty people's clothes are, or how healthy their sandwiches look like, or how lucky they are to go on holiday etc. Unfortunately, I can't really discuss methylation with them: when I started, I tried to discuss environmental issues (pollution at sea) which I had been reading about, and got flagged for 'trying to impress others with my knowledge'! As if they didn't spend most of their days bragging about themselves...   What I am also absolutely fed up about as well is the scores of people who have had DCIS and describe themselves as 'breast cancer survivors', when their DCIS could have remained dormant throughout their lifetime (no reduction to life expectancy). So HR keeps insisting all I need to do is have the breasts removed and then there will be no need for any further treatment or check-ups. There definitely will in my case. I can't get him to understand that 'breast cancer' is an umbrella term and DCIS isn't the only diagnosis! Or rather, as CAB told me: he understands very well, but it is inconvenient for him to let me have treatment, so he is trying to make me resign/build a case to fire me. He also started interviewing people to replace me last month, as he wants to 'be prepared' if I leave! He is offering them permanent contracts... I think the only way I can keep my job is not to have any treatment at all. I don't have the time and energy for a dispute, especially as I already have a family dispute on the go, and because of my pending housemove, I am living in the middle of cartons and suitcases. Don't even have the time to go the laundromat or the supermarket (or cook) because of the commute! Sorry for the length of the rant, really needed to let off steam! ... View more

Similar situation here. I told HR of my diagnosis on the 4th January. I was supposed to start treatment 10 days later. I had had to fight the surgeon as she wanted to operate on the 4th January, the very day the office reopened after the Xmas break - I couldn't very well have the hospital call them to explain I wouldn't be showing up as I was going to have treatment for a minimum of 3 months! On the 4th, HR told me I would have to give him '3 months' notice' before I could start treatment (he assumed I would resign). The next day, he told me I would have to wait until one of my colleagues came back from maternity leave in June 2016!!! Anyway, I haven't had treatment, and carried on working until 10-11pm several times a week. In June, we moved to new offices which has added 2 to 2hours and a half to my commute (by bus...). Unlike my colleagues (2 of them have already gotten themselves jobs elsewhere), I wasn't told about the move, so didn't have the time to take driving lessons. Now I am spending around 5 hours in public transport each day so will only be able to take driving lessons at the weekend. HR fully expected me to resign because of the increased length and cost of the commute, and you should see his face when he walks in every morning and sees me at my desk. Have been summoned to several formal meetings with HR since May. He keeps insisting I have to leave because my colleagues do not ike me, I have to tell them about the diagnosis as it will improve my relationship with them and they will try to help me (a real joke - one of the reasons I have been avoiding to take any time off, even before diagnosis, so that I would end up with 10 days of leaves left in December, is all the backstabbing in the office). And of course: I don't have cancer, it it my imagination, they must have made a mistake, I don't need treatment; or: if I do have cancer, the only treatment he will allow me to have is a double mastectomy (he has a problem with women, and my colleagues have repeatedly been wondering whether I have implants or not, as I am very busty) and an ovarectomy, nothing else, and I must go to the small hospital and have the treatment at the weekend (on Friday he even told me I should be able to walk - across fields, climbing over fences - from the hospital to work). I was so upset after the first meeting that my GP signed me off for 3 weeks. HR told me I will get benefits when I resign, including accommodation (I am renting and my landlady found out I had cancer by snooping around in the flat when I was at work and is going to give me notice). I saw several GPs and several staff at CAB and they are all adamant I must NOT resign. I am exhausted. I am doing everything I can to please HR: I am coming into the office before 9am, I have stopped eating healthy meals (which antagonised my colleagues), and I have stopped going to the gym (no longer possible because of the commute). I am not going to have a double mastectomy just to please him and I am probably a minimum of a stage 2 so I will need some systemic treatment. And guess what: they have a 'Wear it Pink' day every year... ... View more

Try and look for term insurance (e.g. for 10 years, or until the mortgage is paid off and the kids have finished uni) rather than full life insurance. Do read the small print when taking out life cover: I have seen policies which covered in situ but not invasive, and policies which did not cover recurrences from a previous cancer (so you would need to develop a new primary and die of it for the insurance to kick in). For 'in situ' stage 0 breast cancers, you should be able to get cover from providers like L&G etc. For more serious cases, Pulse Insurance are quite good. Depending on the site, stage and diagnosis, you may have to wait 2-3 years after all treatments have ended to get cover. They will load the premium however, i.e. raise it to reflect their increased risk in covering you: the loaded premium can be several times the original premium, with one or more additional zeros. However, after several years with no recurrence (generally, from the time you are considered to be 'cancer free', i.e. 10 years), the premium is lowered back down. ... View more

Hi Butterfly. Thanks for your reply. Similar quandary to you, family issues (started nearly half a century before I was born). Need a sol who will see to it that my will is implemented after I die, not someone who will just bow to my relatives and them the monies. Have been in touch with a couple of them, and they didn't want to get involved with a lengthy and acrimonious dispute, especially as there's not that much money at stake. Most people just tell me not to write a will, why does it matter if my relatives get my estate if I die, I will be past caring etc. I do care now, and it is a matter of principle. And it's not as if I was leaving my estate to a gigolo: I am leaving it all to charity. So still looking, going for more pricey solicitors now... I think older chaps are always better at that sort of thing: they've got some life experience. Young people do tend to be more naive. Best wishes to you.     ... View more

I have been seeing a shrink for several months now: she specializes in dealing with young people who are terminally ill. I do also read and reread books about death, physical pain, regrets etc. I don't need to spend more time talking about that, especially all the things I never got to do in life (getting married, having children... never even had a boyfriend: the only people who will have seen my breasts are doctors!). I'd rather keep some spare time to get and do some of those things. I do have more and more issues at work. HR disputes the fact I have cancer and don't want me to go on sickness leave: they insist I have 'treatment' during my holidays and they definitely don't want me to have radiation therapy or chemo as I would be off work for too long!!! I didn't choose to have cancer, and they definitely don't have a say in what treatment I get! They say that if I want to get treatment that takes more than a couple of days I'll have to resign. This at the time when one of my colleagues after another is going on maternity leave etc. The very idea of using my 'holidays' to have a mastectomy, sentinel node biopsy etc. is also extremely shocking to me: I'm still in pain from the biopsy (including armpit) and the mammogram, which didn't feel like a holiday at all. I was so shell-shocked after spending half a day in hospital that I climbed into the wrong bus, and only came out of my reverie after 20 minutes, when I found myself in a totally unknown town! Had to get off and find another stop with a bus going back (30 minutes wait). How am I going to cope after real surgery? At least, as long as those breasts hurt, I know they're still there, but I don't think I'll get to keep them that long, and that's going to be difficult to adjust to. Is there any way I can keep my job open while undergoing treatment? I do need the income to pay my PMI as I am going private. Have looked into self-funding and definitely not possible. HR won't even discuss working from home, even though I am not a slacker and they've done it for other people in the past. ... View more

Thanks. I found the following quite useful as well: http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Advancedcancer/Puttingyouraffairsinorder.aspx Hope I'll get some answers otherwise I'll have to start emailing solicitors in my area (can't really call them from work!). I don't have next of kins who can act as executors, so need to find a suitable person (preferably a professional). I'm also making my own funeral arrangements: most providers don't even seem about that as they waffle about 'saying goodbye to your loved ones'. When I was a kid, I knew two little old ladies who had to be buried as paupers, with literally no one except the (fee-earning) priest at the funeral: quite sad. I wanted to buy remembrance plates to put on their graves (they were neighbours) but as my mother had not attended the funerals, we never managed to find their graves at the graveyard! The staff told us that if the stone-carving companies had not delivered the headstones, their graves might very well remain unmarked. ... View more

Hi Seabreeze, Your post nearly made me laugh. I'm not being insensitive, I may be facing radiotherapy (5 weeks) myself in the near future. I think some kinds of chemo make you 'stink' as well! Best wishes. ... View more

That's interesting. I am covered by BUPA through work too, and I haven't managed to get a single refund yet (physio and dental treatment). When I call the call centre I get a long list of excuses: 'we don't have you as a member' (look harder...), 'we don't have your payment details' (yes you do...), 'we have already refunded you' (no!) and ultimately 'the receipt from your health provider is not acceptable, we need a letter from them'. ... View more