Breast Cancer Now Forum

Belinda, thanks the onc phoned me and appointment to be confirmed but will be Thursday or Friday. Can you believe that radiology would reject a CT scan request for a patient because onc missed a tick box? Unbelievable! On the positive side I have put up with all their mistakes from initially being told I had a cyst through to mammogram being 'satisfactory' even though I presented with a sizable lump. Then followed the secondary diagnosis five months later. Preceded by the five years of me going to breast clinic with the 'cysts'. I was reluctant to complain because at one stage my GP who is lovely tried to drain my 'cysts' and described them as a bunch of grapes rather than banana. As a lay person Invasive Lobular Cancer lookes like s bunch of grapes. I am now going to formally complain. I know it will be a difficult process but I owe it to the women who are going to follow me on this journey and who deserve better. On the Housing Association front it is all sorted. Local CAB came to assist me ( I briefly did some voluntary work with them). It would appear that a couple of their staff are mistakenly or deliberately misinterpratating new guidelines. So CAB and a high heid yin from the HA came to see us today and they both love our flat. Janine I meant to say I changed jobs after diagnosis and continued to work up until s few weeks ago. I am off work at the moment on SSP and don't think I will go back. I think I will return to voluntary work at CAB where I know I can do some good. I am quite lucky in that I took early retirement a few years ago and have a small (very small) pension. Since tnen I have never been out of work as I live in a village and have been offered various jobs. I have days where I could work with no problems and days where I could happily sleep all day. I work for Scottish Government but via an agency so I can't just pop in on days when I feel better. If I had 'proper' contract I could have tested working for a few hours a day. See how you get on. If you can take some time off on pay then do it and don't feel guilty. You have to look after youself first. Equally if you are able physically and mentally to work it keeps things normal(ish). ... View more

My latest debacle - you seriously could not make this stuff up. I have been waiting on a CT scan following the Letrozole stopping working and oncology not listening to me. It was only to be used as a marker prior to Cap chemo but for me it would confirm whether any spread or not while they were pfaffing about. I was told I would have the scan within a fortnight (today is the fortnight) and I had not heard anything. I phoned to chase yesterday and onc's secretary said she would call me back. I am sure you can guess the next bit - when no phone call I chased again today. I was told that form had not been completed properly and returned. I had to then complain and the locum onc phoned me back. She apologised and said a box had not been ticked and the form had to be returned and re-signed. She blamed my local hospital. I had to tell her they were my local hospital even though they are 115 miles away. Turned out they had sent the form to another hospital also 115 miles away which I had specifically asked not to be sent to. I am currently waiting on her phoning me back or hell freezing over whichever happens first to give me a date for appointment. They don't seem to appreciate we still have a life to live and plans to be made. My Dad has bowel cancer and my sister has been left looking after him and I need to help her even for a short time. He is 220 miles away. Katie 'in a right tiswas' love it! Not that ypu were in a tiswas just the expression. You know these books we keep talking about I reckon we ought to write our own. Mind you we are too busy waiting on phone calls and appointments or phone calls about appointments. ... View more

Janine, should have said when I was first diagnosed I read this whole thread and the information here is invaluable. ... View more

Hi Janine, I was diagnosed from the outset (September 2012) with Invasive Lobular BC with spread to right ovary, womb and possibly liver. Bone spread is spine, pelvis, ribs and collar bones. I started out with Letrozole, Zolodronic Acid infusion (to stregthen bones), Zoledex implant and Adcal. I got a few months out of the Letrozole before it stopped working but many others on here have did well on this for a few years. I started Capecitibine (an oral chemo) last week. I do not get too much pain from my bone mets but I have it pre-arranged that if I do to phone Oncology and tgey will arrange radiotherapy. It is hard to get your head round it at first and I definitely thought I would only last a few months but I am still mostly really healthy almist a year later. Someone with more experience than me will be able to help you better than me I am sure. Take care. June ... View more

Hi Val you are right. I am just going to let my husband deal with it. Spoke to the Macmillan CAB today and they were helpfull too. Will order some books and chill. Thanks. ... View more

Hi Val, I have phoned the Macmillan CAB person who helped my get DLA. She was the one who instigated the move for me as she said I would not manage in the flat as this disease progresses. Housing have now sent me a copy of their 'neutral colour policy'. It is an internal document and I believe they have not yet sent a copy out to tenants. I have certainly never seen it. It is dated November las year which was just after my diagnosis. I decorated the flat for my husband as I knew if I was not here it would never get done. I wanted to make it nice or him. I started the decorating in November last year so this document would have been very relevant. I will enjoy the arguement with the housing if I can manage to keep my emotipns out of it which is very difficult as I know you will also know. When CAB phones me back I am going to ask if I can use the Disabilty Act 'making reasinable adjusts' bit to help my case. The housing have now said they will provide labour if we buy paint. I have just spent £3,000 on refurbishing this flat and I am trying to save every penny I can for my husband and youngest son to help them when I die. Do you know what It is all distressing me I am devestated and fed up of putting a brave face on. Val I hope you get your rads sorted out soon. Still haven't ordered any books but do you know what I think I may have a Ken Follett lying around which I haven't yet tackled (only read one of his so far). I am off for a good cry to get this out of my system. Take care. ... View more

Hi Vercors, my husband is having a meeting this morning with Housing Association. I am not sure if I have said this already but I have photos of the flat when we first moved in twelve(ish) years ago, so I have evidence of how bad it was. This is all taking my mind of this disease as well - except for the fact if I didn't have it I wouldn't have to move! We actually think we know what property we are going to be offered and we believe it will be too small for our future needs so ironically we probably wont even be able to take it. Just as well if I had psyched myself up for the offer of a house and garden I would now be devestated. I am going to go off now and order some books. I have only read one Ken Follett a long time ago. You are all giving me such good ideas for reading material. ... View more

Belinda I googled Gone Girl after Val said a film was planned and I found a discussion about the book. It would appear you either love it or hate it. Quite a few contributers were not happy with the ending so you are not alone in not getting into the book. I now have lots of ideas for new books. I am going to treat myself tomorrow. Will give me something to do in between firing off letters to MSP, MP, local Disability Rights and anyone else I can think of. Housing first I think to find out how they think it is value for money to pay thousands to paint two rooms and a bathroom. I am on my high horse now! Hope you are all as well as can be. Take care. June. ... View more

Val, I have read Khalid Hoseini's first two books but I had given up on a new one so that is good to know. My copy of Gone Girl is still with me if you want to PM your address I will send it to you. Equally if you don't want to do that in case I turn into a mad stalker I wont be offended. Katie, I have been watching The Returned which is on the same time as The White Queen so I have missed it. Your dining room does sound lovely. When I said my walls were originally multi coloured I meant with some sort of mad retro style paint job that didn't work. I do like a bit of colour, but I know it's not for everyone. I spent a lot of time working out a colour scheme for my bedroom ( I had a premonition I would be spending a lot of time there). It is a deep redish velvety colour (Val similar the old Edinburgh buses) with a grey carpet and cream blinds. I have cream peony lights wrapped around the metal bedstead and another set of cream lights in a vase. My centre light is a small chrystal chandelier type thing and I have a couple of sparkly lamps. It is so cosy in the winter. I would do the same colours if I moved. If the Housing Association want to take me on I am more than ready for them. I have taken (unpaid) time of work while on Capecitibine so I have time on my hands. If they insist on me re-painting I will just ask them to adjust my flat to suit my needs. Look forward to seeing a stair lift going up the three flights of stairs! Forgot to sau that housing told me if tgey had to contract out the work to paint my two bedroom flat it would cost them thousands of pounds - great work if ypu can get it. They actually employ two decorators so not sure where this 'thousands of pounds' price tag is coming from. I am actually finding the whole situation hilarious now I have recovered. June ... View more

Katie, I described Nick to my husband and he suggested Ben Affleck and I said 'no' so that's me looking stupid again! Nicole Kidman ten years ago would work. This is the problem I had in that any of the women I wanted to play Amy were too old for part. I have read a few of the Roy Grace novels but not recently and one of Mo Hayder's early ones. Will look at the newer ones. Now just read You Had Me at Hello by Mhairi McFarlane - a bit girlie and not my usual type but made for easy reading. That's a shame your day was spoiled. Not having a good day here myself. Just had soneone round from the Housing Association to inspect my flat prior to offering me a house and told I will have to re-paint it neutral colours if I am offered a house. I live three flights up and told him I would rather be housebound than repaint. I decorated (new carpets, velux blinds, light fittings, etc) at the end of the year. My flat is now beautiful everyone who comes in here loves it and I was hearbroken at thinking I would be leaving it.. When I moved in here ten years ago you should have seen the state if it; multi coloured walls (that's multi colours on each individual wall) and paint that should have been on the ceiling dripping on the walls and paint that should have been on the walls sploshed onto the ceiling! I was given fifty pound back then to spend on re-decorating. Apparently policy has changed. I have kept photos of the flat when we first moved in. Now have to fight with the housing. This cancer truly is the gift that keeps giving. Phew! Glad I got that out - not sure whether to laugh, cry, scream or shout! Ps Any spelling errors are my tablets fault and I can't be botheted checking for them. ... View more

Thanks Val. Off to have a look. Hope I am not disappointed with the cast! ... View more

Val, I hope you get your treatment sorted out soon and your Dad is also quickly back on his feet. Sun still shining here although I believe we are due some rain today. Katie, I finally finished Gone Girl and agree it is a great ending and would lend itself to being made into a film. I am currently casting for it (in my head). I am having problems getting the right people who are the correct age (within reason). I think once I have my 'Andie' then the rest might fall into place. June ... View more

Caron I am so so sorry to hear your news I had been hoping you would have some improvement. I can't really add to what Val and Ruth have said as it is so personal. I know what I want for myself but have not yet discussed it with anyone. What is right for me may not be right for you. Please do not stop posting on this thread what you are going through is the reality of this disease. I will be thinking about you. ... View more