Just wanted to get a sense of how people cope with secondary diagnosis and working. I am sure people do many different things on receiving such a devastating diagnosis but would like to understand what’s possible.
Also can I ask where do you go for practical advice such as financial planning etc?
Hi Hopege
I tried to work from home (via remote access) for a while after my secondary diagnosis but found it too difficult because of the state of my spine plus my brain just wasn’t co-operating with me at that time!!
When you ask about financial planning - in what way do you mean? I’m sure that there will be quite a few ladies responding to you as there are a lot who do still work. I think it depends on the secondaries you have plus at what stage they are at.
Pinkdove
Thanks pinkdove - I was just sitting here thinking about how best to plan fot the future. I have two young girls I need to protect and any advice as to the best way of ensuring they are financially secure would be helpful - I guess I need to speak to a financial advisor but it’s quite scary knowing what to do for the best.
I know I need to apply for DLA - I may look at a website this afternoon - if I feel like it. I understand you can apply at anytime (sooner the better).
Geraldine
Hi Geraldine
I responded to this on another thread - but to save you searching this is what I said…
I should say though that I entirely agree with pinkdove - what you can do depends very much on the progression and extent of your secondaries and how well you feel with them. I’m in the very fortunate situation of being symptom free (so far) as far as the cancer goes. It’s this blasted treatment which knocks you flat.
. I didn’t work during the tax+avastin chemo as my onc didn’t want me exposed to infection and my job involves quite a bit of travel, but I’m back at work fulltime now I’m on hormonals and coping OK. How you feel with chemo varies enormously but for the first 6 of the tax+ avastin treatment I felt fine except for a few days a month. I decided to stay in touch with work and went to occasional meetings (if they were ones that interested me) but was able to ignore the stuff I didn’t like! The positive thing about this was keeping in touch with people and not feeling like some sort of cancer hermit. I also started doing some of those things I have been meaning to do for ages - lots of gardening (with gloves on), learning to sketch and watercolour (still rubbish, but love it!) and also allowed myself the luxury of lounging about with a book more than I usually do. I did find that my concentration was zapped by the chemo though, so couldn’t do too much which involved thinking. So my advice, for what it’s worth, is keep as busy as you feel able to be with things you enjoy - but don’t allow yourself to be pressured into doing more than you are comfortable with.
Hi Geraldine
Are you still working? I worked for a small registered charity as their HR Manager and unfortunately we didn’t have the luxury money-wise to retire people on ill health grounds.
My son had only just started uni when I was diagnosed with my secondaries so we looked at all our options money-wise. I found out that I’d been paying extra on top of my private pension in the event of illness and although it took them quite a while to agree (because I claimed outside their time frame) they now pay my premium each month and have done so for the last 2 years.
I initially rang the Benefits Enquiry Line about incapacity benefit and the woman I spoke to was so helpful. She asked me what was the matter with me and it was her who suggested that I claim for DLA. She sent me the form (which is quite long!) and I filled it out but didn’t fill in the Special Rules part as I had problems with getting my head round the fact that it said ‘only six months to live’ or something like that. The BEL then rang me again to say why hadn’t I claimed under the Special Rules and I explained my concerns but she said to ignore that so they backdated my claim and was awarded both the higher rate of mobility and care.
I agree with you about it’s scary knowing what to do for the best and who is the best person to gain that information from. Do you have access to a Macmillan Nurse as she might well be able to point you in the right direction. Don’t know whether CAB could help either?
Good luck and hope that things work out okay for you.
Carol
Thanks for this Carol - can I ask with DLA - did you need the care provided or were you coping with family and friends etc. The website is massively confusing and it’s really daunting. I would probaly do better to call the BEL.
I am also trusting that you don’t have to die after six months!
Geraldine
Hi Geraldine
My care came from my husband at that time (doing all the cooking, cleaning etc). I know that Hospital At Home can be provided in some cases but we muddled through although I think my District Nurse might have suggested it if I hadn’t had support from within the home (plus friends as well). One of my friends decorated our son’s bedroom!
I’ve lived with this diagnosis for the last 3.5 years and am not planning of dying within the next 6 months - have still got so much I want to do and the main thing that keeps me going is my husband and son!
It might be an idea to ring the BEL as they could tell you about other things that might be an option for you as well.
I keep thinking that I need to shut my computer down and get on with some housework now but it’s so addictive!
Take care.
Carol
Thanks Carol - it’s addictive - but this whole thing can make you feel very lonely. Knowing people who have some idea of the fears you are facing is really helpful - even if it is only through cyber space!
Thanks again.
Geraldine
HI Geraldine
Definitely signing off in a minute!!!
I’ve only discovered this site (edited by moderator) over the last 3.5 years since my re-diagnosis and I agree with you that being able to ‘talk’ to others in a similar position is so helpful plus I think they are an excellent source of information. It can be very lonely at times and I find that when I talk to the ladies who have primaries they don’t understand that this is something that is ‘there’ all the time and won’t go away (and why should they as they’ve not experienced it and I never truly understood what it was like living with secondaries until it happened to me).
I have 4 other friends from our support group who also have secondaries and a couple of them post on this site.
Carol
Hi Geraldine
I have continued working since my secondary dx last June, as a speech and language therapist with preschool children (quite a physically demanding job). I have liver mets but am lucky that I have had no symptoms as such, so have “just” had the treatment side effects to cope with. Reduced my hours during chemo (18 sessions of Taxol and Avastin) which worked well for me. Went in for liver surgery in January (long story but it wasn’t successful) and then had about 7 weeks off and am now easing myself back into work. So it is definitely possible to continue working but it must depend on what you feel is best for you as an individual.
For me, continuing to work has been a major support for me - I love my job and find it very rewarding and it helps me to know that I am still “achieving” something and making a difference to the chldren and families I work with. But I am lucky in that I have such a great job and I still went through the process of reaching that definite decision to continue having weighed up the pros and cons. One of my concerns is whether I will recognise the point at which I should give up work -when I am no longer (despite the support of the people I work with) able to do the job as well as I want to. I really don’t want to work past that point. The teacher I work with has promised to tell me but I can’t help but think this will be incredibly difficult for her. Just hope I can recognise it myself.
You should try to give yourself plenty of time to think about whether you want to continue working or not and not rush that decision. And then of course you do need to consider the finances - is there someone at work who could go through what the options are for you in terms of what you would get if you took ill-health retirement?
Carol has given you good advice re the DLA - I too have found the BEL very helpful and my DLA came through a few weeks ago (didn’t apply for ages for several reasons!).
Carol and I were both at an interesting BCC discussion group about sec cancer and employment a few weeks ago - one of the things that came out of it very clearly for me was that there is no right or wrong answer and that everybody has to make their own decision - and ignore those who then seem to think it is their duty to tell you you are doing the wrong thing!
Good luck with your decision making! And sorry for the rambling post…
Kay xx
re claiming benefits
try breastcancercare.org.uk/docs/breast_cancer_and_benefits__jan_08_0.pdf
I think Jane tomlinson claimed under special rules and also worked as a radiographer - her husband Mike tomilinson describes the reason she decided to keep going, for most practical reasons.
but everyone is different
Mole
Hi Jo
No problems - forgot. Sorry!!
Pinkdove