I'm sorry to hear that you've had some not-great news with your scan results...there are just no words to explain how awful it feels.
I had a similar experience - within the first 3 - 6 months of secondary diagnosis, I went from rapid progression of disease even on treatment from bones to liver, also ended up with an osteoporosis diagnosis and basically thought "this is it". A further 12 months later, I'm stable, the mets all shrunk to the point of not being visible on scans and the osteoporosis is under control. I've also read stories of other people who have had a terrible few months or years of not having successful treatment and then bam - suddenly they find a treatment that gives them the hoped for results of stability.
So even when its bad news there is always the chance things could change again with some better news, fingers crossed that you get some.
Oh Dan, I just wanted to say I’m sorry things have taken a bit of a downward turn at the moment. It’s tough adjusting to bad news and reassessing your priorities all over again.
That was all such fab advice from Gillyflower, I hope there was something there of help. I too was refused my life insurance when diagnosed with liver secondaries. What a joke! While others I knew got their mortgages paid off and a payout on top. Grrrr!
I carried on working part time for 11 years with secondaries. I was v fortunate to have great managers and to work in the NHS, which was very flexible. I took early retirement a couple of years ago, but I know you probably don’t have that luxury.
I’m so sorry you’re in this position - I’m guessing you’re self employed too? Definitely have a chat with Macmillan about your finances, I’m sure they’ll be able to help.
all the very best to you Dan, and enjoy those kids
thanks for the reply, some great nuggets in there. I’m doing a lot of what’s in there already but it is food for thought about maybe looking at something else.
I had my latest scan results last week and for the first time it wasn’t great news. Bone scan shows osteoporosis, CT scan shows I’ve a screw loose (no not in my head 😅) but in my spine and MRI shows cancer has possibly progressed. It’s a lot to process, especially not knowing what they want to do next yet. My wife especially is struggling with the not so great news.
2 weeks ago, everything was looking positive, now it’s all up the air a bit.
perhaps now I’ll make some better choices around work/life balance and how having extra time to be healthy and with my family is more important.
I wanted to reach out and empathise with your post, as I had very similar thoughts and frustrations after my secondary diagnosis. I cannot even imagine how doing a physical job like that takes its toll on you after everything else you're having to cope with. Sending massive hugs.
I learned a few things on my own journey back into work so thought I'd share in case its of any help to you.
Firstly, having cancer is classed as a disability under the Equality Act 2010. So legally, you officially have a disability and therefore your current or any future employer must treat you with fairness and cannot discriminate against you due to your health. Its worth reading up on this so that you know your rights and remind work of them (a lot of employers don't even know the Equality Act exists).
Secondly, you are entitled to claim Personal Independence Payments (PIP). This is a huge endeavour as the paperwork is awful but you can ask for help from MacMillan filling it out if you aren't so good with forms. There are tips and tricks to filling it out correctly to make sure that you don't get your claim rejected. You could also claim Employment and Support Allowance if you aren't able to work and the job centre could also support you with finding alternative work that might fit better with your health needs whilst you claim the allowance. Its a pittance in terms of what you get but you can claim it alongside PIP.
Thirdly, pension. If you have a pension (I was very naive about this and stupidly opted out of my company pension not long after my first diagnosis) you might be able to take ill-health retirement. If you are part of a pension scheme, it will possibly have an ill-health clause so its worth checking this. State pension isn't applicable (ie. you can't claim ill-health retirement to get your state pension sadly). Something to consider - if you are able to think about possibly finding a different job, go for one that is either with a local authority or within the NHS or one that comes with a good pension scheme. The pension schemes in public sector work are amazing and generally, if you have paid into it for around two years, you can actually claim for ill-health retirement after that two year period.
Finally, one last option - if you haven't already got a degree or a masters, you could consider higher education to learn a new skill / trade. You could apply for the student loan/s and see if you would be entitled to claim other grants or allowances if you have dependents while you study.
My own experience was that I was in a very stressful full time job when I got my secondary diagnosis and I knew that I couldn't go back to that once I'd more or less stabilised. I was very very lucky to have a caring and supportive team manager and senior manager, both of whom advised me to explore ill-health retirement. Then I was also advised by HR to talk to our Disability/Occupational Health Advisor to get some advice. They suggested I redeploy into a less stressful role so this is what I ended up doing and I thankfully landed a much calmer job that I could easily do from home. I was able to get back to having a full time job that I could manage alongside all the hospital appointments and medication cycles and its absolutely brilliant.
Its so hard to have to re-evaluate your life, your career and your income needs when you get a cancer diagnosis. However, I'm a big believer in keeping on doing things as much as possible, while I can, within the new limits I have to adjust to. I definitely prioritise health, home and family life now over work and I took up some part time courses/hobbies that will help me fill the time if I can't work in future. I took the whole experience as a chance to make big changes and be up front to the point of "cheeky" with asking for things from work.
Most people will want to help you in some way, so don't be afraid to ask for things that you know will help you. Being open and honest about what you can and can't do at work, or what kind of work-life balance you want, is the best starting point.
Hope you manage to find your way with it all xx
I'm 3 years into treatment on palbiciclib and letrosole which is keeping things stable have scans 3 to 4 monthly. I did work pt but retired in oct. Have secondaries in hips base of spine and lungs do get pain a9nd flair ups so it must be hard doing physical stuff. You should apply for pip as you can still work but have that extra support. I got mine after 3 to 4 month wait but its backdated from when you first apply you can do it all online.. I would appeal against insurance too that is shocking but they seem to be like that I was refused a claim when I had primary bc as apparently it wasn't a critical illness although I had surgery and a year of iv chemo and radiotherapy..Hope this helps Liz
I’ve got secondary on my spine and have had lots of surgery and now on Palbociclib, letrozol, zoladex. It’s been 18months since my secondary diagnosis and its been a rollercoaster ride to say the least.
I’ve started to work more (need the money after life insurance won’t pay as I’ve probably got more the 12 months left) and I’m doing more manual work (electrician) which I’m struggling with as it tires me out and wrecks my back.
how do we get back to our normally life, earning money for family etc but in the knowledge that our time on this earth could be quite limited. I really struggle for motivation sometimes...I think I’d rather be at home or playing with my kids etc.
how do you live a normal life after diagnosis?