Hi rach and all others going through this. I left work at nhs one week before initial diagnosis in 2004 as i had carer commitments for my son cashed in pension previously to fund extension on house as he had an accident as a passenger in car which left him with ABI also lost my Mum In accident so had a bit of a coping crisis. Was diagnosed in 2018 with secondaries after initially been told it was scar tissue. 5 months later got correct diagnosis. Am working part time and asked re ds1500 form but gp said that they have been told that is only if you are 6 months to live terminally ill apparently incurable cancer isnt enough!! I have applied for PIP yesterday on my own without form so watch this space. I am off work at present with flu type/ cough etc . have secondaries in chest pelvis and base of spine. So fed up with the "system" Feel free t o msg privately although I will have to work out how too . Love and Hugs Liz xxoo
Thank you Emma
Such a similar situation for sure, I completely agree with you on all points. My children are 14, 18 and 21 so a bit older than yours but still heartbreakingly I/we know we won't be here to see their future.
It's an impossible position to be in, but while this work situation is hanging over my head I can't move on and get on with accepting my new norm.
I would love to know how you get on also. I am happy to give you my details or keep in touch away from the forum if you would like if I or we can be of any help to each other.
Good luck also Rachel xx
Wow 11 yrs ago diagnosed with bone mets. I am sorry you are now faced with another area of mets to deal with and this made you give up work. I agree it must be good to have the time to now do what you want when you want. I just worry I could jump the ship of work to retirement too soon as your and other ladies mets in bones gave you many years before further changes. But we don't know do we if and when it will spread further.
I am aware of the disability act etc and work place, but in my job/contact you can't move to anywhere that doesn't involve palliative care. To be moved to a different nursing role I would have to hand my notice in, then put in for redeployment in the NHS Trust and try to find another job within 3 months more suitable. But that is just pot luck and timing and I could end up with nothing then I'm out of work.
I guess I just need to make my decision and stick with it then move on as best I can with the hand iv been dealt.
Thanks Nicky x
Wow I take my hat off to you working with your secondaries, you must be exhausted. Did you give up nursing following diagnosis? And did you take your NHS pension? This is my dilemma because if you take your NHS pension early finding another job (more appropriate) is not allowed. Plus finding an employer who is willing to give me a job and take time off every 3 weeks for intravenous treatments puts me in I assume the "less desirable employee" situation?!?
Hugs to you too Liz if I wanted to some how message you individually would you be okay with that, but completely understand if not. X
Very interesting to read in that you are in a very similar position. I would love to find some other aspect of nursing as spent many years and investment getting the role I am in. But yes you are right you will come across cancer in all areas of nursing. It is getting the role change that could prove tricky.
I have lots of questions that I would like to ask you but understand you may not want to, is there a way to talk to you about this further if you are amenable? Thank you for your advice. X
We certainly do, and I take my hat off to you working full time, is there anything left of you physically and emotially at the end off your working day?
I guess we are all dealt a hand we didn't want or expect and find our own way to move on, I'm just so frightened I make the wrong decision.
Take care Anne x
I know it's my decision unfortunately, I just read of so many people say they still work that for me not to and decide on early retirement makes me look a weak and pathetic.
But there is a big part of me that wants me to have my retirement now because I know the odds are against me to be here in the next 10yrs when I would have planned to retire. If I am it would be a bloody bonus!
Thank you and do take care. X
Thankyou I will look and join bone mets link as your right could be some helpful advice.
For me it's about the physical and mental aspect of work and what that takes out of you and obviously the need for money. I don't know what job you went back to but even on a phase return it does not change the role I would have to be in to work.
Thank you but very difficult. To be 10yrs on from same diagnosis as me from the start is very encouraging, but I also know this is not the norm and that's why I have my issues (my job gives me sometimes too much knowledge).
Best wishes to you and your retirement now, well done. X
As most ladies have said there’s no right or wrong answer but you are covered by the disabilities Act so your employer has to make allowances. I don’t know the Act in any detail but a MacMillan adviser or citizens advice should be able to help - or a nurses representative where you work? If you do have to reduce your hours you could also look into ESA (Employment Support Allowance) and as a patient on chemo (I’m sure H and P are classed as chemo as it’s the same regime as IV chemos) you should be awarded it. This helps supplement any drop in income and is not means tested and can be qualified for via previous contributions to NHI which is sounds like you have made.
It varies with everybody what they'd like or prefer to do. Initially with my bone mets diagnosis 11 years ago I continued working as my job and hours, at the time, allowed me to. Later once I had developed liver mets I had to give up my (new and totally different) job as the new treatment regime (and side effects) meant I couldn’t continue with it. Since giving up work several years ago I have adjusted to not working and manage to fill my time and, for me, enjoy the freedom of doing things when I want at whatever pace I want.
Yeah you need to get support from work don't be to hasty to leave they owe you to find hours and role to fit round what you can cope with. People living so much longer withsecondaries get pip ask gp for ds1500 form. I am ex nurse now work or 20 hrs in nursery setting but it's tiring too. My oncologist would give me ds1500 as apparently I'm not at 6 months to live stage but people on this site been given form from go and awarded pip for 2 years initially. I had initial BC in 2004 and secondaries in 2018. On palbociclib and letrizile and zometa for bones. Secondaries in lungs and pelvis and base of spine scan showing things stable. Sending u love and hugs liz
I was in the similar situation
I was a Chemotherapy/oncology nurse for many years, until going sick in Feb 2018 after diagnosis of ER+Breast Ca with bony mets.
No chemo or Radiotherapy so far, only Letrozole/Zometa/Ribociclib.
Recently returned in May 2019 but in Education and Development, and currently supporting the new Apprentice Nurse Associates.
For me, working it makes things feel normal, as I think about other things other than Cancer. Although I know that every so often there is something that comes along and reminds me of my own situation. There are quite a few of us who have had or are living with cancer and still nursing, although our roles have changed.
Good luck with whatever you choose to do.
This does sound tricky. I work full time but your work sounds much more emotionally demanding. I find the helplines good when I need to talk things through. Be kind to yourself and remember there are right and wrong answers. We just all need to find a way forward which works for us x
Hi Rach, I’m a secondary girl too, ( old woman really!) so know where you’re coming from. I think everyone experiences the full gamut of emotions with this diagnosis. However, I think in the last two sentences of your post you’ve answered your own question. Although you’ve asked for help, only you can make such a big, personal decision. I was already retired when I was diagnosed, so there were no financial restraints. I can say that I have had quite a two year hard journey to get to where I am now, which is, leading a very full and active life while living with lung mets. I enjoy every minute of every day, and because I’m not working I have the luxury of doing what I want when I want. I wish you good health, mental as well as physical, and hope that you can reach a decision which is right for you. X
Welcome to the forum a place no one wants to be .
It is 10 years now since I was diagnosed with breast cancer and bone mets at same time age 57 alot older than yourself. Every one is different regarding going back to work For me once I had had chemo and radiotherapy I wanted my normal life back Before the cancer I worked 37 hours a week. Did a gradual return to work over a few months then stopped when I got to 31 hours. I carried on till I was 63. Could have retired earlier but I liked going to work. I can understand you wanting to change the type of job you do.
Have a look on the bones mets please join in where you will find lots of people in the same position.
I was going to use the breast cancer care "someone like me email support" to ask this question but reading the criteria it explains volenteers can only support if you have primary cancer. So over to you guys as I'm sure it's a dilemma some of you have had to deal with and any words of advice are greatly appreciated.
I went off work on sick last October when I was diagnosed from the start with secondary and primary breast cancer to my bones. Had the usual stint of chemo and H + P, now on maintenance of H + P and Denosumab and Letrozole (ovaries removed).
My issue is I am either due to return back to work as sick pay ends or consider ill health retirement but at 47 it's not a great pension situation to be in.
I suffer with fatigue, loss of confidence, painful joints, treatment every 3 weeks, low mood, worries over the future with a husband and 3 children and of course always in the back of your mind it's how long will this current treatment keep my cancer under control.
My other complication is I am a full time NHS palliative care specialist nurse in the community, this is obviously too close to the bone for me hence a big reason why the time off work. I do not know what I could be offered if anything re reduced hours which i would deffinately need and a change in my role as I have to look after my mental and emotional health too. This is obviously a discussion to be had with my managers (which is to be arranged) but I guess my biggest question I have is do I just take ill health retirement and live the life I have for how ever long I have left or try to get some normality back to my life while being in a job that would be kind to me.
Million doller question I know but I'm struggling to make it on my own.