hello
I’m just wondering if any others here have an experience like mine; a couple of years ago I was dx’d with a recurrence of my original bc after 12 years. the original bc in 1997, when I was 38 was extensive DCIS with an area (about 10mm) of IDC - grade 1, and I had a lumpectomy, then mx followed by tamoxifen for 5 years. I was away from work for about 5 months because the ops were 8 weeks apart, and went back full time ( at that time phased return was wishful thinking!).
This time, 2009 when I was 50, the cancer was 18mm IDC - grade 3, with admixture of high grade DCIS. Both were highly hormonally sensitive. It was close to the breast wall in mx side and the lumpectomy wasn’t able to achieve clear margins, so I had booster rads, after chemo (FECx6). Last year I had a prophylactic oophorectomy and started on Letrozole.
I went back to work after 14 months last July on a phased return but have never got further than 3 days a week because I don’t sleep well and am always tired. This year I’ve had increasing headaches and feeling just exhausted, at least since January, and went down to 2 days, which I couldn’t manage as the headaches are now every day, from waking up. I have also had a lot of SEs from Letrozole which has recently been changed to Exemastane, and still get a lot of SEs - just typical problems with small joints in hands, and knees, shoulders etc. I went to see GP and have had brain scan (which was fine) but still have headaches, am increasingly spaced out with pins and needles in my fingers and am sleeping between 12 and 16 hours a day.
I’m going back to my GP this week and seeing OH next week, I just can’t see me being able to go back to work and am going to start talking about retirement.I’m an NHS Manager (was a nurse) and have a 35 year career between NHS and Local Authorities - always public services - with a couple of 2/3 year breaks for babies and Uni. I’m 52. I feel a bit pathetic about giving up this early but I am so worn out that I can’t see any other option. My job is extremely stressful, very busy and I was feeling, before I went sick this time, that I am just not up to it any more. My manager is very supportive and will be gutted about me wanting to retire, but the nature of the job means that she can’t remove the stress of my role. But the thing is, I have tried really hard, and think its time to accept that I’m not like I was before I was dx’d in 2009, and I just can’t do it any more.
This has turned into a novel and I’m sorry its been such a long read, I’m just wondering if there’s anyone out there who’s been in a similar position, and what conclusion they came to?
sorry to rabbit on so long
monica xx
((((monica)))) How would you as a manager respond to a junior who presented you with this scenario? Now go and be as kind to yourself.
Now where did I put that bucket list?
Monica
Sorry to hear you are struggling with this retirement issue - I’ve felt the same having had a very responsible job with lots of stress thast seem to go with it (Ofsted to name but one…) and “knew” that I needed to retire - got very upset everytime I thought about leaving the work I was passionate about and work colleagues that were “my team” but have now just finish the early retirement process and have to say I feel completely relieved and happy with decision now. I did have counselling from my employer to help me with my dx and implications and that’s helped enormously with this journey. Life has a differnt perspective for me now - I have time to grow and prepare the healthy foods I know are helping my health and time for family and wider community. Will still keep in touch with close work colleagues and that good as we do have a common interest.
Hope this helps you to see that decisions can take time - it’s taken me nearly a year to adjust and submit early retirement form.
Thinking of you - and take care of yourself
Fran
x
PS Monica, that is a great photo, is that you practising in the mirror for the day when you tell your boss…?? LOL!
Monica, I was diagnosed in July 07 with primary and bone mets. Was off work for just over a year in total, tried to go back on a phased basis but knew it was wrong as soon as I tried. Last 4 weeks of doing 2 half days a week and went off sick again with full support of onc and surgeon. Never went back !!! I realised the side effects of all the treatments I’d had, plus those I would need in the future, had taken too much out of me. I took the decision to apply for ill health retirement after discussing with onc and surgeon, got help from the union and after a lot of too-ing and fro-ing and a very stressful 4 months, the company’s pension fund doctor pensioned me off in full. It was unheard of apparently for someone of my age (42 at the time)to be given full retirement as I would normally have worked to 62 under the scheme.
It took me a long time, probably about a year, to adjust to my new life but now I really wouldn’t swop it for anything. I was fortunate in that my financial situation was ok and I have been comparatively well during all this time. It has given me time I otherwise wouldn’t have had with my OH who is a lot older than me and my parents and allowed me trips to my sister’s in London and do lots of lunches with friends old and new. I’m making the most of it and aim to pack lots in before I need my next lot of treatment whenever that may be.
Good luck and sorry this seems to have been all ‘I’ and ‘me’
Liz
thanks so much to all of you, it really has helped me to read your responses. I am seeing GP on Friday, Occ Health next week, and will start to talk about it. So many loyalties to Directors, colleagues, the work itself, which has been a passion for so many years etc, hard to put yourself first, isn’t it?
Hymil, pic was Christmas 09 mid chemo, photographer was 6 year old neice - just sick of sensible photo!
thanks again everyone
xxx
I am just going through the process now. I am a teacher and loved my job. I tried going back but it was too much for me. Just waiting to hear what my package could be
x sarah
Monica - one of the things I learnt from it all is that at the end of the day, your only loyalty is to yourself and enjoying what YOU want to do (and not doing something if you don’t want to) !! It’s odd but once I got that sorted, I felt so much at ease with the whole thing.
Liz
Dont struggle any more, and this idea that you are giving up is nonsense, stop beating yourself up, retire and enjoy your life.
I’m 51 and have been a nurse since 1984. Dx 2009 with bi lat BC, mets to liver and bones. Tried very hard on two occassions to go back to work and kept on trying until something happened one day and I knew I couldnt go on. That decision to pack it in had to be mine though, my friends and family had been trying for ages for me to pack it in. I applied for ill health retirement and got it without any problems.
On same meds as you with same S/E’s (although they have got a bit easier after 8 months).
We aren’t the same people we once were and that can be difficult to accept, but if you can get your head round that, and the fact that the NHS will manage without you, you’ll accept retirement much more easily.
I’ve been retired now since Feb and its the best thing I ever did, the stress of the NHS seems a lifetime away. I can do what I like when I like and if I feel tired etc in a morning I just stay in bed.
You sound like you just need a push,and are just scared to make this huge decision, but once you’ve made the decision to leave, it will be like a huge weight lifted. Just go on and do it, and enjoy your life, none of us know how long we have and you dont get any thanks for struggling into work. There is no proof, but I am a great believer that chronic stress from my job was contributory to my BC, so staying in the same job wasnt doing me any favors.
I wish you well, and hope you come to a conclusion very soon. xxxxx
I’ve come to a conclusion, I think we should all do something fun like maybe meet at Wimbledon for a strawberry tea. OR at least share a virtual chocolate log and celebrate each time a BC sister makes it through the jungle of official forms and bureaucrats to get her financial freedom to enjoy whatever time she has left without being nose-down on the treadmill.
Sarah cromercrab, good luck with it. Francesw, congratulations the first virtual leaving-party is in your honour!
edited
Hi Ninja,
Mine was a private sector one, although a very large company. According to HR and the union, they had never known anyone of my age getting full retirement, partial yes but not full. Really sorry you are having such a lack of compassion and general concern from your employers. Hope they never have to be in the same position…
If I can be of any help, feel free to contact me anytime.
Liz
Hi all,
I have read this thread with interest, and in the past have posted on some other threads about wanting to apply for ill health retirement, but still have not had the guts to do anything about it for fear of being turned down.
I am a nurse aged 47 and have worked in the NHS for 27 years. I was dx 2004 - rx, AIs, bilateral mx, oopherectomy. Like you Ninja, my manager at the time was dreadful - I can’t tell you how bad, because I will start crying again- really traumatic!!
I have suffered with awful fatigue over many years and now dx with an autoimmune disease (Sjorgens syndrome)and fibromyalgia. Due to that and my appalling manager, I left clinical practice (also struggled to do shifts)as advised by OH and got office based job in different area of NHS, to do with cancer screening.
Continue to struggle- have brain fog, Painful muscles/joints, lymphodema, fatigue (despite having fab hours)and now osteoporosis caused by AIs.
I have dearly wanted to go out on ill health retirement but am scared of starting the process and being turned down - I don’t presently have a secondary diagnosis. Like you Jane, I strongly believe that the chronic stress from my job was a contributing factor to my BC and worry that the ongoing stress and fatigue of struggling to carry on is not helping me in the slightest.
Any advice greatly welcomed and very best wishes to you all XXXXX
edited
Ninja, don’t give HR a deadline, but just a date by which you need answers to some simple questions. If they say they need more time to make a decision that’s reasonable, you can athen sk how much time and keep up the momentum. Let them know it’s causing unnecessary stress which isn’t helping your recovery. If they are implicated in exacerbating your condition they can get into pretty serious trouble. Yuo have the upper hand, it just feels a though they do because you’re ill. Don’t make threats, just ask for answers to reasonable questions. Keep in all in writing and start a file.
Hello everyone
Happyshopper and Ninja, I am so sorry its been so hard on you, you’ve been treated so badly. I know what you mean about fear of starting the process and being turned down, that is exactly how I have been feeling. I had a long talk with my GP yesterday and told him how I am feeling and I was quite shocked at what came out during the conversation, that I think this problem with my head is stress because I just can’t do it all anymore - I have always loved my job, been passionate and happily done long hours, worked at home etc, and now I can’t manage even part time. I am scared of going back and not being able to do it and I’m also frightened that I will be judged fit to work (and therefore - in my head- malingering. Although he is doing blood tests he thinks my position is reasonable given whats happening, and was prepared to give me a sicknote with no end date but I asked for 6 weeks because what I do want to do is talk things through properly with my manager, who is a supportive one. Can you talk to your GP? I was amazed at the response of mine to my spouting off.
I would love to hear how you all get on xxx
Hello
got my arse into gear today and rang up the pensions people (I have bits parked in 2 Local Govt as well as NHS) and they were all so helpful - quite lovely. I am getting up to date estimates of benefits for early retirement through ill-health. To be honest, I can’t continue, whether I get a pension or not so will have to sort something out. Have also written to my lm and told her very clearly how things are and why I can’t work at present - just wanted to clarify in writing. I’m seeing the occ health doctor on Weds - be interesting to see what happens there
hope you are all well
mon
Hope things went well with occy health today Monica. Sometimes I wonder why we beat ourselves up so much about working, everyone I know who has quit looks ten years younger and says they wished they did it years ago! It will come to us all anyway (despite the best efforts of the government that they’ll “never-never” have to pay it back) that’s if we live long enough… I’m more than happy to try and meet it halfway!
I was dx June 2007 - surgery, 6 months chemo & 15 rads. I went back to work straight after chemo but before rads. Somehow I just couldn’t get my head around the work anymore and it seemed so unecessary. I was also knocked out by the rads and very tired. I stuck it 8 months and then decided to take early retirement (age 50). I have never looked back!
I don’t have a full pension but then again I don’t spend as much. I am never bored and haven’t been since day of retirement. Bc changed my outlook on so many things and I love being able to make the most of every one of them.
Hi Ninja - sorry to hear you are in hospital. I hope your treatment is going ok now they know where to look! Haven’t been to the Haven for my appointments as I’ve had shingles in my head and eye (not nice)!
Jo
Hi Jo <waves></waves>
So sorry to hear about your shingles. I have had to miss a couple of Haven days due to being too poorly to go. I’m in week 3 of cycle now so feel myself again, albeit temporarily. Shingly eyes? <shudder>.<br>
Take care.</shudder>