Hi all, I have read this thread with great interest as I am currently considering IHR and feeling very anxious about it. I am 48, and was dx with BC in 2004.
I work in the NHS (for past 28 yrs) and following my dx and treatment I have struggled with my returns to work, especially with my confidence. I am nowhere near as efficient as I should be (brain fog?) and I am really conscious of this, as well as my collegues! It has really been very stressful, especially dealing with side effects of arimidex (now finished) and also appear to have developed fibromyalgia and autoimmune disease too, causing fatigue. I have considered IHR on a few occassions but never thought I was "bad enough".
Unfortunately I developed LD in 2006 which has progressed from trunk to arm and hand (my dominent one). This caused probs at work with note writing and as a result I moved to desk one, but still probs with LD (and fatigue) continue, despite much better hours, all reasonable adjustments etc.
So I have finally set the ball rolling with applying for IHR, with the support of OH.
However, I feel really anxious about retirement- loss of identity, brain stimulation, motivation without job, too young at 48,etc.
I also feel very guilty, because I am very fortunate not to have secondaries at present (that I am aware of) and see that many women on here continue to carry on working.
Also, when I tell people what I am doing, I am continually met with comments such as "You don't want to retire, you're far too young" "there must be something you can do to stay at work". I feel like I should perhaps discontinue with my application and "put up and shut up".
I remember years and years ago always thinking how great it would be to retire, so why do I feel this way, and is it really OK being "on the other side?".
... View more
I have just read your post with great sadness. i understand what you are saying regarding the mention of depression, and sadly this is trotted out to me as well. Yes, I totally agree with you with regards to the stress at work combined with the discomfort -it's alot to tolerate and when these contributing factors are taken away, things are much better.
I can relate to you not wearing a sleeve at work - before I took this desk-bound job I was clinical too. I worked as an ENP and developed my truncal LD after a bout of cellulitis following recon.
Constant note-writing led to heaviness in my dominent affected arm and despite being given a sleeve to wear, this was not possible in the clinical workplace. Intolerance from managers and colleagues ( I became slower in completing my patient notes as had to keep stopping due to aching arm) as I was taking longer than they did gave me no choice but led me to change my work path. After 27 years of clinical practice I felt I had no option but to become non-clinical. the other concern I had was I was always concerned of the risk of sharps injuries to my affected hand.
I really think that OH should be looking after you alot better- you shouldn't be put in a stuation where you are at risk of exacerbating things , especially as you are unable to wear compression. Unfortunately i didn't challenge this, carried on working as you are doing, and consequently now have LD (mild) in my arm and hand as well as my trunk. I really wouldn't like to see yours deteriorate any further, especially as you are so young and have young children to look after. I turn into grumpy mum at home when mine flares up, so it certainly affects my home life.
How much longer do you have to do in order to complete your GP training? Is there any possibility that your rotation placements could be changed to acomodate your LD? Perhaps your LMC, in combination with OH could have some influence?
Take care Manny X
... View more
Hope you are all well and had a lovely christmas. Littlemrs - have you had any more support from your workplace?
Sorry, but I am feeling a bit down in the dumps at the moment mainly due to the attitude from my manager and work collegues.
The meeting with HR and my manager went ahead regarding IHR and I felt quite emotional about it all. Unfortunately, I got the feeling from HR and my manager that I was "exagerating" how bad things are , surely a bit of swelling isn't this bad, surely I should be able to manage on shorter hours, especially with my equipment. Fortunately OH were more supportive but as a result, I'm beginning to question whether I should just be getting on with it and simply put up with it.
Is it true that continuing to aggravate LD will cause it to worsen?
My latest LD follow-up was a few days ago and the tightness I have been getting in my right hand for the past few months now confirms LD to right hand too. My sleeve and glove are being changed to sleeve with mitten, so hopefully that will help.
It's really difficult when it's hard for people (i.e. my manager and work collegues) to understand the discomfort I experience with thi when it is aggravated.
... View more
Thanks for your comments. The arm measurment is a really good idea, but at the moment I am off sick so as not to exacerbate my LD any further.
I do remember having arm measurements taken in December 2011, and this showed that my right arm was bigger, especially around the foream (where I bend my arm and where I have discomfort with the sleeve on bent arm). These measurements were taken after I had been to work.
I then got remeasured 6 months later and this showed my measurements had come down a bit. These measurements were taken after I had been on annual leave for a week and away from work.
I am not sure that I can use these to support my application or not. I forgot to say in my previous post that I have already moved jobs (redeployed myself) in order to continue working, and in addition also have autoimmune disease which causes extreme fatigue and brain fog.
I have my meeting with my manager, OH and RCN representative tomorrow and I am terrified....
... View more
Hi frazzled fifty and littlemrs,
I went to see my union rep a few days ago regarding IHR and she feels that I may have a good case, but obviously there is no guarantee, and I am considered young so may be harder to get(I'm 48). I need to confirm that OH will be willing to support IHR application because if not, unlikely to succeed. I have tried to contact the OH Dr and can't speak to her until next week, the day after my meeting with HR and my manager!
I have had the following adjustments made which have not helped:
Work station assessment 2011 with recommended equipment installed (chair, touch pad mouse, arm support, footrest) Different working pattern (shorter days, days off midweek,reducing work hours, regular breaks) Compresssion sleeve/glove, compression bra garment Deep Oscilation (private type of MLD - NHS LD clinic MLD waiting list of over 1 year! Advice from LD Support Network SLD and other self management such as skincare, maintain healthy weight (or try to!) I am really unsure what more I am able to do - frazzledfifty, does this sound as though reasonable adjustments have been made?
... View more
Hi Frazzledfifty (great name),
Thanks for your advice. Yes, like you it is my dominent arm and side of trunk that is affected so it makes it very difficult to try and continue with something that causes so much aggravation.
This weekend, I also recieved a letter form HR to inform me that I am now at risk of redundancy too. I now have to make a decision on what to do:-
Leave and collect redundancy pay (2 year's pay)- Iwill then have the worry about getting another job as the same issues of computer and clinical work will arise, or also applly for IHR after I have left (this will be harder) Procced with IHR (and forfeit redundancy pay) and if unsuccessful, appeal. With regards to LD, I do not know what other treatments etc that I can do and feel that I have tried all options to remain at work.
I have got to phone OH and ask them whether they will support an application for IHR. My head feels like a washing machine at the moment ......
... View more
This weekend, I recieved a letter from HR to inform me that I am now at risk of redundancy too. I now have to make a decision on what to do:-
Leave and collect redundancy pay (2 year's pay)- Iwill then have the worry about getting another job as the same issues of computer and clinical work will arise, or also apply for IHR after I have left the NHS (this will be harder) Procced with IHR (and forfeit redundancy pay) and if unsuccessful, appeal. With regards to LD, I do not know what other treatments etc that I can do and feel that I have tried all options to remain at work.
I have got to phone OH and ask them whether they will support an application for IHR. My head feels like a washing machine at the moment ......xx
... View more
I'm afraid I'm back again....
I continue with my trunkal lymphodema and now right arm (dominent) LD, for which I where compression garment , sleeve and glove. Due to note writing (lots) in previous job my arm swelled, heavy, achy etc, so I changed jobs 31/2 years ago from clinical to non clinical nurse, now at a desk as I thought this would keep me working.
However, my arm does not like computer work and despite modifications, change of hrs, work pattern my LD flares up so my days off are spent in great discomfort (settles when on annual leave). I have also got a bit of a problem with wearing a sleeve and bent arm whilst typing, so am building up nice swelling to forearm. If I take sleeve off, I after work I feel I am going to burst, even though LD is fortunately still "mild". LD nurse says LD "doesn't like repetitive movements". My |trunkal LD is now extending across my chest to the sternum.
After much deliberation (and about 5,000 posts from me on this subject-sorry for yet another one ) I have finally made a decision to apply for ill health retirement (very scary).
I just can't help feeling very guilty about this and I am being made to feel I'm giving up too easily, even though I just don't know what else I can do. So, as a last roll of the dice, has anyone else dealt with this and did you find anything that helped you?
I know I am extreemely lucky in that my LD is mild - but I would really like to keep it that way. I did have a bout of cellulitis to trunkal LD a few months ago and since then the LD seems to flare up easier than it used to.
Any advise or tips for anyone who has had similar would be really welcome - then I will know I can't do anymore and carry on with my IHR application and will promise not to post anymore on this subject.
... View more
Many thanks fore your helpful comments.
JCJ - I'm glad to hear that your husband is adjusting well to his early retirement and yes, I was considering doing some sort of voluntary work. as you rightly say, if my LD kicks off, I can stop and not continue.
Happynipple - I have already had many changes and adaptions in my workplace - my manager has allowed me to change my working hours, days off, using annual leave when needed, new workstation equipment. Unfortunately the repetativeness of typing /mousework doesn't seem to agree with my LD.
I thought I was beginning to get my head round it all, but wobbling yet again and think I should just plough on back at work and go back. I don't feel that I have the right to be retiring when I am currently fortunate not to have secondaries.
I had to se GP last night to get sick cert - I mentioned that I had decided to go ahead with IHR and he simply said that when he gets a letter he will write a report based on the factual information in my notes. he then said that IHR isn't easy to get, especially now the pot of money is small. I think it is this comment that has wobbled me - does that mean I am unlikely to get it, so why bother trying? Oohh, scary! Positive vibes please!
... View more
Lovely to hear from you again, and thank you so much for the support you've given me.
Your post is very helpful, and I think the loss of identity as a senior nurse to no job is hitting hard - I'm racing ahead, as I don't even know if I will get it though, and that's another worry.
I also found out 3 days ago that in the restructuring, my job is going to finish in March 2013 with no renewal or matching into the new structure when the PCT goes, so I will have no job anyway (along with 2 others) and I will therefore be out of the NHS, and I cannot see how I can work elsewhere i.e. clinical.
You are right when you say we are just another number on the payroll , and that's clearly evident with our team being restructured.
When I'm not at work, my LD settles, and I feel that my fatigue (fibromyalgia and ?Sjogrens) is better too, as I am able to pace myself better at home. When I'm feeling better, I then start to feel guilty about staying off wortk, because I'm better, so go back, and then back to square one, and so the cycle continues!
... View more
Thank you so much for your reply- I am so sorry to hear about your recurrance and ? spread to lung and am sending sincere best wishes and hugs.
Like yourself, I am at risk as our team are being cut next year (just found out confirmation yesterday) and once that happens, I am out the NHS with minimal chance of getting something else and then little joy of taking IHR once out.
However, my problems are nothing compared to what you are having to deal with at present. Is this not something you may consider for yourself Sarah?
The NHS is changing enormously and the pressures on staff seem to be increasing at an alarming rate. Please think about your situation and putting yourself somewhere that will provide the best possible place for you as you recover from your upcoming treatments.
I am extremley fortunate in that currently, I don't have to cope with a reoccurrance or secondary diagnosis ( did have a scare last month for brain and spine secondaries, scans clear so far). Because of this, I feel really guilty and dramatic for considering it when this isn't an issue for me - I only have LD and fatigue to deal with and that's what's difficult for meto get my head round - am I really "bad" enough to retire? Like you, I have been a nurse for a long time (29 years) and have always had a very strong work ethic, so find it a real struggle to "give in".
Gosh, me and my collegues always used to joke about retirement, and " can't wait for the day we can hang up our stethescopes" - and now faced with it, it's not so easy!! XXX
... View more
I have posted several times about considering IHR and have had wonderful support from other forum members regarding this subject.
I had BC in 2004 (aged 39), few hiccups on way, now LD and fibromyalgia which is causing issues at work. Fatigue, plus exacerbation of trunkal and arm LD from computer work. Have tried many adjustments- shorter hrs, work station adaptions etc, but no bette, especially since I had cellulitis 6 months ago. I'm now 48.
I think that my manager is getting fed up with me having to take time off etc. I have been seen by OH several times over past 18 months who have suggested diuretics, and getting a different type of job, such as counselling. I have already changed jobs (was clinical nurse, developed discomfort/swelling in arm due to note writing and not able to wear sleeve/glove at work).
Well, I have finally contacted HR to discuss IHR and have just heard I have got a meeting with them and manager in 2 weeks time.
I now feel very scared about it all, and really emotional. I have been a nurse for 29 years, committed to my job, hardly ever had time off sick (used annual leave to cover instead of sick leave) and just feel awful. I really love the job I do now, work with some lovely people.
One minute I feel relieved ' especially when I am feeling really fatigued and LD bad, then when that feels better (usually when not working) i feel really guilty, start questioning whether I am doing the right thing, will I miss it too much etc....
I feel that I am giving up too easily,I will miss work, what on earth am I going to do with myself... but then worry about how I will cope if I stay on.
Has anyone else experienced this when facing IHR? XXXX
... View more
Hi Junior J,
I had a right sided Mx in 2004 at the age of 39 and I coped well with a prosthesis (was a 36B). At this point I felt that recon wasn't for me.
The following year I had a prophylactic left-sided MX, and bilateral recon with expanders at the same time (I had let people talk me into a recon by saying how "awful" it would be without 2 breasts.
It turned out to be a big mistake and due to problems I chose to have them removed and left deconstructed in Jan 2008, rather than further attempts at recon.
I am now 48 and have remained breast-free since then, and feel much happier than I was with recon. Most importantly, I don't have the worry of further surgery, as is often the case, with recon. I have managed to put that episode behind me, and get on with my life the best that I can. I have a few sets of different prostheses, including stick-on ones, go swimming, walking, do exercise DVDs and pretty much everything else without any problems. I do sometimes have a wobble and a gripe about necklines , as I can feel conscientious about lower necklines and what people can see, but disguise this with bold necklaces/scarves. Most of the time this is not an issue.
Other positives - no worry about droopy boobs as getting older, I can wear different types of prestheses depending on clothes etc, I can take them off at night and they look fabulous, equal and pert all the time in clothes!! Good luck XXXXX
... View more
Thank you so much for your reply.
I am so sorry to hear that after all you have had to deal with regarding your MS, and then to be struck by BC - I hope everything is going OK for you. Crumbs, you are so young to be dealing with all that.
Your post was really helpful, especially the advice with regards to the fatigue. This is what I find the hardest ( worse than LD) as you put it very sucinctly - you never know what you will feel like on a day to day basis.
I will definately focus on this - before reading your post I thought it wouldn't be counted as it's something thst they can't measure.
I now need to get my head round it all and just go for it...... and try and stop feeling guilty....
Thankfully I had brain scan today and the dr couldn't see anything obvious, but needs to be reported on. The radiolgrapher was very thorough - she did views without dye at first "because of my history" and then with a dye to exclude neurovascular anomolie. Fingers crossed. I know have bone scan on 5th Nov.
I am off to France for a week tomorrow (results mean I can go) so if you don't mind mandy, I will PM you when I return.
... View more
It's been a while since I last posted, but would be really grateful for some support/advice.
As you can see, I have been considering ill health retirement for some time now, but seem to be unable to bring myself to do it - I almost feel guilty!
Been nursing 28 yrs, had to come out of clinical work 3 years ago (was having problems with lymphodema - note writing causing arm to swell, and also fatigue with shifts) and noew do office based job (NHS) which is great. However, I have really struggled with LD (computer work) and can see a very clear pattern - as soon as away form work, LD settles down to tolerable levels, then worsens as I go back. Fatigue continues - diagnosed with fibroyalgia etc.
I took another week off last week as LD became unbearable. My job clearly exacerbates it.
Last week, when off, had phone call from BCN following MRI to spine (have had ongoing pain in back) - this has shown something suspicious so now waitning for bone scan. Also, in same week informed that due to reforms, my job is now at risk !
Feeling under alot of stress, I had an "episode" last week and the GP now thinks I have had a TIA! I am due to see TIA clinic tomorrow (after much chasing of appts) and will have MRI brain (terrified what will be found). I have now been off for 2 weeks.
I feel very vulnerable. My contract will end in March with nothing to go to, I'm not sure that I can continue in this job anyway due to LD and back pain (sitting at desk), firgtened about the whole thing of ill health retirement but also thinking this could be best route, but then worry if I don't get it, etc. etc. ... arrgghh
Would really appreciate some advice. I am also contacting RCN. XXXXX
... View more
Dear all, Sorry it's taken so long to reply, but have felt so "yuk" I have'nt been on the computer.
Really appreciate all your comments, thank you! Well, I did go and get the antibiotics and took them, because I felt so darn ill - really fluey, wnated to sleep all the time, felt more swollen - really horrible.
Within a few days of taking the antibiotics, I started to feel so much better, and the last 2 days, almost back to normal (whatever that is!!).
I didn't really develop any redness or heat, but did notice a sort of pinkish colouring to a small area. I am due to see the LD clinic tomorrow, and will let you know what they said.
Thank you once again XXX
... View more
I wonder if anyone can please offer some advice? I had truncal lymphodema dx 2006 (after recon became cellulitic) , then have now developed arm lymphodema a few years ago, and now have a bit of tightness in my hand .
5 days ago, I woke up not feeling too well 9fluey) and also had a sensation of heat deep within my back/under arm (area of truncal lymphodema). however, there was nothing visible and the area did not feel warm to touch. I went to work (prob shouldn't) and after 6 hrs on computer, my chest/trunk/arm felt they were going to burst.
Next day, much the same, so I spoke to LD nurse on the phone who thought it may be cellulitis, despite no redness or heat to the area, just this sensation of heat from deep inside. I then had to ring my GP and ask for antibiotics on LD nurses advice.
However, the next da (3 days ago)y i went to collect these , but noticed the area felt much better , so thought perhaps it is just a flare-up of LD and have't taken them.
However, today I feel awful (really fluey) but don't sem to have the heat feeling and still no visible signs.
Does this sound like cellulitis of LD, or do I just have a viral thing going on?? XX
... View more