You are here

New Member on Working

I was diagnosed back in the middle of May but have only just found this support group. Search engines are a wonderful thing but they do tend to point in the direction of the USA!

I have been looking back at previous postings but have not seen much about working and CML.

I have been signed off sick since just before diagnosis (found because of haemorrages in the eyes - ugh) and am hoping to go back to work fairly soon. Everyone keeps saying don't go back too early and even my haematologist has been advising caution.

Anyway I guess what I am trying to find out is how will I know if I am ready to go back to work. I work in an office but in a fairly stressful environment.

I would love to hear your thoughts and experiences

Hi
glad you found this site, it has been (and continues to be) a massive support to me since my diagnosis (Jan 05) I had a week off work following my diagnosis, however after a couple of months I took the option of reducing my hours slightly. This lasted around 6 months and I then chose to go full time again. My job can be stressful and I am always very busy but I prefer to be busy and have something to focus on. Every few months (was every few weeks to begin with) I develop severe fatigue and on a couple of occasions have taken a day or two off to try and get back to normal. This is a very difficult question to answer, there is obviously no right or wrong - it's very much dependant on what type of person you are, how your treatment (Glivec?) is making you feel, etc, etc.....If you feel ready to go back, then give it a try, I found that it helped me to adjust and gave me a sense that life could continue almost as normal. Good luck with whatever you decide.
Anna

Hi Anna

Wow I can't imagine how you managed only having one week off.

After 9 weeks (4 of them on Hydroxy and 7 on Glivec) I am finally in haematological remission although my HB is still only in the low 10's. Apart from severe bone pain which gets worse as the day goes on I don't appear to suffer much with the side effects that others have. Although I have to eat like a horse in order not to lose weight (I know there are millions of women out there wish they were me!)

My biggest problem is the fatigue (and I had that before I started treatment) I really want to get back to doing ordinary things and getting on with my life but keep finding I go one step forward and two back.

Regards

Helen

I had 2 days and one week off following dx - it was half term. I then started back as normal from approx 8:20am to 3:15pm - from which point I only had the house and kids to deal with. :)

I'm just about to embark on my teacher training which involves a full on year. Uni from 9 - 5 plus assignments and school placements. I do feel tired in the evening sometimes, but who doesn't. Less tired the more exercise I take. I also still get the odd bout of bone pain but nothing too severe.

Bascially I think it's each to his own and how the drugs side affects are hitting you.

Good luck

Marian

hi helen,i also suffer with fatigue,i managed to work for the first 3 years but went on the sick over the last 12mths,i want to do so much but dont have the energy to do so.
love kath

Hi - as has already been said, welcome to the club!

I work as a primary school teacher, and was diagnosed on the day the children returned to school last September. I finally went back to school in February. So I had 5 months off work. Physically I have felt pretty good right from dx onwards, and with no major side effects from glivec, but the mental side of coping with a cancer diagnosis caused me a lot of problems.

Schools can be fairly stressful environments, certainly there is not the facility to take it easy during the working day, especially when the children are little :-). I teach 6 year olds.

I think my consultant gave very sound advice on when to return. He said that I should only go back to work when I could be the person I was before I was diagnosed AND take account of the fact that I have CML. Of course that time will vary from person to person, and there is no-one who really knows whether you are ready except you. I know it sounds trite, but it worked, and I did know when to go back. I'm sure you will too.

For the record, now I am working full-time successfully, and happily, and having time off only for hospital appointments. Long may it stay that way!!

Take care, Janet

Thank you all for your comments.

I guess I am just being really impatient; I'm the sort of person who always pushes myself and never gives up but with this I am having to learn to back off a bit - and when I don't I pay the price.

They always say you are never to old to learn, guess their right.

Thanks again

Helen

Hi Kath

Do you know why you now have so little energy? Has anyone come up with any suggestions on how to increase it?

Sorry to be nosy but am thinking maybe I could try anything that had been suggested or tried by you.

Best Wishes

Helen

Hi Marian

Good luck with the teacher training, its good to know people are out there living normal lives and taking on tough committments with this disease.

What sort of exercise do you do, when and how often?

Best Wishes

Helen

Hi Janet

It's good to know that you are working successfully and happily in a stressful environment.

The company I work for have been very good so far but I worry about going back and then having to take further time off at short notice. I am in a hurry to get back and when I have good days I feel I could conquer the world, then I have a few bad days and I feel like such a whimp. So I guess I need to be sure I am having a lot more good days than bad before I head back into the world of the working masses.

Thanks for your advice

Helen

I think I had 1.5 days off, to be honest I felt reasonably ok before DX and couldn't really think of a reason to take extra time off. Although I was offerred by by GP, specialist and work to be put on full time sick I declined, I like others say just wanted to carry on as normal as possible (maybe denial)

I do work for a company that has great support (on site doctors, occupational health, counselling services etc) and they have been great in supporting my through this time.

Personally i have changed my work routine as a result, althought office based I have reduced to a bare minimum the work I take home and travel even less than I did before d/x, and I think I am even more efficient whilst at work as a result...

I have kept a log of all the time off I have needed for additional blood test and consultation and that is currently runing at about 12 days since december, again my employer is very supportive about that as well

rob - http://cmlblog.spaces.live.com

Hi Rob

How did you get diagnosed if you felt okay before hand?

I felt terrible for months before hand but kept putting it down to being overworked and stressed. Maybe that is why I am struggling now to get it under control.

Have you used the counselling services your company offers? I don't know if it is just me but sometimes I want to talk about the negative side of things but don't feel able to with family and friends as it would worry them too much.

Anyway thanks for your comments, its nice to know "normal" exists at the end of the tunnel!

Regards

Helen

Hi Helen
Try and be patient with yourself! This is a huge life change you are dealing with and it will take time to get your head round it all. Counselling will be on offer at the hospital, through your GP and/or at work. Plus there are various options available via organisations like Macmillan charity.

It can be a real strain trying to deal with all the emotional stuff alongside the physical, and talking to a person outside your usual family/friendship group is a great help.

As for the pain and side effects, do you drink loads of water every day? It helps with the pain levels, as does taking some very very gentle exercise.

The watch word for the moment is to be gentle with yourself, let the diagnosis take time to settle for you. It's a big thing to come to terms with, and you are doing really well so far.

On those want to 'conquer the world' days let yourself conquer some of the fear,frustration and feelings CML has brought up. On the bad days and allow yourself to feel whimpy and take a rest. !!!

I had to give up work completely, and now 61/2 years after DX I love my time. Life is different but oh such fun.

Healing thoughts
Pennie.

pennie

Hi helen if you would like to email me any time my address is kathy.prudence@homecall.co.uk
take care love kathy

I just read everyone's comments, and I agree its up to you. Everyone's body is different, and their reactions to medications also. I tryed to work. I also had a very stressful job. I left work when I started clinical trial. I still feel drained all the time. The Gleevec has caused anemia, and I have other problems also. You have to do what you feel you can do. I felt bad leaving my company after 13 years with them, but I was more concerned with dealing and getting rid of the CML.
Good Luck to All of You
Suzzie

Hi Pennie

Woke up this morning having a bit of a down day and then read your reply which I have to admit made me cry, first time since diagnosis in fact probably first time since I was a kid. I understand what you are saying but how do you suddenly change your whole personality from a fighter that copes with everything to whatever it is I am now. Anyway enough of this self pity.

Yes I do drink lots of water but always have - should I increase it more do you think?

I also exercise every day. I live in a village and have lovely countryside around so walk for at least 30 minutes a day (even if it does mean getting wet). I also belong to a health club and go swimming as often as I can - only very gently but it makes me feel better and they have a jacuzzi which works wonders on the bone pain.

Thanks for your support

Helen

Hi Suzzie

I am also anemic so my Dr. tried me on iron tablets but they played havoc with my digestion so now I am trying to deal with it through diet. I gather the anemia is part of the reason we get so tired.

I worry about not being able to go back to work properly as we have a large mortgage on our house and would probably have to move - life is stressful enough at the moment I don't want any more on my plate.

What clinical trial are you on, what does it involve, how do you sign up?

Best Wishes

Helen

Hi again Helen

Tears are OK, to be expected and they wash out some of the frustration!

Where are you in the country? Is there a Macmillan nurse attached to your hospital? They have people who can give you help, advice and guidance on your finance situation and cancer. Also I think that some mortgage companies can be very understanding in the face of a health crisis hitting. It might help to talk it through with the CAB or similar if you have one close.

One day at a time, is the way I manage. Every day a bonus and yesterday history!

Tiredness is a by product of Leukaemia, and we all get it to some extent. Rest is really the best way to deal with it at the start, you and your body are getting used to taking strange, strong medication - and need adjustment time.

Diet is something I am very careful about, and keep to a rather strict organic almost entirely veggie/fruit regime. I think it helps my immune system - but thats just one of my ways of dealing with CML !
Sending healing thoughts
pennie

Helen - i was a regular blood donor (they came to our offices every 4 months), and this time I was unable to give blood as the blood test indicated I had a proble "probably a bit of anemia" they said, nothing to worry about. So gave another sample for them to test, 5 days later my GP rang me up and said I had to seem him urgently...

my previous blood donation which i think was 6-8 months prio to this showed no problems...

my good fortune that it was spotted in this way :)

after DX when i was asked if I had any of the other symptoms, fatigue, night sweats etc I actually was moor poorly than I felt

as for counselling, not really I have spent a few 30 minute sessions with a 1:1 occupational therpaist and the doctor which has been OK, not sure if i did becuase i thought i ought to. I know my wife struggles more than me with the whole issue and she has tried a number of counsellors and we are looking for a better one.

rob - http://cmlblog.spaces.live.com

Hi Rob

Just goes to show the additional benefits of being a good citizen. I moved about 7 years ago and just never got around to signing up in the new area (more fool me). I was always just so busy and never had time for anything but the essentials - surprising how those essentials change with news like this.

When in remission can you go back to being a blood doner or does the Glivec count us out?

I think you are right about partners having a tough time of it. I know my husband gets really angry because he is used to being able to fix things and obviously he can't. He has been fantastic and I try to let him know how key he is in my life but I don't know that it helps. I just know he would swap places with me in a heartbeat if he could.

Regards

Helen

Hi Pennie

I am feeling a lot better now, whether the tears helped or not I don't know. I have just finished my house work and having achieved something despite the bad day appears to have lifted my mood.

I live in Bedfordshire and attend Bedford hospital, I don't know if there is a Macmillan nurse. My Dr has asked in the past if I am getting depressed and I said no which at the time I truly believed. Whether what I have now is depression or just a little general frustration at the snails pace that everything seems to be happening I don't know. I will talk to him on my next visit, I see him every two weeks (better than the 3 times a week I saw him in the beginning).

A little sunshine would be nice but as the weather doesn't appear to be co-operating I will have to make my own.

Thanks for your help

Helen

although I am not sure I do not think you can go back to giving blood, even after remission...

almost the worst thing was getting the rather short and tothe point letter from the blood service saying I was 'struck off the blood donor register', 5 days after dx. That was the point when I relaised that this was for real i think and I was quite emotional after getting it.

I have said it before but I really think giving blood saved my life, as I am the typical bloke who wouldn't go and see a doctor unless a body part had come off...

rob - http://cmlblog.spaces.live.com

Helen,

I am also a patient at Bedford Hospital & I assume you are being looked after by the excellent Dr. David Howes. I am next there at 10.00 on Tuesday 24.7.07. If you would like to bend my ear over a coffee in the Swannery, you are more than welcome. If not email phil.poole.poole@btinternet.com if you need any help.

Best Wishes,

Phil.

Rob,

Just read your comments and I find myself in exactly the same situation.

Was DX early last month (Aug 07) after attending a blood donor session. I gave blood on the Monday evening, Tuesday recieved a call from a Dr at the Blood Transfusion Service asking for my GP details as my blood sample was irregular and they needed another sample. An hour later my GP called me asked me to come in first thing in the morning and gave me the news. It was the day before the family holiday and I made my wife swear to keep it quiet from everyone until holiday was over, as I didn't want to spoil the childrens holidays.

I think this sent me into a bit of a denial, after the weeks holiday I returned to work for a few days. Then BAM through the letterbox was the thanks for all your donations, but no thanks to any more donations letter from the Blood Transfusion Service. Thats when it hit me and I realised that I had something serious.

Can I just say a big thanks to you all as reading your comments over the last few weeks has been a great help in trying to get my head sorted out.

Cheers

Derren

Derren - hope all is going well and the holiday went ok, are you on any treatmnent yet? where are you being treated?

rob - http://cmlblog.spaces.live.com

Hi Helen

You ask what exercise I do - well I try and get to a bodypump (weights) class once a week, although college hours may well put paid to that and I do lots of walking. My previous job was fairly energetic as a teaching assistant in junior school, so lots of running up and down stairs there. If I'm really busy I'll try and get a couple of sessions with a workout DVD at home.

I think drinking plenty of water is what keeps my energy levels up adn my fluid etention at bay. I have also found I've gone right off coffee, I drink green tea instead now.

ATB

Marian

Rob,

I am at James Cook University Hospital in Middlesbrough under Dr Millar and I have been having treatment for three weeks now and the blood levels are all starting to return to normal levels and it looks like it is entering a Hematological Remission.

All is fine just a few side effects from the Glivec. Just headaches, aches and pains and feeling tired but back at work and soldiering on.

Thanks

Derren