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What can I expect after initial treatment?

7 REPLIES 7
broomsticklady
Member

Re: What can I expect after initial treatment?

Thanks Val - I was confused - easy done these days!
Sue - sorry it looks like you have to join us - you've already found the bone mets thread which is my 2nd home these days! As has been said, it's an individual thing. I was signed back on after my primary dx to work at home for other reasons as I had been doing pre diagnosis but my caring employer decided that I couldn't do that, and eventually after a lot of union intervention I was made redundant and I decided I was unlikely to work again so took my pensions early. In hindsight, this has been the best thing I ever did - but I didn't think so at the time. If I feel bad I don't have to get up, I don't have to get time off for hospital / blood appts and I have no stress. I used to think I thrived on it but now realsie I didn't and that being able to do things to please me as I can is better. I've suffered from cancer related fatigue I think since my primary dx - I had a bad time with septicemia during chemo which made the experience worse, the sepsis wasn't cured so I didn't recover properly, I then had August thru May arguing with employer, and then in the September got the 2ndry dx, so I've never really had a chance to pick myself up and now find a 10 / 12 hour day is my max. Realistically I couldn't work with that restriction - or if I did all I'd do was work and have no leisure. So for me giving up was right even tho I didn't think so at the time = just in case you have to, it's not necessarily bad.
Nina

scottishlass
Member

Re: What can I expect after initial treatment?

My post has now moved its space in the thread as I edited my age of retirement. Just in case in confuses other posters.

scottishlass
Member

Re: What can I expect after initial treatment?

Amysmum, I am sorry you have had to join us. I have been having similar treatment to you for almost 13 years. But I was working in the Bank when I got the diagnosis and had to lift heavy bags of coins, in fact I was doing that the last morning of working there. Unfortunately my mets were so spread and I had been in pain but thought it was the menopause or another illness unrealted to cancer. When extensive bone mets was diagnosed I went off sick but it became obvious that I could not return to work and ended up retiring early at age 49. I was on Incapacity benefit and then later went on to half pay, but was encouraged to apply for DLA.I did not know DLA existed back then. I was worried about having to pay bills, still had a mortgage and a loan to pay, then my OH went of sick too(another long story) so there were the 2 of us off sick.
Every one of us is different, as are our Cancers. Some need to go back to work, want to return to normality. Other like me realise that it just is not going to happen. I had no laptop back then so no site like this to gain information or support. I cannot help with advice about asking for a lighter weight computer but do you have Occupational Health Doctor at your place of employment? It may be worthwhile having a chat with them. Or phone the BCC helpline if you do not want to go down that route.
Also have you applied for a BLue Badge? You may find this helpful now. If I can be of any help please PM me anytime. I too am awaiting results from yesterdays MRI Scans so know just what waiting for results is like....just awful. Best wishes, Val

Tournesol
Member

Re: What can I expect after initial treatment?

Sue,

Sorry that you've had to join us. Angelfalls and Val have made some good points already, and I just wanted to add that (speaking from my own experience) the Bondronat and radiotherapy may well decrease your pain quite a lot, which may mean that you are OK to work if you want/need to. When I was first diagnosed,also with a spinal met, almost 3 years ago I could only envisage my pain getting worse but once I was on bisphosphonates it got a lot better and for now I am fine working (but mine is an office job with no heavy lifting).
All the best for your scan results and treatment.
Best wishes,
Tournesol
AmysMum
Member

Re: What can I expect after initial treatment?

Angelfalls, thank you for your advice. I guess I just just impatient to know what the future holds, but there is no crustal ball out there.
Val, I can understand that carry money bags would not improve bone mets - I worked in a bank one summer as a student and those things were heavy. I don't think that money is a big worry if I do have to stop work, as I took out a long-term sick insurance 12 years ago (when I bought a house), so I need to look that out and see what it covers, I know it gives me a reasonable income. But I am not sure it would be good for me to just stop work, although I guess I could start doing more voluntary things in my daughter's school. I am not sure whether my work has an occupational health dept - the company I work for was bought last summerr - but I will talk to HR, who are conveniently located in Holland.
I haven't really thought about a blue badge. I can walk pretty well, although manouvering into parking spaces can be challenging. So far I haven't struggled getting out of the car in a regular width space, so I would feel a bit of a fraud taking a disabled spot from someone who is really poorly. Last weekend (so before any treatments started) we were at centerparcs and I happily cycled about, walked around and even went in the swimming pool every day.

Angelfalls
Member

Re: What can I expect after initial treatment?

Hello Sue,

Sorry you've had to join us. Of course, we're all different, but I would say from my experience that it can be very difficult to plan long-term until you know what you're dealing with, how you're going to respond to treatment and how your cancer is going to respond to treatment. This can be one of the tricky things to get your head around when you're used to planning as a matter of course. You really have to take it one step at a time, for a while at least. Then, as your "new normal" gets more established, you'll hopefully be able to answer your own questions.

Good luck with the CT scan. Fingers and everything else crossed for good results. Keep us posted.

AmysMum
Member

Re: What can I expect after initial treatment?

just so it appears in the latest posts...

AmysMum
Member

What can I expect after initial treatment?

Hi Ladies
I am just wondering whether I am setting my expectations too high. I was dx just over a week ago with suspected bone mets in one vertebra (roughly at the bottom of my rib cage). The bone has definitely deteriorated in the last 12 months, so they are treating it as mets. I have a ct scan next Friday, but I am not sure whether this is to check for further (non-bone) mets or to establish for certain what is up with my bone.
Anyway, I am already having a bit (10 cycles) of radiotherrapy to my spine, am on Bondranat and Calcichew and have some morphine for the backache. Depending on the result of my bone scan (or blood test for hormone levels) I may be changing from Tamoxifen to Letrozole. And I have already had one Zoladex and am likely to go onto 3 monthly injections (again, to be decided after the scan/blood results come back).
Currently lifting more than a couple of kilo's (so that includes my laptop) hurts. So, when the radiotherapy has done it's thing (and assuming the CT scan comes back with NED everywhere else), what are my realistic expectations? I already realise that some of the drugs will be part of my everyday life, but would like to not need the morphine (especially as it advises against drinking alcohol). I part-worked all through my chemo and rads last year, but my job involves going out visiting customers, sometimes driving considerable distances and (of course) carrying the heavy laptop. If I can stop the morphine (and sleep well and comfortably), is it worth asking the company I work for to find me an ultra-light laptop and aim to continue working?
I don't feel ill enough to be signed off long-term sick, but am not sure whether I am being unrealistic. My onc isn't the best at communicating long-term plans, but I feel I need to get my head around what my medium-term future is likely to hold.
Sue