So what is it like living with secondary cancer?

Dear all

Can I draw on the advice and experience of those of you who have been living with this longer than I have. I am 55 and was diagnosed with secondaries to the lungs and liver 6 months ago. The chemo went reasonably well and I’m now on Arimidex - waiting to see what happens.
My dilemma is that before my diagnosis I had resolved to divorce my husband of 34 years in final frustration at his lies and cheating. 10 years of lies and cheating. My frst reaction was that the diagnosis meant I would have to stay with him simply because I would need a carer (he doesn’t want a divorce (I am the main breadwinner and he would be a lot worse off financially on his own) but I am increasingly wondering if this is the case. I hate feeling that I am trapped in this marriage by cancer.
At the moment I am well and back at work with no symptoms of cancer at all - but I would be very grateful to hear from those out there of how the years after diagnosis have gone. I appreciate that this is different for everyone but the experiences of those of you who have travelled further down this road than I have would be really useful to me.

many thanks

Manon

Hi Manon,

What a difficult dilemma and as you say, cancers and responses to treatment are so variable, it is difficult to predict what the outcome will be.

I am 56 and was diagnosed with secondary cancer 5 years ago. Following chemo, I have been on Femara, a similar aromatase inhibitor for 5 years. I have managed to remain reasonably well apart from tiredness and usual aches and pains. I find that I feel shattered after any sort of strenuous activity and my husband does the heavier household tasks (after much prompting). I took medical retirement in 2004, mainly because I had a difficult and stressful job and was just so tired all the time. However I know there are a number of ladies with secondary cancer, who post on this site, who are still working.

I have found that with my secondary diagnosis, I have become much more intolerant. I think I’m a very different wife than I was before when I probably spent my time humouring my husband and putting my needs second. This is no longer the case and I have become much more bolshoi. I am also very sensitive to any sort of implied criticism and tend to react strongly to anything I see as upsetting me. Don’t know if this is a reaction other people with secondaries have too.

Do you have other people to support you locally besides your husband? Although District nurses and Social Services provide some help when people become very ill, I don’t think they provide 24 hour care.

Good luck with your decision.

Wendy x

Oh goodness, Manon, I can’t think of any good words to say how sympathetic I am. I’m not sure how much use anything I can say is really…but for what its worth, I would say that you could dispense with his services if you choose, but only if you put a lot of planning into it whilst you are still well enough.

I was first diagnosed metastatic 5 years ago. At that point, I could have lived independently, although it would have been quite hard whilst I was doing ECX (a very aggressive combination chemo which I don’t think BC patients normally get). Now, not so much. I am widely metastatic and have had a lot of chemo, so I am quite feeble; can walk OK, but not very far, but probably more importantly I find it hard work taking decisions and organising small stuff (like, say, geting someone to fix the broadband). Nothing to do with brain mets (which I don’t have, AFAIK); it’s just that thinking is tiring and thinking with some specific output even more so. It is kind of disconcerting, not to say annoying, because I used to be a senior manager in the City and and a very decisive person. We are currently in the middle of moving house, and my husband is doing pretty much everything, both physical and mental. I did order a new table online yesterday, but when the one we wanted was out of stock, I had to ring him to discuss whether to take alternative A or B, because I was having a tired spell and making the decision myself was just Too Much. It’s not that I can’t ever think properly, it’s just that I can’t reliably think at the point when I need to because of external circumstances.

So if I had to live alone, what would I be looking for so that I could cope alone? Small flat (small because not much cleaning, flat because less outside maintenance needing to be looked after), somewhere that one of the supermarkets will deliver, as close as possible to “my” hospital (like, short taxi ride not complicated cross-London public transport), ideally near supportive friends or family. Also, if I were rich enough, I would bearing in mind whether I could identify someone who I could pay on an occasional basis to come in and do stuff for me; not nursing, but things like 'move all these books from here to here" or “set up my new router”. A reliable teenager, maybe.

I think I probably could live alone if I had my life set up like this. I guess the other thing you need to think about is whether your husband would, in fact, be a good carer anyhow. I would, myself, rather live alone than with someone who was a grudging carer in any way.

Sorry, I seem to have gone on a bit. Some of this is the fruits of me having thought it through for myself, against the eventuality that my own husband were taken out by a traffic accident or a sudden heart attack, becasue I am now so dependent on him.

I would say, contact me privately if you like, but I can’t now give you my email address becasue of the forum rules. If you frequent (post edited by the moderator), I could do so there, however.

potentilla

Hello Manon, I’m sorry you have to join us but it’s good to hear you are feeling well.
I was diagnosed stage 4 in 2003. My mets are to the bone and thanks to good hormonal responses I’m yet to have chemo so my life has, so far, been pretty normal.
Hope Arimidex works well for you, it worked brilliantly for me for over 2 and a half years.
I hope you can continue the plans you’d started to make before your further diagnosis. Good Luck.

Hi Manon

I was diagnosed with mets of spine and liver in 2003 and gave up work really because of my spine as I found it too difficult to continue working, also my job was also very stressful and I got to thinking that I really didn’t need that aggro.

The only thing I can say to you about you and your husband is go with what is true for you in your heart - no one else can make that decision for you, only you.

Pinkdove

Hi manon
i have had lung mets for just over a year and am currently on Vinorelbine. Unfortunatelt Arimidex didn’t seem to hold it off and by September my tumour markers were creeping up so back on chemo. Having said which it is managable and I am still working, doing a stressful job, Family Solicitor!! I,m also still juggling teenagers and going to the gym, I was running but the chemo has really knocked my energy levels more than expected but I do manage to walk!
With my solicitor hat on can I suggest that you get some advice, many firms do an initial free consultation, it will be in confidence and with no pressure to proceed. Do see someone who specialises, google Resolution, they used to be the Solicitors family Law Association, it’s www.resolution.org.uk. Just not sure if we can post websites.
anyway , wishing you well whatever you decide
Kathryn

Hi Manon,
Sorry to hear about your diagnosis and the dilemma you find yourself in. I was diagnosed with bc in June then found I had liver mets a few weeks later. I have been quite poorly for a few weeks but now nearly back to normal regarding activities. My OH is away during the week working so feel “single” most of the time! I have a cleaner who comes every two weeks so that helps and I work full-time as I run my own business. I agree with everyone that it you need to go with your heart, but time is precious don’t waste it being unhappy.
Good luck with your decision
Allie

Many thanks to all of you who have added your advice and experience. I 'm fortunate in having a well paid job (at present anyway) and good financial support from work in the case of having to give up work. Since we currently live in the depths of the country my immediate plan is to move into town ( a small town, very manageable size) where I will be in easy reach of friends, shops etc and concentrate on getting my networks set up. Then we shall see. Potentilla - your point is very valid about whether my husband would be a good carer. I fear not! He claims to want to take care of me but has spent the last 6 months complaining about having his summer ruined because we didn’t go on holiday together. How long would the Mr Nice Guy act last once life became difficult?
Ah well there are good things too - lots of friends, three lovely kids and a job I enjoy with colleagues I get on with.

Manon, have you been in touch with macmillan? I have a macmillan nurse come in to see me every two weeks (I was diagnosed with bone mets in October) and whilst I don;t feel I ‘need’ a lot of what they offer at the moment I am overwhelmed by the support that they can offer and provide. they have a number of volunteers that can help out with loads of stuff, taking you to hospital, to shops etc. These are things that could help out if you moved away from your husband.

I was referred thorugh my GP.

I hope that helps a bit.

Angie xx

Hi Manon,
Just wanted to say I sympathise with your dilemma - really tricky.
It’s really good that you can look ahead and face the possible practical issues - pat yourself on the back for that.
I have secondaries too (liver) and thought Potentilla’s practical suggestions were very well thought out, so thanks.
I can’t help agreeing with Allie that time is precious, and you may have years of reasonable health ahead of you - what a shame if you stayed and then regretted it in a several years time - and how it could sour your relationship - feeling you’re only there because you’re trapped in it. You’d be doubly bitter towards both your husband and your cancer. On the other hand, thay say well over 50 per cent of people regret getting separated/divorced and wish they’d worked harder at it. And you have kids. Could you find some way of working at the relationship?
I wish you confidence and support in making your decision
hugs
Jacquie