UK Skin Cancer and Melanoma Patients

[gilly]

We have got to the stage of deciding on whether to commit to trials and we have been looking at mortgage insurance documents etc. It is a nightmare trying to decide if one is "sick" enough to start the ball rolling with claims etc - my hubby cannot effectively do trials and work to his "way too" rigourous standards - due to travel times/expense etc - there seems no middle ground for us - either the melanoma-infected person must stop work for a time (get your mortgage paid by the insurance etc) and survive on one salary and take treatment "seriously" or you don't do treatments (bar routine 3 monthly checks) and carry on working as normal - has anyone found a middle way - or is it just a fact that you can't be ill and work while getting your mortgage paid ? How did others deal with this - is stage 3C not the moment to be thinking this - should we just carry on as normal hoping not to hit stage 4 ? All the Drs say its your choice for your lifestyle but obviously can't decide for us.... so difficult ! How have you dealt with this ? Is it the moment to take stock - do a meaningful life change - go on holiday - re-evaluate whats important in life - or carry on as normal hoping to have seen the last of it....

[Marsha]

Hi Gilly,

In my case, and I'm 3b, I had no choice but to go back to work. I'm not ill, so my GP isn't likely to sign me off work. I did however volunteer for a trial. I only got the observation arm, so I'm not absent from my desk as much as I perhaps would have been had I got the treatment arm. Even so, I consider that my health comes first, this is only a job, and I'm not indispensable, but I need to work to pay the mortgage.

I do sometimes find it hard to concentrate on the job, and I'm not always giving it 100%, but I've learned to cut myself some slack! There are bigger issues going on and it's not like the sky will fall in if I don't do my job as well as I used to.

Hope you and hubby find that middle ground.

Marsha x

[jen]

Hi Gilly, I understand your dilemma. I hit stage 3b at the end of August and after 3 months off work I'm now back at work full time. We don't have critical illness cover and our life insurance isnt enough to cover the mortgage, (Following my 1st diagnosis in 2007 we weren't able to get more cover when we moved house this summer), so being at work means I'd get a ' death in service' payout, which I know my family will need it we do reach that point. So for us, for me to quit work at this point would be like using up all my options too early. I am on a drug trial (Avastin) so I travel 60 miles each way to Leeds on two days every three weeks. My employer has staff sickness cover which covers this.
I'm happy to be at work at the moment, with a disease as unpredictable as melanoma, I feel I'm making a positive choice, I'm not ill at present and although I've had some problems with side effects I'm still able to do a good job whilst I'm there.
The days I travel to the hospital for the trial are a regular reminder that melanoma is serious and keeps the day to day issues of life firmly in perspective. I know some drugs have more compex side effects and I notice you're considering ipilimumab, When it was thought i might be elligible for that trial my consultant suggested I may be less able to work normally on that rather than on Avastin depending on the severity of side effects if i didn't get the placebo, so I guess that complicates the decision for you but I expect the doctors will have talked about that with you.
I think everyone will have their own response to your dilemma depending on their financial situation, the likely impact of the drug, their conditions of employment not to mention how much pleasure your husband gets from his job, ....I work with young children and so for me work is a good antidode if I'm feeling down with life ..........
I found by the time I'd read all the insurance policies, talked to the pension people and talked over all the above with my husband, i had a much clearer idea about what to do,
If I won the lottery it would be a different matter of course!
good luck with whatever you decide, I'm sure you'll make the right decision for you
jen

[gilly]

Hi Jen
thanks for that very well thought through decision-making process ! Ipilimumab is complicating the issue so we will probably not dothe trial for now - we will decide after our upcoming scan though - most of our mortgage is covered by insurance, although we had a small re-mortgage that they refused to insure because it was requested after the discovery of "the mole". It did shock us that they wouldn't do it as we foolishly assumed at the time that the wide excision was the end of it - obviously thats why insurers have knowlegable risk assessors ! My OH commutes to work in London, so is only home at weekends, and he does relish his job generally. So, though the prospect of any progression in his melanoma fills me with dread, we will continue "as normal " because for him, work is like yoga/meditation is for others. Thanks for your input it was helpful for us !