Round2: What are my options,was hoping not to... - My Ovacome

My Ovacome

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Round2

15 Replies

What are my options,was hoping not to loose hair, silly I know but important to me, also having trouble with management at work, not listening have been to occupational health,letter from oncology consultant and still they send out the same rota ,where do I go from here am at the end of my tether ,causing unnecessary stress ,oh boy what a dilemma.Any advice please.

15 Replies
Flamingobeef18 profile image
Flamingobeef18

For what it is worth my hair related experience of three different chemo regimes has been lost it all with my first line of in total 10 cycles of Carboplatin and Taxol. Second line of just Carboplatin kept it all and third line of Caelyx kept it again. Also have successfully dyed it all through my third line.

As far as employers go I was very fortunate with mine but I think they were very much the exception. Not sure why they were so good. Whether it was the dramatic onset with one day driving back from a work conference up North and the next day admitted on deaths door! It certainly was not anything I did or did not do.

My only suggestions would be joining a Union if you are not a member already plus contacting the Disability Law Service who are brilliant for free legal employment advice. By the way we qualify as being disabled automatically.

All the very best

Love Juliax

in reply to Flamingobeef18

There is hope for my hair !!! Yay. Have a meeting with management on Monday, have been to OH and they have had a letter from oncologist and contacted Macmillan for support,just feel that they couldn’t care less but thank you for your helpful advice will look at contacting them xxx

Neona profile image
Neona

I wore the cold cap and kept about half of my hair- well worth it.

in reply to Neona

Thank you for replying, will consider cold cap xx

Yoshbosh profile image
Yoshbosh

If you have taxol again, you will probably lose your hair, but most of the other second line drugs only cause hair thinning at worst. Women don’t tend to lose their hair with caelyx or gemcitabine (nor with carboplatin). You may be offered one of those instead.

in reply to Yoshbosh

Hopefully will be offered one of the chemotherapy drugs that will let me keep my hair thank you, at least I can now go armed with some suggestions.xx

Lyndy profile image
Lyndy

Macmillan can help you with work issues and have a national helpline. You sound stressed and I know lots of things can get on top of you when you are dealing with all this. Try if you can to give yourself some time out- even a short meditation session or go for a walk. Others may not understand or be sympathetic but you can give yourself some tlc. xx

in reply to Lyndy

Thank you, will try ,I normally a strong person but with everything going on at work and the prospect of chemo in the coming months feeling a little flakey ,must pull my self together lol xxx

Andrea63 profile image
Andrea63

Regarding work - do you know what your paid sick leave entitlement is, if you don’t, check your contract/hr? If they are setting impossible rotas then you might need to consider paid sick leave.

You have protection under the equalities act which means your employer is required to make “reasonable adjustments”.

As someone else has suggested, now would be a good time to join a union so that you have access to advice on your rights. Julia’s mentioned the disability law service below which I didn’t know about but sounds like a good option too.

Best wishes, Andrea xxx

Thank you , I’m trying to not use my sick leave because will be starting chemo soon ,have been on surveillance since October 2017 cancer growing slowly but oncologist has said will be back on chemo soon as it’s getting to that stage ,have another appointment in June unless symptoms get worse , I feel like a ticking time bomb lol , am looking at signing up to a union on line today xx

Lindaura profile image
Lindaura

Hi,

Usually the first recurrence will give you Carbo and Caelyx, and you will not lose your hair, BUT it may be hard to function at work.

Talk to MacMillan’s benefits team.

They can help you apply for whatever you may be entitled to.

They were a real help to me.

Being BRCA1 positive will help you beat the cancer, even though it gave it to you in the first place.

It’s a long haul, but you can make it.

Hugs,

Laura

Maus123 profile image
Maus123

I'm sorry you have to deal with work related worries on top of a recurrence.

Maybe you can find a different contact at OH? I was lucky and my UK based employer's OH department made an effort to understand my story and adjust my work hours, so I could phase back in, after my initial big surgery. As Andrea and others said. you have the right to ask for reasonable adjustments at work (which could include a flexible schedule also during treatment, more home office days etc) due to your automatic disability status, based on the 2010 disability act.

If you need substantial changes to your work place or equipment as a result of your cancer or treatment e. g. special keyboard / mouse or an expensive speech-to-text software due to nerve damage in your hands, you can also consider applying for financial aid via the UK government's Access-to-Work scheme:

gov.uk/access-to-work/what-...

Hope it all works out for you in the end. Good luck with chemo. xx. Maus

Thank you ,OH have been supportive, it’s management trying to tweak report to get there own way but am taking positive action have today signed up to unison and if my meeting with them goes ahead on Monday I’m going to stand firm and then wait for the next hurdle ,should be fun, this puppy is not rolling over and having it’s belly tickled ,lol xx

ZenaJ profile image
ZenaJ

I can only advise to try the cold cap. This worked for me. My hair thinned slightly but I kept it and didn't look any different that I would usually. I lost every other hair on my body. It's definitely worth a try if you want to keep your hair. Good luck. xxx

Thank you, will definitely try if no other options available xx

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