Hi Redlizzie

I to have ovarian cancer diagnosed in Jan 2009. I had 3 lots of chemo, operation, and another 3 lots of chemo.

The main problems I had with the chemo were gross taste in mouth and nothing tasted like it should, neuropathy of fingers and feet, these got worse with each chemo, but taste improved after about 6 weeks, fingers and feet improved but I still have neuropathy in my left foot (and right but only when I walk!). Hair loss - very slow to grow back and now have corkscrew curls! Tiredness but only realised how bad once I returned to work!

Most of the complications I had with chemo have been rare ones but then I only got diagnosed with ovarian cancer due to a rare autoimmune disease! I developed arterial bloods clots (aortic settling in left Femeral artery) just before my 4th dose, had daily blood thining injections but still developed another clot 5 days after the 6th dose! The onchologist/haematologist aren't sure if its cancer or chemo related and they don't seem to have personally come across it before so please don't worry about it!

I would be interested in hearing about plans for followup when you get that far.

Best of luck

Jackie

Jackie,

I am worried about you as I have not heard anything from you and the other Ladies..xxxx

Hi Eileen, and all you other lovely ladies out there hope your all well.

ive been to hospital today start my chemo next friday.just wondered

if you can give me any advice on cold cap as i can try one if i wont to.

heard a few stories so really dont know what to do.also met the hospital

hairdresser to discuss wigs!.now all i have to do pepare myself for all this!.

hugs and xxxxxx to you all sharon.

Hi Sharon,

Try not to worry about the hair thing, I know some really hate the fact that they are losing hair but it does grow back..

I have not heard of anyone who has had the cold cap but have read about it. As for the wigs then I personally couldn't wear it. It was hot and looked like a wig so I wear scarves which you can buy online and if you get different colours then you can match them with what your wearing..

Good luck with the chemo  keep your positive thoughts and if you need any advise then don't be afraid to ask the Doctors..x

  Lots of Love Eileen xxxxx

Hi Julie,

           I was never offered a cold cap, I just accepted that I would lose my hair. I had it cut short before I started my chemo in preperation for the fall out. I was fitted for a wig which was as near to my own colour and styles as he could have got. Some people get something completely different from their own hair, so if you fancy being a bit of a devil try a different colour or style try loads on before choosing.I told them all I was going to go blond and look like Diana Dors ( for the younger ones of you this might not mean much ha ha). Also as some of the other ladies said I bought lots of bandanas in different colours, to go with my clothes. When my hair started to fall out big time I got my hubby to give me what he called an american marine hair cut, which is straight over the top with the electric shears, right down to the wood. It was a bit of a shock at the time, I got a shock when I looked in the mirror, I couldn't decide who I looked most like, my dad or my son, but then again they both look alike.

After a while I didnt wear anything, as sometimes the wig got rather warm, that was once everyone got used to my condition. The hardest was telling my grandchildren, the youngest was just a baby, so I wore my wig if her mammy brought to our home. The next one was 7 years old, when I explain to him that I was having to take special medicine which would make my hair fall out, I said I will get some scarves,he look at my like only a child can and said, I dont think so grandma,I said well bandanas then, he said you will get a wig wont you, it amazing how resilient children are. He wait a few weeks until my air had fallen out, then bought me some bandanas on his holidays, when he gave them to me he said gran have you really got no hair? So I asked him if he wanted to see, he nodded so I took my bandana off, he just said wow you have even less than grandad. So its best to prepeare them before it falls out.

Everyone has to do what makes them happy, if you feel you want to give the cold cap a go, then go for it, you have nothing to lose have you, if it doesnt work at least you have tried. My hair grew back very dark and wavey, from auburn and straight as a poker. It s not as thick as it was but it is lovely just the same, when it first came back in it was oh so soft just like baby hair.

Well I wish you all the best with your decision on the hair front. Just keep telling yourself it only for a short time it WILL come back. xxx

Hi Sharon,

We were told that the cold cap can be quite painful and there is no guarantee that it will be effective, so Mary decided not to go for it based on this.

With regard to wigs, our hospital expected us to chose a wig from a catalogue, but we decided to go to a shop so she could try things on. And with the benifit of hindsight, you would be very lucky to choose a suitable wig by looking at photos. The hospital should give you a list of places that supply NHS wigs, private wigs, or both. Mary got an NHS one and it looks brilliant! She hasn't started wearing it yet, but her hair is getting thinner now so it won't be long.

Also, she opted for some lightweight beanie hats as opposed to scarves or bandanas, she prefers that look but of course it's down to what you like personally.

Best wishes,

John

Hi Sharon

The fist lot of chemo I wasn't offered the hat as the taxol/carbo combo would 'definately' cause the lot to fall out (which it did!) the second time I was treated with Doxitol/carbo, less hair loss so was offered it but as I had already been bald I descided I couldn't face a freezing cold cap on my head. I suggest you talk to the nurses when you go for chemo and ask how sucessful its likely to be (you can always say you don't want it on the day but they do need to know in advance if you do want it). Like the others I started off with a wig which i never worn and bandana's which i did but only cos it made others more comfortable. I never worn anything around the hourse and eventually started going out without anything as well, second time round I didn't bother with anything at all except for a woolly hat when it was cold or going round air conditioned shops!!!! I would advise waiting on sorting the wig if you can (or anything else fitted) as I found mine quite loose once the hair had gone, it was also comfortable when i tried it on with hair but definately not once the hair disappeared! Good luck with your chemo and just post any questions as they crop up, somebodys bound to have an answer. Be aware that chemo does very funny (not) things to your memory but like everything else it settles down in time.

Good luck

Jackie

xxx

Thanks to you all for the advice on the cold cap.think i might give it a go.

if its to painful or doesnt seem to do anything well at least ive tried it!.

gonna get my photo on here while i still have hair! dont think ill ever be

has brave as you Eilleen and Jackie not wearimg anything!! anyway will

keer you posted on the chemo [and the hair!] lots of love to one and all.

sharon [julygirl58] xxxxxx

@Jackie - Re wigs and headwear, what you're saying makes sense and I guess we're about to find all this out. If you've ever worn a party wig or a hat  for any length of time, you'll know that they get hot and uncomfortable, so I guess even a decent wig would feel much the same.

@Sharon - As Jackie suggested, it may be worth talking to your oncology nurse before making your decision, if you're having Taxol, the cold cap may not have any effect at all. You may want some professional reassurance before putting yourself through that.

Best wishes,

John

Hi John, thanks fo the advice i am going to be having taxol.and ive heard these cold caps

are very painfull so i will speak to the nurse before hand.thanks again good luck and best

wishes to you and your wife.sharon x

Sharon a few of the women used the cold cap when I was having chemo, they said they were cold and were given blankets but none said it was painful. I opted not to have it because it adds longer time on to the treatment.

Speaking to the nurse is a good idea.

Big hugs

Dot xxx

Hi Everyone,

Hope you are all well? Just wanted to wish Sharon good luck for the first chemo, I'm sure everything will be fine. All the side effects that I had in my first week have all gone and I've had 2 weeks of feeling great. I started at the gym today and am going to join a running club on Saturday!

My hair has started to fall out, just a little in the shower. Haven't had to shave my legs and underarms since Thurs though so I'm gonna take that as a plus that I will save on shaving stuff!! The hair loss is freaking me out, but I have scarves and zandanas on standby. I think my boyfriend is scared about it too. I do feel selfish that I haven't asked him how he might feel about it, but I just need everyone around me to stay positive and happy.

I have my next chemo Tues 8th.

Anyway, hope everyone is ok.

Love Sarah x

Hi Everyone,

Hope you are all well? Just wanted to wish Sharon good luck for the first chemo, I'm sure everything will be fine. All the side effects that I had in my first week have all gone and I've had 2 weeks of feeling great. I started at the gym today and am going to join a running club on Saturday!

My hair has started to fall out, just a little in the shower. Haven't had to shave my legs and underarms since Thurs though so I'm gonna take that as a plus that I will save on shaving stuff!! The hair loss is freaking me out, but I have scarves and zandanas on standby. I think my boyfriend is scared about it too. I do feel selfish that I haven't asked him how he might feel about it, but I just need everyone around me to stay positive and happy.

I have my next chemo Tues 8th.

Anyway, hope everyone is ok.

Love Sarah x

Good call Sarah!

It's an anxious time going for your first treatment, good luck Sarah, let us know how you get on, I'm sure you'll be fine.

A quick update from us. Like you Sarah, Mary is losing her hair now a little each day in the shower. It's not as dramatic as we thought it would be, but I can see when I come home from work that it's a little thinner each day. Apart from being tired in the evening, she is still feeling pretty good, so that helps. This is a difficult stage (especially for women) to deal with, guys can just shear their heads and nobody would give them a second glance! I'm a baldylocks anyway, but Mary won't let me try her wig on incase my big head stretches it!

She will be having her Hickman line procedure this week and starts her 3rd cycle of treatment on the same day. Hopefully it will go successfully, with 12 weekly treatments left it could get quite traumatic finding a vein if they cannot fit the line.

Best wishes to you all,

John

Thanks Sarah ive got my pre assesment at 9.am tomorrow then the chemo on friday.

im not so worried about the chemo ive been there before! but didnt loose my hair.

thats freaking me out! and my partner isnt taking to it very well.anyway good luck

with yours keep me posted.love and best wishes sharon.xxxxx

Hi everyone

I will be thinking of you all, if it is any help my hair grew through as it was falling out, my last chemo was December 3rd and my head is covered with hair again, even though it is short lol.

I have been having a few problems this week, I have felt light headed and have swollen hands feet and legs, my Doc has taken blood tests, first thoughts were blood pressure but it is normal.

I was supposed to have a 3 months break but it is only two and a half and my ctscan is tomorrow, just as well with how I am feeling. The following Tuesday I am back to the hospital for the outcome of ctscan.  My Doc is hoping I have the results back so I can take a print out with me.

Back on the magic roundabout lol.

Big hugs all, stay strong

Hi Dot & Ladies

That is funny about the lightheadedness as I have been like that for months now. I thought it was my blood pressure but it isn't.

I am just so tired all the time, I get up tired and go to bed tired...

Hope everyone ok .....Weather improving anyway which is good..

Eileen. xxxxxxxxx

Hi Dot and ladies, good luck wih ct scan hope its all good for you.ive been to my chemo

unit today they all seem very nice really explained things to me more then the other hosp.

showed me a cold cap looks more like a cycle helmet! but im happy to give it a go.

yeah the weathers starting to change dont know about you but i love the spring.dont

know if il be doing much in the garden this year maybe leave it to the othe half!.

anyway take care all love and best wishes sharon xxxxx

Hi Everyone,

John- I hope everything goes well with your wife & having the Hickman line, fingers crossed for her it all goes to plan this time.

Sharon- Hope the cold cap works for you, but if you have problems I've found a good company online that sell scarves, bandanas and zandanas. I know it's a personal choice, but I've gone for the zandanas I think they're fab! And not too expensive. It's called bandanaworld.

My hair is falling out more and more each day, and my partner is not taking it too well either. I don't know what to say to him because I'm scared he'll go off me.

Hope everyone else is well,

Sarah x

Hi Sarah & everyone,

I don't think he will go off you, what I did was say if you picture all the women you see bald then you can have a laugh as some don't have great shaped heads...Looking at all of us I think we look great and proud to be bald.. I love it when people look at me as I think well I stand out in a crowd.

As I said to John the partners do get left out and I feel sorry for them. I also found that talking to all of you on here is a great way to offload your moans and fears instaed of harping on about to them.

Love to all. Eileen xxxxxxxxxx

Hi everyone,

It seems we're all having some issues or anxieties at the moment, it's good to be able to share stuff on the forum and compare experiences. Although we may all be affected slightly differently, there are some common issues. I love the way that everyone is supportive to each other here, it helps being able to get things off of your chest knowing that everyone is listening and are sympathetic. Sometimes, a little bit of info from someone can make a big difference to someone else, so I hope you all keep posting.

@Sarah - Thank you for your comments, Mary has her Hickman line procedure tomorrow, and will commence her 3rd cycle immediatly afterwards using the line, if all goes well, I'm sure it will. Regarding hair loss, Mary's hair is getting to the stage now where people are starting to stare when we are out. I don't really know what to say to her. I kind of feel she should start covering her head now, but it could sound harsh and unsympathetic if I said that. It's a very difficult issue and I'm afraid of saying the wrong thing and upsetting her. Maybe your partner is struggling in this way, and you're possibly interpretating it all wrong. I'm sure he is not going off you.

@Sharon - Good luck with the cold cap, I hope it does the trick, do keep us up to date with that.

@Dot & Eileen - Hope you are feeling brighter soon, we were told that the tiredness is acumalative with each treatment, I guess other side effects can be too.

Best wishes,

John

Dear john

I hope the hickman line went ok.I dont know if mary already has this information but i went on one of the look good feel better afternoons www.lgfb.co.uk.It is free and you leave with a big bag of makeup.It is subsidised by the make up companies.You get a lesson in a small groupe about make up and false eyelashes and fake eyebrows ect.For me it was good not so much because of the make up ,althrough that was nice,it was seeing women with cancer out of the hospital context that was invauable.It made me at least a bit self consious about how i look as i realised that if i had not seen them in that context i would not have known that they were sick.

The other thing i throught i would say is i deal with the looks by just blanking them out.I am not brave enough to go bauld ,i  go for the head scarves and the hats for various reasons i have never got on with wigs.It was not untill my sister commented on getting looks that i gave it much throught but i realised that the people who noticed i looked different were probably the ones who had been affected themslves by cancer directly or indirectly.It is not unkindly ment.I find myself noticing people who i reckon are in the cancer gang in a way that would have passed me by before.

Hi Ladies,

We spent a very frustrating day at the hospital today, we were told to be there by 8am so had to negotiate the rush hour traffic, and felt bad about being 5 minutes late. Mary eventually had her procedure at 12.30!! I felt so frustrated and angry about the hospital being so disorganised, but how can you complain when all of the nurses are so lovely? It's not their fault, just the procedures that they have to work to. I'm sure this sounds familiar to many of you.

The good news is, the Hickman line went really well and not at all the ordeal that we imagined it would be. Mary is absolutely exhausted from the procedure pre-meds, followed by the chemo pre-meds, and of course the chemo itself. She is in a deep sleep on the sofa as I write. It's not ideal having a line hanging out of your chest, but it is going to make the remaining 11 weeks of treatment so much easier. We had a few tears tonight, but I think a lot of that was due to the amount of drugs she's had today.

@Grumpy - They have a "look good feel better" workshop at the drop in centre in the hospital grounds, and Mary put her name down for it a few weeks ago. There is a long waiting list as it is so popular, but she will eventually enjoy that. Worth mentioning though as some of the other ladies here may not know about it. Thanks for your take on dealing with hair loss, the next few days are going to be tough for her, so any advice may be helpful. By the way, did that lady (tenbob) give you any advice on my thread She had her own wigs business, but I haven't seen her for a while.

I just found out that it's the Marie Curie Daffodil day today, Mary would like one of the pin badges, now you'd think they'd have them at a specialist cancer hospital wouldn't you? I looked all over the site while she was snoozing, and nothing. I found out that our local florist is doing them, so will get one tomorrow. For now, I have changed my avatar!

Best wishes,

John