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 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

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 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

Hi John,

Hope Mary is feeling better today ? Yes I am afraid you do have a lot of waiting around at the hospital. Sometimes it's for pharmacy to send medications up to the ward or waiting for bloods to come back it is sp draining as well for both of you as it makes you tired just sitting about.

I like your new picture, are you in to photography ? My partner is and has just bought another new one yesterday ...

Don't forget about drinking plenty of water, you can have the red wine. Actually I had a drink as the Dr said it won't do you any harm...

Keep us posted and love to Mary.

   Eileen. xx

Hi Eileen,

Yes, Mary is much much better today, we have been out shopping and she wore her new wig for the first time! She looks really good in it, it's like having a new wife! Great news, the town centre was full of Marie Curie volunteers selling daffodil pins, so we finally got one for her!

No I'm not really into photography, I stole the daffodil image from the Marie Curie website, it's about the best one I could find.

You never did explain about having to drink lots of water, we both enjoy a glass or two of wine! Is that bad for her, I don't know.

Just started on her third bottle of liquid iron, I'm convinced it helps her but it's all subjective I guess, certainly can't do any harm.

How are you feeling now? Hopefully a little less tired.

Best wishes,

John

Hi john and Mary, just to let you know l survived the cold cap!.wasnt as bad as i thought.

see you had ectic day at the hospital know what you mean weve just changed hospitals

so we had to leave a 7.30 for 9.am appointment because of the traffic nightmare!

but i did get called in soon as we arrived so not bad. i hate sitting around just wont to

get it over and done with.feeling some of the side affects today i think woke up with a red

blotchy face! and have been on the loo most of the day! lovely.glad you enjoyed your day out

shopping with your new wife!!.i got my wig on thursday ready for the big day! i was plesantly

surprised i quite like it![always had a fear of wigs!] anyway stay positive and take care.

best wishes sharon xx