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 All,

Stressful day today, my wife finally plucked up courage to have a PICC line fitted, and today was the day!

Unfortunately they spent over an hour trying to fit it without success, because her veins are so small.

They're now putting her forward for a Hickman line next week, which sounds awful! any experience of these?

So now she is very sore and not looking forward to having a tube hanging out of her chest, but if it's for the best.....

Best wishes,

John

Hi John

I had a Hickman Line and it wasn't too bad having it fitted.  A lovely staff nurse held my hand all the time and with the help of local anaesthetic, you don't feel anything but some tugging and pushing.  It was the best thing to happen to me.  No more needles or hunting for veins!!  All blood test, transfusions and chemo (and medication as I couldn't swallow) went via my Hickman.  I was loth to part with it.  The tube site has to be dressed regularly (which I dreaded but it was painless)  and the tube has to be flushed through fairly often.  This is also a painless procedure which you can either do yourself or a nurse will do it for you.  Occasionally the tube entry site can become a bit sore apparently.  Luckily, although my Hickman was in place for many months, I didn't have any problems at all.

Do reassure your wife she'll be fine and the staff will see the whole thing is carried out as gently as possible.  Prodding about for veins is a horrible experience and only adds to all the trauma this hateful illness brings.

I am quite new to this site but having suffered a serious cancer myself and also nursed my father with the same condition, know what it's like to be a patient and carer and the distress both bring.  Keeping positive can sometimes be impossible so don't be hard on yourself if you have a "down" day.  We should all be proud of ourselves because we "manage" and when there are times when we don't, the wonderful people here can support and help.

Let me know how things go along and I shall think of you both.

Carrie x  

Hello Carrie,

I have just read your message and you sound like myself as in I had my Mum pass away with cancer 3 years ago this year. The day before my birthday little did I know what was in store for me. But to be honest as I have said before there are worse things than cancer.

I hope John that this information that Carrie has passed on is a comfort to you and your wife. I think having the dreaded needles in your veins is very painful when they start to shrink.

Good luck anyway. xx

Hey Dot & Ladies,

I thought it was about time we updated our pictures

As you can see I am bald again on this one but it is coming back slowly...So it will soon be back to washing and blow drying Anyway come on ladies let us see some more pictures.....

John sorry about your dreadful day. Things will get better xx

  Love as always Eileen xxxx

Mine hasn't grown that much Eileen, not got around to updating pic, I will have to make the effort!!!

Sorry to hear that your wife is having problems John, hopefully everything will go smoothly this time.

Hugs to all

Hi Carrie, Eileen & Dot

Thanks for putting my mind at ease, I read and it sounded terrible! So it's nice to hear a good experience.

Mary looks at it as yet another procedure to endure! But she's only had 5 of 18 weekly treatments so it's only going to get harder finding veins.Her hair is thinning quite a lot now so that doesn't help matters.

Anyway, I'm taking her away for the weekend, hopefully a well timed break in the Cotswolds

Hope you are both doing ok,

John

Hi John,

That's were me and David are thinking of going to. I am in Pembrokeshire which is beautiful but the Cotswolds is suppose to lovely...

I hope Mary is up to going.

  Love Eileen xx

Hi John, Hi Ladies!

John I'm so sorry to hear of your wifes problems with the PICC line being fitted. I know my boss has a Hickman line, but I don't know much about it. Carries advice seems pretty helpful though, so good luck for next week I hope it goes smoothly. Hope you both enjoy your weekend away.

I spoke to the nurse yesterday and she has advised me to get vitamin B12 from the doctor for the neuropathy - has anyone heard of this or taken it & does it help? Also been told the anti sickness Ondandestron would have caused my constipation so to take lactulose the week of my chemo! Other than that my aching and pain has gone and I've had no sickness. Apart from feeling tired I'm doing ok!

Take care everyone,

Sarah x

ps I'm gonna try and get a picture on!

Hi Ladies,

We had a better day today, I felt I was less than supportive to Mary yesterday, I was frustrated about what happened at the hospital, we both were. Nobody's fault, just one of those things. The hospital staff have all been lovely so I feel a bit bad about feeling this way.

Mary is coming to terms with having the Hickman line now, it's not great, but it's going to be less traumatic in the long run.

@Sarah - Mary has more success with senokot than lactulose when she needs something, maybe worth trying if it doesn't work. Glad you're feeling a little better.

@Eileen - See you in the cotswolds!

Thank you for your support,

John

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 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

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