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

Morning, I joined this site yesterday, I have battled breast cancer twice and I am now waiting to see a Consultant to seeif I have got ovarian cancer, I went to my GP 's surgery with a water infection and mentioned to this lady doctor who I have never seen before that I had breast cancer in the past, she examined me and said that she wanted me to make an appointment at reception to have my bloods taken and she wanted me to go for a kidney function test and also a scan of my ovaries, I nearly fell off the chair, she is worried that my stomach is swollen, I came home and cheked on the other symptoms associated with ovarian, I do have indegestion, back pain andI want to wee a lot more.  I am in shock, I am forty-eight years old.    The nightmare continues.

Hi John,

You've not posted for a while now so was just wondering how Mary is doing at the moment?

Hope you're both as well as possible

Much luv

Dizzie xx

Hi Dizzie and everyone else,

I was trying to give others a chance to post, but it has all gone very quiet on this thread at the moment, hope all is ok.

So sorry to hear this latest news,hope it is all under control quickly.So many strange things happen during this time and we are not in control of our own bodies.All the luck in the world to you all.Good luck to all the new people here and hi to Eileen ,Dot and Jackie,hope you are all  coping well.

Rose xxx

Hi all

Sue, no bladder is normal size! it just feals bigger and holds more without the tumour pressing on it lol

John hope Mary gets over the infection quickly, Eileen was plagued with infections and admissions during her chemo but she got through it. Hang in there not long to go.

Eileen, Dot, Rose and everyone else am hopeing no news is good news!

As for me I've done better after this lot of chemo than the first lot! energy still not brill but can do a lot of things that i haven't really managed for 2 years. Got a rash over most of body very itchy, but at least the muscles are still behaving so busy ignoring it at the moment! got oncology appointment on 6th June so fingers crossed the rash don't mean anything

Hope your all well

Thinking of you all even if I don't post often

Jackie

xxx

Thank you Rose and Jackie for your kind words.

I honestly thought I was going to lose her on Friday, it was very difficult for me to hold it together for Mary and for my daughter.

Hospital is the best place and the worst place to be when you're unwell. Of course Mary needs to be there to be monitored around the clock until she's fit to come home, but she has hardly slept because of all the noise that goes on 24/7! And that surely is counter productive. The tiredness makes it more difficult to cope with the cocktail of drugs and she is getting really upset about it all.

I wish I could bring her home to get a decent night's sleep, then take her back in the morning, but that's not going to happen! They say at least another 3 nights!

John

hi john

know what you mean, have you tried asking for a sleeping tablet for her? there not brill but they do help in short term use

Jackie

Does she have ear plugs? I never go anywhere without them !!The foam anes are good but I have to cut a bit off as they are too long,

Good luck ,it is awful watching and feeling so helpless.

Rose xxx

Hi John,

What next eh? You think you are plodding along nicely and then a hurdle pops up in front of you and down you go for a while.

Someone bought me a sleep mask when I had a long stay in hospital. They were marvellous at blocking out the light which is a huge problem in hospital, like trying to sleep in constant dayligh!!. You can get them from any chemist, usually with the travel bits and pieces. They may well help Mary - I do hope so.

Be strong John, as you always are, and roll on Mary coming home.

Love to you all, Miras

Hi John

I am sorry to hear that things are not going so well for Mary.I dont know if this information is of any use to you but I go regularly to a herbalist and while it does not cure cancer I managed to get through chemo without my immune system becoming compremised .I do realise that it could be argued that it is a placebo but for me the main issue is that it seems to  work as an immunity booster.The other thing is it can help your confidence to have esomething outside the hospital which you feel is usefull.I have had the shivers before from infection the doctor called it the rigors which has stuck in my head as a horriably discriptive word. My partner who is not at all into alternative remedies also goes to see the herbalist.

Hi John, & Everyone, Rose, Jackie , Dot, Sharon, all the new ladies,

I have been to Ireland on Holiday so only briefly read through messages. John it seems you have been going through a rough spell with Mary. So sorry about that.. I am thinking how we seem to all go quite and then a big explosion of things goes on.

I hope we can still carry on trying to cope with this? I have just forgot I ever had it and live as normal life as I can. Will send a longer message next week as still away from home so using my friends laptop.

love you all xxxxxxxxxxxxxxxx

Hi John, & Everyone, Rose, Jackie , Dot, Sharon, all the new ladies,

I have been to Ireland on Holiday so only briefly read through messages. John it seems you have been going through a rough spell with Mary. So sorry about that.. I am thinking how we seem to all go quite and then a big explosion of things goes on.

I hope we can still carry on trying to cope with this? I have just forgot I ever had it and live as normal life as I can. Will send a longer message next week as still away from home so using my friends laptop.

love you all xxxxxxxxxxxxxxxx

Thank you everyone for your kind words and tips.

Mary had a much better sleep last night and seems a lot brighter today. They do not think that the hickman line has caused the problem but are going to remove it as a precautionary measure. I'm hoping that she will be home by the end of the week so she can get some proper rest.

@Jackie - I mentioned to her about sleeping tablets, she is not keen on taking even more meds but will ask as a last resort. I hope your appointment goes well in June, maybe you have an alergic reaction.

@Rose - Funily enough I took her some ear plugs in tonight, I bought them a while ago when she complained about my snoring. She had trouble getting them to stay in her ears so I may have to look for some that are a better fit. I got her to listen to some chill out music on her mp3 player and that helped to relax her a lot.

@Miras - I suggested the mask to her. but she said the light issue wasn't too bad, she has her own room so it's easier to keep a bit darker.

@grumpy - Funny you should say that. I have been giving Mary a liquid iron herbal formula all through her chemo, but stopped it when we went to Portugal for a few days. It seems that since she has stopped taking it, she has started to have issues with neutrophils, hemoglobin and now an infection. May be unrelated but it makes you wonder doesn't it?!

@Eileen - Welcome back! I hope you had a nice holiday and all is well with you.

Best wishes to you all,

John

John

Sorry to hear you're going thru such a hard time, best wishes to Mary and she sounds like she's on the mend.

I notice you mention going on hols - did you manage to get travel ins for Mary? was it very expensive? can you recommend any companiea? Its just that i'm living in hope of having a holiday abroad when my chemo is over and don't know if its possible.

Thanks

Sue

Hi Sue,

thank you for your wishes, Mary came home on Thursday after 6 nights in hospital (less her hickman line). She was very tired and fatigued but is slowly getting her strength back. Will see what they say at clinic on Thursday when she tries yet again to get the final chemo cycle started.

Re holidays. Problem is as soon as you mention cancer, the premiums go through the roof! We decided to do our own risk assesment on Mary just before our 4 night stay in Portugal. She was doing really well at the time, so we opted to take a policy that excluded pre-existing conditions, i.e. any cancer related health issues were not covered. As it was an EU country, we would have state cover through our E111 cards in an emergency. We used Bromley Insurance who were very helpful, it was one of the many companies suggested in my thread

My next Dilemna is our week in Turkey in July, not an EU country so this is a difficult one. Do we cancel, or pay over £350 to cover Mary's ovarian cancer?

Good luck, I hope you get your holiday, we all deserve one!

John

Hi John

Just my 2p worth, I'd pay the insurance for non eu as anything Mary develops (hopefully nothing!) they will say is secondary to her cancer or its treatment

My rash is not allergy John, much as I wish it was! My cancer has a very unusual presentation, it starts with a rash, then my major muscles start going. None of the usual sypmtoms for me!!! But this time the muscles are ok, so not sure whats going on! Have bloods next week in prep for appointment so that should tell me whats going on (thou I'm not sure I want to know!). Feeling good which is also unusual if the cancer is back, so adding things up have decided its not back but have got the dermatomyocytis (rash and muscle) independently!

keep well eveybody

Love

Jackie

xxx

Hi everyone,

I hope your all ok and keeping well. I have been getting really bad  heart palpitations, hot flushes, shaky and weepy. I went to see my gp and she said I probably need to take an alternative to HRT. She has given me info on various stuff I can take. Have any of you ladies experienced these symptoms ?

xxxxxxxx

HI Eileen

I came off HRT about the time of the op and never went back on it, it was another risk faction in blood clotting which as you know I have problems with anyway! Since that I have continuious hot flushes but fortunately nothing else and as I know they will go within mins I have learnt to 'ignore' them. Sorry no experience of other forms of HRT so can't give you any advice will have to wait for the other ladies to input.  Hope you find a treatment that suits you soon

Love

Jackie xxxx

Thanks Jackie,

It is strange, I thought I needed my blood pressure tablets increasing but my BP was normal so the nurse thinks it's hormonal. I will wait for other feed back.

Keep well Jackie. xxxx

Good news at last!

So glad you have positive news at last. I love Turkey,we always used to take an empty suitcase to bring back all our shopping !!

I hope Mary ,s strength picks up now and things are on a happier phase for you all.

good luck

Rose xxx

Brilliant news John, & Mary ,

It shows that the light is at the end of the tunnel. A very long one I know but  it gives us all hope and as you say this site has given all of us so much positive thoughts and has helped us through dark days.

I hope you get your insurance sorted out and I am not sure what sites you have checked out but cruk has an insurance company I think or some cancer site has.

Enjoy you both deserve it... John you are a wonderful man, can we mold you and have one please...Mary you are a very lucky lady..

         Love Eileen xxxxx