List Writing

I'm just writing my list of things to ask the consultant on the 4th, not exactly a Christmas list, one of the things I'm wondering is would just having carboplatin without the taxol be good enough, and my concerns about early onset dementia due to the lack of oestrogen, I've got dry skin my hair feels thinner and my nails are more brittle. The other thing is how do the cycles work, is it week one chemo, week 2 and 3 clear, week 4 chemo, what happens at Christmas, do they still have a chemo clinic on New Year day and how soon after the treatment can I fly. What happens if I have one session and feel ill so can't face going back.

I'm sure there is so much else but my mind keeps going blank when I think about it. I'm so tired of not recognising my body, had my first trip out post op today, went to visit FIL, supermarket and drop off a letter with accountnat with hubby, nice being out in the car with him. Going to drive my car this week as I will be 6 weeks post op, and I've had sex, phew it still works, was having moments of weepy self pity of what if it's not the same. Still got weepy wound where boil burst, but it's better than it was, still got a discharge only a little intermittantly and leaky bladder, I miss me, where my clothes used to fit, my hair didn't itch and I could look in the mirror.

Cut my toenails, just got to paint them and brave leg shaving so must be better. It seems a long time to recover from an operation, and still on the antibiotics which I'm sure helped. Had to shop on line, no retail therapy fun and watch the pennies, even less fun.

LA

14 Replies

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  • I know you might not be feeling the best, Lily-Anne, but you do write a great blog!

    I don't think anyone on here would advise you on which chemo option to go for. I can tell you that I had carboplatin only on the advice of my onc. My cancer was stage 1a clear cell.

    Re the cycles, you're right, it's week 1 chemo and then 2 weeks clear. All things being equal, the routine shouldn't vary over Xmas.

    It sounds as if you're making really good progress. Cut yourself some slack. Things will continue to improve for you, I'm sure.

    All the best

    Love

    Linda xx

  • Dear Lily-Anne ..

    Lily -Anne bless you xx you will get there honest you will ..its still so very early days and all the feelings you have had and still have we can all say we have had them at some point or other .

    Time Lily-Anne give your self time ..it will come together .. do so know what you mean about will it still work ..ie making love .... as that was my feelings too ... and its so good when it does work .... Let your tears come ..its good for you but laugh too ..great healer is laughter ....

    I missed me too each morning when I looked in the mirror to put on my head scarf as the person lookng back wasn't me ..but she is now and has hair too which is just great ..short and curly .. (I loved my hats and scarfs ..had lots of nice ones )

    Can remember my daughter cutting and painting my toe nails and then later being able to do it my self again .... .Paint your nails a lovely colour and treat your self to some really nice shower gel or bubbles for when you can use it again as you will have to wait a while before using a perfumed one .

    As you think of questions to ask the consultant write them down straight away in a note book ....

    Go easy when you start driving ....

    Take care now xxxx

    Love Jan xxxx

  • Hi Lily Anne

    Thanks for the update , and so sorry that you are still feeling rough. Two operations so near together plus the diagnosis are bound to batter your poor little immune system. Try to be patient. At the same time as my surgeries and diagnosis a ( male) work colleague had a heart attack in his 40s , so very unexpectedly. He didn't have half the issues I had including two surgeries , yet he took far more time off work ...9 months as opposed to 9 weeks for me the first time. And I had a far easier journey (as in I didn't need chemo etc ) than virtually all of the other ladies on here. These things take ages , so try to be really kind to yourself. We all know how difficult things get.

    I am also in healthcare and a few months ago did a presentation on dementia for my colleagues. There is no concrete evidence that a premature menopause and/or oestrogen deficiency causes dementia. There are modifiable factors that may be protective against it , such as keeping blood pressure , weight and cholesterol under control. Try to take one thing at a time , you have done so well to get this far.

    Big cyberhug

    Charlie xxx

  • Dear lily Anne,

    I know it is awful at present but it will get better and it passes! Just bear in mind the fact that the hair starts growing back as soon as the chemo stops and, with luck, the tumours will have been zapped!

    I had the dry skin, splitting nails and exhaustion! Add to that my age and I was worried about dementia too! Apart from occasional, momentary loss of words I appear to be better than most for my age! I still do the Guardian cryptic crossword every day, and days when I don't finish it, like last Saturday, I blame the new setters! LOL!

    I am divorced and live alone and now, with a colostomy, cannot see myself having the chance to find out if sex still works! LOL!

    The worst thing about chemo for me was the effect on my taste buds, intensified sense of smell, total exhaustion, and the loss of all body hair. This had some advantages (no need to shave my legs) but mostly hated! I looked in the mirror and saw my dad looking back at me! I hated the wig so wore exotic scarves & loads of eyeliner & eye pencil to make up for no lashes and eyebrows! I dealt with the nails by keeping them short and using one of those clear nail strenghtheners you can get in Boots. The Age Defying one is good and I still use it! It looks like clear varnish and forms a good base coat for colour!

    I had carbo & taxol to begin with and the worst effects were due to the taxol which left me with residual neuropathy but the effect on the tumours was worth it!

    It isn't good but it isn't as bad as ones imagination might make it! I was sick after cycle one but I had Domperidone and other anti nausea tablets which helped to control it and somehow I got through. I've even learned to cope with no feeling in my feet and no longer head butt walls or fall down unexpectedly!

    Good luck!

    Thinking of you!

    Love M xxxxxxxxx

  • Ps!

    Do be kind to yourself! Lots of moisturiser, unscented, (E45 is good) baby oil on wet skin in the shower baby shampoo and baby bath are all gentle. Deal with the nausea with small bowls of tasty nibbles to hand all the time.

    Take care! Love M xxxxx

  • Hi Lily anne - You are doing really well at such a short time from your ops. Don't rush

    things as your body takes time to heal. I had dreadful dry skin and brittle nails after

    my op and when you have chemo this will affect your skin and nails too.

    I had to decide which chemo to have and the only advice given to me was if I had

    carbo only the cancer may return and if I had carbo/taxol there was less chance of

    any return.....so I opted for combo and so glad I did as it does give you peace of

    mind especially when you get lots of niggly pains twelve months on.

    My only other advice I can give you is try not to think about things too much as you

    sound as though you are worrying about things. I just go with the flow!

    as it is the only way I have got myself through all of this journey.When I look

    through the mirror I often think who is that looking back at me - my only problem

    is my hair is taking such a long time to grow and I finished chemo at the end of

    May...I still can't go out without a wig or hat...but maybe that is just me as I used to

    spend a lot of money at the hairdressers and had such lovely hair. BUT I have

    saved a lot of money not having my hair done and i've spent it on clothes instead.

    Anyway hope I haven't gone on too long and this has helped you in some way.

    Take one day at a time.

    Love Angie xx

  • Thank you ladies,

    I have been list writing today, and researching (yes I know!), and I'm not sure about the Taxol it seems like such a harsh drug considering this chemo is about mopping up, with hindsight I wish I hadn't had the second operation but had the chemo instead, although this was offered at the time the oncologist said it was best to go for the surgery as the best course just incase it had spread from my left ovary and there is no other way to be sure. However today hubby is looking at the magical 6 weeks which will be Wednesday and gave me a list of things to do before he went to work, thanks! I felt like a child playing truant and have now been caught so it's back on with it. We have a shop that we open every other weekend, but we did talk about me being in the shop during the week while I'm not at work, which is okay but there isn't much footfall during the week and now I suddenly feel under pressure to pull my weight and get on with it.

    Not only did I speak to my sister for the first time in 2 years, and it was a normal conversation, I had a text from a very old friend who I lost touch with, she was with me when my second son was born as my then husband had decided he prefered Florida with his new girlfriend, I spoke to her when my son passed away in 2008 but didn't make the effort to keep the contact going, anyway her daughter is on facebook and I added her as a friend, she has told her Mum that I'm suffering with OC and gave her my number, we are going to have a chat tomorrow, which I'm sure will be nice. My Mum told me that we have different friends for different parts of our lives and when that part closes and other opens then we lose touch with people, she was right. So it will be nice to catch up, but always seems to be when there is bad news!

    Still got leaky wound which is so annoying, hubby had a quick look this morning and he said he thinks it needs air to dry up, not easy unless I wander around with my knickers not quite pulled up, and hold up my tummy in the air. In the night, whilst dreaming, funny how sleeping properly helps you dream, I sat up using just my stomach muscles, it made a bit of a crunching noise, I wasn't sure whether to be impressed or worried! Other than that the rest of the wound did draw me in for a peek and it's healed nicely just a little pink with some scab, but some parts you can't see anything and it's really smooth.

    I feel like I'm rambling now, if anyone can come up with something they would ask the oncologist please post.

    LA xx

  • Hello Lily-Anne

    I've had carboplatin alone but only at 90% of the usual dose because of my already compromised immune system. The consultant was adamant it would be enough to do the 'mopping up', and desirable as he thought I wouldn't be able to cope with the full dose. i.e I would have serious infections.

    However, I'm left with the thought that if 90% is enough for me, why isn't it enough for everyone else?

    Letting air to the wound might help heal it. Have you something long and flowing you could wear around the house with the briefest of briefs? Getting all fabrics away from the wound might stop any irritation they could be causing.

    You've probably got enough questions for the onc, as you may get bogged down with too much information to take in. I've got chemo brain so mental processes aren't as sharp as 12 months ago. Rather like being menopausal again when I had to be very careful at work not to let my scatty brain show! At the time I was a Systems Analyst, so instead of giving immediate answers as I would normally do, I would say things like 'There are several options so I'll investigate which would be best', and give my brain time to work. Normal thinking came back after a year or so.

    Hope you have success with the onc.

    xxChristine

  • Hi Lily-Anne

    Its more or less exactly a year since I had my surgery, following 3 cycles of carbo/taxol and preceding another 3 cycles and you have reminded me exactly how I was feeling then. My consultant reminded me that as I'd been filled with poison, cut open, and was about to restart the poison, I would need time to get back to normal. In the event, once the treatment finished at the end of Jan this year, I started to improve steadily. My hair had started to reappear within a month, along with lashes and brows. Of course it reappeared on my upper lip and chin first. Sod's Law. My skin played up all the time I was on chemo but that also went back to normal within a month. I see you're making post-chemo plans which is great.

    As far as doing things are concerned, remember to listen to your body. If it tells you that you need to rest, have a rest. Glad you have found out that everything still works ;)

    As regards Chemo on New Year's Day, I had my second to last session on 2nd January 2012 which was a Bank Hol as the 1st Jan fell at the weekend. A nurse told me that they had been told that in future they would be open on Bank Hols. I suspect that different places may have different rules though. Definitely worth asking.

    Take it easy and spoil yourself rotten.

    Much love

    Mary xx

  • Hi L-A,

    I opted for just carboplatin, despite my oncologist trying to press me to have taxol - I didn't like the sound of it, and a friend had had v bad neuropathy from it.

    Eventually he (the oncologist) admitted that the carbo did 90% of the work with 10% of the damage; the taxol 10% with 90%! He also said that it would mean he had a plan 'B' to fall back on, should it recur!

    It has not as yet 3years, 4 months later, and the carboplatin was enough for me to recover from. Read about it all, and decide what will work for you.

    Very best,

    Isadora.

  • Don't want to be undiplomatic but I can't figure why a person as strong as you sound is determined to fight the docs recommendation.... Taxol was hailed the best development in OC treatment for years according to some sources I've read, and marked an improvement in average survival time (yes i know we aren' focusing on stats but...)

    You're worrying about dementia decades hence? I just don't get that. sorry, got to be honest!

    You do make me laugh though... Do keep trying the retail therapy and everything you are doing to cheer yourself up. It's all utterly horrible, we all know. And... do your pelvic floors! I had the leaky bladder too, the one thing I managed to fix completely when I gave in and did the exercises. Check out the Kegel Trainer app on iPhone or find an equivalent, it really helps remind you!

    Sue

    x

  • Hi, Lily Anne, I was diagnosed with Primary Peritoneal cancer stage 4 in September and my oncologist said she had to offer both drugs but in her opinion there was very little difference except more side effects. I opted for carboplatin only and now had 3 treatments. I am coping well just feel rough for a few days after but not too bad. My Ca 125 is down from 9,000 to 500 and the fluid in my abdomen appears to have gone. I still have my hair as well. I wasn't sure I was doing the right thing but thought they can always add it if its not working. I am waiting on an interim scan result which I hope will show a reduction in the amount of cancer cells. Only you can decide what you feel is best for you but try not to worry. I don't know the answers to some of your other questions as I am new to this. All the best.

    Positive Sue x

  • I think I'm indecisive, not sure strong is the word I'd use, more resigned I think, to having to go for chemo a bit like going to the dentist, don't want to go but what is the alternative. However if the dentist okay I'm going to pull out 3 teeth I'd say well lets start with one and then talk about it lol, maybe procastination?

    Lots of really helpful advice thanks everyone, I've had a few lectures today from friends on doing as I'm told, had call from hospital tonight to confirm my appointment next week, so off to chat drugs and bloods and hair etc. I am worried, it makes me feel sick thinking about it and I know I'm not alone with this but it is quite a lonely place, especially at night when the house is quiet, hubby is sleeping and I'm thinking enough what if's for everyone on the planet. In the daylight I can almost pretend it's not real, because if I can't see it and can't feel it how can it be there or maybe it's not, how can in this modern world where I can talk face to face with friends across the World on my phone a specialist cannot be able to tell me for sure.

    I've still got a little sticky wound although otherwse nicely healed apparently (can't look), and a slightly pinkish discharge sometimes. On the bright side could wander about all day tidying up loading dw preparing dinner and continuing with my writing. So normality is here, just got going back to work to do next, hope I can work around the chemo. Although it seems many of you do. I like the fact you still have your hair Sue.

    LA xx

  • Hello LA. I hope your feeling ok..

    I was the same as you i was told the chemo was just precautionary, BUt the oncologist advised both carboplatin and taxol. I was distraught having read the side effect. Myself and my partner talked about it at length and i dedcided to just go with carbo.. But this has to be your decision. It was definately right for me. I am sure you will make the right choice. I also had to have my treatment over christmas but i asked my oncologist if i could have the one scheduled for xmas eve a week later instead i wasnt shocked to hear i wasnt the only one. so I had my last one on new years eve instead. i think the clinics are open most of the time.

    please take care of your self

    lots of love

    suzanne. xxx

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