update

Havent blogged for a while, or commented on questions, to be honest havent felt like it since Lizzies passing,I know lots of us felt the same, but she would want us to carry on, with all the help and support we can give each other.

I have found out I am platinum resistant, my last two chemo's havent worked, I am now on a couple of months break then to start a new combination of chemo, no chance of remission this will just keep the b***er at bay as long as possible, so got to make the most of a few months of 'normal' life, I expected it wasn't going well, did ask my consultant the lovely Dr Lamont should I buy green bananas? and he said you can even listen to an L.P, Feel sorry for my hubby who has been looking forward to retire (next June) lots of plans,! trying to fit in a couple of short breaks one down to Cornwall to visit grandchildren, one just for us and then a family wedding, all hubby has to do is try and get time off work, easier said than done !. I have been reading the posts and have been thinking of you all. Love Sue x

37 Replies

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  • Hi Sue,

    Good to have your update, sorry things are not going too well at the moment.. Just letting you know I am thinking of you love x G x :-)

  • Thanks Gwyn, hopefully Bob getting the time off will be making the most of feeling well. Love Sue x

  • Hi Sue

    I know how you feel because I'm in the same position as you, I hope your present treatment does keep it at bay for a long time, what are you on now? I've just started weekly Taxol, my next scan end Aug.

    Sending your best wishes

    Love

    George x

  • George, thought I had replied,but it seems to have gone! I am not on anything at the moment, but will be going onto gemiside or something like,are you platinum resistant? good luck for your next scan. Love Sue x

  • Hi Sue, yes I have been told I am platinum resistant since my second line chemo didn't work, have also been told that if the taxol doesn't work then there are no other options chemo wise, although I see other people are having other sorts of chemo, so a bit confused by that.

    Hope you enjoy your break and have fun with the grandchildren.

    Love George x

  • Sue, I know how you feel. What with the passing of Lizzie and two other dear friends - Marge from Liverpool and Wendy from Portugal, both from another site + my own setbacks, I just haven;t been able to log on and pass comments. I think it was, and to a certain extent, a period of negativity, which I don't normally have. I see a cancer Macmillan ad on TV and cry, I cry so easily now. I didn't bofore - I was tough.

    Sorry to hear about you being Platinum resistant,but don't give up. I was told that 5 years ago and since before Xmas I was put on Carboplatin again (which damaged the bloods so much I had to come off it) and now I am back on Taxol. So things have gone full circle with me.

    Chin up Sue, enjoy your break. We had been hoping to book a little cruise with the small ships we go with. Ports of arrival and departure being a direct flight from Malaga - sods law all booked up. We have now decided to go to a beautiful hotel we visit in the countryside near Granada. It is our peaceful haven. We have our dearest friends who visit us every year. This year of course I can't look after them, so they are coming to the hotel to join up. Do you know I am looking forward to it more than I would a cruise. George our Golden Retriever is going too as the hotel is in 1000's of acres of olive groves and is wonderful for hubby and friends to dog walk.

    I know what you mean about retirement - we retired to Spain and what happens - 3 years down the line bloody cancer !!

    Take care

    Love Anna xx

  • Anna, I think thats what it was a negativity, hopefully thats gone, you have been through so much, it makes me feel humble, but like you, I just like spening time with family and friends, thought of my bucket list, swimming with dolphins, northern lights etc, but will have a better time playing with my grandchildren,keep feeling well and enjoy the olive groves. love Sue x

  • Hi Anna,

    How lovely you can take your dog.. I hope you have a good time despite difficulties..

    I know what you mean it all happens at once..I lost my friend to OC just after Lizzie.. and my niece (through marriage) died just before that with OC leaving behind to disabled children one in a wheelchair she was only forty five..and has changed her families lives forever as she did everything for the youngest one..

    On a lighter note please have the best time you possibly can.. :-) 8-) :-D the smiley faces are in memory of Lizzie love x G x :-) :-) :-)

  • gwyn ditto xx (cant remember how to do it) age, dementia or just plain thick !!

  • Hi Sue,

    Not dementia or thick haha I get it wrong all the time but determined to do them and experimenting with new faces (now I get them mixed up) LOL here goes tuition coming up you press this : then you press this - then this ) smily this ( sad this D happy now you press them without spaces and if you do two you have to do a space inbetween the smilies got it? Now my head hurts haha here they are :-) :-( :-D

  • it all came flooding back, must admit when reading how Lizzie did it it was 3am...! :-) :-D

  • Hi Sue

    I was wondering how you've been getting on. I am so sorry to hear about the set-backs you have been having. Mr Lamont was my oncologist, when he was working at Southend Hospital and I still meet him sometimes when I am at the Essex Cancer Network NSSG meetings as a rep for Ovacome patients. He is a lovely man and always so concerned that patients needs are put first. You are in good hands there.

    Try to keep your spirits up so you can enjoy the breaks you have planned. I know it's easy for me to say when I'm not facing what you are, but we all need to think about the right here, right now, little things we are grateful for. I found it helped me through a lot of wobbly times.

    All the best, if you need a rant or a sympathetic hug you know what to do ...... Just get on here and shout for help!

    Love Wendy xx

    And a virtual hug (((((xxxxx)))))

  • Thanks Wendy, will do, as I said above since the loss of Lizzy I've felt a bit negative, but have pulled myself together to get in touch with everyne again. Love Sue

  • Hi Sue

    I hope you enjoy the breaks you have planned, and that your hubby gets plenty of time off.I'm just back from Wales after my 4th round of chemo.Seeing my consultant tomorrow, not looking forward to it.Hoping for a treatment that works better.

    Hugs

    Juliex

  • Dear Sue

    I'm really sorry t hear you've been feeling so low and now you've got the additional worry of being platinum resistant. I hope you can enjoy your time with Bob and your family. It's not been a joyful summer for you.

    I'm sending all my love. We'd still love to hear from you even if you're feeling fed up. You can always post on here and we'll be here for you.

    Loads of love and hugs. xxx Annie

  • Thanks Annie, have been wondering how the new trainers are ? are they getting much exercise ? Lots of Love Sue

  • Dear Sue

    How thoughtful of you to remember my trainers and the 5 k race. They are feeling abandoned. I've just been for a week's holiday to Scotland to visit dear friends of many years. We had a great time and didn't stop talking but no running. The weather was wonderful up there. They live in the West at Largs so we had a couple of days exploring some of the islands which are absolutely delightful and spent a day in Glasgow. I'm on the train home from Bristol airport now and you've reminded me to get them out again and give them some exercise.

    I know I should develop the jogging as there was a post to say how cancer hates oxygen and there has been some research on exercise and its possible effects on cancer. It felt good to have great gulps of air in my lungs when I was running. I managed the 5 km but not running all the way. I'm just going to stick to that as a goal as to be honest jogging bores me silly.

    It was hard to say goodbye to my friends this morning and it was only at arrivals that it really hit me and I had a bit of a weep. I'm better now. Back to work soon but now planning on retirement and looking forward to the next 'phase'.

    Lizzie has been very much in my thoughts. She managed to keep positive right to the end despite a lot of discomfort. I received an email from her husband yesterday. He'd passed on the donations to Ovacome. Life must be so tough for Jan.

    I hope you're feeling a bit more cheerful and upbeat about everything. Take care of yourself and enjoy what you can.

    Loads of love xxx Annie

  • Sue,

    I have heard that sometimes if you can stay off platinum for awhile it works again, so heres hoping you get good results and keep the b.....r at bay and then carbo works again.

    Love and best wishes to all

  • Nandi, one of the reasons to have a break as well as building my body was so that when I start again, it should take it by surprise !!! I hope. Love Sue

  • Sue, this is what I said above . I was on Paxitaxol & Carboplatin first time round . Had Carbo again before Xmas and now on Taxol again, so don't despair.

    Love and hugs

    Anna xx

    I can't do the smilies either !!

  • Thanks Anna, I know you've had a struggle, but they do seem to keep coming up with different lots of chemo, lets hope they keep coming. Have a great break Love Sue

  • Sue,

    So sorry to hear your news. I know exactly how you felt when you asked about buying "green bananas". How lovely to have an Oncolologist with the same sense of humour - enough to reply that "you can listen to an LP", even when you're receiving horrible news. I do hope you manage to keep your sense of humour, most of the time - I'm sure it helps.

    I was again told that there was no treatment/trial to go on, this time last year. My husband and I went to buy some annual bedding plants and out of the blue I suddenly thought, "B****r that", and bought some perennials out of sheer cussedness. I couldn't believe it, a few days, later, when planting them out, I found myself singing!! I.We only have a small garden, and I find gardening really tiring, but that day I just didn't mind. This year, the plants are (mostly, I cannot tell a lie!!) still here, with me.

    Keep your chin up and enjoy your holidays with the grandchildren. I wouldn't be without mine. I do hope your husband will be able to get more time off work - no chance of retiring a year early, I suppose ........... ?

    Love and positive vibes, Solange :-) ( Sorry - my pathetic attempt at Gwyn's smile didn't work)

  • Thanks Solange, it does give me some hope, I know I wont get remission its just keeping it at bay as long as possible,but while i'm well i'm going to keep my chin up, hopefully we can get these holidays book, no chance of Bob retiring early un less we win the lottery.Thanks again, I'm going to try a smiley face ! Love Sue :-)

  • Wow - it did work after it left me - turned round and went yellow!!

    Solange x

  • Hi Solange,

    Well done now you will have to try the glasses one haha press this 8 then - then ) all without a space LoL x G x 8-)

  • Thanks, Gwyn, I got there in the end !!

    Solange x :-) 8-) 8-D

  • Well, nearly !!

    Solange x

  • So good to hear from you Sue! Sorry you are having it so tough at present! Enjoy the break from chemo! I am too! My last tumour did not respond to cisplatin and I am allergic to CarboPlatin. They won't give me taxol again because of the neuropathy. Though I feel quite well at present there are some niggling tell tales so I am dreading my appointment with my gynae surgeon on Aug 2nd.

    I am green with envy of Anna's hotel break,! Sounds idyllic! I miss Lizzie badly! She was always so positive, even .seeing the best in those dreadful nights when she was beeing sick. I had a yard sale on Sunday, a disappointing result but, as my local hospice got all the unsold items for their shops I am dividing the proceeds between, Ovacome, Target OC, and Macmillan. The donation to Ovacome will be in memory of Lizzie!

    Later in the year I am going to throw a wine and cheese evening in aid of the same three charities ( providing I stay well) two years ago I had a Pimms day and raffle and raised £400 for Macmillan so I hope to raise more the next time. I am thinking of either Sangris and Tapas or Mulled wine and cheese, any other suggestions?

    I have not forgotten the idea of assembling an anthology of verse for Lizzie but I have done something to my back and sitting is hell! Only marginally less painful than driving! The plus side is that my GP did a CA125 test as a precaution when I saw him about my back a week ago today and I have not been called back! I am sitting here with a heat pad on my back, a brace on my knee and swallowing painkillers like smarties! What a fun time we do have! All this and old age too! Just can't believe my luck! LOL!

    Love

    Margaret

  • Margaret, one of my problems is my knee it just keeps giving out with no warning I end up on the floor, the last time in the kitchen, managed to shimmy my way to the phone and rang Bob at work, back he came but not strong enough to lift me, so rang my friends husband, who hadn't seen me bald, round he came with me on the floor bald as a badger and the both hoisted me up on the coach, dignified it was not, now I am just so scared to go out on my own incase I end up on the pavement.good luck with your appointment let me know the results Love Sue x

  • Dignity is the first thing we learn to let go of isn't it Sue! My knee gives way but, so far, not as bad as yours! I just cannot get comfortable! Love the idea of shocking friend's hubby with bald head! As you will have gathered I got quite bolshie about it when I was bald! A certain 'you got a problem with that' attitude that has carried over to the stoma! My way of dealing with it! Hey ho! The wind and the rain! Both in quantity today!

    Margaret

  • Ah, Maragaret! Well done for keeping things positive. I hope all your aches and pains feel a bit easier soon. My late mother in law had a lovely Welsh saying ......'old age doesn't come alone!' ........ how true! ;-/

    Love Wendy xx

  • Sorry about spelling of Margaret! Blame the iPad! Xx

  • Know the problem! Even with my handy little 'pen' I hit the wrong letters!

  • Bob, came home from work yesterday and has booked a coach holiday to the isle of white leaving Sunday !! just told them at work he wanted a week off and got booking, hells bells never done anything like like in our 42 years of marriage, fingers crossed for the weather.

  • Hi Sue,

    Glad you are going to have a nice break, we must be due some nice weather, my sister goes on a coach holiday to the isle of white and she loves it there... a tip if you have a blue badge for parking...and take it with you the coach driver can use it to go through any toll roads or so my sister said.... as she has used it on a coach to go over the severn bridge ( score brownie points with the coach driver) haha.

    Have a good time love x G x 8-) 8-) 8-) sun glasses on the smilies LOL

  • Maybe I should have done this - I tried to be clever like Gwyn !

    Solange 8-)

  • Super news about the I.O.W. holiday, Sue, and what a suprise !! Just shows it's never too late to do something different.

    Have a happy time, love Solange. B-)

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