Up and down !

I am ashamed of snapping at people but get very frustrated with feet and hands that do not feel and feet that stumble because the balls and the toes are dead! A brain that functions at half speed and a body I hate! A colostomy that misbehaves on occasions! when "normal" people have diarrhoea it does not overload their colostomy cap and dribble all over the floor without them being aware there is a problem! finding the drips and dealing with them is an added problem!

Sorry! I cope very well normally but tonight someone called me a liar and I lost my rag! I am ashamed of over reacting but last Saturday I missed the opera because of a cold, had a sneezing fit on the stairs when going to bed, lost my footing because of the neuropathy, and fell down stairs! No broken bones thank goodness but lots of bruises and feeling very fed up!

Had bone density scan on Wednesday, start Radio therapy on the breast on Monday week and went to a return to movement clinic at the breast cancer centre today! Felt like screaming at them "try ovarian, with a colostomy" I know breast cancer is awful, and disfiguring, but, these days, it is curable! for me the lumpectomy is a mere flea bite!

Sorry just needed a moan I feel much better!

53 Replies

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  • Oh Margaret! I don't blame you at all for having a rant. Given the circumstances, I'm surprised there were not a few #^*¥ words in there! You are usually so cheerful and seem to cope so well, I can't believe anyone would call you a liar. They must have been a real

    w#¥<er! Anyhow, just wanted to send you a virtual hug (((xxx))) as my Grannie used to say 'it'll all seem better in the morning' Hope so. You are too precious to be upset

    Love Wendy xx

  • Hi Margaret,

    Moan away you've earned it, a lot of people complain about much much less, and at least on here we understand... no one judges you...and do you know what? even your moans don't seem like a moan... Today on the first day of march there was a report in the news about breast cancer...and I thought we can't even have this month for OC without hearing about breast cancer (and I know breast cancer is awful too) and you of all people with your double whammy have got both you deserve a good moan, and I am glad that it has made you feel better. Sending you my best wishes and love x G x :-/ ;-)

  • Thanks Gwyn!

    That is what I love about this site!

    St David's day no less! Sorry I have a sort of anti welsh knee jerk reaction! Breast cancer is awful , and disfiguring, but hell a handful of silicone beats the hell out of explaining the colostomy!

    on the other hand I just had a very small lump! Its the frigging lymph nodes that are a bummer!

  • Thanks Wendy! Just what I needed! I must admit being accused of lying is the real anathema for me! telling the truth has always been one of my essentials! As a child I was unable to tell even little white lies like "mummy isn't here" when answering the phone! Result? a good hiding for saying "Mummy says she isn't here"! LOL! I find it hard to lie though I must, as we all do, have deceived myself on occasions! If I had not been feeling bruised and tired and cross I would not have over reacted so!

    I am really looking forward to our get together in May! Do we need to register for "members day" ?

    M

  • Hi Margaret. I hope today is a better day for you. I'm looking forward to meeting up in May, too. I have registered via the Ovacome email address which is ovacome@ovacome.org.uk or on 020 7299 6654. All the info is on the Ovacome website.

    Love W xx

  • Hi Margaret/Wendy

    Glad you mentioned this as I didn't realise I needed to register.

    I'll now do so.

    Thanks

    Col xxxx

  • Margaret,so sorry for all you are going through. Please moan away here. Its wonderful to know we can let off steam in the presence of those who understand.

    Love and best wishes x

  • Eeeiuu. I'm not in the least surprised. Vent all you want. Most people count cancer as a life changing disaster and you have had two bouts of it - three if you count your second surgery - one after the other.

    All I can say is, scream. Take a deep breath and get on with it. Which I know you will do. I am thinking of you. Cx

  • Thanks!

  • Dear Margaret hope you feel better for letting off a little steam. I don't know if its good for the soul but I'm sure it's good for something!

    After trying to walk recently when my foot had gone to sleep I now have a slightly better understanding of the discomfort and danger of neuropathy, which I don't suffer, but I do sympathise with you on that as well as the horrible colostomy problems.

    I'm also glad to see I'm not the only one who gets a little bit weary of breast cancer's high profile. Actually I know four people who have died from brain tumours, which seems like quite a lot, but you don't hear that much about that form of cancer either.

    I suppose a perfect world would be boring. Wishing for better times for you.

    Love

    Linda xx

  • Hi Linda!

    I suppose the disfiguring aspect of breast cancer and the obvious sexual connotations are the reason for the high profile of breast cancer and other cancers are less "sexy"!

    Heigh ho I need to do my exercises!

    M

  • Hi Margaret

    Sorry you've had such an awful time.

    I think the high profile of BC is because it is one of the most common cancers BC patients have fought hard raise it - good role models. I have both OC and BC as you do and it's all pretty miserable to deal with. The last thing you need is unpleasant people on top of it all.

    Hope things look up soon

    Monique x

  • Thanks Monique

  • Hi Linda,

    I am glad you mentioned how you feel about breast cancer, as I thought I was alone in feeling like this.

    When I was first diagnosed, the place where I worked suddenly became cancer aware, so sent off for pin badges to sell in their shop, whilst it was an admirable gesture, I couldn't help but feel a pang when they were pink for breast cancer and not teal for OC...they also asked me to make tunics for the Roman soldiers in bright pink so they could go out and raise money for breast cancer, I was pleased that me having cancer had an impact, but wished it could have been teal tunics, but I realised that people wouldn't get it, everyone knew why they were wearing pink but it wouldn't have had the same reaction for OC we really are the poor relatives of women's cancer... and I feel really guilty feeling like this...when I read in the national news yesterday about breast cancer, I still felt that pang because March is ovarian cancer awareness month I honestly feel we are on a loser. :-(

    Oh well rant over :-/ ;-) love x G x 8-)

  • Gwyn

    My sentiments entirely. I also read that March is Brain Cancer awareness month too!! There are 11 months in the year - why don't they choose a different one each!!! I wear both teal and pink ribbon badges when I go out and have had a few people ask me about the teal one, which I got from M&S a couple of years go. I wonder if any of the big stores are promoting OC awareness this month? xxxxx

  • Apparently March is also Prostrate Cancer Month. Velindre told me this because the prostrate lot want our display table on two of the days. Chris and I have nabbed it for the rest of the month. Tee Hee - no one's going to complain about a lack of awareness about Ovarian Cancer round here!! We're tealed from tip to toe. lol Annie

  • Hi Fitzy,

    When I enquired at a Target Ovarian Cancer meeting why we were out of step with the rest of the world (March being OC awareness month) and other countries have November I was told the general consensus was that November was used a lot by breast cancer and we would get swallowed up, with them being a bigger charity etc.

    But like Annie says other cancer charities still share March ??? :-/ ;-)

    so we are out of sinc with the rest of the world America in particular. :-(

    Love x G x :-)

  • Margaret

    I think you showed admirable restraint by not punching that person in the mouth.

    Thinking of you and hoping things will improve

    Love Mary xx

  • Hi Mary! I was at a committee meeting at the time! LOL!

  • Hi margaret

    I am so sorry that you are having such a rough time. Of course you would not be normal if you did not feel frustrated at times with all of these issues. We are all here to listen , it,s not moaning , and please do it as much as you like. It is you today and may be me tomorrow. Try to get through this latest treatment , spring and summer are coming for you to enjoy.

    Love and hugs to you.

    Charlie xxx

  • Aw bless you Margaret you are amazing!! You truly are an inspiration to so many on here the way you cope with all the cr** thrown at you so you are totally justified in having a moan for once. I hope it helped airing it on here?!

    Keep up the good work and keep us laughing!

    Love MB xxx

  • Always does!

  • Dear Margaret

    I'm sorry I didn't see your post yesterday because I would have sent a huge virtual hug to you and loads of love.

    You are perfectly entitled to be fed up and to shout at anyone who has the audacity to call you a liar. How rude! How absolutely shocking. I'd probably have cried in your situation but you showed your true metal and courage by 'losing your rag'. I bet there was a stunned silence after that.

    You have truly had a lot to cope with and there's no one on the site who doesn't think of you and admire you for the way you just get on with everything and mostly post up amusing anecdotes of situations which really must've been pretty bad at the time.

    I hope you're feeling better today. There's a lot of press coverage about Ovarian Cancer and a lot going on UK-wide. Una (Poleglass) is coming your way to give a talk at a conference organised by Ovarian Cancer Action Research this weekend.

    I don't suppose you'll ever want to think of making life a bit easier for yourself. I was wondering how on earth you were managing to get to a committee meeting which I bet you were doing with the intention of helping other people. I just hope you can rationalise the things you do so you can prioritise the things you really enjoy which I know are seeing friends, opera, theatre and your various sport activities.

    I'm looking enormously to meeting up with you on Friday 17th and then Members' Day on 18th. You do have to register for Members' Day and you can get any details from the Ovacome Main Page. I think you have to email Sonia Vigg. Don't miss out on that whatever you do!!!

    I was just this morning sorting out all my papers and looking at the hotel booking slips. I'll get these photocopied and posted out to everyone who's staying in the Ibis in our booking. I've also booked my train travel to take advantage of the cheaper rates and my newly acquired old codger's card.

    Let's hope there's lots in March you cheer us all up - and especially for you. Hate to think of all that discomfort and misery the breast and ovarian cancers are causing.

    Sending loads of love, sympathy and a nudge hoping to make you smile.

    Love Annie xxx

  • Annie

    I am looking forward to the Members' Day. I will have to register asap and sort out my travel to London. I will be travelling from Liverpool and one of the girls did say they might join me but I can't remember who. I'd better book quick in order to get a cheaper deal. Thanks for the reminder.

    Regards

    Col xxxxx

  • cheap tickets usually go on sale no earlier than 3 months before the date of travel and sell out quickly! I go to London and Devon quite frequently. The Trainline is quite good but Rail Easy often have very circuitous routes!

  • It wasn't Gwyn, was it?

    Love W xx

  • Might just be our lovely Gwyn. If you get three of you one might travel free?

    Really looking forward so much to seeing you Col. Hope all is going well with you. I've been thinking of you loads. xxxx Annie

  • Thanks Annie

    Think it might be Gwyn. Will check my emails. I've sent email to Ovacome to register so just need to book travel now.

    I'm doing fine at the moment. Still on antibiotics but the infection seems to have cleared up. Scars all healing nicely and am getting used to my 'bag'! Off to the Lakes next weekend with my sister for a bit of r&r with some spa treatment thrown in. My sister has just finished her chemo for Hodgkins lymphoma, so we are both in need of a treat!

    Really looking forward to seeing you and others on the 18th.

    xxxxxxxx Col

  • Dear Col,

    You are coming on 17th aren't you? It's not a problem if you're not but if you want to cancel let me know and I'll see if we can fill your room booking and look forward to seeing you on Members' Day on 18th.

    Have been wondering how everything is going. xxx love Annie

  • Sorry Annie - yes of course I am coming down on the 17th. Can't remember if you sent me details in the post of the hotel etc. If you did I've put it somewhere 'safe'! I've still got the emails though so I know where the hotel is. Really looking forward to it. xxxxx

  • Hi Fitzy,

    It was me that enquired about traveling together, but I will be traveling from Chester though (I am not sure how easy this would be) shall I Pm you my email address?

    Love x G x :-)

  • Hi Gwyn

    I thought it was you. I do have your email address in the emails from Annie so I'll get in touch. I too am not sure if a Liverpool train stops at Chester. I'll let you know.

    Many thanks

    xxxx Col

  • If anyone's travelling from S Wales I've panicked about the cost of rail fares on a Friday and Saturday and have booked a rail ticket for a train leaving Cardiff at 11:55 on Friday 17 May. Anyone else found the same experience of travel to London at the weekend? Transport and accommodation can be so much cheaper mid-Week.

  • Margaret

    The girls have said it all. Rant as much as you want. I'm used to losing my patience where OC is concerned and nobody seems to understand what it's all about. But I can sysmpathise with your colostomy problem. Following my surgery in Dec I now have a permanent stoma, which hasn't been allowed to settle yet due to me having to take antibiotics for 6 months! I spend a lot of time in the bathroom these days!!

    Good luck with your treatment next week. Hope all goes really well for you and I hope to see you in London in May.

    Love and hugs

    Colette xxxxxxx

  • Good luck with your stoma! I irrigate now and have small caps like large elastoplasts. I feel much better about it and can usually cope quite well! This is the only place that I feel at ease about moaning as it is the only group that can empathise with how "down" one can get from time to time.

  • Hi Margaret

    I haven't posted for a while or been on the site so was sad to see that you have had a rough time, how awful some people are. I hope you are feeling better today and the rant has allowed you to leave the bad mood behind. You are always so upbeat and have often cheered me up with your posts so a huge hug to you and fingers up to the naysayers

    Much love Amanda

  • Many Thanks Amanda

  • Hi Maragert,

    Massive hugs from me too sweetheart, your post only just came through to me or I missed it somehow. But when I read it I was close to tears because you are a true trooper to carry on regardless as you so obviously do.

    People say the most appalling things sometimes and indeed it does hurt when you are feeling so worn down by everything going on.

    You are an amazing lady, I admire you so much. Please take good care of yourself, tomorrow is a new day, a fresh start for everyone - it may take a few days before you feel as though you can move on from this but when you can cope with what have, this is nothing in comparison it was just the icing on the cake and I guess by this time you`d had enough. It happens to us all.

    Forgive and forgive yourself, it works for me.

    Lots of love to you from Tina xxxxx

  • hi! margaret I too have terrible nuropathy in my feet not so bad in my fingers.I cant feel my feet nearly right up to my ankle now and so so painful The only thing that helps me or gives me some relief is putting a hot water bottle on them when I am in bed. I put fluffy socks on and there is cover on bottle so as not to burn my feet out of lack of feeling.It really does ease the pain and makes you feel like your feet are alive again Try it and see what you think.We are all entitled to a bad day to let of steam and you have been through the mill.xx hugs and kisses from me,una

  • Oh I am a great advocate of the HWB! My feet are only numb on the balls of my feet & my toes but golly they do get cold. I have two HWB's with furry covers! One for my feet and one for my back which aches permanently. At least the sciatica has descended from screaming agony to tolerable discomfort. They say it has nothing to do with the chemo but my physio says that a lot of his patients with simila problems have had chemo! I have a copy of the MRI scan showing loose ligaments.

  • Margaret, my hubby always has problems with his back. I got him this heat blanket .You wrap it round your back and it has a velcro fastening and you plug it in to socket. Its just like an electric blanket but unlike the h.w.b. you have permanent heat and dont have to refill it all the time. he said it is great as you can put it on watching t. v. reading or while in bed.I think I got it in argos a while back but it was recently on sale in lidl or i am sure health equipment shops or the internet would have them It would be good for easing your pain margaret.unaxx

  • Hi Margaret,

    I am astounded to read all that you are suffering and I feel for you. Reading your post makes me think I have got off very lightly even with numb toes.

    I hope that I would cope even half as well as you should my condition deteriorate.

    God bless you, dear Margaret.

    Kathleen xx

  • Oh dear! Did I make it sound that bad? Suffering is a bit strong! Just had a few "off" days! But thanks for the good wishes and concern! Be carful of those numb toes!

    M

  • Hope you're feeling a bit better today. I am always amazed at how you cope with everything, never moaning, just getting on with things. But hey, we're bound to blow sometimes and better out than in. I too have felt guilty about my feelings towards breast cancer and it's good to know I'm not a wicked person for feeling this way. I know it's just as debilitating and frightening but the treatment for it has come a long way. Hopefully it will be the same for oc in years to come. Hugs coming your way. Chris x

  • Open house today and 40 people expected! As soon as the stoma has finished its "flush" i shall be making crudites, cutting up bread, putting out my pies, pasties, pates, cakes and fruit salad. The only things not home made are the bread, cheese, butter and cream! Paper plates and serving dishes are all out ready and guests are expected at 2PM. People never cease to amaze me. It was postponed from Jan 20th and people were asked to let me know (in plenty of time) that they still meant to come. Two people rang yesterday evening and one left a message on my answer phone while I was having dinner with my sister & her husband. Luckily I always over cater!

    Then next week I shall be making casseroles for my hot pot supper to raise money for OC charities next Saturday. Chicken with leeks, beef in ale, lamb tagine and quorn chilli with rice or cous cous. I am asking for a minimum of £5 donation and running a couple of quizzes at £1 each with prizes. (wine or chocolates). I am aiming for a minimum of £100 to split between Ovacome, Target OC and, if I raise enough, some for either Macmillan or Marie Curie. Probably the latter as I already donate a monthly sum to Macmillan.

    As a result no time to feel sorry for myself!

    Love

    M xxxx

  • Wow, this is an impressive list of catering and fundraising. mmm that Fundraising supper sounds delicious - and the quiz would be so much fun. Will you be posting up some of the questions so we can join in?

    Marie Curie make a fortune in Wales on 1 March as their emblem is the yellow daffodil so people here buy it for St David's Day.

    If you haven't done so already it might be worth asking Ovacome and Target Ovarian Cancer Research for some metal pins to sell for £1 each. You don't have to pay for them to receive a batch. Target also do miniature manicure sets which are rather good.

    Good luck with your open house today. xxx love Annie

  • Hadn't thought of that! It might be too late to send for pins etc! I had to throw my lovely pork pie out! There was no room in the fridge s I put it in an airtight tin in my cool larder but it went mouldy! Only a few spots but not worth risking!

    My quizzes are 1 literary, 1 foodie, and a friend is supplying a first mline of number one songs quiz and the prize which is a bottle of Indian brandy!

  • Thank you Margaret for you 'outbreak' - I've just come across it and it is just what i needed - permission to be cross and moan ( i'm usually knownas a patient wee soul!) but this weekend struggling with last week's cisplatin has really got to me. I don't have a half of your reasons to growl , not near - but I decided to give it a bash anyhow!!

    Hope youfeel better bynow and that things will improve for a spell.

    Well done You - Bunty.

  • Growl away bunty! Isn't cisPlatin awful? I had it last time and felt really awful after each cycle!

  • Dear Margaret,

    Have only just read my emails, and felt i had to tell you i have always found your posts very reassuring, although i do not post myself very often i have to say i think you are a very strong inspirental lady, dont listen to the negative crap you dont need it on top of what you are dealing with.Hope you are back to your old self soon, take care.

    Love Pam xx

  • Yes Margaret - cisplatin is the pits - but -I am allergic to carbo. and in its favour cisplatin does seem to make my CA125 tumble - a bit any how. My cancer seems to be platinum sensitive but then so am I !!

    However I am in a better place today because ny oncologist ( a terrific patient positive man) decided to give me a week off my chemo. when I attended for it yesterday - so no F.U. gemcit ibine tillnext Mon.

    Been having a wander round my garden this morning and my bulbs are all jumping - what has a woman confronted with irises,snowdrops,crocuses and others abouit to flower got to complain about? But I will stillhave the odd growl!!

    Hope your day is going well - love - Bunty.

  • Hi Bunty!

    I am allergic to Carbo platin too! Went into anaphylactic shock twice! Interesting experience if one I am not anxious to repeat! The cisplatin did not bring my CA125 down and made me feel like s**t so we stopped it! Next time I dare say it will be Gemcitabine - is that another "is this the quality of life that I want?" kind of chemo!

    I have made Lamb Tagine, Beef in ale, and Chicken and leek casseroles today. My tagine is very spicy! the Ras al Hanout mix is a strong one! on Friday I shall make quorn Chilli, Boiled rice and cous cous! I should really think of a suitable pudding! I am asking a minimum of £5 a head for the supper and running some quizzes at £1 per sheet with the aim of raising a minimum of £100 between Ovacome and Target OC!

    I envy your garden! My Yard does not have much space and I cannot do much bending! The chap who is supposed to tidy it has not been since early last summer. My Jasmine has finished flowering and the only things on show are a few crocuses and snowdrops.

    Roll on Summer and my beautiful spirea and honeysuckles!

    M

  • Go ahead, I think it's a brilliant idea to get it ALL off your chest (oh dear I do fall into those accidental puns, sorry but its the best phrase for this!). That is why we're all on here, isn't it? To share the grumps and moans as well as the fears and experiences. That's what makes this forum so brilliant. What makes YOU brilliant is your unfailing humour and self-deprecation despite some flipping awful stuff going on. Anyone who doesn't get that is cruising for a bruising from my side too...

    Love

    Sue xxx

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