:( :( :(

Hi ladies..

I have had a good week with my daughter its been good spending time with her.. The sad faces are because im peed off.. My leg pains have been murder,, And it has stopped me doing some of the things ive wanted to do this week.. I am in agony all the time i cant sleep because it wakes me up i cant walk when i get out of bed in the morning. I cant sit still because it hurts i cant move because it hurts,..... Im at my witts end. My doctor is making me feel like a nut job because he says i only had carboplatin on its own and this does not cause leg and feet pain. So by all accounts i must be imaganing the pain.. My partner doesnt understand. When i say im in pain he just rolls his eyes at me.. I swear this pain is real.. And i just want it to stop. Its constant now never lets up and im fed up... I know im pathetic im crying again as i write this and i know there are people out there worse off than me and for that i am sorry.. But i dont think i can cope with this pain much longer..

love suzanne

xxx

42 Replies

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  • Hi Lovely Suzanne,

    You are not imagining it there are plenty of people on here that have been on carboplatin and I am sure I've read that they hurt too..I can sympathise as my legs hurt as well..I feel like injecting carboplatin into your partner...see how he likes it...I don't think anyone understands unless they've been there..and it does affect different people in different ways...have a good cry.. it will do you good and a good rant as well...aaaaaaaaaaaagh ..have you read Whippet's blog on the food that will give you cancer?...my blog is above hers with the lyrics if you click on her link you'll hear it sung... it will cheer you up....we are all going to learn the words for members day next year...the song is written by a comedian Russell Howard it is great... Sending you my love x G x :-) 8-)

  • thank you G . xxx

  • where and when is members day Gwyn? xxx

  • Hi Suzannr,

    It is around the 26th May they haven't given a date yet, but Wendy said she'd let us know when they give a date, when they have got a date it will be on the Ovacome website...they did email me about the last one... Londen is a bit far to go..so I haven't been to any .particularly as it is so near to a bank holiday.

    You have some serious catching up to do with my poems...there's one about Shen's dog, one about Wendy's holiday in Skiathos (she's there now)and one about Jan's holiday in Dorset (she's just come home) just giving you this to cheer you up (I hope) we need cheering up with this weather haha.

    I hope you are feeling better with your bad pains, I think applying heat like a heat pad or hot water bottle helps...I personally don't think It's the menopause and the pain is real...they don't like admitting that it's the chemo and are really not that interested when you have finished chemo... Lots of love to you my friend x G x :-) :-D :-/ ;-)

  • By the way....Suzanne you're not being at all selfish...( your comment further down) and complain as much as you like.. :-) xx

  • Thank you Gwyn. I sometimes feel that i should just be happy that im in remission but its just not that easy.. And i struggle so much trying to make my partner realise that it isnt over for me,

    Thank you I hope your ok.

    xxxx

  • Hi Suzanne,

    Of course it is not over for you...I think this dreaded cancer stays in our brain forever (it doesn't go away) particularly when you still have pain as well ...no one really understands unless they've been there...not even the medical profession...It is a lonely path...If only there was a cancer support group near you that you could meet others...better still an OC support group...I found when I was on chemo they spread the OC patients out I don't think they wanted us to compare notes haha but they are wrong as ther is strength in numbers like breat cancer patients ...I hope you have a good day today and that the sun shines we feel better when it is sunny lots of love to our special friend on here x G x 8-)

  • Typo corrections.... .... "there" ....."breast cancer"...... "my special friend" but I am sure everyone feels the same so it is "our special friend" as well xx 8-)

  • Thank you Gwyn..

    I feel blessed that your in my life right now.

    Your My special friend too.

    xxxx

  • Hi Suzanne,

    Sorry you're having this pain. I suspect it's as much to do with the menopause as carboplatin (although frankly, a Dr cannot tell you how you will react to any drug). I used to find 'devil's claw' tablets really helped with the cramps. pains.(including leg pain) and tendonitis I suffered from for the first 2.5 years after surgery and carboplatin.

    Hope you feel better soon.

    Isadora.

  • thank you isadora.. i will try that. infact ill try anything. xxxx

  • Hi Suzanne sorry your in so much pain . Do NOT let anyone fob you off . Have they explored the possibility that this is from your back or hip as maybe unrelated to your chemotherapy ? .

    Also i dont know what you have been given for the pain but they should be able to look at this and change this . Also what about a pain management specialist . Feel free to moan here . Glad you have had a well earned break from work

    Ally

  • HI Ally.. Thank you. I have got an appt with a pain management consultant but not till the 2nd october, The thought of waiting that long makes me want to cry.

    xxx

  • I know how you feel re the leg pain mine hurt at the moment as I had my 4Th chemo on Wednesday and each time I have one my legs hurt more. I get my husband to massage them with deep heat its lovely although the whole house now smells of it. I find it hurts to even walk up stairs. I have read up on leg pain and they say certain foods help but I think with us its the chemo drugs and nothing really does help. Its not in your mind its REAL. Hope the pain goes soon Love and Hugs Babs x x x

  • Thank you babs.. I hope your ok and i pray that after your chemo all is well.

    Love suzanne

    xxx

  • Dear Suzanne, If you have leg pain your GP and partner should take it seriously. It's not as though you can only have one disease at a time. It might be you have a trapped nerve, perhaps you're exhausted as you've worked throughout. I think you definitely need more sympathy from home - particularly your partner. You should also go back and ask for alternative pain relief. Margaret from York is currently in Dartmouth is suffering really badly with Sciatica and has a machine to alleviate pain. I wonder whether it's worth asking her for advice.

    If your partner is rolling his eyes we're certainly not.

    I loved Gwyn's blog. If your partner doesn't understand what it feels like to have chemotherapy your oncology department might well give him a shot to see how he likes it.

    I'm sending lots of love to you as I don't think you're getting enough just now. Xxxx Annie Whippit

  • Thank you so much Annie. I am lacking love and understanding..

    xxx

  • Hi Suzanne

    Sorry your in so much pain and not getting the help you need to manage it, regardless of the cause. The best advice iI was given when first diagnosed four years ago was that there was no reason for me to put up with pain when there were so many options available to deal with it. Working with my lovely GP I ended up with Oxicontin 10 mil 12 hour slow release. They have been amazing. Ive had long periods when ive not neded them but I'm taking one a day now every morning.

    This fourth recurrence of OC is causing me moderate pain and discomfort all around the abdominal area constantly, one pill, and an hour after I get up I'm pain free and enjoying the day. I would urge you to get some help with this, it's bad enough dealing with OC let alone pain which can be sorted. May be the Ovacom nurses could point you in the right direction, lots of hospitals have pain management nurses, the Macmillan may be a possibility or even your district nurses. The local hospice is another possibility. I've had contract with all of these over the years and without fail have been fully supportive and helpful.

    Maybe somebody can some up with a few ideas on how to get across to your partner that what your going through deserves more support than eye rolling. Annie has made one suggestion and I'm sure the ladies on this site could find others, I know I could but it's not printable! But seriously you need some help with pain management and it's well worth making the effort so you can get on with your life and enjoy it again. Good luck. Meryl XXXXX

  • Thank you Meryl.. Your right i do need more support than eye rolling.

    xxx

  • Oh Suzanne! Of course the pain is not imaginary! I had it too! I finally got paracetemol and ibuprofen on prescription. None of the Onc's would accept it had anything to do with the chemo! I was given an MRI to show no metastasis into my spine which showed slight slippage on 2 sets of discs, nothing to worry about they said so I put up with the pain and took pain killers! I finally ended up with excruciating sciatica (now in 10th week) with referral to physio who says chemo damages nerves & he sees a lot of it.

    Some practical suggestions:

    Regular painkillers as per hospital regime - set the alarm on your mobile to take paracetemol, paracodol (beware constipation), ibuprofen etc;

    Accupuncture;

    Buy a gym ball and do regular gentle exercise on it, sitting on and wiggling your bum back & forward & side to side;

    Use a walking pole (looks better than a stick), and a wheeled shopper (i bought a jazzy one);

    A hot water bottle in the small of your back or under the most painful part of your legs;

    Heat patches, heat gel, voltarol gel, spray (hot or cold) but be careful not to use ibuprofen gel with tabs and voltarol only sparingly if taking ibuprofen.

    Hypnotherapy and relaxation tapes;

    Swear! It gets a lot out of your system! When I have to drive the air in the car turns puce!

    Don't be ashamed to cry! I live alone so i just howl sometimes!

    Try a TENS machine. I bought one and, while the pain has not gone and I can't feel it working the level of pain has dropped from 'screaming pitch' to 'just about tolerable'.

    Tell your Dr that whether or not the cause is psychosomatic the pain is real and you want something for it. I don't cry easily (i'm a tough old bird) but bursting into tears in surgery worked miracles on the painkiller front!

    Finally treat yourself! Do whatever you need to to ease things! A spa day with massage such as Reiki could help.

    I am thinking of you and sending positive vibes! Hang in there girl and don't let the "B's" grind you down!

    As Annie says I am suffering at present!

    I had forgotten about Devi's claw, I have some gel which I have used to relieve the arthritis in my wrist! I think I got it from Boots or Holland & Barratt!

    Pain is real! Your experience makes me glad I do not have to convince anyone except my GP and he is very sympathetic. I am now getting Gabapentin, an anti epileptic drug, that is used for pain control in small doses as it acts directly on the nerves! I am still in pain but it is tolerable!

    Ah well alarm has just reminded me it is time to irrigate the stoma! Isn't life fun!

    Love M! Xxxxx

  • Hi Margaret. your reply made me want to cry.. I feel so selfish worrying about myself when people like you are still going through so much.

    All of your advice is great and i am going to start trying different things.. My GP gave me gabapentin the other week but if im honest i havent felt the benefit from it. I have an appt on the 2nd oct with pain management. I am soooo praying that they can help me..

    I am so so sorry for my selfish outburst I pray for all of you who are fighting with all your might. I pray for full recovery.. I love you all .

    love suzanne

    xxxx

  • Outbursts are what we are here for! We all understand! After all we all do it!

    I am bursting with pride! Look me up on facebook (Margaret John) to see why! M

  • Hi Margaret - I looked up your name to find you on Facebook but think I need an email address. Would love to see what makes you burst with pride! xx Annie

  • Annajohn40@yahoo.co.uk! Whole family is rowing on Friday!

  • Hiya ive tried to find you on facebook. I cant. Please search for me and add me..

    Suzanne J Loftus

    xxxx

  • Don't know what it is with facebook! It doen't recognise you either! Anyone know how we should be doing it?

  • Don't be silly! Not at all selfish! Your pain is your pain and not bearable! My GP warned it can take a while for the gabapentin to take effect! I am hoping to get to the pain management clinic when I get home! The most depressing thing was the physio saying it might never get any batter! Well not if I can help it! I really should rechristen myself "Donna Quixote" as I am forever tilting at windmills! Dragons beware!

    I had my scalded hand dressed yesterday! Compliments on how well I had managed it so far! Worst thing was I slipped and fell on my way down into Dartmouth and was a bit shook up! OK today though! Lifeboat paramedic insisted on dressing grazed knee - total overkill complete with support bandage for small graze - then ordered me to minor injuries unit with hand! Must admit the dressing is a sort of second skin and much more comfortable than the melalin!

    Let me know how you get on at pain clinic! Any advice you get please share! I will try anything, up to and including hanging from the ceiling by my toes!

    Love M xxxxxxx

  • Typo slip! Pain may not get better! Batter is what I would like to do to it LOL!

    M

  • Hi Suzanne

    I am also sending you lots and lots of cyberhugs and cyber love.

    It's awful that you are still suffering and your doctor sounds useless . The other ladies have given you brilliant advice as always. Try really really hard to remember to take the painkillers regularly. Gabapentin will take a while to work and needs to be taken as well as ibuprofen and paracetamol. If it hasn't worked and if you have been taking it at the prescribed dose you may want to consider going back to your GP and asking for an alternative.

    It's no wonder you feel terrible , 48% of people with chronic pain develop clinical depression as a result. On top of all of this you have had surgeries and all sorts of other stuff to contend with. I also suffered terribly with pain after both my ops but this is now under control two years after the second one with low dose amitriptyline. Fingers crossed so will yours be too as time is a great healer. Everybody I know who has been to a pain clinic says that the staff are great and the advice really helpful.

    Take care .

    Love

    Charlie xxx

  • Thank you charlie. Your message is heart warming. I cant wait till the 2nd oct to go and see pain management I just hope they can make things more bearable.

    Love

    suzanne. xxx

  • My GP said the dose could be increased up to 16 gabapentin a day! I am taking 3 at the moment! Heat pads are helping too! I take the GBP with paracetemol and Ibuprofen, sometimes I add in codeine if it is really bad!

    Here's to pain reduction!

    Love M

  • Hi Susanne,

    I was having terrible cramps in my toes and leg and foot pain especially at night and first thing in the morning , this is an old wives tale i was told, and i thought anything is worth a try PUT SALT INTO A BROWN PAPER BAG AND PUT IT BELOW YOUR MATTRESS I PUT IT BELOW THE MATTRESS PROTECTOR JUST WHERE YOU REST YOUE FEET, AND FROM THE FIRST NIGHT I HAVEN'T HAD ANY PAIN IN TWO WEEKS I HOPE THIS WORKS FOR YOU PLEASE LET ME KNOW. JAN X

  • Hi Jan,

    This sounds a little strange to me. But hey ho maybe i will give it a go.

    Love suzanne

    xxx

  • Hi Jan!

    As an old ex wife I'll try anything! LOL!

    Margaret!

  • Oh! suzanne I really feel for you.I am in 3rd. line chemo and on weekly taxol at theminute.I have just had my 14th. of 18 chemos and my feet and ankles are so painful so I have an idea what you are going through,everyone is right unless you have experienced it you cannot possibly guess how bad it feels.You take a drug for the cancer and end up damaging some other body part.the lesser of 2 evils!You are not on your own as i know what its like and my heart is with you.xxx

  • Thank you

    I find it overwhelming that when you are going through so much yourself that you find the time to care about me.

    I hope and pray that you get through your chemo with as little discomfort as possible.

    Your in my thoughts.

    Love suzanne.

    xxx

  • Hi suzanne!

    The strength of this site is that we have all got time for one another! That is what keeps me going!

    Love M!

  • remember suzanne you are not on your own.we are all in it together.thats whatis so great about this site we all understand as we are all in the same boat.keep the chin up and keep smiling and i will keep you in my prayers.xxx

  • Hi Suzanne

    Like you I have been suffering with pains in my legs, arms, hands and neck now for the past few months and yes it is excrutiating pain, this was about five months after finishing 1st line treatment, each time I told the oncologist who suggested I should see a rheumatologist which took 3 months before appointment, they have said it is probably due to the chemo even though the tests were showing inflammation, I am now on second line treatment and have discovered that after the chemo my pains miraculously dissapear which has been put down to the steroids given just before the chemo. I will after this lot of treatment has finished enquire if I can be given steroids if the pains are as bad again, as I believe nobody should have to suffer this amount of pain when we are already trying to fight cancer.

    What I am saying Suzanne is perhaps you could ask your oncologist whether steroids might be able to help you. please let me know how you get on, I can honestly say I know how you feel so sending lots of hugs and cuddles

    bettyann

  • Hi Bettyann

    I have an appointment with my oncologist on monday I am going to ask him if he will do anything for me.. I just feel that your right the fight is hard enough without the pain.

    Thank you for the hugs and cuddles I sure need them at the moment. And i am sending some straight back to you.. Thank you.

    love suzanne. xxx

  • Wishing you well for Monday!

    Hugs!

    Margaret! Xxxxx

  • Hi there Susanne,

    I too had hell with leg pain and made a note from advice on this site (sorry can't remember who gave it) that targinact had proved effective for them. also pregabolin which is used for phantom pain in amputees. Not that yours sounds phantom but you may as well have as many options as possible to suggest to your onc. or pain management consultant. Sorry to hear you are in constant misery and hoping you can get it sorted. Hugs and sympathy, Liz

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