what's wrong with me?

Public Archive
1

hi all

not posted for a while but still read your comments.

i was wondering if there was anyone like me - my story…

in march 08 i was dx with invasive breast cancer grade 3.
had 2 op’s to get clear margins plus all lymph glands removed (right side. then i got 4 x fec and 4 x tax, then 5 weeks of rads.

i coped fairly well with fec…usual sickness, hairloss and fatigue.
when i got tax 2 days later i was screaming in pain and even asked my hubby to help me end my life, the pain was in my bones. the pain was there 24/7 and no painkiller helped. the pain eased when tax was stopped but has never completely went away.

now it is 3 years later and and i have pain everyday.

the surgery area hurts sometimes really bad (breast and underarm), it feels like someone is sticking needles in me the pain goes over my ribs an the same side and round to the ribs on my back and down my arm. my bcn says it’s nerve damage and after this time it is probably permanent.

my collar bone hurts and right shoulder blade, i have been told that the rads caused that. i get breathless easy and was told that the rads might have clipped my lung.

my legs started to hurt when i got tax, i can fall over, when i go out i need someone with me. my muscles and bones hurt everyday. i was standing at my kitchen sink and next i was on the floor - that’s why i need someone with me when i go out. i am fatigued a lot. my memory is bad and my concentration, i also feel to put it bluntly - thick - . i had just finished a college course before dx but don’t think i could do that again.

before cancer i had a job i loved but lost that ( was medically retired). i used to go to the gym and run on a treadmill, i can’t do that now. i get really quite low and sometimes want to end my life.

i went to my gp and he just kept telling me that i’m alive. i told him i have no quality of life and he just said i’m alive and to work on what i can do now and not what i used to be able to do.

i have had arimidex, letrozole and tamoxifen. i had bad reactions to those and am now on exemestane or aromasan as it’s also called.

i would love to get my life back and get a job but that’s impossible, i have had to stop driving the car due to the probs with my legs and right hand side, my arm has a weakness now.

i get really stressed when ATOS thinks i should be able to go back to work in a few months. i don’t want to have to claim benefit but i have too. the last time i saw atos they wrote down stuff in their report that can be misleading, my hubby phoned DWP and put in a report. in the end i/we had to put our phone on speaker and rectify the report. on thing that was said was that i’m able to supervise a child, DWP thought that the ‘child’ was about 3years old. i told DWP that the ‘child’ was my daughter and she was almost 18.

anyway sorry for babbling. i just want answers as to what i wrong with me and i’m not getting them from anyone. my bcn says that the onc doesn’t know why i’m like this. i’ve been told that i’m a mystery to them.

oh plus as my cancer was a hormone one my overies were to be removed, but as there are gyna cancers in my family i had a hysterectomy one year after my cancer op’s.

2

Hi Vodka,

Oh dear, you really are suffering but you have come to the right place to ask for support.

My op was Dec 2008. Finished chemo May 2009. Then had a year on Herceptin. Not the same as you but there will be someone who will respond. I did not think that I would ever feel normal again and frankly got sick of those who kept telling me I was fine now the treatment had finished. Fine was not what I felt. I too hurt all over, could not sleep for more than 4 hours and honestly wished that I had said no to all the treatment. They say that the chemo is in your body for 2 full years. The Herceptin was not too bad but I was told that 6 weeks after my last infusion I would feel great. It never happened. I am now 1 year past Herceptin and more than 2 years past chemo and have noticed a gradual improvement. I don’t hurt as much and am sleeping normally.

I can understand that the pain you feel is probably nerve damage. I cannot understand the rest of your problems. Is there more than one doctor at your practise? Could you see a different one? There are what are known as pain clinics and it might help if you were referred to one.

If I were you I would start by speaking to one of the trained staff on BCC, number above.

I do feel for you as you are obviously suffering badly and it does not help when you are just told that you are a mystery.

Take some action now, there might be help around the corner.

Good luck,

E

3

oh gosh, what a mess. First of all I dont that doctor sound the best person to be talking to. “at least your alive” I think you should post that on the ‘well meaning but terrible things people say’ thread

There is a form of therapy that helps you let go of the past, look at posative bits of your life and build on that, but I would think that it is totally wrong for someone in pain recovering from cancer.

I would think you need two things. Professional therapy and pain management. but rather than going through the GP can you go back to the hospital? Are you still in touch with your cancer nurse? the hospital could have some services or charity that they can put you in touch with.

or as suggested above ring the helpline, they might tell you how best to get the help you need.

I am so sorry to hear of your plight, it sounds as if you have been standing in the middle of a big space shouting “help” and no one (except your hubby) is answering.

I hope someone with a bit more relevant knowledge and advise comes on soon

4

Hi Vodka

I am so sorry to read your story, I have no answers for you I’m afraid but just wanted to let you know that there are poeple here who care.

Emmbee & OAL are right, give the helpline a ring as soon as you can, they may be able to put you on the right road.

Great big hug to you

DaisyGirl xx

5

Hi Vodka

As everyone has suggested please feel free to call our helpline on 0808 800 6000, the lines are open weekdays 9-5 and Sat 9-2, our helpline team are here to offer you support and information.

Best wishes
Lucy

6

thanks for all your comments. i’ll phone the help line later.

7

hi, I am still ploughing through Susan Loves book and last night she was talking about pain after surgery. She said that some pain is caused by nerve damage and can be helped by some form of anti-depressant drugs. She said just because you are not depressed does not mean you should not take them, they act on the messages from the nerves to the brain.

I am sure a pain clinic would have something like this up its sleeve.

8

Dear Vodka,
Can you get the Helpline to work out a “Script” for you to ask for referral to a Pain Clinic, perhaps through the Breast Care Nurses,or your surgeon, oncologist or GP.
They all have a responsibility to you. Yes, some people have big problems with pain after treatment, but just saying it happens is not an adequate response to you.
My friend with chronic pain from a non cancer cause went to “Pain School” after assessment by our local Pain Clinic in a very ordinary District General hospital.
She was taught a lot about how pain happens and how to deal with it, reduce it etc etc and she gained a lot from it.
Good Luck

9

Vodka,
All I know about is the pain in bones and joints which is a side effect of the aromatase inhibitor drugs.
After three weeks on arimidex I was in agony if I sat down for a while and tried to get up - I had to clutch my desk and just wait until the pain went before I could start walking (very stiffly).

Somewhere on here I found a thread which recommended Glucosamine & chondroitin tablets. I take at least two a day and I am fine with that but if I take only one the pain starts coming back. My GP said she would expect them to work but couldn’t provide them on prescription.

I do hope you can find some relief.

10

i am 2 yrs past diagnosis.i seem to have lost a lot of my dexterity and i drop everything.i struggled doing my previous job and found myself vaugue and knackered all the time so i left.

Things have improved in some areas and i am getting fit running and this is helping my mood and my fatigue. i dont take my tamox every day as my knees ache so bad i can bearly move and the fatigue meant i struggled to get up and stay up all day and i have a 3 and 4 yr old.

My affected breast and armpit are still tender and if i knock it even slighlty it takes my breath away. the ONC said this maybe permenent.

Cant say much more but i think a lot of us feel very similar to you but time is definatly helping as is exercise.

X

11

Poor you, the pain your suffering could be to do with the hormone drugs you are on. The reduction of estrogen can cause alot of aches and pains. I am 4 years clear and am having Zoladex injections and have lots of aches and pains espically in the operated breast and arm. Hope you get some answers soon.