the pain of it

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I was dx 4 years (ago 12th March 2008).

I have had 2 op’s to get clear margins. I have pain in my surgery area - breast and underarm. The pain varies from mild to severe. At it’s worse which happens frequently i feel like i’ve been kicked in the ribs and am being hacked at with a knife. The pain goes over my shoulder, basically the whole right side (surgery side) i have been told this is nerve damage and after this time will be permenant. my collar bone and shoulder blade hurt and i’ve been told this is the rads that have caused this. the breathlessness that i get i have been told it’s probably the rads.

my legs give way and i fall over. i am not getting an explanation for this. my legs really hurt and i now use a stick outside. but can’t out on my own. i am in pain right now - moderate pain.

i am in pain every day and i can be mild to moderate to severe. I can’t take pain killers as i end up with all the side effects, i’ve tried lots of different ones.

I had a job i loved - have lost that, they medically retired me.
I used to go running, now i have trouble walking.
My memory wasn’t great but now i feel vacant alot. I do try puzzle games to help those little grey cells but i have good days and bad with that. I also have fatigue.

I have now got DWP to deal with and feel really stressed. i want to work but can’t. i would have to tell a future employer about my probs.

I have thought about stopping my exemestane, and have found tabs in a health shop to help with night sweats (haven’t slept properly for 4 years). these tabs have a warning against people with an oestrogen dependent tumer(mine).
only thinking about them, haven’t bought them.

i am so stressed and depressed and dwp makes it worse. if my oh and i could manage of his wage then i wouldn’t claim. sometimes i want to end my life as it’s changed so much but i see my teenage kids and change my mind.

do you know we’ve not had any visitors this year. most people that phone are only trying to sell stuff. some friends and family turned their back on me when i was dx.

what’s the bigger pain, the actual pain, DWP/ATOS, or the lack of company?

sorry i just wanted to let of some steam.

love and hugs to you all. xx

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Dear vodka I am sorry to read that you are struggling

If you feel it would help to talk things over you are welcome to call our helpline, our team are here to offer you support and a listening ear to help you through

Take care
Lucy

Helpline 0808 800 6000 (wekkdays 9-5 and Sat 9-2)

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Vodka,

On phone so hard to post, but I wanted to send you warm hugs. This BC crap just keeps on and on.

You might want to speak to your GP about your feelings, as that is not normal and definitely not a good place to be. Give the helpline a ring too. They’re very understanding and are a welcome listening ear.

CM
x

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thanks ChoccieMuffin for the hug.

I did go to my gp who took notes, i think word for word. i told him my quality of life was greatly reduced and he said “yes but your alive”. I told him i lost my job and can’t go to the gym anymore and he said “yes but your alive”. - idiot! what happened to the bedside manner?

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Vodka

I’m so sorry to hear how badly bc and its treatment has affected you, you definately need some further help, is there not another gp in your practice you can see. Yes you are alive but your continuing level of living obviously needs some further help. You probably need a referral to some kind of pain management area, if you cant take painkillers, then you at least need some advice on other options, and the falling over needs checking.

As CM says speak to the BC helpline and possibly also the macmillan as they may be able to guide you through the benefit maze, or if you have a local citizens advice go in there and ask for help.

I know how you feel about people who you though would be there not being, some of those I thought would be here for me, I have hardly seen since I was dx. Try not to turn people away though and reach out to some of them, if they still turn away then your well shot anyway, but you may find that some of them will be glad to be welcomed back into your life and asked for support and just didnt know how to approach you, It is a two way street and sometimes we can push people away when we are wound up in our own problems, I value some people so much more now since my dx.

Dont try to do it all on your own, best of wishes and love xx

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Hi Alex

I was at the pain clinic and they gave me tablets which i reacted to. Then they gave me cream to which made things worse. I have tried a tens machine but is no good. I am planning to visit my bcn tomorrow at her drop in clinic. The pain clinic was supposed to phone me back nearly 4 weeks ago but they haven’t. This happened before and when my OH phoned for me they said that they’d forgot!

I think i will contact McMillan re DWP and see what they say.

hugs to all x

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Hi Vodka, I think I remember you posting 4 years ago when I was diagnosed. So sorry to hear you have been left in awful pain.
BC the gift that keeps on giving!
There are many many things the pain clinic can try. So please get back to them and make another appt ,maybe ask to see someone else if that would make you feel better. I guess if you don’t get in touch they will assume something has worked. (however it is shameful that they did not return your call) Ask about maybe accupuncture, injections or trying different drugs. I know there is an anaesthetist at my hospital that is researching into pain after BC surgery. So its maybe more common than you think unfortunately. Be a pain and keep on at the pain clinic until they find something that helps…or refer you to someone who can help. Maybe write to them if that helps?
I hope you get some relief soon,love n hugs
Dot
xxx

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Vodka

Keep pushing at them its not good enough that they have forgotten you, you need to get back on to them 1) to get the help you need and 2) because being forgotten is probably making you feel emotionally worse.

I know its hard but you are tough, you know that already, you’ve got through everything so far, keep pushing for help and dont stand for excuses

Bes of luck xx

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Vodka, I empathise with you on your GPs bedside manner (or lack of it). When I was near the end of treatment I was suffering from bad panic attacks and a lack of sleep as I was having nightmares. My clinic told me to ask my GP for permission so they could refer me for counselling. He said to me I didn’t need a psychologist, I just needed to go away, accept I’d had cancer, put myself back into my life and get on with it. I was just appalled that a doctor could speak to a patient like that, especially one who’d had a life threatening illness and a very hard time on some of the chemo treatments. I went back to see another GP a few weeks later and felt I really had to assert myself, it was so hard.

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Back on a keyboard, and gobsmacked by your GP’s comments. Yes, you KNOW you’re alive, but it’s a question of QUALITY of that life. I’m sure he/she would take seriously someone who hasn’t been through what you’ve been through that presents with the symptoms you have, so why not you? See if you can book an appointment with one of the senior doctors in your practice and have another go. Isn’t it ridiculous that we should have to fight so hard for what we need, and what we DESERVE.

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I was diagnosed Jan 2008. TAC Chemo, bilateral mx with axillary clearance then rads. I have very painful breastbone, shoulder and ribs on side I had rads. When I mentioned this at one of my check ups, I was told that the treatment had saved my life and I should expect some side effects! The peripheral neuropathty in both feet, lymphodema in right arm and horrible red marks spreading across my chest above neckline, courtesy of rads I am told, are minor compared to everything else. My Doctor was really supportive and suggested counselling so I went to my local McMillan drop in centre and they arranged a series counselling sessions for me which really helped me cope with everything else. I am now involved in fund raising for Cancer Research, McMillan, Marie Curie and our local Primrose Breast Care Centre, I find meeting people and getting really involved helped take my mind off what I was suffering. Good Luck and I hope things will improved for you,

Nonny

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Dear Vodka

I remember you from 4 years ago too (dx April 2008). It sounds awful what you are still having to go through. I’m glad others have come up with some sensible practical solutions, like MacMillan, which you’re going to take up.

Just wanted to add my hugs to theirs and wish you all the best.

Kinden
x

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Dear Vodka

I’ve sent you a PM.
Elinda x

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thanks for all your comments and support.

cherub - i thought my gp was bad, i think yours tops mine on the bed side manner.

ok we’ve all had treatment for bc and yes some are left with probs because of this, but gp’s really need to understand this and learn to be more sympathetic.

I saw my bcn(lovely person by the way)who didn’t know why i was still like this nor did my onc. I told her that a professor of chemo (whom i saw at the pain clinic) has said that the chemo has caused my probs. I told her that i wasn’t the only one.

I would have thought that an onc would know about probs due to chemo.

Nonny,
good on you. i would like to do what you do but my brain switches of and i become ‘vacant’, i am aware of this and it is embarassing. fatigue comes on sudden. like now!

bye x

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Vodka - I think sometimes doctors are in complete denial about the problems that occur following treatment. My surgeon doesn’t want to hear about my shoulder pain or my lymphodema not because he doesn’t care (because he’s proved over and over that he does) but because he feels bad/guilty about it. My Onc simply won’t have it that the severe acid reflux I developed 5 days after my last chemo is a result of the chemo even though I’d never even had indigestion before.
I think that sometimes they want to heal and when that healing causes it’s own problems they can’t cope with it.

To me, it’s not about blame anyway but I do want someone to listen and to understand.

I am lucky in that I had a wonderful GP through treatment and I now have a new GP who is a young woman and she is wonderful too. I think many doctors don’t know what to do so they become dismissive or abrasive.

I do find it extraordinary that doctors aren’t more aware of problems post chemo. fortunately for most women they are rare but I’m sure there’s quite a few of us out there. I did though have some very strange side effects during taxotere and one of the Oncs explained to me that some side effects they see perhaps in every few hundred people and some may be in every few thousand people so they never come across them.

take care all, Elinda x

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Elinda, I’ve just read what you said about having strange side effects on Taxotere. I really think for those of us who’ve had Taxotere it leaves an awful lot behind in its wake, as it is such a toxic drug to tolerate. With the hell I had on it my oncologist’s registrar said at the time I was very lucky to have been able to tolerate the 4 cycles as not everyone is well enough for the last one. I really don’t think my knee joints will ever be the same, at 50 I feel as if I have the knees of somebody at least 20 years older. My oncologist told me it can take years for things like the steroids to be out of your system completely as well.

On the subject of GPs, I saw one who had no idea that radiotherapy treatment could cause your skin to break down and weep. I had a tiny blister appear under my breast on the day of the last treatment and after a few days I had to get it attended to. The practice nurses said they would need to get the duty GP who was covering that day to look at it. When I explained what had happened he just looked taken aback and said “oh, this was caused by radiotherapy? I’d no idea that could happen”. I could have accepted it from someone newly qualified, but this was a doctor who qualified in the late 70s so very experienced. I saw one of his colleagues when I was first diagnosed and he held up his hands and said “whoa, you’re talking to the wrong person, I don’t know anyhting about breast cancer”. Thankfully he has since retired!

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I got taxotere and my probs started two days after getting it. i still have lots of probs.

I got a lumpectomy. since then i have had lots of pain in that breast and was wondering if i asked for a mastectomy would that help. the pain feels like someone is hacking at my breast with a knife and the surrounding ribs feel like i’ve been kicked a few times.

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Good grief, I am so shocked my some of the doctors’ comments here - absolutely terrible. Vodka, I really feel for you, I have had an episode of bone pain recently (I have secondaries) and was in a really bad way for a while.

Pain affects you in many different ways: physically and psychologically. Lack of sleep also heightens these sensations. I think step one would be to try and get your pain under some sort of control. There are lots of drugs out there and lots of combinations to try. Do you have anything to help you sleep? Having a decent night’s sleep would also help you a great deal.

Is your OH able to help you chase up your healthcare team? If your GP is unsympathetic (or just plain ignorant!), perhaps you could see someone else. I understand that all this is hard work when you are in pain and suffering from acute fatigue but having someone like a friend or relative to help you would make things a little easier and bringing someone with you to appointments - if feasible - means you are less likely to be fobbed off.

Alison x