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Quality or quantity of life?

Hi all

i had stage 3 triple negative breast cancer last year and had it successfully treated however since then have got more disabled ? Due to surgery/chemo. I’ve just been diagnosed with the same aggressive cancer again! They have said my only option is surgery. I have concerns over this regarding how they will operate as I can’t lie flat anymore. I’ve asked what if I don’t want surgery because I don’t want to get more disabled and have even more pain that no medication can seem to control. I have 2 young children (11&7) and a supportive husband but can’t bear them having to watch my ms get even worse and be unable to do even more. Is it selfish of me to just want to get on with life and ignore the cancer?

what would you do? I just can’t bear the thought of getting more disabled and unable to be independent on self care and have my kids witness this. Also I can’t take anymore pain. I can’t sleep or sit for periods because of it and I’ve tried every painkiller and neuropathic ones too. Sorry for this post to be so miserable

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Hello there. First of all may I say you have no need to be sorry. It is not a miserable post. It is a post from someone in a difficult position and looking for help.

I am afraid I have few suggestions. I understand you not wanting anymore pain.

I know there will be people on here who can give you sound advice. I just wanted to say I am sending you a hug and letting you know you are not alone.

Anne

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You can’t ignore the cancer because it’s aggressive and untreated the prognosis must be very bad. So what you’re asking is it is better to succumb to the cancer rather than be treated and have to contend with the m.s. getting gradually worse? A truly horrible dilemma. A friend with m.s. who developed cancer said that one of the problems she found was the cancer people had little knowledge/interest in her m.s. and the m.s. people had little interest in her cancer treatment. You need to drill down and find out exactly what can be done for the pain - why you can’t lie down. I may be wrong here but you imply that letting the cancer do its worst spares you and your family the m.s. problems you envisage in the future. It’s not something to advise someone else on - I would seek counselling to help you and your family reach a decision. And whatever you decide to do no one should question your bravery in confronting this very difficult issue.

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cracowian, what a truly thoughtful post. this person is truly brave.

Loola i agree wth C, why cant you lie down? have you got osteopororis? MS well it shouldnt be that painful its nerve pain yes granted and some people do have it bad, but there are a ton of things out there, you dont say if it is RRMS or PPMS?

IF YOU have surgery for your cancer the odds are the after affects to your MS will slowly calm down and you should be free of cancer. you main issues for me are not the cancer, but the reasons why you have so much pain, you know not everything is down to MS. I would want to know why i cant lie down. sounds like something else is going on (not that i want to burden you more). I find sitting hard work too i have to say. thats one reason i hate going out, as sitting in a restaurant is a chore.

my legs go like mad spasms burning and painful and my back aches.

but i can lie down, although sometimes it hurts a bit when my back decides to go into a full spasm mode.

My sister had your cancer, twice, and had her surgery and sailed through them but she didnt have MS. she is now touch wood fine, she hasnt had her breasts done, the surgeon did a great job and she didnt feel it necessary as she like she said is over 70 why bother.

I think you are very brave, but your family need you, cancer and MS and i know you think whats the point, but if you can have the surgery and its a sucess again perhaps you can find a way to deal with the MS. I do think you need counselling.

Please i do think you need to find out why you cant lie down and why you are in so much pain with your MS. I hasten to add i am in pain but i have found ways to deal with it.

truly you are an inspriation to motherhood. I hope you find your answers, and I am sending you all the positive vibes i can. xxxxxxxxxxx

Very sensible answer from Cracowain.

Two horrible illnesses, and something that even with the best intentions it’s very difficult to offer the “correct advice”.

You really need to speak in depth with the consultants from both fields, possibly even asking for a combined meeting.

I’m sure under the circumstances this could arranged, maybe your GP could write a letter to all parties ?

Also some form of counselling is a good idea …

Thanks for all your responses. I can’t lie down flat on my back due to spasms in my legs. My left knee I can’t straighten. I’m still waiting to see spasticity clinic which is taking forever. My neurologist just doesn’t seem to have an answer to the pain and the oncology team don’t want to tread on the neurologist toes and I don’t really want to take a morphine based medication. I don’t know. I feel incredibly selfish for thinking about just me and the impact on me but my quality of life since my original diagnosis has really gone downhill. I have relapse/remitting. Had a bad relapse post treatment and never recovered. Also fractured a rib which didn’t help. Thanks again. I appreciate your thoughts

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Ask about Sativex. I tried it but NOT for pain, I wanted to improve my mobility, as in walking distance ect, but it didn’t help. However, I have heard it is far better for pain/spasms related to MS. Your MS consultant would usually need to get you to see a spasticity consultant as its them who can initially start you on Sativex on a trial basis.

Loola - we are all on here for support & that’s what you get here - my heart goes out to you - your hubby & kids need you so give yourself every chance of getting better. Keep knocking the doors for pain relief & the cannabis route or Sativex may be a good option - (((((hugs)))))))))

Thanks everyone. I’m waiting for an appointment with the spasticity clinic. 6 month wait apparently. Spasms got a lot worse since referral. I just don’t want my kids memories of me being ones of me struggling and in even more pain unable to do even more things. That’s what I fear most with having surgery etc etc. Just don’t want anyone to think that I’m doing it because I don’t love them enough because it’s for love that I’d choose quality to make those awesome memories whilst I still can. CT next week to check if it’s spread further and then things will change again treatment wise I’d have thought. Thanks for your supportive messages though xx

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I would of thought that under the circumstances any referral to another consultant/clinic, such as the spasticity clinic would be expedited ?

PLEASE dont accept a 6 month appointment date.

Hi jatac I’ve called and pleaded with them but have been told that’s the waiting time and basically to suck it up. You’re the only people out there that understand the difficulties. I fear that after surgery the great difficulties I have standing and walking will worsen even more due to surgical pain and be restricted even more. I just don’t want my family to think I’m not having the surgery because I don’t love them enough to go through with it. Is so hard just wish someone could tell me what to do.

Your GP has a duty of care, so that’s where I would start .

The very least they should be doing is asking to push your case forward.

Be straight to the point, tell him/her that your not happy with the “service” so far, and they have a duty of care to their patients, waiting for 6 months under the current circumstances to see a consultant is not justified.

Have you spoke to the spasticity consultants secretary to see if you can get an earlier appointment ?

Write a letter of complaint to your GP, MS and oncologist consultants, tell them that you feel your current ​health & well being is not being taken seriously and that you hold them responsible for not expediting your case.

Something in writing is always better than a verbal phone call, it has a bit more clout.

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You may think this is a bit extreme, but why not bring this to the attention of your local newspaper and MP ?

No harm in giving your version to a journalist looking for a story to tell.

I bet they would love to get their teeth into something like this, after all there’s an election looming !

No authority likes bad publicity !!!

Name & shame is the name of the game !!!

At the end of the day Loola you need to be thinking about yourself and how you can get the full support that your entitled to, so if that means rocking the boat and causing a bit of a stir then go for it.

Show people that although your have these terrible illnesses theres still plenty of fire left in the belly .

Maybe the MS Society can offer advice of who to turn to in such circumstances ?

Just another thought running through my old militant head !

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What a vile situation, so many mutually exclusive issues; I wish I could offer tangible advice. The previous responses have been really good. If you can not get proper committed support from your GP, you still need to speak with a knowledgeable professional. When I needed “non family” support I called the MS support line 0808 800 8000 and the process of speaking to a person was really helpful.

I wish you all the very best.

Mick

Hi all

thought I’d give you an update. I saw spasticity clinic- hooray. Suggested pregablin then baclofen pump but can’t have until March!!! Explained had aggressive cancer and had no effect. Saw my surgeon and as you say have no understanding of ms. Pretty much said just have to get on with it - thanks!!! Luckily I have a supportive husband so had surgery today and back home. Loads of pain plus more now but felt incredibly selfish not to have the surgery and felt children would think I didn’t love them enough. Get the results in two weeks and prognosis which I expect to be the same 40% chance will come back.

thanks for everyone’s advice/support. Now let’s hopefully have a good Christmas without too much pain xx

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Hey loola

I,think that you are,fantastically wonderful and are amazing how you have coped with everything. I hope that you get the results that you want. Don’t really understand why you cant have a baclofen pump,until March - is it a clinical reason or financial on the NHS? If is a financial reason I would try and do some more shouting which you are probably fed up,of doing and have run out of puff. I am rooting for you and thank you for sharing - we all learn from each other. I expect you’ve been to pain clinic sorry if I’ve missed that one my concentration often fails me

love

Min xx

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Loola you are truly an incredibly and inspiring brave women. I hope your christmas is truly special for you and your family and that you get the results you seek.

I just want to give you a hug.

xxxxxxxxxxxxxxxxxxxxx MERRY XMAS… yes have super xmas ok. xxxxx you are making new memories everyday, for your family and one of them is they will always know their mum is the most amazingly unselfish and brave mother anyone could have. xxxxx

Hi flowerfairymin

that’s how long the waiting list is for the hospital stay for the trial of the baclofen.
I haven’t been to pain clinic. Cancer services feel they will tread on neurologist toes and are reluctant to recommend as think it’s all to do with ms even though my pain has got considerably worse since the cancer. I shall just have to wait until new year as nothing happens over Christmas.
have an awesome Christmas and new year xx

Thanks crazyzhick. I don’t feel particularly brave or inspiring. I get told by friends and colleagues they are amazed that I can get on with things and do as much as I do and never moan. But I don’t feel like that. Just look at my husband and kids and know that I can’t break their hearts. They mean to much to me.
I hope you too have a fabulous Christmas and new year xx