fuck cancer

Got an IM this afternoon from an ex who I'm still friendly with...

She has stage IV brain cancer rapidly spreading through lymph nodes and bones, her Dr. told her she has 3-4 months tops.

What do you even say? I tried to stay positive but man do I feel incredibly miserable.

Hey Mark, I hadn't paid much attention to this thread in the beginning because frankly...it's a hard one for me because I've walked a million miles in your shoes. I have the answers to those 146 questions...but they never seem to make sense.

It gets better.

so there i am chillin' in the west wing to some old school rawkus grooves feeling good.

i walk into the tv room to find mk2 watching some old home videos that bh had filmed.

the sound of her voice and bammmm.

impact : massive downward groove.

i hate unexpected triggers.

18 months on and this shit still hurts hard.

time for a top up and an increase in volume.

aw mark :(

i went into my deleted voicemails and found one from my mother-in-law, and I've kept it so I can hear her voice

i feel weird abt it but I dont like just ~going on~ with life, not having some tangible part of her still with me.

:( Take care, Mark.

all ok now ..

a year ago i would have fallen into a dark hole for days, whereas now, i can cope ..

was just the trigger that hit ..

never expected it given the 18 months ..

My sister's birthday today, the first since she passed. She would have been 40. My parents had her partner and son over for birthday cake.

I live in a different country so I couldn't be there. Settled for having spaghetti for dinner - her favourite, and what we always had on her birthday.

My mum has just got a diagnosis of grade 2 invasive lobular breast cancer last week :( My step-dad is planning to re-mortgage his house to pay for some private treatment known as Targeted Intraoperative Radiotherapy. I am phoning some UK private healthcare companies tomorrow to find out the cost etc. Anyone know anything about this type of treatment? It isn't available on the NHS but seems to be more commonly used in Germany + the USA.

http://www.ncbi.nlm.nih.gov/pubmed/23037497
http://www.ncbi.nlm.nih.gov/pubmed/24224997
http://www.ncbi.nlm.nih.gov/pubmed/24225155

Concept seems to be limiting radiation exposure (and side effects thereof) while producing equivalent benefit. Evidence doesn't look overwhelming either way. Don't think it's standard of care even in the US given the way this evidence is reported.

What's his rationale for wanting to pursue this option?

They seem to think this is the best treatment, based on reading an article about successful trials of this treatment, cut out of a tabloid newspaper and passed on to them by a friend. That type of solid medical research! I think the 'one-stop' aspect is appealing to her and she is terrified of how much the intensive 6 week chemotherapy is going to hurt.

couldn't you get another oncologist's opinion about this before they proceed with it?

like a third party who doesn't have any institutional/emotional/financial investment in providing or not providing this new treatment?

you and your family have my sincere best wishes anyway, whatever treatment is chosen

^ all of what he said. good luck with everything dsp

It's not meant to be an alternative to chemo (which aims to treat distant micro-metastases) AFAICT, but to whole breast irradiation (which treats local/regional disease, in the breast and/or axilla).

Many cases of local breast ca are treated without chemo, or with long-term hormonal treatments like tamoxifen, which isn't what most people imagine if they think of "chemotherapy".

Whole breast radiation can go on for weeks, so maybe that's what they meant. Don't tend to think of radiation treatment as being very painful, but experiences vary, no doubt.

Does she have an oncologist she trusts? AFAIK NHS paid docs would have no financial interest in steering her one way or the other.

Thanks for your input/well wishes Nilmar,Nick + Plasmon. I am getting the feeling that this TARGIT thing is not as widely accredited as she has been led to believe I am still waiting for two private hospitals to return calls and their call centre staff had never heard of it, one of them was googling it while we talked. Also I think she is making some wrong assumptions about the treatment she is going to get because she referred to it as '6 weeks of chemotherapy'. Just by chance there is a program on the beeb tonight about bogus medical companies ripping off cancer sufferers. I think her relationship with doctors are just as bad as mine Plasmon, nod along, make eye contact and smile politely and phew.. glad that is over. The only reason they caught the cancer at this stage was through a screening program that was being run in the area and a friend twisted her arm to attend, luckily.

Hmm. There might be 6 weeks of chemo as part of the treatment plan too, but that wouldn't be replaced by TARGIT.

It's sometimes reasonable to forgo chemo if the year-by-year risk of metastasis is low, the benefit is limited, and/or the patient's general state of health and overall function increases the morbidity of treatment. I would think grade 2 disease would make them that much more likely to recommend a full regimen of treatment.

The oncologist should be willing to meet with family (along with the patient) to discuss the options, especially if it becomes clear that she doesn't fully understand what she's being told.

Hope it works out OK, best wishes.

This TARGIT treatment has not gone past trial in the UK, there is nowhere that does it. Just enquiring about it led me to a remarkable lady from a private company in Liverpool who gave my mum a good pep talk free of charge and told her she is lucky the cancer has been found the opposite side of her heart. She is a top girl who went way beyond what she is paid to do and cheered my mum up without soft-soaping anything.

That sounds a bit wank, but she really cheered her up. More than any of of us could do.

nothing is wank that makes people feel better when they're going through this, it's very tough and sad and frightening. my very best wishes to you and your mum.

estela otm

There are so few people who can pull that off really well. Hooray for help from unexpected but effective places.

Just got off the phone from my mother and she is better than last week. She has chosen a mastectomy, rather than targeted surgery and is feeling happy. I am so glad she has cheered up, because last week she was so fearful. It sounds like the cancer can be dealt with at this stage with one removal. I told her, you could cut anything off me right now, I wouldn't give a shit. Anyway we had a good laugh.

glad to hear she's doing better :)

wishing the best for her, DSP

all the best

Indeed!

And fuck you again for taking someone away too soon, cancer, and fuck you again.

http://blogs.dallasobserver.com/dc9/2013/12/benjamin_curtis_rip.php

neds on the money.

fuck cancer.

saw Philomena today

went into thinking the lady would probably remind me of my Mum and that it'd be a bit sad/funny and quite a nice time.

except that the character of Philomena looks and behaves a lot like my mother-in-law.
to the point where when she knelt beside her bed in her nightgown to pray, I think I audibly gasped 'oh no' and started crying quietly to myself

I wasn't ready to cry so much again. It felt good but it really shook me. Funny how you think you're 'okay' but your whole foundation is shifting sands, all the time

fuck you cancer, fuck you for taking away that sweet woman

sorry for that VG, loss can be unpredictable like that

one of my best friends, former boss, amazing dude just got a diagnosis (yesterday) of 4 months to live, possibly a year or more w/chemo

:(

oh man, that's fucking rough. sleeve, VG - hugs to you both

My mother is having a biopsy on a mass on her lung that she's had for well over a year yet chosen to ignore until this point. Scary shit.

Biopsy is tomorrow morning but I don't know when the results will be in.

thinking of you

sorry enbb, waiting for results is awful and scary. best wishes to you and your mom and your dad.

^

let me/us know if you need anything

Aw thanks guys :). Will keep you posted.

Tbh I'm glad she's finally consented to having it done because knowing has to be better than not knowing.

Funny how you think you're 'okay' but your whole foundation is shifting sands, all the time

this.

enbb : i totally understand the denial of knowing aspect.
should i ever end up in a similar situation, i have no idea how i will approach things.
fingers x'd the results are in her favour.

Thanks, Mark.

yes, fingers crossed ENBB. Waiting is hideous.

waiting is a massive part of the world of evil lumps.

your life becomes a series of waiting experiences.
it's quite literally life draining.
never have i felt so useless/helpless as during those periods of 'waiting'.
even now, years on, i feel a mass of guilt about the time wasted while 'waiting', but when in that place, you are not really in the mood to do anything else but wait as so much depends on the outcome that you cannot really partake in any day to day pretence.
as said above, it is truly hideous.

hang on in there enbb .. despite a minimal connection through the wire, my thoughts are with you and yours.

My friend had his surgery today. His wife was just rung by the surgeon to say it went brilliantly... phew!

brilliant news suzy ..

Oh that's great, S.

Good luck enbb. Thoughts with your family.

<3 ENBB. Hope all turns out well.