Surgery & living alone

[missmore]

I promise to join you tomorrow ladies, I've been a bad friend and will make it up to you x 

last week of rads, grit your teeth m'darling x

hair loss could be stress related,  try shampoo called Nioxin x

sitting outside James work waiting to drive him home,  poor love has had three days of 12 shifts behind the bar, but on the bright side he has got himself a job in the Apple store,  shame graduates struggle to get decent jobs these days,  very disappointing

love you both xxxx

[Jill1998]

Yes ,we will feel better but like you say it will take a while.No one who hasn't googled survival rates can understand can they???Must stop doing that though!!!We are all individuals and statistics are just a vague guess what will happen next.You are right I should concentrate on recovering from rads and stress about hair at some point in the future ,I will try that powder or rub some shoe polish in ....

[mael]

I understand perfectly for the hair; I don't particularly like mine but I would be upset if I lost them, as horrible as they are (imagine thick, irregularly extruded and super hard polyester threads), they are mine. Plus, they are a visible sign. Maybe put the problem out of sight till you deal with the boob and the tiredness? I am not suggesting you cut them or use a wig, but maybe that filling powder, or using a fluffy, no-partition hairstyle. Out of sight, out of mind... plus, it's not likely to become much more serious.

And looking at the boob shouldn't be allowed more than once a day max 😉 As for googling statistics, may the lightning strike me if I do it again.

This cancer experience is so imbued with loneliness. I am glad there's you gals, and my cat. My friends are nice but what do they know? My cousin who phones me "hey, we ought to go for a couple of weeks to the seaside" -- lol, it bothers me to go as far as Cricklewood, let alone Spain. Sigh. I am tired and I am tired of being tired, and I need to sleep at least a week to trigger my natural "f**k everything and let's have fun" reaction. I am sure we will feel better in the near future but takes a while.

[Jill1998]

I think all the treatment we go through gives you a massive physical and psychological pummelling,it's not surprising it takes it's toll on mood is it.I have not felt as good as I though I would , boob has large red raw patches and I can't stop looking at my receding hairline which ironically upsets me more than the state of my red raw, shark attack boob!!Bought a supplement that is supposed to help we will see.Also now have to think about going back to the world of work,at the moment can't imagine being in a fit state mentally to deal with other peoples problems .

[mael]

Thank you Jill x -- I am a bit meh. It's not as much the physical symptoms, but the hospital hangover. That daily grind put everything out of focus. I've also read that rads trigger inflammation paths that can cause low mood, which can persist for a month or two (argh). I am afraid of dying and at the same time, admittedly, my life isn't exactly overflowing with pleasure right now, and feels more expendable than it should and it does normally. I need to regain some distance. 

Time to fix dinner. How was your first weekend as a free woman? x

[Jill1998]

Last 5 Mael, almost there.

[Jill1998]

Let's hope so with sensible restraints they do .

[mael]

I don't judge too harshly as only six months ago, altho i was strongly favorable already, I was wishy-washingly pondering about slippery slopes, third-age epuration etc. Now of course all these concerns seem ridicolous to me. Ideally, I'd feel immensely reassured by, dunno, owning a cyanide pill. I would never use it, it would be just a life insurance of sorts. Hopefully all those worries are way premature. Maybe premature enough to give time to our Parliament to change its collective mind.

[Jill1998]

They really ,really don't understand do they .

[mael]

Uhh, don't tell me! I feel so let down by my adoptive country. A real shocker, also, the margin of the rejection.

[Jill1998]

Your choice totally how much you choose to ask about,we have to give up so much control during this illness.Feeling very sad that the Assisted Dying Bill has been rejected by parliament today , don't think anyone who has not had a potentially terminal illness or relative / close friend who has has the right to vote on that.

[mael]

Axillary nodes looked all fine and dandy on ultrasound, indeed as far as I can tell they still are, as my cancer has decided to spread horizontally instead, apparently. Anyway, this shouldn't change my prognosis or lack thereof, so really I was panicking about old news. Yawn 🙂 By this time, I should really have learned to enjoy the present instead of worrying about the future.

[mael]

Jill, my fishing for reassurances so far has always ended in tears (mine) -- so I don't do it anymore... 

[Jill1998]

Don't think it showing up on MRI scan is relevant,they can usually see enlarged nodes on Ultra sound too, maybe you should ask more questions may reassure you , you never now??

[mael]

Plus, let's say it, after visiting the hospital daily 25 times, even the observation "hey, your arse looks big in those" would have been enough for a panic attack to run amok. I am really really tired. I seldom say that, as I love my time, but may next week come and go without me noticing much.

How are you going to spend the weekend?

[mael]

I also tend to not enquire much about my outlook, as all they give you is large number statistics, and since it's a case hovering round the median for potential to put me to push daisies, it's about like saying "hey mael, you may live or you may die, we don't really know".

Also, statistics are not destiny. My late idol and later neighbour Peter O'Toole survived stomach cancer for 40 years. BC is like having flu in comparaison; the odds of surviving stomach cancer are, i believe, in the single digit. Still someone does. That's why I prefer to avoid myself too much knowledge; as bad news won't necessarily come true but they hurt a lot in the spur of the moment.

[mael]

Onc didn't tell me much -- that I have some; that if I were left untreated I'd have a 50% chance to pull it through. Unlike the surgeon, he was actually fine with me having the rads instead of the node clearance, as apparently rads do a decent collateral systemic job as well. Was overall somehow noncommittal. I totally expect to have some residual node involvement, I was just shocked to learn that, if it's true, it was big enough to be seen on the MRI (otherwise how they would know?). I should have asked but I tend to have a lot of esprit d'escalier when it comes to my condition, torn between the desire of knowing and the one of avoiding yet more bad news; I end up not asking much and then ruminating endlessly and giving myself a heart attack.

[Jill1998]

I have very itchy rash and am trying hard not to scratch it.What did the Onc tell you about your node involvement, I have heard of some pretty bad , inaccurate comments being made by radiographers .

[mael]

Don't tell me! After the "oh your nodal invasion in the back" obviously my back hurts. And the hickey on the collarbone now looks more like someone had punched me really hard. It itches and I sometimes scratch it absentmindedly. Ouch.

[Jill1998]

I will put it on my wish list !!!

[Jill1998]

Oh the joys of cancer treatment go on and on!!!

[mael]

This is also true! But tamoxifen causes thinning, not baldness. You'll keep enough of it to allow for some creativity. Anyway I think there's a powder to disguise the thinning and I've heard reasonably good things about it: http://www.amazon.co.uk/Fill-In-Powder-Thinning-Brown/dp/B005Z7L4A8

[Jill1998]

Depends how many you have got left to arrange I guess!!!

[mael]

indeed! It's only hair... and they can be arranged in many deceptive ways. Or given extensions!

[Jill1998]

See how bald I go and if nes see if they can prescribe anything ,I have free prescriptions after all !!!Hope I don't get too obsessed with looking at my hairline !!!

[mael]

It's shockingly expensive O_o [tight fisted me] -- maybe ask your doctor if you can get it on prescription? That or anything else is recommended... ?

[Jill1998]

Looked it up on line and it seems to be quite common although the leaflet said rare side effect ?they suggest that treatment for men who are going bald , Regaine ,bummer.

[mael]

That's a bummer! What can be done? is there something that can help?

[Jill1998]

Well ,I can see my scalp where I couldn't see it before and there is def more scalp than hair in certain places around the hairline, joy!!!6 weeks prob enough to kick it off if it's gonna happen!!

[mael]

Are you sure Jill? Wouldn't that be a bit... quick? You haven't started Tamoxifen months ago. Do you have any evidence of loss, like, more hair on the brush?

[Jill1998]

Watch something trashy on TV and cheer yourself up!!!Cant stop inspecting my hairline in mirror I am def going thinner on top , bummer....

[mael]

You're right Jill. It's only reasonable to assume I've got some mileage left. it's my PSTD that talks when checking out is mentioned, not me 🙂

[Jill1998]

Hormones therapy in itself keeps people who have secondaries alive for many years and you are not in that position ,I don't think you should be thinking of checking out soon .

[mael]

Ladies, the only thing I've done more than you is to work, which given the nature of my work (sitting and bossing around, basically, occasionally writing some code and/or scolding someone for bad code) has probably been more of a support than a hindrance, helping me to maintain a sense of "me" during the treatments. I am no more of a tough cookie than you, but good news is that we are tough cookies.

And I plan to remain alive for a while still, yes. Not sure how, but I won't be had that easily! x

[Jill1998]

Mael, I was told I couldn't get radiated in this breast again if it came back.Sheena and I have struggled with this whilst not working God knows how you have coped.Buried the ashes said good bye,hopefully never to return.

[missmore]

It's no wonder you are exhausted, don't be so hard on yourself my dear. Promise yourself a treat for next weekend, something to focus on. You will be around for years to come tough cookie xx

[mael]

Great Jill! (hi Sheena!). goodbye bra, good riddance, you won't me missed for a split second.

byeeeeeee bra! 

[mael]

Yes, I am exhausted. When it's too much it's too much. Rads, work, thinking I may die, then a technician has let slip "your nodal invasion is in the back, and we have given you the lifetime maximum of radiation there" [nice to know! one one day might come round a shop and get some rads, not knowing. Also, i won't google anymore statistics after this nifty piece of info, as I know I might as well be dead already], a friend has posted on facebook a picture of her cannula after her mastectomy; add the side effects of the rads and the probable immune depletion and general body mehness and... yes, this is enough for a panic attack. More than enough, dare I say.

i wonder -- if i am so f***ed up, why on Earth I can/must wait to take the letrazole? Mystery will have to wait till the next oncologist visit, which is on the 22nd, and better not think about it as the panic attack might just have popped to the loo instead of leaving the building.

[missmore]

Ladies! ! am I too late

[Jill1998]

Ooh yes, I will bury it as well!!Not much left to be honest not even the clips!!!Bye bye bra , don't come back and haunt me!!!!

[mael]

I suggest, if you have time, that you bury the ashes as well. It's true that the chances of a zombie bra are limited anyway.

[Jill1998]

You are just exhausted by everything not surprised your are having panic attacks , your are not the only one. Just put a match to it went up like a rocket , ace!!!Dont think it will last long ,I have recorded it for posterity .

[mael]

True -- I don't know what happened to me, now it's gone as abruptly as it came,.

How's the fire going?

[Jill1998]

BBQ lighting fluid!!

[Jill1998]

I had sweaty palms and pins and needles this morning and I had been 15 times already ,it is such a bloody nuisance isn't it anxiety such a blooming illogical feeling most of the time too.

[mael]

Using any starter?

[mael]

If it were colder, they'd appreciate more!

[mael]

I am safe in a bus, almost home. It was only a panic attack. Merde! They better not start again

[Jill1998]

Invited the dog and cat, they don't seem that bothered!!!

[mael]

Ouch! Pay attention! You want an autodafé, not an arson.