Chemo and Campervans

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Make your own Mastectomy Bra

Some resources for people who have had it up to here with bras that just don't quite fit right:

http://www.kwiksew.com/Catalog/cat_thumbs.cfm?Cat=Misses&Level=Lingerie&QL=MissLingerie

One of my best mates runs venacavadesign which is a company who specialises in all the bits you need to make corsetry and period costumes (and storm trouper outfits... great for hubby :)

They've just started doing all the bits you need to make your own bra, wired or underwired and having now bought 4 bras that just don't actually fit right I've decided to have a go at making my own mastectomy bra. The following has apparently got a good pattern for a bikini style bra.

They'll be putting more up soon and I've told them of the plight of us poor prosthetic wearing people with the sides that pinch, the bits that don't lie flat and the stuff that rides up.

I never did like bras and now I bloody hate them.

I'm hoping making one myself can fix this situation.

When I actually get around to it I shall blog and take pictures of the process.

They're very nice people so don't feel embarrassed to get in touch if you want to know what bits you need or any advice, it's what they do, talk to Liz:

Comp@venacavadesign.co.uk

and of course why shouldn't we make our own corsets too. That should give me back the waist that the steroids have stolen :)

http://www.venacavadesign.co.uk/

created on 2008-07-02 by vertang.

the pics

You can see pics of progress here:

http://www.tommymartin.co.uk/the_other_section/project_hugo.html

As always you need to remember that I'm still weak after surgery 3 months ago... yea right. Well yes doing this does cause pain occasionally but I'm certainly getting stronger too. Tommy pointed out yesterday that he aches too so it's not just being post surgery :)

created on 2008-05-18 by vertang.

Saw the onc

so I saw the oncologist.

Not the best day of my life, overwhelming would be an understatement. But yes the jury has come back (or should I say the database has spoken.) and while I didn't like the numbers at all (64% prognosis before treatment) They do get better with treatment (82%) so my gut instinct of spending the summer doing chemo was quite right. So chemo and campervan, followed by radiation therapy and campervan, And then hopefully just happily ever after with hubby, dog and campervan (with a few hormones thrown in).

So wish me luck this is going to be a long ole summer.

created on 2008-05-07 by vertang.

While I was waiting Tommy had a dream.

Tommy dreampt of a campervan, and after about 20 mins we decided we should have one, after about half an hour we must have one.

Then we decided not, too expensive we'll just hire one.

Then we saw how much they are to hire and went ouch, we'll buy and old one and do it up...

3 weeks of research and several close calls later we find it... it's ours now. It's called hUgo (or You go).

I imagine saying "Hugo... Beach!" and suddenly we will be there.

Of course right now hugo is a shell. we've just finished riping the manky 80's carpet out of it, and we have a few (ahem) spots of rust to deal with but hey it's 28 years old and has only done 38 thousand miles and we could afford it. We have to be realistic here.

I'm not doing my post surgery excercises anymore exactly. I could reach the ceiling 4 weeks ago. Now I'm scrubbing the damn thing in a campervan. please.. no one tell my breast care nurse ;)

created on 2008-04-30 by vertang.

The morning after

Ok so I have a massive hangover and that accounts for some of it but with such great news why do I feel like somethings not right... it dawns on me it's not over, there are more results to come. The path results.

I get them a week later, these ones weren't so pretty, or were they. This is where it starts to get all twisted and it's all a matter of perspective.

I'm triple neg, this means that they can't use herceptin.. this is bad because that's one less weapon in the arsenal. This is also good because cancers that respond to herceptin can be aggressive.

It also mean that we can't use hormone to control a recurrence... another whole set of weapons gone = bad. but I don't need to use hormones for the next 10 years and all that comes with that = good.

so all they can use if chemo, but there are several, or should I say lots available and more being trialled all the time.

But I'm thinking why would I need any of them, the tumor was removed with surgery wasn't it?

It was also grade 3 (or should I say they, there were 2 tumors after all and in case you're wondering no it doesn't spread from one breast to another like that, it was pure coincidence, or maybe genetics). Now this is also bad news. Grade 3 means it was fast growing = BAD. but it wasn't in my body long because it was fast growing, so had little time to spread = VERY VERY GOOD.

AAAArgh, is this good news or bad, who can tell.

I now know that it's just results, and there will be a nice long wait until I see my oncologist... but in the meantime it's time to get back to living.

created on 2008-04-30 by vertang.

The results are in

So the waiting was finally over. In I go, with Tommy as always (you do get to know who your friends are through something like this, and there's no doubting that Tommy truly is my best friend).

The surgeon who operated on me is there and I think he may be smiling, yes he was. He checks me over and calmly gives me the results. Lymph nodes were clear, no lympho vascular involvement (that means spread into fine blood vesels around muscles) basically it looks like they got it all... I'm overjoyed. They don't use words like cured but I ask him. Is this the best news you could possibly give me, he smiles gently and says "Yes".

I leave the room crying again, but this time with joy. I do so love that surgeon and his team.

We go to thue pub we tell everyone the great news, life is wonderful. We get horribly drunk. People keep buying us wine, we can't be blamed.

created on 2008-04-30 by vertang.

Recovery and Waiting... incesant waiting

They say the waiting is the hardest bit. They're so right about that.

So I got home after the op. Drains accompaning me (little tubes that don't really live up to the scary name, they're awkward though). The next week I started doing the exercises as much as possible. It's true that doing as much as you can as soon as you can really helps. It's also true that over doing it doesn't :)

1 week later, Feb 27th, the drains come out. I am again mobile, but I can't cartwheel for a few months that's for sure.

I keep excersing and start going out and seeing friends at the pub. I'm doing OK. But underneath it all I'm an emotional wreck. I still am a bit but I'm starting to understand why and that's helping me move on. I know I'll never be the same person again but I do have a say in who I will be and maybe I can be more than I ever was. In some ways I'm coming to understand that you have to work harder to own yourself when you're dealing with a disease like this. A lot of people don't like language like fighting, beating, winning etc. I can see why as it implies you're at war with something that's going on in your own body and I suppose it's not healthy to be at war with yourself at all but they're just words so if you see me using them please don't be offended. I think how you feel about yourself through all of this is more important and the emotions are so complex.

My friends have been great, especially during those first few weeks, but it's like being in limbo and I didn't feel like I was really here when I was waiting for those results, the ones that would tell me just what I'd had hiding inside of me.

created on 2008-04-30 by vertang.

From DX to Op

So there I was... I rather liked my breasts, or at least I used to, now I wanted them gone, they were a threat. They felt like they were putting a gun to my head and until I knew the cancer was gone I guessed that was how I'd stay. This turned out to be the case. I didn't really mourn them, or at least not yet, things haven't exactly slowed down enough for those kind of thoughts.

So I'd never had a major op before and I was more scared of the anaesthetic than anything else. This was, it turned out, extremely daft.

I had a bit of a wait before the op and a lovely recovery nurse waited with me and because of the wait I needed a pee. So I was allowed to sneak around the edge of the recovery room and I saw several people looking peaceful after their ops and slowly coming around... the fear then passed.

So in I went, don't remember going under but I do remember coming around. First thing I did was lift my top to check all was OK. Yep, 1 large bandage and no pain, great. No nausea, nothing.

The nurse commented about me asking lots of questions and talking quickly... yep that's me, I made it through stage 1.

Wheeled back up to recovery room and a really difficult night. Not the pain, that was fine, not a lot really, a couple of paracetemol had that under control. No the problem was the incesant binging of people calling the nurse as y little ward was near the nurses station and I'm a light sleeper. I swear I'd have gone and kipped on the sofa in the shared lounge if I hadn't been so wired up.

They kept me in for just 3 days, but I think they really would have had to upgrade the hospital to fort knox level to keep me in for another night.

That said, joking aside. I owe that team of people my life... in a very real and literal sense, I felt that at the time but it would be another 2 weeks before I found out just how much...

created on 2008-04-30 by vertang.

So why the chemo...

Well tomorrow I go see my oncologist for the first time so I guess it's time to quickly cover the backstory to the chemo part of this section... in essence it goes something like this.

Start of Jan 2008... Happy new year, what's that, a lump on my breast, probably nothing. I make an appt with the doctor.

a couple of days later a very nice doc reassures me that yes I am young, yes it's probably just a cysts, but we have the wonderful NHS and a things called the 2 week rule, which means I'll be seen and checked out properly within 2 weeks.

Jan 16th: just under 2 weeks. Ultrasound scan sees a lump, a very fine needle (didn't hurt honest) tries to take a sample, nada. It's not looking like a cyst anymore. So a larger sample is taken and appointment made to come back next week for results.

Jan 23rd: Hmmm, whisked up to the clinic, now have a mammogram too, it's true that they're not comfy but didn't hurt really. Another scan and now they scan the other breast too, WTF I'm thinking. There's something on the other side too. another biopsy taken. I'm now thinking I should train in this equipment the ultrasound gear looks cool (yes I am a Geek, there's no denying it).

Pop off for some lunch and back for results. I know somethings wrong when a consultant surgeon walks in instead of the doc, you don't need a surgeon to tell you everythings fine right.

Tommy and I prepare ourselves.

Yep I have Breast Cancer, yes it's rare in someone my age but not impossible, and there's also a lump on the other side that looks suspicious we'll get results on that side the following week they say, like that really matters anymore.

Surgery is recommended. Mastectomy in fact, I'm young, best not to risk it returning and I'm informed that because I developed it in the first place the chances of me developing it again are higher.

I hold it together and can barely breathe when leaving the hospital. Over the next few days I tell family and friends, wait for the shock to pass (takes more than a few days it turns out). Everyone tell me how brave I am. While that's nice to hear it doesn't change the fact that you have no choice.

Jan 30th: Yep the other side is cancer too. great. so what's next. the appt is booked. I'll be having a bilateral mastectomy towards the end of Feb. I leave and try to carry on with life for a while...

created on 2008-04-30 by vertang.