Wednesday, 12 January 2011

So this horse walks into a bar...

The title of this post is just about as close to a joke as you're going to get in here, so if you're expecting a good laugh then you'd probably be best to skip this entirely.

You may wonder why I stopped writing this blog and where I went for much of the last six months (or you may not, but seeing as you're reading this I'm guessing you do) and the simple answer is that there is no simple answer. My personal and professional lives walked off a cliff last summer and until now I've not been able to write about it.

Due to the fact that several of my colleagues have found my blog (due to idiocy on my part by leaving an unedited name in a post by accident and despite it being removed it showed up on google searches), I still can't talk about my situation there. Suffice to say that I still work at the same place and continue in 'gainful' employment, which is better than it could be. This will not be a permanent state of affairs however - and not through my choice.

With regards to my personal life I've equally been unable to write about it until now, as the details are/were not mine to share.

Around April and May last year Mrs RS had an infection in an old leg wound that progressed as far as cellulitis. After one of her blood tests as to why the anti-biotics weren't working, the particular doctor on duty informed her that she had a much higher white blood cell count than would be expected if she was just fighting the infection in her leg. He recommended a MRI scan, but seeing as she's not covered by the NHS for anything (we'd already run up almost £2000 in medical bills by this point) and they quoted us £3000 to perform one, we decided to wait until she was back home in California where she had medical insurance.

Roll on the beginning of August and Mrs RS had her MRI scan. I was immersed in work problems at the time so the wait before the results were known flew by for me, but I imagine they must have been torture for her. Finally we got the results at the end of August.

She has a brain tumour. Not just any old brain tumour either, a Primary Central Nervous System Lymphoma (or PCNS Lymphoma. Details here is you want to be ever so slightly scared). It's located just behind the frontal lobes on the left side of the brain, so as it got bigger it pressed on the frontal lobes causing dizziness and vertigo alongside uncontrollable mood swings and memory problems. At the same time her leg (which had never healed fully) was causing problems so the doctors decided to operate on it as well and cut out all the old scar tissue to replace it with one single scar.

August was not a good month. My days were divided into three portions; work, talking on skype
and sleep. Ever tried to emotionally support someone with a terminal disease over the internet? My advice is thus - don't.

Before any decision could be taken about the treatment for the tumour, they first had to determine exactly what it was. If you haven't already figured this bit out, there is only one way to do this. It involves a drill and a small straw. Oh, and a pair of hair clippers.

Biopsy complete it was time to turn attention to the leg. Knowing that the likely outcome of the biopsy was going to be chemo and/or surgery to try and remove the tumour, her doctor decided to remove all the old scar tissue - almost down to the bone on her thigh - and staple it all together to let it heal quickly so that it would be done before any other treatment would commence. Surgery was booked for October, which was why I was over there to take Mrs RS for a holiday at the beginning of that month. Not long afterwards I started to crack around the edges and I stopped posting here. I have a great set of friends but even then I only told a handful what was going on out of a (not atypical for me) desire not to just offload all my problems onto someone else. Those I did tell were great and have helped me immensely. It wasn't easy to talk about though.

By this time they had her on steroids to 'slow the growth' and the results of the biopsy were as feared. It was going to have to be chemo to start with, once her leg surgery was complete. On the day of the surgery her doctor was held up in one of the other operating theatres for an emergency so a specialist surgeon came in, either didn't bother to read or deliberately ignored her doctor's recommendations, and hacked away with abandon before stitching (rather than stapling) the whole thing up.

The stitches split within a fortnight, leaving a four inch long wound that was three inches deep and now wide open. The surgery also left her with (possibly) permanent nerve damage from her back to her calf. On her next hospital visit the surgeon said 'yeah, I probably shouldn't have done that.' Of course, this is America so once you've signed the consent forms then you've no comeback at all. Charming.

The wound stubbornly refused to heal, so she was booked in to receive a Wound Vac as a last resort. While waiting for that she started three weeks of massive doses of chemo to 'soften it up should we need to remove it'. The chemo was supposed to shrink the tumour. Hopefully it would shrink it enough that surgery wouldn't be required, but it was an outside bet. Chemotherapy is a horribly blunt process (if better than it used to be) and it went as expected - lots of vomiting, aching and feeling terrible, followed by hair falling out.

No wait, I'm getting ahead of myself here. The Wound Vac was fitted around the start of the first chemo dose, but before it could be fitted they still had to deal with the infection after trying a number of anti-biotics with no great success. The last one they tried was in the week or so before chemo started (so, um, late November unless I'm getting confused). The day after starting the course she had one of her mood swings and wiped her tears to find that her hands were covered in blood. Looking in the mirror she could see that blood was running from her eyes and nose. Panicking (understandably!) that she was having a brain hemorrhage she frantically called her doctor. Apparently one of the side-effects of the anti-biotics is that it turns all your bodily secretions orange or red. Relief, but here's a tip doc - try fucking telling that to patients BEFORE they find this out themselves, especially with patients for whom staying calm is of utmost importance.

The anti-biotics did however work enough to allow them to fit the Wound Vac. I've seen the process now and it's disgusting (I am squeamish though), although probably less so than the canister attached to it holding two days worth of drainage from the wound.

Sorry, hope you weren't eating just then.

Chemo finished the week before Christmas with the final MRI on Christmas Eve. Christmas was, as usual, crap and depressing. At least I had a good reason to feel like that this time. I spent it on my own feeding turkey to the cat.

We got the MRI results the day after Boxing Day and for once it was some good news - the chemo had shrunk the tumour enough that the risks of surgery outweighed any potential benefits. The tumour is still there, but she's in remission for at least six months. If six months is all we get then so be it, but at least we'll try and make it a worthwhile time.

Right now I'm in California looking after Mrs RS for three weeks. The wound is slowly closing but it might take a couple more months to fully close. Once that is done then the plan is for her to come back to the UK for a while to complete here recovery - memory problems are still there, as are the uncontrollable emotion swings, and the nerve damage is the most debilitating thing right now. It's very frustrating for someone with an IQ over 160 to be struggling to multiply 5 by 6 anymore. She knows the answer, it just won't crystallise in her brain. These functions are supposed to come back in time and her memory is starting to work again in dribs and drabs. I can't do anything other than try and calm her down when she gets frustrated and upset.

Things will be better. I believe that. There'll be regular MRI scans to give us warning if it's growing again and, well, if it is then we've done it once so we'll do it again. I will not let this take her life and ruin mine, not without a fight.

And if it does, then I'll reverse my long-standing atheism, prove there is a divine being and then kick it firmly in the bollocks.

Twice.

10 comments:

P said...

Shit, sorry to hear what's been going on with you and Mrs RS. I hope she's doing alright, and you are too - I'll say a prayer for you both anyway. (Although considering I'm not so much a lapsed Catholic, as collapsed, I'm not sure how much good it will do. But the thought is most definitely there.)

Big hugs. xx

Macy said...

Shit - I hope you don't mind me landing on your blog just to say something as trite as "best wishes".
But good luck.

weenie said...

Really sorry to hear about what Mrs RS (and you) are going through - thanks for sharing. Best wishes - keep strong.

Mrs Red Squirrel said...

Don't worry love... If I lose the rest of my hair, I get to buy really cute wigs. :)

This post was beautiful. I know I've already told you (as well as approving it before it was written *wink*) but having you tell the world you love me this much means so much.

I need to tell the world right back... He's never left my side, even when he couldn't physically be there.

Sweet Cheeks said...

Little Squirrel~

All my love and prayers for you both.

Mrs. Little Squirrel~fight it with all that you have. Give it hell and don't take no for an answer!

Sweet Cheeks
xoxoxo

Pearl said...

Squirrel, I have missed you, and I have wondered where you've been.

What a difficult post. I am like you in not sharing with many people, and I'm so glad you stopped in and let us know.

I fervently wish I could help. You have my thoughts and my very best wishes.

Hugs,

Pearl

Red Squirrel said...

Thank you all for your kind wishes. We will get through this one way or another.

lgsquirrel said...

Dear Mr. & Mrs RS,
Sorry that it has been such a terrible time for both of you. My sincere wishes for every good thing this coming year. May God grant healing and victory over this illness.

Charby said...

That's awful Squirrel(s).

I really hope it all works out for you. I know just how hellish it is trying to comfort someone with memory/cancer problems but it must be so much worse being so far away...

If it helps I've always struggled to remember what 6 x 5 is...

Sweet Cheeks said...

Could you give us an update, Little Squirrel?

I've been thinking about you both. How is Mrs. LS?

Love and prayers,
Sweet Cheeks