Tim & Catharine - letters

Chapter 1: Meeting

This story starts in November 1999. Lyudmila, my wife of eight years was dying of breast cancer. Stress reached fever pitch as I tried to be nurse to her, father to the children, housekeeper and breadwinner all at once. I desperately needed someone to talk to, and began writing to the Internet newsgroup alt.support.cancer.breast.

I have read this group for a little while now and contributed the odd comment now and again. Sometimes it seems to be the cancer-survivors-self-congratulation group, and I think I am living on another planet. Here cancer seems to be about symptoms, drug choices and occasionally mourning the passing of a much loved relative. I don't want to be all sweetness and caring and Christian values. I want to let off steam.

For me, caring for a wife with secondary cancer is about logistics and psychology. It is about making a bed in my van so I can take her to chemotherapy. It is about choices between a day's work 100 miles away and meeting my daughter from school or making the family evening meal. It is knowing that plastic carrier bags are no good for catching vomit, they have holes, but pedal bin liners are OK. It is cleaning shit out of the bathroom carpet. It isn't whether one treatment is better than another, it is trying to understand which pills she is supposed to take when, and trying to keep track of what she has taken when she can't remember. It is running to the surgery five minutes before it closes to get that repeat prescription of morphine, only to find they repeated an old prescription of vaginal pessaries by mistake. And it is the loss of my beautiful and loving wife, who has been replaced by this scarred twisted and tortured creature I live with.

Where is love when my every move is criticised, when all I do is wrong, when she blames me for her cancer, and accuses me of having a relationship with every woman she knows, and with women unknown, on the Internet. A dozen roses: everyone knows even numbers are unlucky. Am I conspiring with her doctors to kill her? Or to keep her alive in pain? She is hurting and confused. Love is: still reacting to it and arguing when the arguments have been rehearsed to death and it would be so much easier to ignore her or walk away. Love is: not letting her depression get to me, selfish as that may seem, I have to remain able to support her and the children too, physically and psychologically.

I won't be writing poetry about how much I miss her. Assuming I outlive her I'll make her epitaph "Gone to complain to a higher authority." Or maybe I'll feel better by then, sometimes there are still glimpses of the woman I married, through the mist. But right now I want to scream.

Tim Jackson

This outburst provoked many replies and much sympathy. Among the replies was one from a contributor who had recently described her bilateral mastectomy on the newsgroup in some intimate detail.

Tim, may I tell you once again that you are absolutely fabulous? You are. As I read your posts, I actually envy your wife, horrible as that sounds, because it is clear how much you love her. Through all the mess, her bad moods, her weirdness, etc., you are loyal. WOW, that is wonderful.

Greetings Catherine
Well that is certainly some applause. I do love flattery. :-)
I wish it were true. I'm not sure about love, I lost track of what that means somewhere in the maze. But I am one stubborn SoB and I married her having imagined this happening, so I've no excuse to cop out now. For loyalty read stubbornness.
Anyway what else could I do? Suppose I decided to leave her to it and find someone else. What would the children think? What sort of relationship would I have with someone who knew that I would run away if things got tough. No, the only way is forward.
For me the hardest part has been learning to snap back at her and show her in her own way when she is hurting me, before I get depressed or angry. We used to have some serious catfights because I let her go on needling me until I finally lost my temper. We can't afford that now.
Well, whatever it is, you are a dear, sweet man and a hero in my eyes. When your wife is irritating you, be sure to tell her that you have a glamorous (albeit flat-chested) Polynesian babe on a desert island telling you that you're fabulous.
Your past publications come back to haunt you:
30/11/99 "Frankly, I don't feel sexy any more. I guess my boobs were a larger part of my libido than I thought."
Well at least you didn't forget how to flirt. I think, to be fair, my wife thinks I'm great too, she just has difficulty saying it. Thanks for the compliments. I am truly honoured. And a lot less depressed!
Hey, I didn't say I was sexy, I said I was glamorous. Big difference.

Well it was lovely to be flirted with. Not that I had any ideas of infidelity to my wife. I didnít feel at all attractive at that time and the exchange gave me a lift. Like Cinderella becoming aware that she just might go to the ball. I reckoned that warranted the email equivalent of a Christmas card.

Hi Catharine
Wishing you a happy and peaceful Christmas.
Things here got a bit worse, but we are managing OK.
She got a wheelchair just in time to do Christmas shopping and we had a good time zooming around the crowds in the big shopping mall. She hasn't been able to get out for a while, so this was a big break for freedom.
You know, I feel a lot more at ease with my role now, and I have to thank you for that great vote of confidence out of the blue. It made me feel that what I was doing had some value and was appreciated. I think that helped my relationship with Lyudmila too. I don't think I can really explain what a lift it gave me, or why, but I could really hug you.
Well, now that I've found a priest for the island Catholics, I am much happier about it all. Christmas here is very low-key.
Good. I'm really proud of you that you can manage when things get worse.
Oh, yeah... if I could do my in-civilization Christmas shopping while sitting down, that would be simply MARvelous.
Consider yourself hugged. I'm glad that I can do that for you. Yours is a thankless job, and I'm glad I could do some thanking. And I'm fat, so when I hug, I HUG. Any time you need a lift, feel free to yell.
Have you ever seen our website? If you have some spare time, check out "http://www.midwayisland.com". It will give you an idea of what it's like out here.

Life, and the ending of it, went on, a long dark tunnel. Finally after three months, the end of the tunnel came into view. I wrote to the newsgroup again.

I have written before about my wife's secondary cancer. I now have sad news I would share with you.
Today the hospital examined her and said there was nothing more that they could do. She has metastases in the liver, and can no longer stand, talk or hold a cup to drink.
Her condition is visible declining daily. It must be terrible for such a proud person to end in this undignified way. Tomorrow she moves to a hospice where they can provide the nursing she needs, which I cannot alone while also looking after our 6 year old daughter.
Thank you to everyone for their support throughout this trying time.
Tim Jackson

Oh, honey, a big hug to you, your daughter and your wife, as well. I am sad that she may be dying, but I am quietly glad that her torment, if she is feeling that, will end.
You have been so wonderful throughout this. Please know you have my love and admiration.
Aloha pumehana,

Lyudmila duly died and life slowly began to straighten itself out. Arranging the funeral, sorting out her correspondence, flooding the local charity shop with clothes that had mostly come from there in the first place, finding a child minder, bringing Lyudmilaís mother from Siberia to see the grave. I encountered Catharine again on the cancer support newsgroup in August

She had begun signing her messages thus:
Your shrimp will explain you.

In an off-beat off-topic discussion about magnetic monopoles, sexuality and eventually and inevitably, sheep (donít ask) a banter started and ran into continuing threads of private conversation. The threads can get a bit complicated so the following are edited into logical sequences as far as possible. Those days we were each sending two or three emails a day.

BTW Catharine is no shrimp, unless she has shrunk. Maybe its a Polynesian kind of thing.

Probably is. Polynesian brings to mind some of the quips Bette Midler made on some of her early concert tapes. ....."away...lackofnookiesgotme....comeoniwannalayya"....I s'pose then that the "shrimp will explain you". Somehow, when I read this back in print, it loses something. It was much funnier on the album when she was teaching this to her audience. She expected and they did sing it along with her..... I guess you'll just have to ask Catherine just how Polynesian things get... charon

Actually, she explained in a lofty Polynesian way, that first word is auwe, pronounced ah-way. It means drat, shucks, oh no, heavens above, etc.
I think I've missed out on a lot of this conversation. What do you need to know?
And no, I have definitely not shrunk. Four days in the hospital, losing fluids from many orifices at an abnormal rate, eating consomme and nothing else, and I didn't lose an ounce. The docs were in awe.

Catherine, Yes, you should pay more attention to these running dialogues. Tim just happened to make an offbeat remark about sexual performance and opportunity during the spiel about the power of magnetics.....In the bc mets group that I participate in we've been bouncing around the notion of the testosterone patch. One gal said that her husband was hoping that she would then "jump his bones"....Being the irreverent person that I am, I suggested that a man would be superfluous. She'd grow her own "bones". That, of course, lead to a proposal of putting together a clinical trial and trying out the patch on experienced men with a high level of "enthusiasm" and a perverse sense of adventure.....and that's where Tim got drawn into the maelstrom... You'll just have to start participating in livelier groups!! charon

Tim likes women without breasts? What about fat women? Yoo-hoo, Ti-im...

Tim likes women. Tim likes breasts, but most of all Tim likes women of any shape or misshape that talk to him and don't have mush in their heads, especially the ones who sent him hugs in another time. Sadly he hasn't got one of his own just now. The last one wore out.
Catharine, sorry I was taking your name in vain. I apologise. I'm sure your shrimp will explain it. I was adding my gloss to your (above) sig., on the shrimp/shrink pun, in a silly repartee with Charon/cnm after attempting to lighten up an alleged po-faced-apologist-for-physically-unlikely-treatments who made innuendo about my (incomparable) sexual abilities. Sometimes my jokes are even more obscure/offbeat than my physics.

I accept your apology graciously.

I hope the PFAFPUT doesn't read this group or I might end up with a libel suit. (Well none of my suits fit me anyway so I could do with a new one.) By his header he was subscribing sci.med.nursing, so I should be OK because someone, (possibly you, I can't tell because of the holes in our feed) closed out the cross-posts. I assumed, but forgot to check, it wasn't still cross-posting when I replied (oops, lucky).
On a more serious note, I was sorry to read about your various complications. It must make your life rather difficult, I hope you are bearing up and not falling into depression. I was relieved that your joint pains turned out to be unconnected with the BC
Aaaah, in retrospect, four weeks of diarrhea is amusing.
The only thing that is depressing me is my horrible hair, which was coming in in Shirley Temple curls and now has mysterious straight patches amongst the curls. Bleah.
And how are you?
There isn't much amusing about diarrhoea. Was that an infection or a side effect? And those hip pains still sound like they're worrying you.
First it was the weird bacterial infection, then it was a side effect of the huge antibiotics I was taking. *I* thought it was funny. We drove from Alabama to Seattle, and I believe I saw every roadside bathroom along the way.
Maybe its time for a second opinion or another bone scan? I guess that's a trade off between peace of mind and glowing in the dark.
Oh, yes. As soon as I get my insurance straightened out.

It sounds like the US medical insurance system can be a bit of a problem when you move around a lot. Our system certainly has its disadvantages but at least you get service wherever you are, even in mainland Europe.
Absolutely. Sadly, the kinds of doctors and clinics I like going to ask for one's insurance card up front -- and might not be able to "squeeze you in" if my insurance won't pay. I actually have perfectly good insurance, but the doctors up here are all "out of network" and so my insurance will only pay for 80% of their charges. Doctors' offices assume that no one pays their bills, so they'd rather see people whose insurance pays 90% of charges than 80%.

Still working my ass off trying to catch up with the backlog or work that built up during the 'caring' period.
It's sad, you still have this gaping emotional wound but you have to work double hard to catch up.
Not really, it doesn't gape. She was pretty wounding when she was alive, and at least now my credit cards stay paid when I pay them, so at least I feel I am working *for* something, not just shovelling to fill a bottomless pit.
How kind of them.

Fortunately my business is flexible enough established enough and well enough paid to accommodate the changes, with an effort.
Good for you. What do you do?
Industrial electronics. Troubleshooting machines that go wrong. Designing and building stuff - circuit boards, instruments, software, you name it. Multidisciplinary.
Great minds... I just went to work for Cutler-Hammer. At a very lowly level, I add.
What are you going to be doing for C-H?
Oh, you know of them?
I will be a deputy regional coordinator in their engineering services division. It's a grand title, but it sounds like I will just be doing dispatch. I will take calls from customers to whom we have sold service contracts and dispatch engineers to fix the problem, and keep track of the engineers' time and billable hours. Big whoop, but it will keep me off
the streets.
Ah, a dispatcher for field engineers. Better than a poke in the eye with a sharp stick. Do you have to route problems to engineers with the right skills and equipment, or are they all interchangeable? The former, plus I also need to consider who has what territory. I took some work from a firm who used this system, but they had just expanded their business and they had engineers with only experience on specific machines, and the dispatcher kept sending out the wrong engineers, to machines they had never seen before, didn't have spares for, etc.. They had promoted an airhead receptionist to be dispatcher and she had no engineering knowledge whatever. They had told me they were going to give her the job and I had warned them it was a stupid move, that the only person they had who could do the job was the spares manageress.
Find out at "http://www.tim-jackson.co.uk". Lots of stuff there, business & personal. Thought you'd seen it.
No, I hadn't.
When I try to go to it, it forwards me to PlusNet. I can't find you in that. Whassup? I am horrified to note that PlusNet's promotional material uses the word "empower." Sigh. I would have *thought* that the Cradle Of The Language would not have used such abominations, but alas.
Oh dear, sounds like they screwed up. I can guess what is happening.
The company, my ISP, Plusnet is part of a US group who took over a UK ISP, Force9.
The Force9 service was renamed F9 a couple of years ago. Then recently they introduced a new service, unmetered access. This required a whole new setup, so they took the opportunity to set up a new server farm, and migrate all the accounts to a new company, called oddly enough, Plusnet.
Now I am talking to you from a Plusnet (unmetered) account, but I also have a residual F9 account which receives my mail, carries my website and hosts my domain. This is due to be transferred sometime soon to Plusnet, once the new service is stable enough, which it just about is, this is about the first week it hasn't gone down at all.
As to why they use bad language, they hire kids and pay peanuts ( or whatever goats eat). They also use technobabble when talking to users, I have upbraided them about it before and got a nice reply from the MD saying he would 'see to it'. I have to say it did improve. Its a young company growing fast and not quite keeping up with itself. They had a fire in the switchboard a couple of weeks ago that brought the whole service down for a day. One suspects cowboy electricians, it just shouldn't be able to happen.
I will investigate what has gone wrong with it and tear a strip off someone. I looked at it a couple of days ago, so either external addressing is fouled up, or there is a temporary glitch. I'll let you know.
The website seems OK. I tried it through another ISP and it worked OK, and I got a mail this morning from someone else who had just looked at it, so all I can say is "Sorry, please try again." If it still doesn't work (you should get "Puposet Ltd.") then send me a copy of the page that you do get.
You could also try the hostname, "http://www.puposet.force9.co.uk". That should point to the same place (but it won't once I migrate the site).
That's what I did, finally. I have now explored your website.

It was ferociously interesting to me, especially Lyuda's memoirs. My mother's grandparents were Decembrists who were exiled to Siberia, around 1906 or 7. They mysteriously were in Harbin in 1909 (where my grandfather was born), in Shanghai in 1912, and got to Hawaii in 1913. I never knew my great-grandfather, who died before I was born, but I knew my great-grandmother very well. She was a tiny but very forceful woman who lied a whole lot, so I don't know how they got out of Siberia or where they were sent or anything. I do know that she said she had had a governess and had never gone to school but on the strength of her wonderful French she taught in Honolulu for many years.

She taught up until 1985 at Central Intermediate School, lying about her age. She retired in 1985 when she reached "mandatory retirement age": 65. Of course, if she was married in 1905 and having a child in 1909, this was a fib, too. Honolulu is a very insular little city, and I can still be in a conversation with someone and we're trying to identify someone and I can say, "Fanny Halpern was my great-grandmother," and a look of sheer dread and horror washes over the other person's face. She was teeny but scary, kind of like the Ebola virus
I know what you mean. Lyuda once tried to phone her mother when automatic dialling first got to Achinsk. However it hadn't quite mad3e it to the Trans-Siberian-Railway phone network, which they are on. She tried various combinations of dialling codes to see if there was a gateway operational, and in the process got a non-railway Achinsk number with mostly the same digits. She apologised and explained who she was trying to call. The woman said "Oh I know Ekaterina Hasanovna, I'll take her a message". As the rather controversial headmistress of the local school for many years, a whole generation knew her.
My father's mother's people were Russian Jews from the eastern-ish part of the country who did the stereotypical coming-to-America Ellis Island thing around 1887. It was so interesting to read Lyuda's memoirs as she was a Tatar. Tim, I'm descended from Russian Jews. Tatars (as Cossacks) are a part of our family culture and are objects of fear and loathing! I was fascinated to read that yes, there were normal Tatar people and they didn't necessarily spend their days raping nice Jewish girls and setting fire to shtetls.
Many men say "My mother in law is a Tatar", usually meaning strong minded, autocratic and bigoted. Mine really is a Tatar. She's hardly 'normal', but I don't think she ever raped a Jewish girl, nice or otherwise. Most likely not. :) Many of Lyudmila's friends were Jews.

Your tale of medical malpractice (www.tim-jackson.co.uk/bcancer/negligence.html) was fairly horrifying, and what a difference between the UK and the US. If a forty-something went to her doctor here with complaints of breast pain, she would be clamped in a mammogram machine so fast her hair would curl. Where we fall down is people outside of the age group that conventional wisdom tells us is afflicted with breast cancer. Like me. :)
Her wonderful female GP was still of the "if it hurts it isn't cancer" school. Admittedly diffuse cancers are hard to diagnose and do have symptoms similar to mastitis, but she made some pretty inexcusable mistakes. I suspect there were some communication difficulties too.
Yeah, and the first mistake was not taking Lyudmila seriously.
I suspect that because Lyudmila was foreign it was assumed that she couldn't possibly know what she was talking about. But the woman was just arrogant. Her main error was to refuse to re-examine and reconsider her diagnosis when the problem got worse.
Okay. I'm on your side, now. Arrogance must be dealt with.

How old is Natasha?
Six and a half.
What a nice age. She speaks the language, unlike my niece, who is two, and communicates in the kinds of noises that only dogs can hear.
Natasha not only speaks English, she speaks Russian too, although she hasn't had much practice since her mother died.
I imagine not. Maybe you could find a little girl around her age in Russia who would like to send videotapes back and forth... pen pals for the new millennium. Do England and Russia use the same videotape format?
Would be a nice idea but you've got to find a Russian who can afford a camcorder. We have had tapes from Russians and they do play on our VCR, although their TV's are SECAM (like France) not PAL (UK, Germany). We have a stack of Russian cartoons and films on video. Anyway we don't have a camcorder either, although I do have a webcam.
I keep forgetting how things have gone downhill since 1990. I had a dear friend in Latvia to whom I used to send Hawaii touristy-type videos (but he asked for PAL-format tapes). He was able to pass them around to his friends and they got together and sent me a tape of them wandering around Riga. That was in 1990-91-92, though.
What we have got is a circle of bilingual friends, but none of the kids are near Natasha's age, one is 2, one is 14 etc., most don't have kids. But the adults speak a little Russian to her now and again. Other ideas, one of the Russian wives is splitting up with her husband, I wondered about hiring her as a child minder, and saving the state a benefit bill, but I fear she might become dependent. And I can't say I fancy a relationship with her.
Ah, yeah, I can see the sitcoms running through her mind as we e.

Making Sunday lunch run smoothly for the usual plus a family with four kids is a challenge at the best of times, but it went well.
Yay for you! What a star. Did we have hot dogs and crisps for lunch, or was it a real cooked meal?
Roast lamb
I'm *really* impressed. Garlic, mustard or mint?
Mint. Roast potatoes, roast parsnips, glazed carrots etc etc. Fresh fruit salad for desert. Hungry?
Actually, right now, no. David has gone to Salt Lake City on business. He has been gone a whole week, and just found out that he will have to be there until next Wednesday, instead of coming back this morning, as I expected. Anyway, as he's not here, I'm not cooking the nutritious well-balanced very yummy things I normally cook for dinner. As I'm not working yet, I'm staying up late and carousing. So I had a large bag of microwave popcorn for supper last night at around 10:30, and I am still stuffed. 
Do you know, I have never in my life eaten a parsnip.
Looks like a large pale yellow carrot. Fairly strong flavour, and sweet if it has been harvested late, after the frosts. Kids don't like them much because of the strong taste. They are normally boiled and a bit boring but they are great roasted in strips.
Hmm. What do you mean by strong? Strong as in spicy, or what? Or just as in horrible, as in bitter melon?
Not spicy no, probably more of the latter.
I think the cooking wasn't as much problem as keeping 5 kids at the table.
That's what duct tape is for. (evil chortle, rubbing hands together.)
I'll pass on the recommendation to the parents.

I got Natasha back from my parents today, and remembered how she never stops talking, especially when anyone else is talking, but at just about any other time she is awake too. I think an industrial size pack of duct tape might be just the answer. :-)
Hopefully I'll be around to remind you of this little complaint when she is a sullen, spotty fifteen year old who hates you. :)

I'm still doing work I took on before Christmas.
Well, we've established that the Y2K bug was not too much trouble, so maybe you can blow off any Y2K-related stuff? :)
Yeah I made £10k out of Y2K from a large US corporation early last year. It was fun. They have 130 factories around the world, and they suddenly got scared about Y2K on the shop floor. So they threw money at it, hired just a mass of engineers in Europe, anyone who knew a relay from a machine tool, and some who didn't, and sent us around the plants, inventorying, training and auditing. It was great to walk up to a factory gate and say "Hi I'm your Y2K auditor." That was OK in UK, not quite so easy in Italy & Germany. Got treated like top brass, and 100% US Government per-diem scale living allowances too, that rates 4-star hotels here.

These jobs I'm doing are design & build work. I already designed, built and paid for (customer pays an advance) the control panels, what I have been putting off is the site work, installation and commissioning, because that means I have to travel away from home for a few days. This week I just cleared a big chunk while Natasha was at my parents.
More power to you.

I just got a job, so no more sitting around on unemployment. I am pleased with myself because it went so smoothly, and even with my inappropriate-for-interviewing clothing they liked me and hired me quickly.
But on the other hand... ick, back to work on Monday.
Well done, but why wear inappropriate clothing for interview, why not wait till you start?
The last time I worked at a for-profit company (that was not on Midway Atoll) was 1989. There was no such thing as "business casual" dress codes at that time. I knew that one wore suits, hose and heels to work, world without end, amen. So I was feeling very meek the other day in my dress (not a suit) and low-heeled pumps (not high heels) and, of course, The Hair; the lady who was interviewing me said that I looked all right, though, and I could wear plimsolls and socks to work when I started. (!!!) My, how times have changed.
I will be part time through training, around three weeks, and then move to full time. Sadly, the part time will pay just as much as my unemployment. Boo! I could sit around and watch daytime TV and make just as much money. Sigh. I suppose it's best in the long run, though.
Living a secondhand life watching TV turns your brain to mush, and doesn't lead to any pay rises. Stay here with us in the 'real' world.

My hip has been KILLING me for the past three days, as you have no doubt heard, and reading more information convinces me that it is, indeed bursitis. I am trying to find someone in town who will give cortisone shots, which is what I'm pretty sure I need. It would be nice if I could find this person before 8:00 on Monday morning.
Maybe if you jump up and down and smile a bit. I had to do that once for Lyuda.
I used my medical jargon, modestly admitted that I have an MPH, flirted brilliantly and amusingly with the doctor, fought back tears and little yips of pain nobly and got my shot, after waiting for my blood work to come back. OH MY GOD the shot was an *intensely* unpleasant experience, but very well worth it, she said, gracefully sinking into a dumpling-round lotus position on the floor and heaving said dumpling self off the floor with a minimum of pain.
Well done, both with the diagnosis and the acting!
What acting? I am a truly noble person. I was letting my inner stoicism show through. :)
Let us say externalising your symptoms then.  Getting a Dr to empathise with what you are feeling is not easy for either party.

Did I ever tell you this one? We were on a canal-boat holiday and she had just started with mets. She was on morphine 30mg b/d. Friday afternoon about 4:30pm in the middle of nowhere she announced that she had run out of morphine pills. We stopped and I got a pedal bike out. I rode a couple of miles up a rough muddy canal towpath to a small town ahead which I recalled was something of an upmarket retirement area. I found a pharmacist's who told me where to find the GP's surgery, and that he would still be open for another 15 minutes. Dripping sweat and covered in mud I turned up at the surgery, and got to see the doctor himself as soon as he got rid of his last patient.

That is above and beyond the call of duty.
Well it was either that or put up with her for a weekend 'cold turkey' with no analgesia.
Okay, no praise then; you did what you had to.

The old guy happily wrote a prescription for about month's supply of morphine on the basis of nothing more than my story, commenting that one had to be careful about issuing prescriptions for controlled drugs these days.

I feel GREAT today. I have cleaned the entire house, which I haven't been able to do for a long time because I haven't been able to move. Very therapeutic.
I also put together one of my favorite relishes:
Blacken, peel, clean out ribs and seeds and slice in 1" wide strips several sweet red bell peppers. (Capsicums?) They will be quite soft and slimy.
Layer them in a sealable dish with olive oil, capers, cracked pepper and sliced garlic. Seal dish. Allow to contemplate its sins overnight.
Serve draped over toast with cream cheese, over broiled fish, etc. Very pretty and bright red and full of vitamins. And it tastes great!