Tim & Catharine - letters
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 And it is the loss of my beautiful and loving wife, who has been replaced by this scarred twisted and tortured creature I live with.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.
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
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 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.
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.
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.
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.
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,
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
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
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.
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).
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.
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.
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 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.
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.