Là Obar Bhrothaig '22

Every year I look forward to the sixth-of-April anniversary of the Declaration of Arbroath, and this time was no exception. It's one of the special days of the year for me, when I do some festive / leisure things I don't usually do, reassess my backlogs / to-do lists and so forth.

Well, in the end it didn't exactly work out that way this year.

In the end I was so feeble I did only a very few of the usual things. Instead, towards the evening, I finally faced reality: I just couldn't cope on my own any longer. So I decided to accept the doctor's advice and apply for a place in a hospice, and mailed Black to make the apropriate steps.

Funny thing is, this is what I'd been wanting to do for some months now, but until recently saw no way of accomplishing it. In an odd way I'm looking forward to the experience.

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Another hard day, although not as hard as I'd been afeared. Black (who also restarted my disability pension application) and my sister met at my place for the first time, and we were all met for the first time by a doctor and a nurse (both female) from a palliative care team. Basically they were mostly just learning about me, and the three of us about what can be provided by them and what by others. Doesn't seem all that hopeless, even for later when I'm terminally bedridden. For the time being the main task is eating more - something I've known for months I should be doing; now my sister tries to help me to actually accomplish it.

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Tried to eat some salami - partly wanted to feel in my mouth some tougher consistency than biscuits &c again after several days, partly reasoning red meat might be good for my erythrocytes. Not a success: the sensation was pleasant indeed, but after just three of those thin factory-pre-cut slices I threw it up again. Well, at least I've tried, which is more than I manage on most of these days, at least food-wise.

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Abair latha ... Black began mailing and requesting timeous replies as early as half ten in the morning (when I'm usually still fully or at least half asleep) and kept doing so; there were other mails too; in addition my sister unexpectedly phoned me in the afternoon ... little wonder I had hardly any time or energy left for drinking, eating or laptop in the meantime, mostly just resting in a recumbent position instead. But it seems things are at last moving somewhere, on more fronts than one.

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Toiseach na dàrna seachdaine, and it doesn't feel like I've made any progress. I've surely been trying, but not achieving. True, I'm spending more time on laptop, but still not near enough; much more importantly, for all my attempts and intentions my liquid intake has scarcely risen, I probably spend as much time just lying as I had before, and likely I eat even less. So my hypotension and general feebleness remain unabated and permanent.

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My sister's birtday so still taking it easy: didn't want to risk her needing, instead of celebrating, to have to take care of me if I finally collapsed. Also, a third day in a row with basically no laptop - had tried on Monday but the moment I sat down to the desk and looked at the screen I got such vertigo I needed to immediately return to bed. (These recent 'posts' are handwritten in a paper notebook, to be transcribed into this blog later.) Still, did a wee bit of tidying up.

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Coincidentally Là Naomh Daibhidh agus Pancake Day, but terrible: hypotension so bad I could hardly stand up for a few secs without feeling I was about to faint. (Basically no laptop and minimum food intake as well.) Suspect it's 1) too much time in recumbent position and 2) permanent dehydration, so resolved to make rehydration & drinking enough for the time being the utmost priority.

Toenails

After about two months, maybe even more, I've finally managed today to wash my feet and cut my toenails. Doesn't look like a big deal, but in a sense it is; the mere fact that I've finally forced myself to try is encouraging: maybe there's still hope I'll gradually become able to manage again some more difficult tasks as well.

Vertigo

It seems like no matter the time of day I can no longer stand or walk for more than a couple of seconds before hypotension makes me feel like fainting. For weeks now I haven't even dared to go dowstairs to check my letter box, let alone carry out the rubbish. It's the worst before sunrise though: occasionally when going to the loo (having recurring bouts of skitters as well) in the early morning it feels like I'm on the verge of a heart attack.

I don't know how long I'll be able to go on like this.

42 cilo

Rè nan ceithir sheachdainean bhon tadhal mu dheireadh agam san ospadal, bha fhios agam nach robh mi ag ithe gu leòr. Ach bha dùil agam gun robh mi a' cumail nan 46 cilo a bha agam aig an àm. Cha robh.

Dar an deach mi ann a-rithist an-dè, cha robh ach 42 chilo agam. Eagalach gu dearbh. (Cuideachd, thathar ag ràdh gur e 42 am freagairt airson a h-uile rud ...) Mar sin, a thuilleadh air an stad a chuir sin air a' cheimeo-theiripe, chuir mi romham gum b' fheudar dhomh ithe fada nas motha. Agus ithe pròtainean, beòthamanan agus mar sin sìos, seach dìreach gualuisgeachan.

Tha fhios gu bheil seo a' ciallachadh àm nas lugha airson leughaidh agus a bhith nam shuidhe aig a' choimpiutair-uchd, ga chur seachad ag ithe an àite sin, ach tha sin do-sheachnadh. So an-diugh, air 'St Mungo's Eve', thòisich mi air. Chan eil e furasta, bha eadhon pian ann (gu follaiseach, tha mo stamac fìor bheag an-dràsta), ach feumaidh mi cumail orm. Chan eil dòigh eile ann ma tha mi ag iarraidh maireann beò.

 

Thadhail m' athair orm

Abair latha. An toiseach, dh'fhair companaidh lìbhrigidh dhomh dà leabhar Beurla bhon Amazon (eachdraidh na Frainge agus eachdraidh na Nirribhidh). As dèidh sin, thàinig m' athair às a' bhaile aigesan le poca làn bìdh o mo mhàthair airson ama na Nollaige. Agus fhad 's a bha e an-seo, dh'fair posta litir clàraichte dhomh bho Roinn na Tèarainteachd Sòisealta (a' gearan nach d' fhuair iad fhathast pàipearan bhon dotair-teaghlaich agam).

Bha e math m' athair fhaicinn a-rithist, ged nach do mhair an còmhradh eadarainn na b' fhaide na dà uair a thìde, 's nach robh e ro inntinneach a bharrachd (sa mhòr-chuid mu dheidhinn peinnsean ciorramachd a bu chòir dhomh fhaighinn agus rudan co-cheangailte ris), ach bha e taitneach dìreach cuideachd a bhith agam as dèidh nan làithean, agus thuirt e dhomh aon rud inntinneach:

Thuirt e gum b' fheàrr leis caochladh a-nis, dar a tha e ochdad bliadhna a dh'aois ach a' smaointeachadh agus a' gluasad ceart gu leòr, seach as dèidh ceud bliadhna a dh'aois, ach le cràdhan mòra air/no leabaidh-laigheach air/no le seargadh-inntinne. Bha e coltach nach robh eagal a' bhàis aige tuilleadh. Feumaidh mi aideachadh gun robh ('s gu  bheil) farmad agam air - air sgàth an dà chuid cion thrioblaidean cuirp agus cion an eagail.

Sùil air ais: an ospadal

Aig deireadh na Dàmhair, chuir mi seachad seachdain san ospadal, agus bha droch naidheachd ann cha mhòr gach latha.

Diluain, chaidh innse dhomh nach b' urrainn iad tuilleadh an aillse agam a leigheas, dìreach ga bacadh, ged a bhios daoine ann beò fhathast leis an seòrsa sin airson grunn bhliadhnaichean.

Dimàirt, chaidh innse dhan fhear a bha na laighe air an leabaidh eile nach robh aigesan ach beagan seachdainean no 's dòcha corra mhìos. Sin dar a thuig mi nach eil àm cho fada agamsa a bharrachd. Sin dar a thàinig trom-inntinn dhomhainn is eagal mòr orm.

Diciadain, dh'fhàg am fear, ach thàinig an ceartuair fear eile a bha a' coimhead air an telebhisean fad na h-ùine mar an ceudna. Mar sin, cha mhòr nach robh fois sam bith agam tron sheachdain sin.

Diardaoin, thuit fiacaill eile, clàr-fhiacaill LL1, às mo bheul. Mar nach biodh e doirbh gu leòr ithe leis-san.

Gu fortanach, dh'fhàg mi an ospadal Dihaoine. Ach maireadh e fada mus tòsich mi air a dhol beagan am feabhas a-rithist.

Third dose

As I've already hinted, the aftermath of getting my second chemotherapy dose was horrendous: hypotension all day long (even fainting once), lack of appetite and the consequent continuing undernourishment (today the scales showed 47kg - clad and shod) and diarrhoea, general weakness (had to trouble my sister for going my messages for me a few times) and so on.

(The silver lining was seeing my sister and chatting with her; when the post-effects became milder I also agreed to a visit from my old college friend Black.)

After a few weeks this improved during the latter parts of the days, although mornings continue to be hard: I'd had to postpone the hospital visit last week and only managed it today thanks to Black who drove me there. Anyway, now I've got my third dose. The doctor made it 30% less strong, and prescribed some pills; we'll see how I cope this time.

Merde

Ouais, d'avoir mal au dos ou ma au ventre, c'est mauvais. Mais il y a des médicaments pour ça. Ouais, l'hypotension est aussi mauvais. Mais il y a du café, et j'ai les béquilles pour ça. Mais il est aussi mauvais se réveiller et trouver qu'on a chié un peu dans son sommeil - et on ne peux rien faire contre ça. Il faut juste aborder les effets.

Quote: George Mikes: How to be Decadent

 

If you have to decay, decay with elegance and grace. 

(p 254 in the How to be a Brit omnibus)

Yes, I should accept that I'll probably never again be able to work full time, walk several miles in a oner, leave this country even for a week's trip, will have to think twice each time before spending any money, take conscientious care of my diet and regimen and so on. But maybe, with a bit of luck, I'll be able to go through the rest of my life without feeling, behaving and looking as a victim of some tragedy, preserving instead my mental faculties and my dignity.

Astérix ; des béquilles

Pour la plupart de la journée (quand je ne dormais pas) je lisais La Grande Traversée, un album Astérix que je n'ai connu pas : aussi bon que les autres. Je l'ai commencé et fini ; apparemment mon français n'est pas toujours complètement rouillé (du moins, mon français passif).

Et au soir ma sœur et mon beau-frère sont venus : ils m'ont apportés des béquille. Nous espérons qu'elles m'aideront à marcher avec mon hypotension. J'ai essayé et c'est un peu meilleur ; mais je verrai dans la nuit.

Fainted

Today was another low. Adjusting the Venetian blinds in the morning I noticed the whiteout approaching, but trying to sit down on my bed either tripped or didn't sit well enough. Anyway, a moment later I realised I was sitting on the floor, with the clothes horse fallen (must have knocked it over when falling) and a pain at the back of my head. Strangely, it felt as though I were waking up from a dream.

There was nothing broken except the skin of my skull, which I must have bumped against the open door leaf of the wardrobe, but as this hasn't happened before it's quite disconcerting. I'm even more worried now each time I have to go the few long, long meters to the loo - and I have to do that quite often.

An additional bad aspect was that of course I had nobody to tell and get solace from.

Fuar

Chan eil am brùthadh-fala ìosal agam cho dona an-diugh 's a bha e fad beagan làithean, ach tha a' bhuinneach air ais, agus airson adhbhar air choireigin, tha mi fuar. 'S mathaid oir bha mi fuar tron oidhche. Fear de na rudan as lugha orm sa bhaile seo, 's e an àbhaist an teasachadh-meadhain (no teasachadh air astar) a chur dheth buileach eadar deich uairean feasgar is sia sa mhadainn. Amadain.

Chemo round 2 ... and sister

Back in 2016 and last winter I had hardly any symptoms as a result of chemotherapy. However, I don't bear this FOLFOX one well. It makes me extremely tired and sleepy, and worst of all, a complete loss of appetite meant that during the three days of this round I ate almost nothing at all. But I survived and after having the pump removed yesterday my sister drove me back with three boxes of PEG food, which I began taking today. Hopefully it'll help me gradually put on some weight again, I'm around 47kg right now.

Incidentally I always suspected my symptoms resulting from various diseases were at least 50 per cent psychosomatic. So it's no surprise that after the pump's removal and later a short but pleasant chat with my sister at my place (the first such chat I've had with anybody since August) I felt much better, not just mentally but physically as well, despite the undernourishment and continuing lack of appetite.

I must wangle it so I see her more often. Likewise mail my other friends more often, blog more and become generally more involved on the Web again ...

Bent double

Another major problem is that the combination of belly ache and hypotension forces one into a stooping posture, whether one is standing or sitting. The vicious circle here is that the more time one spends bent double, the more the body gets used to it, seems to need it, so the more time one spends bent double. It's like addiction, in a way.

These days, I can hardly remain with my body straight for more than a few minutes at a time. Apart from the loss of time when walking somewhere or doing something on my laptop, when one stops to 'stoop and rest', this also means I can't have my hair cut or something done about my two incisors which have falled out quite recently (it never rains but it pours), because I couldn't stay in the barber's or dentist's chair for long enough for them to complete their tasks.