Whilst festering at home I have discovered that I am now retired. How can that be possible? I don’t feel very old and, at the moment, I don’t feel very ill. You would think by now I would be used to surprises but it seems that I’m not…I have no retirement training under my belt and have not been offered any induction programme so I guess I will just have to act the complete newbie and think on my feet with this one. At least there won’t be new software to learn (or will there?)
I do know that I won’t be going to any handicrafts classes, be learning to cake decorate, do “scrap-booking” (indeed…what is this activity that seems to be rife for “senior” Americans?) nor will I be going on a Saga cruise, so that’s a start!
When people ask me “What do you do?” – how will I reply?
- I go to the hospital
- I read a lot …and write a little…(maybe the emphasis could shift?)
- I’m a gym bunny
- I’m in therapy
- I’m retired….(N’ah..not this one!)
or ….”Sometimes I sits and thinks, and sometimes I just sits…” (courtesy of A.A.Milne and Winnie the Pooh)
The clocks go back tonight which, overnight, presages winter…I am feeling maudlin about it, despite the fact that my summer has not been exactly riotous! Still, the sooner this year is out of the way the better, and I guess that means facing winter!
On a personal achievement front I am now in possession a Swedish recipe for gravadlax (and yes…it was translated for me!). I love the fact that you need “insane amounts of dill”. I may need to give this a trial run very soon, when I gather the wherewithal …Surely this should be a something in everybody’s repertoire but somehow it eluded mine. The method looks straightforward enough but the thin slicing element may have to be “outsourced”!
Health-wise – I thought I was laying low for a brief interlude but my “leprosy” seems to be ambushing me again – it has mounted a rearguard action and seems a rather different presentation from the last bout. Itchy as hell though….whatever it is!
After a rather protracted trough I think I am now being dosed with a large enough dose of anti-depressants to make me feel normal, or abnormal – depending on perspective!
I spent yesterday afternoon being dosed with Herceptin at home. It is a curious situation being treated at home. The nurse has to observe you, as the drug infuses over a couple of hours and, as we are both sitting on armchairs in the living room, it feels like the only option is to talk to each other. I think it would seem very rude to pull out my book to read. This enforced intimacy is rather bizarre and, I imagine, rather like the confessional…This was the second time this nurse had visited so I “know” her now!
I learned about the tomato varieties she grew this year, how the housework is shared in her house, the unpredictability of cancer…and more…She learned about the novel I talk a lot about writing and the emotional fallout of the divorce process. We had a long discussion on hair loss from chemo. She told me that I was in the majority (of “her” ladies) who suffered far more from loss of their hair than from the loss of a breast. How soon, I wonder until we look back on chemotherapy and wonder how patients possibly subjected themselves to its brutality? The two hours flew by! Next time we plan to discuss assisted dying/refusing treatment and Dignitas!
Scans and echocardiogram now loom…
Am struggling to blog at the moment. On one level I feel like I am trying to exist in some hermetically sealed vacuum (with my novel) so that none of the horrors I am facing, can touch me…but sometimes I have to venture out and “feel” reality…that’s not been so good…
Today seems to be a morning of breast care nurses. Anxious call from the hospital – not sure why they were worried (maybe because I am laying low?) There was further discussion about the prosthesis. I didn’t mention that I have got rid of it, I can’t imagine “the time when I might want it”. I see it as one of the nick nacks I have gathered on this journey (which includes April the wig, “my” pink tourniquet, a variety of headwear for the hairless, “difficult” veins, tablets and creams galore, a cupboard full of dressings, a two-timing husband and a spineless, cruel “friend”). Then I have the calls from the Healthcare at Home nurses planning their Monday visit for Herceptin dosing – Round 3 at home.
Some days I feel a fraud – I feel well, look reasonably well and am able to function like a regular person (physically at least, emotionally I remain a black scribble) and I truly wonder if the cancer has gone. Two weeks now until the next scans…then I guess I find out what’s going on inside. Meantime I have had to crank up the anti-depressants.
I like to be the person offering help, supporting friends and family and able to give as much as I am able. I am not shaping up too well as a person who is good at accepting help. Maybe it is some sort of breakthrough to be finally realising that I need the help that is being offered and that I shouldn’t keep turning it down. Maybe I need to accept the very genuine and amazingly generous offers of support I am getting from all sorts of people.
Having had my trust ceremoniously destroyed on the still flaming bonfire contrived by my husband and supposed “friend” this is a huge step for me. How do you know who to trust and who not to trust? Everyone looks the same as they ever did on the outside. Do you ever know or do I just have to, as vulnerable as I am, trust that those arms that keep reaching out to catch me, are “safe” arms as I continue to bounce, bewildered down the precipice?
“Whoever is careless with the truth in small matters cannot be trusted with important matters” Einstein
It’s a difficult week….Great British Bake Off ended last night…leaving a gaping mid-week void…What to do?
Easier to live in this “fictitious” world – (in a big tent full of little kitchens in the middle of summer), than my real world at the moment….Too many “ologies”…too many forms…not enough sleep….and…what do you know the retreating “leprosy” is still worrying the dermatologists….
It is ten months since my last chemo treatment and I, only now, have enough hair from which I can squeeze water out , after a shower (a very small amount of water squeezed from a very small amount of hair)…Not sure if people were being “encouraging” by saying it only took about four months for your hair to come back, or whether I misinterpreted “hair” as being hair you would recognise as being a part of me! Either way, it’s back – very different…but back! However….not enough to grow a fringe (of any sort) yet…
It is “ology” week again this week….
First – Dermatology consultants today and their array of both clinical and phone photos of my arms. I hope that I may be able to put “skin” to bed as my leprosy has continued to improve since the toxic “pertuzumab” was stopped. I am reluctant to say that the problem has gone as I seem to have a different skin condition developing – on my shoulders – but maybe I won’t mention that. The more I mention, the more hospital appointments I gather…Think I have now (finally!) got a handle on the things I really need to follow through and those that can fester on the sidelines.
The endless autumn/winter seems to have arrived today. Struggling to summon up the necessary stoicism to face it…or indeed anything much else at the moment. More a case of going through the motions. This living in the moment stuff is much harder than it may appear. As usual, at this time of year, I yearn to hibernate – more so than ever this autumn…I dream of burrowing away (sleeping…now wouldn’t that be great?) and waking up to sunny blue skies and no problems…
Had a conversation yesterday with a fellow cancer friend/victim/sufferer/patient….We debated our “pet cancer hate” which is constantly being told to be positive – what’s that all about? Nobody else is always positive, why should we be? We’ll be positive, like others, when there is something to feel positive about! Oddly, having had my prospective life torn from me by two people with no apparent moral compass, I am not in the most positive frame of mind. However…they do say that revenge is a dish best served cold.
Meantime I spend my day filling in endless forms with endless blank sections as none of the choices available to select seem to apply to me. I seem to be the same anomaly to bureaucracy as I am to medicine…