Tag Archives: metastatic cancer

Kicked into the long grass doing my “stuff”

Another decision making hiatus, another step forward, and, as a bonus, another new word. I am a “neophyte” that is. if I have understood the word correctly – converting to my own lay medical approach of dealing with metastatic cancer. I have stopped treatment.

Life is short and I am going to go my own way (not sure why this is all starting to sound a bit Fleetwood Mac) through it and quit being medicalised. I have reached a point, at last, when I feel my judgement is sound and I am not being controlled. I no longer want to be a slave to the hospital, all its sub-text and endless testing (not forgetting the permanent incumbent worry). I have decided to consider myself “better” and plan to “live” accordingly.

  • Yes…I have thought about it…(fancy…)
  • Yes…I know what I am doing
  • Yes…I have discussed with my oncologist
  • Yes…I have discussed with my family
  • and no…I don’t need further advice

I have now got the hang of this going solo lark. I make my own choices based on what I consider to be important. Finally I am finding out what I do consider to be important; what makes me happy and what catalysts make me spiral downwards. So…that’s the plan.

 

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Power-down

Despite a week of more medical assignations than any other activity, I thought I was doing OK. I not only confidently signed up for a 7.25 (am) “Power Wave” class, 20 minutes of “high intensity workout using the PowerWave bag for all ages and all levels of fitness.” How hard could it be? I signed up for more than one session of the series…metastatic cancer, unexplained heart stoppage, diabetes type 1, sciatica be damned

In my typical brain trying to defy body mode I even went to the gym before the class and did 30 minutes of strenuous aerobic activity.I thought I was being sensible (?) and warming up.  All I can say about the experience is that I seemed to enter a senior moment time-warp the minute I entered the class. I was shown (1:1) how to hold the PowerWave bag and I forgot in the second between being shown and being given the bag…several times…Repeat for the first exercise…so now I am not only holding bag wrong but doing the exercise wrong…

I didn’t even last the warm-up (which was without the bag) before I decided that this really was not for me and collapsed in a giggling heap (on my own) on the running track. Of course any “normal” person might have recognised  the likelihood of this before signing up but I quite like the thought that “This Girl Can”…even if I can’t…

Powerwave_test_1024x1024

 

There’s no place like home….

Whilst I love my home…I wish I could do “Dorothy’s” trick, click my heels and be transported elsewhere. Don’t get me wrong, it is very lovely not to be in hospital, but not being diagnosed brings a whole raft of new and different problems and restrictions. Whilst I knew I was never going to defy the cancer, I did really think I could duck and dive my way round diagnostic testing to enable me to follow my dreams. But no…

So, new situation new dreams…

Whilst I remain fairly fragile, lethargic, anxious, exhausted yet wakeful (fearing the hallucinations) my brain continues to process the changes and is now on a major diversionary route. The consequences are that I’m now thinking…topiary..never let it be said that my dreams have diminished in size (and of course doo-wop remains on the list of possibilities.)

topiary

…and I have a new pigeonhole to nest within. It appears that (if I have enough energy, commitment and develop a love/tolerance for phonecalls and paperwork) I can become a “Category H” disabled person and qualify for a free bus pass. But if and only if, I can provide evidence (and there’s the rub) that I am liable to sudden attacks of giddiness or fainting OR that I have “another medical condition” which means I would be a danger to the public if I drove. I think any word with “other” in has to be the category for me.

Fainting is the latest explanation I have been given for my ICU stay. I am told that fainting can be fatal. Who knew?

 

“Plain English” has left the room

Monday finds me in Acronym City…I have been on its fringes for ages as I mull over what planning ahead actually means. There aren’t many days when I “forget” but some days inevitably better than others. I have dipped my toes in this forward thinking several times but then scampered (?) away but today I was pushed (in the nicest possible way)! So….

  • I have setup my DNACPR wishes
  • and started to fill in my ADRT
  • Thank goodness I already have my POA done and dusted

For the non-cognoscenti

  • DNACPR = Do not attempt cardiopulmonary resuscitation
  • ADRT = Advance decision to refuse treatment
  • POA = Power of attorney

and now I am going to have a G&T because I know what that is…and I like it!

To everything there is a season

..whilst my inclination is to noisily start singing Turn! Turn! Turn!…I will instead post this..and try to follow because this is what I think I now need to do to live the life I have left, the way I want to..

I will, however, insert the caveat that I am interpreting “by yourself” time as “by yourself with cats, anti-depressants, wine and therapist” and add the lyrics to Turn! Turn! Turn! (because I never want to be known for being compliant!)

Brain Pickings

“Turn! Turn! Turn!”
To everything – turn, turn, turn
There is a season – turn, turn, turn
And a time to every purpose under heaven

A time to be born, a time to die
A time to plant, a time to reap
A time to kill, a time to heal
A time to laugh, a time to weep

To everything – turn, turn, turn
There is a season – turn, turn, turn
And a time to every purpose under heaven

A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones
A time to gather stones together

To everything – turn, turn, turn
There is a season – turn, turn, turn
And a time to every purpose under heaven

A time of love, a time of hate
A time of war, a time of peace
A time you may embrace
A time to refrain from embracing

To everything – turn, turn, turn
There is a season – turn, turn, turn
And a time to every purpose under heaven

A time to gain, a time to lose
A time to rend, a time to sew
A time for love, a time for hate
A time for peace, I swear it’s not too late!

A last gasp denizen of Iffley Fields

My hair – which I am not complaining about…I will never again complain about a headful of hair, however blowsy. However it seems to have arranged itself in a style which reminds me (and others) of a poodle. It has been doing this for several days and I wonder why (only in passing of course!)

More worrying however is the complete insomnia being caused by the ever diminishing freezer and fridge contents in readiness for my house move next week. This is not an area that can be defined by “less is more” and I am very troubled.

The freezer still has an eclectic mix of items which challenge my culinary imagination: Fish fingers; ice cream; potato croquettes (only 3 years past their best before date); a variety of flavoured breadcrumbs I have made; pancakes for crispy duck and enough butter puff pastry to allow for endless “tart” mistakes, and then some!

The fridge – I am doing less well with. It remains well stocked but not really with ingredients for doing anything very interesting with…and then I rummage – ah yes…6 bottles of wine, pickles, butter, mustards, relishes, fruit juice, nail varnish, milk and of course stuff from the freezer that I defrosted to eat and instead I look at it…but phew…there is cheese..coffee, wine and tomatoes so I will be fine.

Back to the hospital tomorrow which I had forgotten about until a cheeky text popped up yesterday to remind me. Heart this time, it may be broken but hopefully the beat goes on…

Cat on hot bricks

..and so I face a week of stacked up appointments…back in the scanners again tomorrow then blood tests then GP then dental work then echo then oncology. Wish it wasn’t all so routine and “normal” for me yet hang on to the feeling that maybe “routine” is better than “urgent”.

It does bring home how I have normalised living with cancer, type 1 diabetes and a limited life…I am having to take it in my stride…along with selling the house, getting divorced and keeping close to my dying friend…Really no opportunities to sweat the small stuff…or the big stuff…or indeed any stuff!

Do dreams come true…

I have spent much  most  all of my adult life wishing and dreaming I was slim (rather than doing anything about it!). Somehow I thought a different life would await me if only I was a slim person…a small breasted, slim person. Well, how right I was and how wrong I was. Sadly, the “different” life, now I am slim, is not the one that I had thought I was waiting for nor the route taken. But there’s the thing, maybe I needed to be thrown off the cliff to get slim (and a different cliff for the small breasted version) and now need to re-create myself and my new life…Hmmmm…not quite what I had been thinking all this time…but there again, nothing has been what I had been thinking…should I stop thinking, perhaps?

I have lost over 25kg since my husband walked out on me seeking comfort and “a new life” with my ex-friend. I have  survived this – physically shrinking and mentally growing in the process…I may still have metastastic cancer but hey…I tried on an extra-small dress in a shop the other day! EXTRA-SMALL??? I didn’t buy it but that wasn’t the point – I looked great in it, really great!

…and the cat…the story is not over…he is, in theory, now staying here BUT he hasn’t come “home” yet today…

My First Haircut

jackson 5

So…a year after the end of chemo I had my first haircut. I no longer look like one of the Jackson Five – “hairwise” that is (of course)…
Hair that has grown back is less grey than the hair I lost, fancy that – me bucking the trend….Guess it must be the lack of stress & worry over the past 12 months! Yeah..right!

Adulterous husband
Cheating friends
Dying friend
Divorce process
Retirement
Reduced income
Unexpected passing out
Metastatic cancer
Spondylolisthesis

but hey…I have hair again…