Measuring worry

Vega is still afebrile (fever free). I am not making any hopeful comments about this quite yet, but the atmosphere here in our little iso room feels positively upbeat.
That is a real relief because I have been worried these last few days and as worry goes you only really feel the extend of it when it eases. My body in particular feels and looks tired as the sleepless nights, hospital air condition and microwaved junk food take its toll. It really is time to go home.

Last night I got a text from Ray, saying that Alys is waking up often and is crying. He thought she had a fever, but the thermometer was here with me in the hospital so there was no way of knowing. I don’t really know why he texted me because there was obviously nothing I could do but I guess it is just like me blogging to all of you here. So many of you have commented on my blog, often saying that you can’t imagine what we are going through or even shared something that has worried you in the past or now, may it be health related or not. It made me think that really there is no measurement for worry and I think that all of you know exactly what we are going through. Not the particulars of cancer treatment or hospital admissions maybe. But the stress, the anxiety, that lump in your throat that you just can’t swallow, the cloud over your head that makes it hard to think of anything else. You have all felt like that at some point in your life. That is why you respond to my blog. You all know exactly how it feels and your comments are reaching out to me with that understanding. I worry about Vega, obviously, but I realised last night that I worry equally much about Alys who is at home and I am not with her. When I worry, I do so fully and not in measures, just like I would love someone fully. Because loving someone just a little bit, what’s the use of that?

Tonight I am here with Vega again and Ray is at home with Alys who has indeed got a fever now and is a bit poorly. Ray can not miss work tomorrow and Alys has a long day of being babysitted ahead. I feel terrible about abandoning my ill baby. Ok I know it is not abandonment per se but I just can’t split myself in two. And this time it is Alys who is missing out.
Ill health, or cancer in this family’s case, is taking things on so many levels. Nibbling, eating, chomping, ripping away on our family life, stealing time, money, and often sanity. The loss of control extends far beyond handing over my sedated three year old for a ct scan. I sometimes feel like I am being robbed of a “normal” life, for me and my children.
So tonight I am here with Vega who is better, and I am away from Alys who is ill. It never ends. Did I say it is time to go home yet?

6 thoughts on “Measuring worry

  1. It must feel so hard Kathi. I think of you and how you’re separated for long periods of time from the rest of the family… And like you say, the balance at the moment is never quite right, because Vega is ill. Let’s hope you and Vega go home soon… and that you get some time with your other precious girls, and Ray (and for yourself, if that will ever happen!) Love and crossed fingers and toes xxxxx


  2. Oh shit n crap Kathi – there i was hoping to hear you will get to go home soon and so now i am wondering if they will let Vega home if Alys is ill – God how on earth do you keep a neutropenic environment with 3 kids????? so sorry to know your babe is sick and wish i could share your worries for you for a day – actually have them for your whole birthday. I can only say i feel every moment that you write of, empathise deeply and have you in my heart always.

    As you so poignantly put – there is no measurement for worry (get my latest petscan results and bloods tomorrow – yep worrying about that) – so really wishing that you get some relatively worry free moments for your birthday and are surrounded by the love of your family and friends. hugs xxxxxxxxxxxxxxx


  3. Kathi,
    im Februar war ich beim Hautarzt, weil ich einen komischen Fleck am Hals hatte, der sehr schnell immer größer wurde und auch keine Ähnlichkeit mit meinen ca. 500 Leberflecken hatte. Diagnose Hautkrebs, ich soll mich direkt an Chirurgen XY wenden. Das wird einem dann unerläutert ins Gesicht gesagt. Der Chirurg war netter und meinte das sein ein Basaliom (halbbösartiger Hauttumor), damit sein ich früh dran, die bekommt man in der Regel ab 60 und schon gar nicht unter 40, aber man schneidet das im Idealfall einfach raus und dann guckt sich ein Pathologe an, ob es weit genug rausgeschnitten wurde und sonst schneidet man nochmal nach. Außerdem sei der Hals noch ne Top-Stelle zum entfernen, viele bekommen die auf der Stirn, an den Ohren oder auf der Nase, da wird es dann schwieriger mit dem nähen, soso… Ich gehe mit so etwas ja meist pragmatisch um und sage mit, wenn die noch mehr von den Dingern finden, dann spare ich mir im Alter die ganzen teuren Kosten fürs Lifting. Wenn man dann aber mir blauen Miniplastiktüten an den Füßen auf nem OP-Tisch liegt und sich überlegt, dass gerade jemand nen Lappen Haut aus dem Hals schneidet damit ein anderer diesen Lappen unterm Mikroskop untersuchen kann, dann ist das schon ne strange Situation. Daher habe ich ganz großen Respekt wie tapfer ihr und vor allem Vega mit der Situation umgeht. Und klar macht man sich Sorgen, wahrscheinlich nochmal viel viel mehr, wenn es um die eigenen Kinder geht. Daher wünsche ich Dir zum Geburtstag einige sorgenfreie Momente und vor allem für die Zukunft viele sorgenfreie Tage mit Deiner Familie.


  4. It really is a case of “when it rains, it pours!” sometimes. Aww goodness, although I’m not religious, whatever greater powers-that-be, I wish they’d give you a break. I hope that Alys is better very soon and then Vega and you can be at home where you belong … together with your family.


  5. Hello darling, although I was unable to check the blog for the past few days, I was thinking of all of you a lot and I cannot say how much I would like there to be a ‘no worry’-pillow that absorbs your concerns during the few of hours of sleep you get. I am glad to read that everyone’s comments give strength and support, and co-cross fingers and toes for you to be able to go home very soon.


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