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Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow

Astrocytoma

About Jane's brain tumour journey: Astrocytoma.co.uk
 

What the oncologist said...

08 August 2011

Today I saw an oncologist and a radiologist. They walked me through Jane's treatment and her scans. The outcome is basically that once the brain tumour came back in 2008, Jane was never going to survive it. Although they could have done diffent things, it would not have changed the outcome. She never really stood a chance.

Although that is upsetting, it also makes me feel better. I don't have to doubt her treatment. There are no regrets, there are no What Ifs. It just was the way it was.

I now also understand why we were not given the full picture. It would not have made it easier for us to know in tiny detail that everything we did after October 2008 was just trying to put off her death. Sub-conciously we knew this, but it was never spoken out loud by her treatment team ( not the same people we saw today). I still would have preferred a little more info during her treatment but I understand how knowing everything would have made our last few years together depressing instead of hopeful. We would have lost the point to life.

I have many unanswered questions still But I now realise I no longer need the answers to them because it is inconsequential. I hope to get copies of her scans at some point and then I can show you what I saw today.

One of the most revealing things was that really brain tumour treatment is only one step removed from randomly stabbing in the dark. Scans don't really show what's going on. Patients might show deterioration or improvement for which no evidence is visible on the scan. So when I told the doctors Jane was getting worse, they were not hding the truth when they said the scan was still clear. They just couldn't tell.

Time for a stiff drink...

7 comments:

Julie said...

There is one little word in this that indicates (to me) that you considered that Jane was 'with' you today.

I have never lost a loved one the way you have, so my depth of knowledge and loss is shallow. However, if I open up the issues you raise here to life in general, it shows the absolute necessity of living life one day at a time. The progression of a brain tumour is perhaps as random as the proverbial bus in the high street that snuffs out a life.

Ages ago, but still this year I think, you said that had you known about the prognosis for Jane, you might have lived her last few years differently. I think you meant remove the shackles of study and work and indulge in more travel. Not sure.

How would Jane have dealt with dropping her doctoral studies and traipsing around instead? Does the 'life of Riley' make approaching death easier to cope with or would she/you still have wanted to achieve something (anything) with the little time she had left?

There are profound issues in your post today to 'tease' out, should you be interested.

Dutchcloggie said...

I agree that for Jane, it was best not to know. We kind of did know though. Just never discussed it openly. The oncologist optimistically told us he had people on chemo for 18 months and they were doing really well. 18 months was his longest living patient on that chemo. He did not spell it out but obviously the implication for further thought was there. But we never discussed it. Not with him. Not between Jane and me. Like the 6 year average survival time we read bout at the start of it all. We heard the numbers and then filed them away, never to be looked at again. Ironically, both numbers were right. She died 6 years after her surgery and 19 months after she started the chemotherapy. Perhaps the only time in her life Jane was perfectly average.

So looking back, a part of me wanted it all detailed. As if it wasn't real until the doctor said: you have 18 months max. Another part is pleased we did not live our lives crossingoff days.

I think I said I wish things had been different because after all the effort Jane went through, she ended up empty handed, with no PhD. That upsets me. I KNOW her wish was to keep trying and so I don't really think it was my right to tell her to stop. But at the end of it all, she was left somewhat empty handed. No PhD AND no travel to leave us with happy memories. No extra nights out for dinner, no extra weekend trips. No extra money spent because hey, who cares about money when your life is limited. No, everything went along as normal but in the end, she did not get to have her dream: to die as Doctor Daniel.

So I kind of feel she was short changed. Yes, all with the wonderful power of hindsight. Because if she had succeeded with her PhD, I would not at all have regretted all the extra nice things we did not do.

See here a grieving and acceptance process in action. Emotions change. Like shaking a bag of sand: after leaving it for a while, things settle into their correct place. Things that appeared to be most important at the start sink to the bottom and other things surface.

Ha! How is that for profound. And all in a single quick, unedited typing session of 5 minutes. Hurrah for impulsively letting emotions out (sometimes :)

Julie said...

I agree it was her 'right' to keep pursuing the higher degree. However, Jane did not KNOW she 'ended up empty handed'. Only you know that ... ah ... Wrong word there, Julie. Only you 'feel' that. She had achieved lots: under-grad degree, Masters. That is not empty-handed. Sometime during 2010 Jane ceased realising that she was working toward her doctorate. This is when YOUR thought processes converted to 'empty-handed' which is equivalent to saying Jane failed. Maybe this is a thought process you need to push to its limit and then ditch. To an outsider (me) it seems to avail little, and keeps your churning.

Do you make a distinction between grieving and mourning? I am reading Joan Didion's 'Year of magical thinking' and she makes a distinction.

Dutchcloggie said...

No, i don't think she failed at anything. I never said this, nor suggested it. You stte myy thought process as fact, rather than a hypothesis but I am afraid your assumption of my thought process is wrong here. She achieved much during her illness. She was unable to conclude her studies. I regret on her behalf she did not get the chance to achieve that dream of hers. She knew she was not going to finish it. She was aware that I had to suspend her uni registration. It upset her greatly.

In January 2011, she bought a notebook. When I asked her why, she replied: for when I get back to working on my PhD. She never wrote a word in the notebook because she forgot she bought it. She KNEW until very close to her death that she had not finished the PhD. And when I say very close, I mean weeks. So yes, when it comes to her PhD, she ended up emptyhanded. Because she did not get what she was aiming for. That is not saying she ended up empty handed in life or education in general. I never suggested as such. I don't need to mul that thought over.

Anonymous said...

It sounds like you got what you wanted out of this questioning - I'm glad for you. Brain tumors suck. It's hard to accept the randomness of them - when they strike, how they're all different, and how the treatment seems to be just a stab in the dark and keep your fingers crossed.
JL in GR

IronBear138 said...

I went through lots of guilt (and booze) after losing Laurie thinking I could have done more. Sure, the Docs said her cancer was fatal in Nov 2004 but I thought they were full of shit. (((hugs)))

~Barney

Everything Strength
IronBearFitness

Dutchcloggie said...

I actually did not suffer from a terrible amount of guilt. Just some. But even some guilt is painful.
When I saw the scans, I immideately understood her death was unavoidable. The thing was huge and everywhere.

Guilt is terrible and I was very glad I no longer feel any. In fact, I really feel better since I saw the doctor. Eventhough I was not aware of the guilt all day every day, I now notice I feel like a weight has been lifted off my shoulder. I hope you no longer feel guilty. There is nothing you could have done differently. Guilt is based on hindsight. You judge the past with knowledge of the present.

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