I'm Mel, What bought me here? My 34 year old husband was diagnosed with a grade 2 Astrocytoma brain tumour March this year, one week after I gave birth to my second beautiful daughter.
We have 2 girls, 6 months & 3 years old.
He has always had a "unsteady hand", this has progressively got worse as he got older, so he saw a neurologist who thought it was a basic "essential tremor" but sent him for a MRI just in case.
This MRI found our terrible life changing news- A tumour that is the size of a golf ball & is in a terrible spot- right next to the thalamus & is growing down the brain stem.
So began the whirlwind of doctors visits, & the news that he could no longer work or drive. My husband, who worked away on the mines was now home, & had very limited independence.
After more MRI's including tracking, a biopsy was done & the neurosurgeon decided that operating is almost completely out of the question without causing serious side effects (loss of speech, movement etc)
We then saw an oncologist & he & the neurosurgeon decided with us to choose to see how it went as they think it has been growing since he was young, other than having a brain biopsy done a month after diagnosis.
Unfortunately, 6 months later- in the last month his symptoms have increased, therefore forcing us to take action, & start radiation in 2 weeks time.
I go through good & bad days like everyone, the bad days tend to coincide with his bad days- his days of intense rage & anger- which is super scary for me & especially for our 3 year old.
His tremor in his hand has increased so much that it shakes all night long- sometimes keeping me awake for hours.
I am looking for support, and to support others in similar positions.
I want to stress- I don't want to know what to expect in the next couple of years, as I deal with one day at a time- I do not want to think about the possibility of how sick he may be until I have to.
Thanks, I look forward to chatting further with everyone
I was diagnosed with a completely different problem just before your husband. You can read by bio if you like, I won't repeat it here.
Your story resonates with me - words like "life-changing", "whirlwind", "good days and bad days".
My family is a just little older than yours, but facing very similar feelings and issues I'm sure.
Happy to chat with you and offer any advice I can. I wish you well, and I will be praying for you and yours.
Thanks for you response- I read you bio- congratulations on being in remission & being the first survivor :)
How did you find radiation? How did your daughter cope with you going through the radiation?
Before I answer, just need to re-iterate that I have no knowledge of your husbands problem, being so different to mine. So please interpret my input as "generalist" in nature.
The radiation I had is, by decree of most practitioners, just about the worst you can have in terms of side-effects. I found no problem with the administration of the treatment itself, which some can find difficult because of being held in position.
My side-effects were predominantly a mouth full of ulcers, and throat soreness, the pain from which was extreme at times. However, the oral tissue is a mucous membrane, and behaves (I imagine) very differently to the skull and brain.
Follow the directions of the clinicians, especially the post-treatment care for the skin which MAY be specified by the radiotherapy nursing staff. This will be of great benefit, if relevant to your husband's case.
There is a wealth of literature and resources available form the Cancer Council and others, in relation to kids and cancer treatment of their family. My girl figured out that I had cancer, so avoiding the "C word" became moot. We simply told her that I was going to be unwell during treatment, and that the treatment would get rid of the cancer. Again, a different situation, because I had surgery which really DID get rid of the cancer, and the radio / chemo was to nail the lid shut. There was no point or need to examine the prospect of a recurrence down the track.
My advice to you is to take professional advice from the resources available - GP, cancer council, hospital, etc. DON'T GOOGLE!!!!
If you have not already done so, I strongly advise referral to a psychologist for counselling for yourself, and you can seek advice on the kids from them. Your GP can provide a Medicare referral for at least 6 consults, if not more, which will give you $122 back on each session. Get it, and use it.
I'll back off for now, let you absorb my rantings above, and allow you to formulate further questions if needed.
Remember, as far as cancer generally goes, people DO survive. I'm living proof.
Sorry to hear of your husband's diagnosis. I am with you in taking one day at a time. It has been a good way for me to get through the bits that I need to get through. I try to deal with the "here and now" and be mindful of what the future might bring.
As a carer, please don't forget to take time out for yourself. I hope that you have a good support network surrounding you and someone who can help out if and when you need it.
Hi Mel, Sorry for your situation. Live one day at a time YES. I have found and I know everyone is different, the more research I have done about my sons tumor the more I have been able to accept, when talking doctor specialist jargon its good to show them you know what they are talking about and can question them. I hope you are able to find support from family and friends
Keep on keeping on
Regards to you and your little girls
Hi Mel, your story, although completely different from mine, resonated with me as well. I can only repeat what others have said; make time for your own well-being as well, and definitley don't Google. We're all cheering for you and your family. love Emiy
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