Thread: One Never Knows What’s Around The Corner

We are shocked to find him pale and drawn, he hadn’t eaten or drank for two days or showered for sometime. The independent, fastidiously clean and tidy person before us looked a wreck. We get him something to eat and drink, get him to have a shower so we can take him to the doctors. He hops in the shower and after a lot of badgering he’s out of the shower after 2 hours!


By this time it’s too late to go to his normal clinic and we track one down elsewhere that is still open. He is sent off for blood tests and prescribed Melatonin to help his sleep cycles. Blood tests are normal and a week at home but things aren’t improving and he has no motivation, is slow in some decision making and personal hygiene is poor.

Eventually we get into his normal clinic and see a doctor who actually listens and suggests depression and rings a Psychologist, makes an appointment for us and prescribes some medication and at SWMBO’s suggestion, a CT scan.


Another week and we’re in with the Psychiatrist, after a while he shakes his head and suggests that it is not depression and more likely to be an organic problem and writes to the GP for a battery of tests. CT scan shows nothing abnormal. More blood tests, an EEG and a MRI.
The MRI is the last test and no Medicare rebate because the CT scan is clear.

Now, instead of “pick up the results tomorrow” we get approached with “go to your GP today! the results will be there in an hour”. That feeling in the pit of the stomach returns.


Deja Vu. It’s 40years and one month to the day that we heard those same words after SWMBO thumped a doctors desk insisting that there was something wrong with our 10 year old daughter and not her imagination which resulted in a CT scan revealing a tumor at back of the brain, fortunately removable with no further treatment and very little side affects.

Not so lucky this time, the GP tells us it’s a glioma mass on the frontal lobes, makes a call for us to go to the local hospital who send us to a large city hospital as the local hospital has no neurosurgeons.


We turn up to emergency and it’s very busy, mostly with people who think they have corona virus symptoms and no doubt some probably do, and we wait. Eventually we get seen and triaged. Four hours later a neurosurgeon turns up and after some basic tests and questions he gets admitted. It’s now one month since we were notified and about six weeks since changes were first noticed.

The next day the head of neurology shows up and explains they can’t tell much until they do a biopsy opening to remove some tissue to determine the grade and type. In discussions she also thinks it’s a good idea to arrange Enduring Power of Attorney, Enduring Guardianship and a will. We think she knows more but is keeping her cards close to her chest. She also suggests that he be transferred to the private hospital adjacent as she only has one session a week in the public hospital operating theater.


So over to the private hospital at least now he has his own room and it’s a bit quieter. The biopsy that was scheduled for Wednesday is put off until Friday with two PET scans and an MRI in between to determine where the most active area is for the biopsy. During all this a social worker arranges for a solicitor who sorts all the legal stuff for us.

Friday afternoon and the biopsy is completed and the doctor says they got a good sample which will go off to pathology. Expecting the results in 3-4 working days which will determine both radiology and chemotherapy treatments. The dressing is smaller than I expected about 2x10cm with 5 staples. There’s an overnight stay in intensive care, another MRI and back to the neuro ward.


We are a bit upset by advice that the hospital, because of the corona virus is only allowing one (same) visitor for the duration of a patient’s stay. Due to distance and SWMBO’s lack of experience in city driving I get nominated. I leave on Saturday to visit with SWMBO in tears on the verandah.

Apple8, life has a way of sweeping your feet out from under you when you least expect it. All I can say is try and maintain a positive attitude and try not to stress about the things you have no control over and cannot influence. I am my wife’s career, a long time Parkinson’s sufferer and we have recently been dealt a blow with a cervical cancer diagnosis for our eldest daughter who lives with us and has a six month old girl.
My thoughts are with you and your family, wishing you nothing but the best for your son, modern medicine is a wonderful thing and he will receive the best of care.

Well that certainly is pretty dramatic. Full sympathies with this - I hope it resolves itself for the best.

I know its hard but a positive attitude goes a long way to coping with the circumstances. Praying that all the procedures are successful.

Thanks for the support.

Not much went on over the weekend for him. Today the doctor came around to see him but no results yet on the biopsy and will supply a medical certificate for six weeks for his employer, fortunately he has several weeks of sick pay but with time already lost this will probably use it all.

The five staples and dressing was removed today revealing about 20 smaller staples and a narrow band of shaved hair. He will be able to wash his hair tomorrow. The doctor advised the oncologist will visit us during the week.

When I arrived at the front doors of the hospital today a sign about the virus and health was literally put in front of my face about the virus and asked why I was here and had to sanitize my hands as I entered. I’ve been doing that anyway and washing so much at the hospital my hands have never been so clean. There are bottles in every room and every door way. Prior to today there was no restriction on entry and anyone could come and go with being challenged.

Sorry to hear what you are going through.
Be prepared for tougher visiting restrictions. Where I work they have cut visiting hours and only one visitor a day. (With some exceptions.) Also no transfers between wards or hospitals except ICU.
There is even someone at main reception checking on where visitors are going.

Handyjack was right about further restrictions. Got stopped at the hospital door again today and was told all visits are now limited to 15 minutes. Fortunately wasn’t asked where I was going and it takes about 15 minutes to get to his ward and back. I’ll try to be invisible. Doctor will try for an exemption.

Just in time to catch the neurosurgeon. Some of the biopsy results are back, a glioma with some long words I can’t spell or pronounce and it’s a looks more like a grade 3 than a grade 4. Grades are 1-4 with 4 being the worst. More results are needed to determine the best treatment and the oncologist will contact us through the week.

Edit. Update. Unit manager just advised that we have an exemption so we can both visit at the same time for updates from doctors together. Thanks Doctor.

Words only go so far.
BUT, I wish you all the absolute very best in this very trying time.

Keith

more importantly ...

given the current coronaviris pandemic will your son's treatment be classified as "essential" or "should wait till 2 to 3 months till we're not as busy" ?

and what would be the implications of putting off treatment?