Whoop whoop on 10

Congratulations I gained 10 kg in this past month.
number-10-m7xq6p-clipartUnbelievable. I don’t think anyone can imagine what it feels like to suddenly lag so much extra weight along. I am so out of breath and have given up exercising for now. I saw the oncologist today and he’s happy with my progress. All my symptoms are cortisone related and the weight will melt away over the next months, as the cortisone gets reduced.

I will be re-scanned December/January to assess the effect of radiation. Even though my radiation is over and done with, it remains at work on the brain for a few month after.

So unless anything untoward happens, I will repost an update after my next scan. But for now I’m done with doctors and treatments for a while.

What gets me through is the memory of my sister chasing me through Boschenmeer on a very brisk walk for 30 minutes and I handled it well and looked just like any other normal human being!  That was on my pre-cortisone days. I’ll get there again.

Moving fast

I went to see the oncologist today and was surprised to hear “your radiation starts now” wholy-moly-smileyhoopee – miscommunication.  I was hauled off to the radiation room.  I will receive 5 radiation sessions, one a day, for a week until Monday 24th. Radiation is no big deal, it’s not painful at all, best to just relax and get in an extra nap while you’re there. (I have no idea what they do with people suffering from claustrophobia.) They did some X-rays first to make sure the scan is 100% in the correct position and the whole process took about 30 minutes all in all.  I will be scanned again after 2-3 months to see what the effect has been from the radiation.

I’m so glad that I can start weaning off the cortisone from Monday 24th but it will be a
long process over 5 weeks at which point I need to contact the doctor to michelin_bikinireport on my progress.  If I’m okay there will be a further reduction period.  Making progress. I’m so bloated from water retention, that’s the worst side effect – I have a double chin, my feet and fingers hurt… long term cortisone is not easy.

At this point the tumour is still there, it has not reduced. What happened originally was that the tumour was ‘leaching’, known as a ‘brain oedema’, and the cortisone has helped to dry it up which is why I’ve been feeling better. When I heard that the tumour is “as big as an eye” – I said I would have preferred a pea!  I never asked what part of the eye….

hairlossI may have patchy hair on the left hand side where I was radiated. Disappointing as my hair was coming along nicely for summer but a small thing, hardly worth complaining in the bigger scheme of things.

Fun and games for October ’16

mixed-emotionsI went on a high cortisone dose at my hospital visit on 7 September 2016, whereafter it was gradually reduced, but on 30 September my brain shutting down again, whereafter the dosage was increased.  I am currently (6 October) still on the increased dosage and functioning well.  I am scheduled for radiation and not sure at what stage I’ll be coming off the cortisone.  The bloatedness is already evident in my face and stomach!  Last time it took about 2 months for my body return to normal. My diet can’t cope well with the cortisone cravings….it makes me obsessive compulsive, it’s terrible.  I’ll tackle my summer body when the cortisone is at an end.

img_0289b

On Monday 10 October I need to go for a port flush (that horrible plug in my chest into which they stick a needle to flush it out and to clean it open).  Future chemo will pump into my body through the port that’s why it should be maintained.

In the afternoon I’ll be at N1 City for 2.5 hours where I’ll be getting a mask for the head (to keep the head still & in place so that the radiation is always done in the correct position – the head gets strapped in), a MRT scan and a CT scan.

On 18 October (a week later) I need to meet the oncologist, who will inform me of his decision, based on the above scans. I may need 5 treatments of radiation.

In between (on other days) I need to find time to have my hemoglobin checked with a blood test and another blood test to check my blood level (whether the blood is too thick or too thin and gets chemically adjusted).

I’ll add more photos and results when I know more.  Thank you for your thoughts and good wishes.

Brain Soup

cannibals-soup_41453-l

On Wednesday 7 Sept 2016 about 4.30am I woke up totally confused, spoke in bubbles and tried to indicate to mum & sister in house as to my situation and I eventually opened the front door pretty naked to explain my situation. They eventually caught on that this woman is slightly mad!

My sister dressed me (back in pajamas!) and mum and sister took me straight to emergency at Panorama.

They took me to be scanned twice. My daughter Bianca & Nige arrived. I was so glad to see her.  I cannot remember much of the evening. I was informed afterwards. The scan showed a tumour in my left parietal lobe above the ear.

Dr Google describes different symptoms to mine. I up to today (9 Sep.) couldn’t remember the name of the street I live in, or the complex, or to switch on the TV. Battle with writing/typing, comprehending. I still see visions that do not exist, hear voices and have blurred vision. One gets used to everything. In the past, before I got diagnosed, I heard the most unusual music in my head which I quite enjoyed, but unfortunately it didn’t ring any bells – not enough for me to investigate why all of a sudden I’m hearing twiddles.

In hospital they put me on a high dose of cortisone on a drip and I get better every day. I’m still on cortisone for +- 3 weeks (at home) and then a retest. If it has shrunk, they will radiate the spot.

walk

The worst was being in hospital without memory and no phone or laptop, I felt so lost! Eventually on the following day I got permission from the doctor that I could slip out for an hour to go home to pack. One of the nurses accompanied me. I live 10 mins from Panorama and I was much better by then. Every morning in hospital I went walking for 10 – 20 minutes (wearing out their passage!) with nurses running after me to try to stop me but only the last day they realised I can walk.

The previous weekend I went walking for about 30 minutes fast in Boschenmeer – I thought I was doing a roundabout but then I was told “no we must retrace our steps!” I handled it well – no huffing and puffing. I always keep my mouth closed when I walk.

On 15 Sept I’m having further scans – lungs and spine. Not looking forward to drinking two large bottles Barium.  Thereafter seeing Oncologist.  Doing INR on the same day – blood test to check level.  Blood must be at a certain level to prevent blood clots. I’m not phased by these tests anymore, I just take them in my stride and relax. Bit of mind control.

mantras

 

My Mantras, every day, twice a day:
Every day in every way I’m getting better and better.
I’m in perfect healthy.
I’m the miracle, I survived cancer.

The book Mind Power by John Kehoe is really highly recommended.

I will update the blog after my next scan.

 

 

 

Cortisone (again)

Ahhhhh I’ve been on cortisone now again for 3 weeks and am on a weaning programme and have another +/- 2 weeks left to go.  This stuff really affects me badly and I’ve read up a bit more about the side effects.

I am on cortisone again because my brain was going causing coordination problems from the whole head radiation for the new brain tumours.  The doctor explained that radiation often causes the brain to swell more initially, before it starts the healing process.  So the cortisone does help to reduce the swelling and allows my brain to function optimally again, but it comes at a price.

The doctor didn’t think the dose was high enough or for a long enough period to effect me, but I disagree. I had to go out and buy “fat clothes” again today!!  My face is just plain swollen and so is my stomach. The cortisone also causes a funny skin sensation, if I touch my face it doesn’t feel like my own, it feels like I’m touching someone else’s skin, almost like the skin is numb.

I’m copying and pasting (only what I can relate to) from the source article I found on the net and highlighting the effects I’m experiencing:

  • Rapid withdrawal of steroids, particularly if you have taken these medications for more than two weeks, may cause a syndrome that could include fatigue, joint pain, muscle stiffness, muscle tenderness, or fever. That’s why steroids should never be withdrawn suddenly, but rather must be tapered slowly.  (Every muscle in my back is sore – I always end up with backache when I’m on cortisone. I am weaning so it’s not a sudden withdrawal, but nonetheless, I always end up with backache.)
  • Steroids affect your metabolism and how your body deposits fat. This can increase your appetite, leading to weight gain, and in particular lead to extra deposits of fat in your abdomen.  (Haha no joke! My diet goes totally out the door. Not intentional. It feels like the pills switch off something in the brain that controls “hunger” or that it works on that button that tells the body to “eat”.)
    Self-care tips:
    Watch your calories and exercise regularly to try to prevent excessive weight gain. But don’t let weight gain damage your self-esteem. Know that the weight will come off – and your stomach return to its normal size – relatively easily in the six months to a year after you discontinue steroids.   (Last time it took about 3-6 months.)
  • Steroids may impair your ability to fall asleep, especially when they are taken in the evening.  (Yebo.  I’m now taking morning and noon, but it still doesn’t help much with the insomnia.  Sleep has marginally increased to 5-6 hours.)
  • Because cortisone is involved in regulating the body’s balance of water, sodium, and other electrolytes, using these drugs can promote fluid retention and sometimes cause or worsen high blood pressure. (Yes indeed I notice it in my fingers and stomach. Dr Spies is still treating me for extracellular water retention.)

Cortisone (steroids)

I was given a high dose of cortisone when I got diagnosed because there was brain swelling due to the tumour. The total period was about 3 months, including the weaning off period.  I couldn’t understand why I was such a wreck and feeling awful when I left hospital. I always felt worse off coming out of hospital than going in. My children were concerned that I seemed to go in healthy and return totally ill?  I now know why…. here are some of the side effects I’ve experienced.

Hyperactivity

I cannot sleep and go from a normal 8-9 hour night to about 1-3 hours.  My mind is overactive and I just want to keep going. I feel like cocaine Sally…  I have many late nights and loads of coffee (that lead to the creation of this blog!). I cannot get to sleep in the day.  I just keep going until eventually the wheels come off. I’m concerned that I can’t do the best for my health under the circumstances. Surely brain tumours also need a rest!

Weight gain

Jeez no joke but that stuff puts on an appetite!  I felt like pacman. One can eat a decent meal, get up from the table and be hungry again. And because of the late nights, what is there to do but to munch?

Body shape changes

Have you ever Googled “cortisoid moon face”?  It changes the shape of one’s body which is very hard for a woman who’s always taken care of herself!  I suddenly ended up with a moonface, I felt like a fat little piggy with a paunch (true as bob) and looked like a damn hamster!  Ohhhh I was so embarrassed.  Had to go out and buy new “fat clothes”. The only thing I escaped is “the hunch”.  My back is definitely not as ramrod straight as it used to be and I’m still working on correcting my posture daily but at least I got my face back!

Backache

Body shape changes of course come with other issues like excruciating back pain (because of the torso becoming misaligned) and on discharge from hospital I had many physiotherapy sessions, not all equally successful.  Eventually I just gave up and try to live with it today.  As my posture starts to correct and I get back into building strength with Pilates, I’m sure I’ll be able to conquer my backache as well.

Poor bladder control

Run baby run. What more can I say.

Lame long muscles

Shocking – went to a shopping centre and couldn’t walk up the stairs. Hallo… did someone forgot to mention something to me? What has suddenly happened to my legs??

Miss Piggy appears in the photos below.  They’re the most unflattering photos but the story won’t be complete without them…. I have a pretty good idea what it feels like to be a hamster by now 🙂