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.

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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.

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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.

More treatment

Radiation was delayed because of a broken machine but started yesterday – completely painless, 15 minutes in total.  For another +/- 10 days. It’s my second round of lung radiation (besides the brain radiation I’ve also had). But the left lung is the primary site of the cancer and it’s been spreading from there (mestastising).

9 months later….

My lung scan shows activity again in my left lung, it seems the tumour has started up again or there is some adjacent activity.  But my right lung and chest area are clean.

I’ve been given a choice – another dose of radiation, much less than last time because I’ve almost reached the maximum allowable, or otherwise chemo.  There is a small chance of the chemo crossing over and positively affecting the brain tumours, therefore I chose to rather have more lung radiation, and to save the chemo as a last resort.

After this stint of radiation, that’s it for me, I apparently may not have more radiation – ever.  And the radiation may buy me another say 3 months or so of “good health”.

According to the doctor, he has not seen any difference between people who eat a normal healthy diet, and those who eat specific diets like my ketogenic diet, cutting out sugar and carbs. He said there is such a thing as “enjoyment of life”.  “If you eat sweet potatoes as part of a balanced diet, then please do so.”

I asked if a cancer like mine can go into remission, he said no, he’s never seen it.  Mine is terminal, unless there is a miracle. Chemo and radiation are only there to extend your life a little and to buy you a better quality life for a little longer.

My next goal is to celebrate my mum’s 81st birthday with the family – it will be her second birthday after my diagnosis, and thereafter let’s look forward to Christmas!

Stereotactic radiation

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The article was in today’s The Burger.  I was one of the 720 patients and consulted with Dr Frohling who successfully treated the initial brain tumour with this nifty radiation machine.

More recently with the new tumours that appeared the doctors decided that stereotactic radiation won’t be as effective as full head radiation.

For those who cannot understand the Afrikaans article, here is a rundown on what stereotactic radiation is:

Stereotactic Radiosurgery – Radiation treatment of a tumour that is applied in a single session with a high dose of radiation.

The cutting edge technology comes in the form of the Novalis Tx ™ Stereotactic RadioSurgery unit launched at Life Vincent Pallotti Hospital two years ago and provides advanced radiation therapy to cancer patients with difficult to reach tumours. The Novalis Tx™ shapes the radiation beam precisely to patient’s tumours, ensuring that the best possible treatment dose is delivered while healthy tissue is protected. The radiation beam also adapts to the patient’s breathing and other body movements to continuously maintain safe, complete and accurate treatment. The unit rotates around the patient to deliver treatment beams anywhere in the body from virtually any angle. It offers fast treatment session and gives new hope to patients with tumours once considered untreatable.

Radiation

Brain radiation treatment

I had my first planning scan at Vincent Palotti on Monday 29 June 2015 for brain tumour radiation. The Medical Aid approved steriotactic radiation for the one tumour I had on the brain, as that allows the radiation to be applied very precisely at the tumour. Firstly, a mask gets made for your face, to keep your head still and in the right position when you come for radiation. That is what is happening in the above photo. I think I returned once only to Vincent Palotti on the day that I had the radiation. I don’t think I had another session.

You get there, lie on a table (which is part of the radiology machine), on a rubber mattress, it’s dark and peaceful, your mask fits over your face and clicks in place as it’s attached to the table, you’re covered with a blanket and not long after you hear the machine go “beeep”.  You’re out of there within 10 minutes. No pain.

On 8 July 2015 I started lung radiation over a 3 week period, Mondays to Fridays, at Panorama. I was told of the side effects and suffered digestive problems and had a complete change in taste. Coffee and chocolates suddenly tasted awful. Doughnuts, my old favourites, suddenly became tasteless cardboard. It didn’t happen right away but was definitely present when I got admitted to hospital on Friday 24 July. It was hard swallowing my eggs at breakfast time in hospital.  I think it took about 3 months for my taste to return to normal.

Thereafter there is nothing much to do but wait. The radiation has a window period within which it operates and continues to cure.  So by December 2015 I finally had my follow up MRI scans to see my progress. By then the lung tumour had reduced from about 11cm to 4cm and the tumour on the brain was virtually gone. BUT there were new tumours on the brain, about four of them. On Monday 6 January I started whole-head radiation over 12 sessions, Mondays to Fridays.  It is the whole head radiation that runs the risk of taking the last of my hair! Oh how priorities have changed!

Side effects

Brain radiation makes the brain swell more and I had some episodes of unsteadiness and general giddiness and not being able to think clearly or do things for myself. I suddenly struggled and couldn’t type! That was the worst!  I must rank as one of the fastest and most accurate typists and suddenly I’m without both skills, oh that was unbearable! If that had to be permanent oh how empty my life would be!  I finally went to the Emergency Room on Monday 11 January 2016. Before going in, Bianca said rather pack your bag. (Because last time I had a long hospital stay which we didn’t anticipate and I arrived with nothing!) So I sat on the bed and tried to think how and what to pack but by then I just couldn’t.  My mum had to help pack. They gave me a cortisone injection and prescription so I’m back on cortisone for about a month / month and a half, including the weaning off period.

Chemotherapy

I have so far managed to avoid chemotherapy. It is not something I am keen on as I find it more invasive than radiation. I’m sure it’s a chemical that messes up the system terribly in its fight to kill cancer. I’ve heard of others who have been terribly affected by this drug. I’ll remain cautious….

The decision

When we initially had the cancer result, there were mixed feelings in the family. I had perceptions out of ignorance; Bianca, the scientist, nudged me towards opting for scientifically proven technology like chemotherapy and radiation. On the other hand, Michaela, my healer daughter who has shunned and banished every chemical from her body or abode, strongly advised against them.  “Go the natural way mum. By eating right you can starve and kill your cancer.”  Not all of us are that resolute unfortunately!

I was given time frames by doctors – one month without treatment. I felt I had no choice. I could not place my life in the balance with unproven theories. I did a lot of cancer research for the first time.