Challenge

My life has changed somewhat.  I am back in hospital since before Xmas because of swollen feet, knees and being out of breath. I have been assigned to a new oncology doctor because my regular doctors are on leave. She is very thorough and ordered another CT scan because she wants to get to the bottom of it because she doesn’t want me to be admitted again because I have now been re-admitted within weeks.

So she came to me yesterday to say that the CT scan shows that my lung supply has been blocked off by a blood clot and in fact there are several clots in the lungs. It can’t be worse. No point in bothering with a swollen knee, no matter if another blood clot runs to the lung, because the lung is already so full of blood clots. They can’t do nothing more. I can go today, tomorrow, in a week… they are keeping me in hospital, I won’t be going home. That is the end.

I get such good care in hospital, I’m much better off here than at home. The doctor assured me that I won’t be left to my own devices, they will still provide me with the best care.

I’ve had visits from all the family and they are happy that I’ve managed to defy the odds and have lived an extra 1.5 years from diagnose. All my affairs are in order and I’m ready to my return to my real home, but the doctor shook hands with me and said if I can prove her wrong she’ll be clapping hands. So I changed me attitude to one of positiveness and resumed my physio exercises because I don’t believe in lying down and giving up. I feel upbeat and trying to live my life as normal, albeit within a hospital bed. I breath freely, I’m not in pain. I’m having a jol on YouTube on the hospital’s WiFi and I have enough Soduko books for a lifetime!

Under the circumstance I ask for visits from family only. Once again, thank you for your love and support.

Advertisements

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.

 

 

 

Mixed emotions

I had my last chemo session on Friday 22 July.  I was elated and as I was saying goodbye to one of the sisters, she said, ‘No but I’ll see you soon, your port will need to be flushed.’  I looked at the other sister and they both laughed.  I thought they were having me on.  I didn’t know that – no one mentioned it!  And they all know how I hate it when they connect that needle to the port, they have to anesthetise mine for at least 30 – 60 minutes beforehand and then it’s still sometimes sore.

mixed-emotionsSo now I have to look forward to going back every 8 weeks to have my port flushed.

The only alternative is to have it removed but I’m too scared I may need chemo in the future.  It is just an awful thing to have to live with as it protrudes from inside the skin plus there is a long scar. It’s located on my chest area.

It will be difficult to disguise in summer. I myself can’t even look at it and I don’t even go near it – “ek gril” – in other words I find it creepy and offputting.  Plus the thing moves in the night, or at least that’s what it feels like.  Sometimes I think ‘oops it’s tilted sideways.’

My scans are set for September when we’ll see the effect of the chemo.  Until then I may stay off the airwaves.  Friends who want more updates can send me a friend request on Facebook.  I appreciate your comments and thoughts!

Chemo Day 3

Bad and Breakfast  Since my last chemo session, I had a port implant, which went well. The stay in hospital was not the most pleasant – do things like this only happen at Panorama?  I asked a sister for water at 3.30pm (that was many hours after my op and after I had already consumed two jugs of water) and aconfused-smiley-300x247nother two nurses thereafter and guess what time I received water next to my bed? 6.30pm. Is water rationed??

 

The next day I woke up at 5am STARVING and my breakfast only
arrived past nine and my menu selection clearly stated COLD milk but I received hot milk with my cornflakes – yuk!  I had to send it back plus the fried eggs – nuke them please!  (At a previous visit I ordered muesli and received Granola – it’s like blessing the pork by saying ‘it’s fish it’s fish’….)

I just about gobbled it up when at 9.30 they came to fetch my plates – whoa, okay take everything just leave my coffee!  It was a Saturday morning but do they think we’re all speed eaters?? Oh…. and not to mention the fact that I ended up on the operating table without a tag on my arm stating who I am and which doctor I belong to….

I don’t think I’m unduly fussy considering the prices charged by the Mediclinic Group.  I once stayed overnight at the Caledon Provincial hospital and their breakfast consisted of coffee with 5 sugars and a bowl of oats holy-moly-smileyloaded with sugar, both of which I kindly donated to my neighbour. I didn’t complain because the whole overnight stay probably cost me R30,00!

My port operation went well (thanks for sending the angels Margaret) except the anesthetist had a battle trying to find a vein which left a big black bruise on my arm. Here I am after my op.

IMG-20160513-WA004

Bad Blood   Before chemo one has to go for a blood test to check white and red blood cells and kidney function. My white blood cell count was too low for more chemo so I had to have two injections of Neupogen. Small injections into the stomach, not painful at all. They cause the bone marrow to produce more white blood cells and I was warned that it could cause lower back pain – WOW they weren’t kidding!  I took Tramacet for the pain (I NEVER take painkillers, pain must be extreme before I relent), but I swear the pain went away once Donavon (Michaela’s friend who is a healer) lay his hands on me… the pain was gone – zip, zilch, even though I had another Neupogen injection the day after.  I had no further ill effects after the second injection.

Finally,  Chemo Day 3   Today, 24 May, I had another looooong chemo session – I was there about 8.15am and left around 2.30pm.  The first time my port was in use and it was a great success.  They stick the needle into the port like this.

IMG_0930 howtheport_large

Many people were nodding off at about lunchtime and some were knitting.  I was a busy bee on my laptop and got a lot done.  Bianca would very much like me to join team knitting in order to knit baby clothes for the far-in-the-future baby!  We’ll see next time.

IMG_0910

For some strange reason I craved Coke which I haven’t had for years!  So I allowed myself two cans when I came home – practically had one after the other. Very weird. But I believe if you don’t give in to your cravings you end up eating replacements that just leave you dissatisfied. So I rather just give in to a craving and be done with it.

I have another much shorter session next week, if my blood test result is acceptable.