It is with great sadness that I let you know that my mom has passed away today. A while ago, she had asked me to write on her blog and to inform everyone when the time comes. Thank you for your love and support and for all your kind comments. I know that it meant a lot to my mom.
Lots of love,
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.
You probably tired of me with my dancing on and off with cortisone but on Sunday 11 December it happened that the family noticed me sleeping all day (“when is she taking her tablets then?”) Eventually my sis called my daughter Bianca to say “you better come look, something’s not right.”
As she walked in, Bianca heard me crying for help as I was lying in pain on the floor with my leg in a weird position under my bum. Two adults couldn’t lift me. Then they called a Sister from the sick bay and three people lift my up. There is a trick how to lift a dead weight believe me! (I only learn all the stories afterwards – I knew nothing!)
Aw… awfulness, they had to wash me from head to toe in the bath and borrow a wheelchair from the sick bay to transfer me to the car and then to Emergency (which was very full – lesson “don’t get ill on a Sunday!”)
We waited for about 2 hours to see a doctor and still “I knew nothing”, a bit like Manuel!
The doctor asked me to do things like frown, which I eventually do, but I didn’t want to stop frowning. Then, after a long struggle, she asked me to stick out my tongue after a
long struggle, my tongue came out and remained stuck! Bianca, my sister and the doctor just laughed and laughed!
To top it all I suddenly decided to get off and ripped off my wig and flew it flying off the floor which frightened two nurses to death because – I don’t know what they thought it was – perhaps a dead cat? A dead rat??
I have recovered somewhat and am expected to be discharged today. How awful again all the bruises from the various drips I received; antibiotics, cortisone, anti-nausea, anti-seizure, blood thinning etc.
And here is Bianca after all the laughter in the Emergency laughter.
By the way I’m now 18 months after diagnoses for the first time!
The cortisone was originally for me to improve the brain function and that’s why I am still taking it.
The new product from overseas is to treat my chest which is now being a problem with my poor breathing.
So I have to stop the cortisone for the brain and start the one for the Opdivo. It’s a big of a tug of war and I hope the Opdivo will work otherwise I have to go back on cortisone. I guess the brain has sufficient radiation and I don’t think it is no longer a brain option.
I had a hectic day starting with a port flush at 09h00 and then a blood test and then to N1 City to get the sim card fixed for my new phone (my new phone is still not operator so I am phone-less at the moment).
I then had a CT scan and thereafter I saw the Oncologist. The long and the short of it is that the left lung is filled with cancer (almost half a lung) plus the right lung plus the liver “is not looking nice.”
So now they’re going to put me on a new experimental product import from overseas, called Opdivo. Apparently it produces great results. I must pay a small fee to the Medical Control Council for an import fee, the rest will be paid by my medical. I will get injected every two weeks for 2 years.
I am being weaned off the cortisone over 4 weeks because I have to stop that before I start the Opdivo. So as far as I’m concerned there is a light at the end of the tunnel!
But the doctor did say that walking will not help the lung so it will be a while before I put on my walking shoes again. I hope all my other complaints will gradually improve, like climbing stairs and walking from a car to a shop, just a little walking!
I developed a bad head/chest cold about a week ago which is making breathing very difficult. It sounds like a wildbeest in my chest, now joke. The doctor feels it will get better as the cortisone decreases and I’m able to walk again. Since about October I gave up walking because it’s just too painful and difficult to move my legs.
Muscle weakness is one of the side effects of long term cortisone. I never knew how hard it could be to get off a toilet seat – especially in a public place – where one doesn’t have the bath on the one side and the shower on the other side to hold onto! Getting out of a car is another mission. Never mind if your car is parked on an uphill, I can’t get out at all….
The cortisone treatment will continue until Christmas and so far I have not lost weight, in fact I’ve gained another kilo, it must be about 11 kg by now. (I get weighed once a month and have reduced my food intake and cut out many unhealthy items but so far I’m not having the benefit.)
I pretty much look like ol’ chubby cheeks here below…
Congratulations I gained 10 kg in this past month.
Unbelievable. 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.