[rhoslynn]

Greetings from South Africa

by rhoslynn on Wed Jun 25, 2014 9:55 am

Hi All!

About time I introduced myself! I have been lurking for a while to get the hang of things and read lots!

Starting about two years ago I had some horrid back pain. I had to take a peek under daughters car and then in the car and the only way to do it was with a ten minute rest on our bed. Some weeks before that I had helped at our church fete on the burger and boorie (boorie is borewors sausage!), just collecting the money. I could keep going for about an hour then need to sit down for a bit with the back pain. My partner Aldyth had a rotten cold at the same time. We did a quick trip down to Durban and by the time we got back the cold seems to have got hold of me.

It did not quite act like a normal cold so I decided that it might have been the flu. It got worse and I got weaker and weaker. I saw our normal GP and he could find little really wrong. He gave me a five day multi spectrum antibiotic to see if that helped and ordered a bunch of blood tests for after the five days. I had the blood tests done and was surprised the next morning when our GP called and said "Go straight to hospital right now! Your kidneys are failing!"

Bit scary that.

Anyway off we went to our local little hospital and got admitted. I was assigned to the local Geriatric resident doctor. I will say that he has very much on the ball with diagnosis! He listen to all my complaints about back pain, had more blood tests done followed by the following morning with a full body xray survey. With that he suspected multiple myeloma. He needed to make sure though so he ordered up a bone marrow biopsy. Well that was a real breeze. Really gentle and caring young doctor she was. Once he had the results it was pretty much confirmed as multiple myeloma.

Off went the family to gather information so that we had a starting point. The doc was not to helpful either! Pity none of us found the Beacon! This is where the doc made a big boo-boo! He seemed to decide that he could do this oncology stuff. Silly man! I knew no better either. So he decided to contact my Medical Aid about treatments and came up with melphalan. Seems like no thought of the future was made! So when I was discharged with good kidney function again I was given the rest of the box and a script to order more from our normal pharmacy. One or two a day none stop and see the doc after six weeks with an FBC [Full Blood Count = Complete Blood Count] result.

He seemed happy and said come back in six weeks. I mentioned to him that the insert said something like four days on and many off but he sort of shrugged it off so off I went for another few weeks. To say that I was going downhill might just be an understatement! I got to the point of asking my nursing sister friend to get me down to the hospital to get the blood test done and then I would get to see the doc in the morning! Well when she saw me she got me to the hospital and admitted in no time! She got one unit of whole blood transfusion started even before I was admitted! The FBC was a horror to read!

So there started the recovery of Angela from what looked like pink blood to a normally functioning blood system and a move to a oncologist practice that could do the right job!

I had a fun ambulance ride to the Brenthurst Clinic in Johannesburg only 15Kms from our local hospital. Very quickly had more blood tests and then transfusion after transfusion plus a fair number of grany [GCSF, Neupogen] injections to get the bone marrow working and making white cells. Eventually a few weeks later I was sort of normal and was allowed to go home but with a plan to go forward! A few weeks later I was back at the Brenthurst . First FBC then doc for admission auth then into the medical ward for my first chemo!

They were a little bit old school it seems because they used an old regimen - orange juice! Well that's what it looked like. Just before that I had had a port fitted. My current oncologist was a bit disparaging about the treatment but it did reduce my M spike to 5% of what it had been. I had some hair loss and had my daughter trim om long hair back. I went through 5 months of chemo. One week in hospital with my friend Baxter - the infusion pump - then home for 3 weeks to recover. I should have had a 6th one but my immune system counts did not agree.

The oncologists said my next step was SCT but they did not do it and pointed us at an oncologist who did! Medical Aid would only cover part of the hospital bill, They also suggest a really good team in Pretoria. We tried the Pretoria option and were very happy! It was only on the last step of getting into the hospital that we hit the same snag again. The Medical Aid needs a co-payment to be admitted! So that was that!

Well not quite really! A bit of time on the internet turned up the Donald Gordon hospital with a great oncology unit just a short walk away from the Brenthurst and the Medical Aid were happy with it!. So we made an appointment with my customer friend Marlene's oncologist and the rest is sort of history!

We saw Dr Devon Moodley and he planed the way forward. First study all the test results then get going with the SCT. So that meant grany injections in my tum twice a day for a week then off the South African Blood Service [SABS] for the extraction of the white cells and the stem cells.

That's where some wheels fell off! There is a sister in the docs rooms that plans and books all this but she was in hospital for back surgery! Result? You guessed mess! It all worked out well anyway! We could pop next door to SABS and get the blood tests they needed then back and a machine was going to be free shortly. I had a run back to collect the test results plus a trip and fall but at least I got all pipped up. The only bit that had gone like a wiz was having the two pipes inserted into my femoral vein a few days before! The happy extraction machine was not doing a good job and the poor sister doing the hard work was most unhappy with it! Result was not a good collection so our doc called a halt until his sister was back at work!.

We kicked our heels for a few weeks until Mary was back at work. This time 3 shots of grany a day for a week and we were ready to go! With Mary orchestrating everything it was just a doddle! SABS had a better machine. Mary saw me started. Back the next day for the next extraction and it was just enough!

Then the next step! Get the two pipes out before they caused problems! A bit of staph had already started on one of them! A few days later I checked into the Donald Gordon for the big bang. Nice pressurized room to keep the gogga's out. Only problem was I started with some sort of tummy bug just after the power dose of melphalan. The usual stories! Hair all gone, stem cells back, and slow recovery and 3 weeks later back home. Only to return that night with a non stop nose bleed. My nose is a bleeder but this was over the top! Low platelets does not help either. So some platelets were added to my blood and I could go home again!

Regular blood tests and seeing Devon until he said ok now we start maintenance. Thalido­mide 200mg and Betanoid [betamethasone] 10mg on a 5/9 cycle. It should have been 20mg but I could not understand the instructions! I did 1mg per day! My residual M counts came down slowly to 12 then 5 now 0. The Betanoid is now at 2mg per day on the 5/9 cycle and Thalidomide remains the same at 200 mg per day. Its the Betanoid being cortisone the give me the horrid side effects! Vision, tingling toes and fingers. Now tinnitus has started.

In two months time we move to the glorious Cape to live out our years in Cape Town. Our house is sold and the new one bought. So it is a way forward. Devon says he will pass me on to one of his friends in Cape Town once we move.

I have had the good, the bad, and the really ugly days as I'm sure we all have, but like all of us I remember all the good and need a prod to even try and remember the bad! The ugly are gone for keeps! My faith in my Abba God has been a great and tremendous help. That goes for both of us!

Ang

[dalelong]

Re: Greetings from South Africa

by dalelong on Sat Jun 28, 2014 12:41 pm

Thanks for sharing your experience to this point. I hope and pray you will have many months and years of MUCH better health.

Your positive attitude and good humour is much appreciated.

Dale

[rhoslynn]

Re: Greetings from South Africa

by rhoslynn on Tue Jul 01, 2014 10:23 am

Hello All!

I think my "avatar" sort of says it all! I don't like hiding behind strange images! That is the real me! Mad as a hatter! My daughter Heather likes making weird contraptions as a break from her normal work, and she was on summer hols so the contraption was popped on my head and the photo taken! It was me to a T!

Down days there are and always will be, but the good days are just way way better! Bad days go down the plughole with the dirty bathwater, but the good days just stick and will never be washed off!

So, Dale, keep going with head held high! We are all with you! Nothing really beats rooting for others when you yourself are feeling crappy!

Ang! The mad plodder!