Monday, 25th August

And just when we thought summer was coming, after waking up to 20 degrees this morning and berg winds, there has been a snow warning issued for the remainder of this week.  It has already started storming outside.

Jimmy had chemo this morning and WOW, did those Neupogen injections do their job!!  I have never been so nervous about doing something but it was definitely worth it.  His white blood cell count went up from 1.8 to 15.6 - this is 4.6 higher than the normal range.  His Basophils dropped from 9.0 to 0.8 (range is 0.0 to 0.5)  and his Neutrophils went up from 0.80 to 10.06 (range is 2.00 to 7.50).  It could not have happened at a better time.  By Sunday Jimmy was starting to feel really down and said that he couldn't cope with being stuck at home like this much longer.  So on our way home from chemo we popped into Blue Route Mall and did his cell phone upgrade and had some lunch.  Updating and sorting out his phone should keep him busy tonight.

This little baby had me sweating each time I had to inject Jimmy!

On the subject of upgrades....keep this in mind.  When we got home we wanted to do an EFT payment and we could not as Jimmy had done a Sim swap when he upgraded his phone.  As the bank account is registered to his cell phone he receives the TVN numbers etc and as a security precaution you cannot receive these confirmations to your phone for the first 36 hours after a Sim swap, which means you cannot load a new beneficiary or do a once off payment.  A bit frustrating but a good security feature.

We had a lovely surprise on Friday evening....Wayne and Samantha from KZN were in CT and came to visit.  It was awesome to see you again :)  Thanks to Ant and Kathi for popping in on their way home from the golf weekend in Langebaan  and then we ended the weekend off with a lovely family walk around the block on Sunday afternoon so that Jimmy could get some fresh air.

And now I have a favour to ask;  Allot of our friends that I bump into keep telling me that they read the blog and would love to comment but they can't.  Please could someone comment on today's blog and explain step-by-step how to do this.  Also please let them know if it is necessary to have a gmail or google account.  Unfortunately I can't do any explaining because it is my blog and I am logged in and the home page looks completely different to me as it does to you.  Pat, hopefully we have some help on the way for you xx

Friday, 22 August

And a busy week it has been...

Chemo on Monday and Thursday, my Mom and Bradley's birthdays yesterday and my sister and family were also in our thoughts and prayers as she laid her step Dad to rest yesterday.

It is amazing how quickly we have fallen back into the chemo routine.  Jimmy didn't have any significant side effects after Monday's chemo apart from being very cold and tired.  Nodding off in his chair and falling asleep in front of the TV at night.  He also slept in a bit on Tuesday and Wednesday morning.

Our second round of first cycle of chemo was yesterday again and as always, before they start anything, he had bloods taken.  They went ahead with chemo but his white blood cells have bottomed out since Monday.  In 3 days they dropped from 3.7 to 1.8 (range being 4.0 to 11.0). His Neutrophils, which again in layman's terms, are babies of what becomes a white blood cell dropped from 1.86 to 0.80 (range being 2.00 to 7.50).  We are waiting for a call from UCTPAH this morning as we will have to go through and collect some Neupogen injections which I will be giving him at home.  As far as I can remember Neupogen is the same injections that he will have prior to stem cell harvest to boost stem cell growth.  Of course this means that Jimmy is very susceptible to infection now but on the good side this means that the chemo is doing its thing as it attacks good and bad.  His Basophils jumped from 1.2 to 9.0 (range being 0.0 to 0.5).  Basophils are produced in your bone marrow and circulate in the blood.  It is stimulated to release granules of toxic enzymes in an effort to neutralise parasites.  Basophils also contain histamine which causes inflammation and prevents blood from clotting when released. They are found in unusually high numbers at sites of infection. Well now that the Biology lesson is finished, we'll move on...

All our chickens will be here this weekend but it will have to be a very quiet one spent at home.  I see the sun is shining today for the first time in a while but I will be rather peeved if it is a beautiful weekend!

We are jealously thinking of all our Sunshine Corner friends who leave today for a golfing weekend in Langebaan.  We hope you guys have an awesome weekend away, take care and travel safe.  We wish we were there.  Here's to some good golf and we definitely look forward to being there with you all next year.

I just had an awesome Skype call from Megan.  She has just completed 4 weeks of training doing practicals and 4 hour lectures and wrote her exam yesterday and got 90%.  She has also been promoted to a section leader for the emergency drills on the ship involving all the passengers.  Megan has the day off tomorrow (in Venice) because she won a competition.  They had to hand out forms promoting something and the passengers had to fill them out and hand them in and she had the most hand ins.  She seems so happy, she says she misses us but doesn't think she is ever coming home because she loves it so much.  They had a braai for all the staff (they call it a BBQ) on the ship during the week and all the senior staff had to serve them.

Maureen and I have found a very useful site which explains blood counts and I have added it under 'useful links' down the left hand side of the home page.

Monday, 18th August

Friday was 4 months since Jimmy was diagnosed.  Gosh....it already feels like a lifetime ago.

On Tuesday when I last updated the blog we had received the go-ahead from the medical aid to start the new cycles of the new chemotherapy and we were waiting to hear from the chemo clinic as to when the pharmacy would order the drugs and treatment would start.  Jimmy had his first treatment this morning. I hadn't realised how going through to the clinic twice a week had become a part of our lives.  Everyone missed us!  Even the porter came and gave me a hug while I was waiting for reception to open a file for Jimmy and wanted to know how Mr Smith is doing.  The staff at UCTPAH are so amazing.  We hadn't seen Eric for a while as the staff do shifts and swap around where they work and when we were last at the clinic, Eric was doing his time in F4 (this is the isolation ward for transplants).  It was nice to see the old familiar faces and our friends who are also diagnosed with cancer, getting their various treatments.

The new cycles will run the same as the last ones, this being chemo twice a week (but on a Monday and Thursday this time around) for two weeks, then miss a day and start the new cycle on the next chemo day.  Jimmy has to have 4 cycles in all.  Prof has discontinued the Endoxan which he received on the first day of each cycle, and replaced this with Doxorubicin which will also be administered on the first day of each cycle.  Velcade and the balance of the drugs remain the same.  The Doxorubicin is a much bigger bag than the Endoxan so treatment takes about at hour longer now too.  It is bright red and commonly referred to by all the staff as 'the red devil'.  I have done a little research and had a chat to Dr Fine this morning and there are definitely some extra side effects compared to the Edoxan such as pain along the site where the medication is given, nausea or vomiting, low blood counts, mouth sores and hair loss.   But, as we all know now, chemo affects everyone differently so let's hope for the best.

The Red Devil

I've just had a look at the calendar and this means that Jimmy's 50th birthday is slap bang in the middle of these cycles and there is a big possibility that he will be in isolation for Christmas.  On the positive side though....we get to start the new year with all this behind us which, to be honest, doesn't sound too shabby :)

A big thank to Rohan & Patsy and Billy & Colleen for a lovely lunch yesterday, we had a super afternoon with you guys.

My prayers are with my sister Debbie who lost her step Dad very suddenly to a heart attach on Friday....our thoughts are with your family xx

Tuesday, 12th August

Just a quick update to let you know that we spoke to the medical aid this afternoon and the panel authorised the new chemo treatments this morning and say that they have notified Prof.  We will follow up with his PA, Ilhaam, tomorrow and find out when everything gets going again.

Thank you for all your phone calls of concern, I really am feeling much better than I did on Sunday and for those of you who phoned to 'kak me out', I have an appointment with out family doctor tomorrow morning at 10:00 to get me back on the straight and narrow :)

I have posted some photos of our 4 days away and some awesome pics of the lions we saw on a kill.   You will find these under the 'pages' menu down the left hand side of the home page under 'getting away from it all'.

Monday, 11th August

I really wish blogspot had a 'like' button!  I read all your comments and would find it very difficult to keep coming up with replies to each and every one of you , short of just keep typing thank you.  A like button would be awesome because then I know you would know that we have read your meaningful messages but thank you anyway for always keeping us in your thoughts and prayers.

Monday the 11th....a week since I last posted.  And it's been a week of going with the flow.  We phoned the medical aid on Friday and they advised that they had received the motivation for Jimmy's new chemotherapy treatments and we should hear by today or tomorrow.  Jimmy phoned this morning and was told that it has gone to 'the panel' for approval.  I would just love to be a fly on the wall with this panel.  So we are hoping to have some positive news by Wednesday.  Of course this does not in anyway mean that we are any closer to knowing what chemo he will be having, how the cycles are made up or what the possible side effects of the new chemo will be.  The medical aid did mention that Prof applied for 4 cycles but at this stage this could mean anything too.  There are so many people that we have met through the clinic who are all on different cycles ranging from once a week to once a month to 5 days in a row, so who knows.

I had a bit of wobbly on Sunday morning.  I feel quite silly now that I am going to write about myself here...it definitely is much easier reporting on Jimmy......

I didn't feel too well on Saturday evening but I have been a bit tired lately.  I also sneezed quite allot during the day and the only time I ever sneeze is when I am going to get a cold so I put it down to coming down with something and being tired.  I didn't sleep very well at all and had allot of stupid dreams.  On Sunday morning I got up, fed Keira and came back through to the bedroom to tell Jimmy I felt very strange.  I had a very bad headache, could feel emotion welling up in me and I was very shaky and my chest was feeling tight.  I went to go sit on the patio and by this time I had chest pains, I couldn't breath properly or get air into my lungs, my left arm was cramping and both my hands and from my knees to my feet were numb.  We got hold of Dr Bell, my blood pressure was 190/103 so he suggested Constantiaberg Emergency. Well....an ECG, bloods, a pill under my tongue and some other tests later and there is nothing wrong with my heart (apart from the fact that most the time it feels broken).  This is what stress can do to you!  I am feeling much better today, although the muscles around my chest are very stiff.  I feel like I have run a marathon with a very heavy rucksack on my back.

One thing I did learn through this is that Jimmy would make a terrible nurse.....he couldn't even remember how to use our mobile phone.  On a serious note though, thank you Maureen.  I remember Jimmy phoning you and the next thing you were here and I didn't have to make anymore decisions xx

Thinking of you tomorrow Michelle <3

Monday, 4th August

We are home from a fantastic 4 nights away.  I am so grateful for the relaxing time away and an unforgettably special time spent with Jimmy.

As you know we went straight through to UCTPAH for Jimmy's monthly Zobone treatment, bloods and our appointment with Prof to get the results of the bone marrow biopsy.  In the first bone marrow biopsy 60% of the sample taken was cancerous (there is a better medical way of saying this but this is in layman's terms).  In the latest bone marrow biopsy there has been a 50% improvement of the 60%, but for stem cell transplant purposes Prof needed this to be 90% or more, he was very disappointed..  This means that for now, stem cell transplant is off the cards.  Within the next two weeks Jimmy will start another 2 to 3 or 3 to 4 cycles of chemo in the hopes these numbers will all come down.  I asked Prof to explain how this works because he told us that he was stopping chemo because Jimmy had plateaued and I asked him what difference the chemo would make now?  He explained that he is going to change the chemo drugs.   He will continue with the Velcade and then add some others.  If there is still not enough of an improvement after these next cycles, he will go ahead with stem cell transplant but will do two stem cell transplants back to back.  He explained that we must understand that the higher all these numbers are prior to stem cell transplant, the shorter remission and the long term picture will be, so our aim is to work at getting them down.  I also asked him that surely if Jimmy is given a huge dose of chemo before they harvest his stem cells and another huge dose prior to doing the transplant, wouldn't this kill all the cancer that is left?  He explained that these big doses should do that but he cannot rely on the hopes that they do, and feels it is more important to get them as low as possible now and anything that happens around stem cell transplant would be a bonus.

My thoughts:  To be honest, I had a weird feeling we weren't going to get good news today and I was already feeling teary this morning.  That terrible M protein reading of 21 has been like a niggle in my brain!  I feel like we are starting all over again, it even feels like a bad dream again and maybe tomorrow morning none of this happened.  I had to fight back crying and a quivering lip during our appointment.  Jimmy is being very positive....he has to be the most positive person I have ever known, but even he was very quiet in the car on the way home.

Tomorrow we will feel better, gather up lots of courage and continue on this journey of ours together.

Sunday, 3rd August

When I finished typing the blog on Thursday we discussed again, going away for a few days.  We decided that we would both get on the internet and if we could find something that looked appealing and could get accommodation at such a late stage we would book, pack and hit the road and this is exactly what we did.

We left home at about 3:30 and spent Thursday night at the Caledon Hotel and Spa.  On Friday night we stayed at the Garden Route Game Lodge and last night and tonight we are at Gondwana Game Lodge 30km this side of Mosselbay.  Nice short distances to drive and the winter rates are very good. The lodges are also very quiet this time of year with the odd overseas tourist visiting.  We did a game drive at Garden Route Game Reserve where we saw Elephant, Lion, Cheetah, Hippo and various buck.  We stayed in one of the bush chalets with a beautiful view over the valley.  Gondwana Game Reserve is out of this world.  We also booked a bush chalet here but they are busy with some winter renovations so we were very lucky to be upgraded to a luxury Bush Villa.  I estimate it to be about 300 square metres with a lounge, kitchen and dining room area and a full double bedroom and on-suite bathroom on each side.  It has a fire place in the lounge and in each bedroom with a huge wrap around balcony with a built in braai area.  Our package is a dinner, bed and breakfast rate including a game drive once a day. The nice thing about coming to these reserves is that the rangers are so used to having to talk to foreigners that don't understand english very well that they really go overboard when they have South African visitors.  Our game drive last night was 3 hours and we stopped for a lovely sundowner picnic.  We had some amazing sightings, including 2 lionesses eating a kill.  I have some fantastic photos of the lions with their faces full of blood.  We go out again at 3:30 this afternoon and we are hoping to find the elephants and some cheetah.  Jimmy and I have always discussed that we wonder what animals are watching us while the game vehicle stops for snacks and drinks and sure enough, last night we saw something moving in the distance and it was two lions walking by.  They were about 600m from us.  Our villa is right out in the bush with nothing and no one around us, it takes about 15 minutes to drive back to the main lodge area.  The villas are also not fenced in so it is quite possible to have a visitor or two at your front door.

We really are enjoying the quiet, quality time together as this will be our last break away for some time.  We will leave  tomorrow in time to get to UCTPAH at 3pm when Jimmy has to have his monthly Zobone (calcium) injection, some more bloods taken and then we see Prof for the results of the bone marrow biopsy.  I am sure we will also discuss the arrangements for the stem cell transplant and find out exactly when this whole process will start.

I will post some photos once we are home and also post an update of Jimmy's results either tomorrow evening or on  Tuesday morning.