2014/12/25

Thursday, 25th December

 
Thanks to John and Jen for the lovely visit this week, for the beautiful flowers, wine and cake.  You really did spoil us.  It was lovely to see you both again and I hope you enjoyed the rest of your time in Cape Town and your birthday Jen.
 
And to Guy and Shereen and the boys for a chilled Christmas Eve get together.  We really need to make the time to do this more often.  Thanks for the great company, the cousins had such a fabulous afternoon together.
 
 
To all our family and friends
 
 

During this time of faith and family may the true meaning of Christmas provide you with joy.  Wishing you a Merry Christmas and thank you for all your love and support.
 
Lots of love Jimmy, Vivienne and children.
 
 
We had a lovely Christmas Day spent at home with our children and Jimmy's parents today.  Many beautiful gifts and a delicious Christmas Lunch.  Even the pouring rain and cloudy sky couldn't dampen our spirits.  We enjoyed a lazy afternoon with full tummies and visits from Rohan and Patsy & Matthew and Cameron.  Thank you Ewen for the lovely telephone call from the UK.  I think your weather was better than ours today.
 
 
Bradley and Shannon left this afternoon to spend the remainder of Christmas Day and the rest of the holidays with their Mom and her family and my girls leave in the morning.  It's going to be very quiet in the Smith household from tomorrow afternoon.  Thank you kids for a fabulous day and a glorious two weeks together.  The time really just went by too fast.  In our fond thoughts was Megan today, our first Christmas with her away but we had a lovely Skype yesterday and since she is at see today we hope to catch up tomorrow again when she is in Toulon, France.
 
Jimmy's cold is much better, after closely monitoring his temp for a couple of days it did not go higher than 36.4 and I think he is over the worst now.  His back has been a bit sore and he was very quiet today but I think he is okay.  I worry about him but I also don't want to be a pain and keep checking up on him and asking him if he is okay.   He was quiet like this on his birthday too and although these are special, happy times to celebrate I suppose it is also a time to reflect and I am sure I would also be, if I were to walk a day in Jimmy's shoes.
 
 



I couldn't resist sharing a picture of my ginger
bread house Christmas Cake.



2014/12/21

Sunday, 21st December


Day 20 - Stem Cell Transplant (going to stop counting from today and resume mid Jan when the next part of the transplant starts)

It's the countdown to Christmas and it's awesome.  There is a fabulous vibe in the house.  The kids all have friends over and there are six of them baking Christmas biscuits and icing them.  The smell wafting through the house is to die for and all this to the sound of Christmas carols.

The biscuit bakers

Our dear friends Matthew and Cameron are on holiday in Fish Hoek from Johannesburg and it has been lovely to see them again.  Ray and Bernadette are also in SA on holiday from the UK and it was wonderful having them and Melanie for a visit.  And then we were also treated to a visit from Tim, thanks so much Tim and come back soon.  We were sorry to miss out on a mini reunion at the Toad the other night.  It would have been nice for Jimmy to see some of his classmates and beautiful Kelly who is in SA on holiday but he was pretty exhausted after stem cell harvest on Friday.  The girls and I had a nice afternoon tea with Maureen, Kate and Sheila and our daughters as a very late celebration for Sheila's birthday at the end of November.  Lovely Champagne and too many sweet things to eat.....just perfect.

Jimmy has been feeling mostly fine.  I shaved his hair yesterday as it is now falling out in huge chunks.  On Friday he showered and scrubbed his head to try and get rid of some of the lose hair and ended up throwing away 2 handfuls of hair.  He is almost completely balled now.  He has been very tired and didn't sleep at all for 3 nights and couldn't sleep during the day so I think it got to the stage that he was overtired and then he would get into bed at night and it became a mental thing....the harder you try to fall asleep the further this possibility becomes reality.  And then his back started getting sore which I think was coming from the tossing and turning during the night.  Of course if Jimmy can't sleep then I don't get much shut eye either.   So last night I phoned Kate, our resident nurse, and went down to fetch some sleeping tablets from her and Jimmy slept like a baby last night.  He only woke up at 9am and already his back is feeling much better.

My almost bald hero

After thinking that we were going to have the worst Christmas ever with Jimmy in F4 Isolation we are now all eagerly awaiting Christmas Day and celebrating it together as a family.  There is only one person missing and that is Megan.  My brother Guy and his family are coming to visit on Christmas Eve afternoon.  We are going to have a family Christmas lunch at home and Jimmy's folks will join us.  And then we are hoping that Rohan and Patsy will visit in the afternoon as well as Matthew and Cameron.  My presents are all wrapped and the shopping is all done.



Megan on duty and in the Christmas spirit
on the Norwegian Cruise Liner - Jade

The children go to spend their second half of the holidays with their Mother and Father on Boxing Day so I am going to stock up the caravan and then on the 27th we are going to go up to Bredasdorp to spend 2 nights with my parents.  From there we'll go up to Graaff-Reinet and meet up with Stan and Michelle (watch this space for some hectic rainfall - they are cursed) at Camdeboo National Park and then we are going to play it by ear.  If Jimmy is up to spending some time with them and camping we'll go to Addo Elephant Park and then Natures Valley but the plan is if he wants to come home we'll just turn around and come back.

I'm not sure if I will blog again before Christmas so would like to take this opportunity to wish you all a Merry Christmas.  Thanks for all your lovely emails and messages that we have received over the last few days.   It is truly is a blessing that stem cell harvest went so well.  A special thank you to Sakkie and Noeleen for the beautiful book you sent Jimmy, we received it on Saturday, thank you so much.

I am super excited - we are 6 page views away from 20 000!!

God Bless you all and please travel safe and take care.

2014/12/18

Thursday, 18th December

Day 17 - Stem Cell Transplant

Since today is going to be a very long day I have decided to do updates throughout the day and then post them all this evening.

We set the alarm for 4am and I got up to give Jimmy his Neupogen injection.  He actually asked me if I could give it to him without waking him up.  I told him there was more chance of me giving him an injection without waking up.  One thing is for sure....he has never lost his sense of humour.

09h30
Jimmy has had his bloods taken and just as we were told, his white blood cell counts have more than doubled to over 20 since yesterday.  His vitals have all been taken, as well as weight and height.  An interesting side effect of Multiple Myeloma is loss of height and Jimmy has already reduced from 1.67m to 1.63m.

The harvest procedure today takes place in the Chemotherapy Clinic.  There are 2 beds behind a wall that doesn't go up to the ceiling with curtains, like in a normal ward.  Dr Fine has just finished inserting the PICC line in his groin under local anaesthetic so they should start the whole harvesting process soon.  I had a good laugh this morning when Patsy sent me a message saying she hopes those stem cells are all swimming around screaming pick me, pick me, pick me......so do I.

 
The Chemotherapy Clinic

The 2 procedure cubicles at the rear of the chemo clinic


Jimmy rearing to go

13h40
Gosh, this is a very slow process.  By the time they had Jimmy's PICC line in and he was hooked up to the aphaeresis machine it was 10h24.  So it has been just slightly over 3 hours.  I can see the stem cells in the bag but we have no idea how well or slow he is doing.  About 30 minutes ago Olivia came to get a syringe full of the stem cells to give to Dorothy who measures and works out how many are being collected and at what rate.  The rate of stem cells per ml of blood stays constant, although different for each person, so when we get these results we should be able to get an idea of how long this is going to take.  Jimmy has to lie completely flat on his back and can't move much before the aphaeresis machine and BP machine's alarms start going off.  The PICC line also has much thicker pipes going into his groin this time round so this is a little uncomfortable.  The one pipe is for out and the other for back in again.  It's amazing how this aphaeresis machine separates the stem cells and then everything else goes back into his body.

The aphaeresis machine

Jimmy's PICC line


The screen of the aphaeresis machine

Blood circulating through the aphaeresis machine




14h50
This is getting even more fascinating now.  Jimmy's body has approximately 4.5 litres of blood in it, which is quite average.  At 14h30 Olivia came to tell us that 10 litres of Jimmy's blood has circulated through the aphaeresis machine and Prof wants 14 litres.  We still don't know how many stem cells this produces but according to the nurses he is doing extremely well and we should be finished harvesting at about 16h30.

The stem cells
16h50
Dorothy has just come to tell us that Jimmy has been as absolute super star.  They are going to turn off the aphaeresis machine at 17h00 as they have managed to collect 15 million stem cells which is enough for 3 transplants.  Once the aphaeresis machine is turned off and all the pipes and tubes are removed, Jimmy has to lie still till 17h30 to give the main vein chance to clot nicely.  Olivia will then remove the PICC line and apply some pressure for a while.  We received his blood counts back from this morning and his white blood cell count was as high and 27.2.



17h45
Olivia has now removed the PICC line and Jimmy is still lying flat to make sure a nice blood clot forms.  I will have to wheel him out in a wheel chair and the only walking he is allowed to do is to the toilet until tomorrow.  They have also done another batch of blood tests and his white blood cell count has now gone up to just over 30 (normal is 4 to 11).  This will drop down again in the next few days to what is Jimmy's normal which will be around 2.5 to 3.  He doesn't have to have any more of the many pills he has been taking for the last 10 days in preparation for today nor any more injections and I have to admit I pretty relieved about this.  After something close to 30 or 40 injections it still doesn't come naturally to me.

What would normally happen now is Jimmy would have been admitted to F4 Isolation Ward in the next 3 or 4 days for another heavy dose of chemo to kill everything again prior to stem cell transplant.  The nice thing now is that Jimmy can actually relax till mid to end January when he will be admitted.  We are hoping that Prof will be able to confirm what date he is going in before they all close for 2 weeks because we think he only comes back on the 19th of January but he has assured us that Jimmy will be included in the 1st batch going in for transplant during January.

Homeward bound after 10 hours

Today was a big step and a whole leap closer to Jimmy's recovery and I am very happy that it went so well.  Much better than we had anticipated.  A special little thank you to Jane Pederson (who works at UCTPAH) for popping in to check up on Jimmy xx










2014/12/17

Wednesday, 17th December

Day 16 - Stem Cell Transplant

The last week has flown and what a fantastic few days we have had.  I have been giving Jimmy his Neupogen injections twice a day which means his bloods are coming up nicely, I think this morning's was his 15th one.  I really am a pro now.  He went with me to the mall on Saturday morning, just a quick in and out, but it felt like old times shopping together.  On Sunday we joined the Sunshine Corner Golf guys for a Christmas luncheon at Clovelly Country Club.  It was absolutely wonderful to see everyone again and I am sure just as good for them to all see Jimmy too.  On Sunday morning Jimmy announced that he would again pop down to the shop with me.  On Monday evening we did a quick pop in at the Valyland Market where we saw many more of Jimmy friends.  Thanks to everyone over these few days who took time to come and say hello and for your lovely messages and being so positive.  Jimmy felt like a king! Might sound meaningless to many of you but it has really been so nice just spending some different time together.

We had to go through to UCTPAH this morning so that Jimmy could have a full blood count done to see if he is ready for stem cell harvest tomorrow.  I did not get a copy of the results but did see them and his white blood cell count is up to 10.1 (moprmal 4 to 11).   I actually thought it would be much higher, considering that usually it gets to 15 after 3 injections after each red devil treatment.  Just goes to show how strong the chemo is that he had in high care and how it has knocked his system.  They reckon that the next Neupogen injection is the turning point and by tomorrow morning his white blood cell count will be around 20. So....we are good to go and have to be at the clinic tomorrow morning at 8am to start harvesting his stem cells.  They are hoping to get a couple million which should take between 6 and 8 hours.  As each person is different, if Jimmy takes longer then they will transfer him to high care for the night and carry on, on Friday morning.  He will once again have a PICC line inserted in his groin and this is why he can't come home and go back the next morning as there is too much risk of infection.  I think the hardest part of this leg of the process is going to be the fact that he has to lie on his back the entire time with minimal movement.  His back still aches from time to time and gets stiff very quickly so I hope this isn't going to be a problem.

Jimmy tires quite quickly and I have noticed that he also gets breathless.  His hair has started falling out in tufts so pretty soon he is going to be completely balled but he is not worried about this at all.  I must say, but I think this part is much easier for a man.  He has had some bone pain since Monday evening but this was to be expected due to too many stem cells in the space that is available in the long and flat bones.  The worst area has been in his pelvis and the top of his thighs.

We had lovely visit from Jay Jay yesterday.  It's always lovely to catch up with him and thanks too for the delicious milk tart.  Ray and Bernadette are out from the UK on holiday so we had a visit from Melanie, Ray and Bernadette this afternoon.  It was so good to see you again, 7 years is a long time.  Matthew and Cameron also arrived in Fish Hoek yesterday from Johannesburg and as I type we await their arrival for a visit.  Summer has definitely arrived in Cape Town and so has that holiday feeling. 

Well....tomorrow is going to be a big day, one we have been waiting for, for a long time and one more step closer to recovery.  I gave Jimmy his injection as at 8pm and we need to set the alarm for 4am to give him another one 4 hours prior to harvesting.  As Julie says, hopefully Jimmy is feeling like Superman and they manage to harvest lots and lots of stem cells tomorrow.

Please keep Jimmy in your prayers and thoughts tomorrow and I will update the blog once I get home to let you all know how it went.




2014/12/10

Wednesday, 10th December

Day 9 - Stem Cell Transplant

It is with much happiness that I am able to say that so far Jimmy has done so well and not suffered too badly at all from those heavy doses of chemo last week.  He has had some difficulty sleeping. I'm not sure if this is some neurological effect that the chemo might have, but we still had some of those strong sleeping tablets he used to use when he was in agony with back pain.  They really have helped to a degree of at least getting some sleep so he has been very tired.  He has also been nauseous but also not really bad all the time.  I think there might still be some side effects to come as his hair will definitely all fall out this time around and this only happens sometime within 2 weeks, but we hope and pray that they will not be too severe.

Some more good news is that we started the Neupogen injections at home this morning, two per day for 10 days.   Today is still touch and go with his immunity and getting infections, we have been taking his temp 3 times a day since Friday.  But from tomorrow his system will already be getting stronger, his white blood cell counts will start climbing and hopefully his stemmies will also start producing and all this is thanks to the wonderful injections.  It has been very quiet around the house as we have not been allowed any visitors but this 'quarantine' is also lifted from tomorrow morning.

  It really has been a hectic year juggling so much.  I'm sure the children are all looking forward to kicking back and relaxing.  They all come to us from today till after Christmas and I can't wait for the house to fill up.  Having all my chickens home is such a lovely saying and describes very well how I feel.  Last week of work for me next week, a quick VAT reconciliation and then I can also relax, well...relax as much as mothers can.

Today was also the last day of school.  Well done to the girls on another year behind them of hard work with good reports. A big congratulations to Loren for achieving half colours for Hockey this year and to Emma who received the JB Swart Trophy for effort and most enthusiastic learner in Grade 9.  You make me so proud!  Emma is also coming on in leaps and bounds with her baking skills and was asked to make Jonathan Ackerman's birthday cake last week.  A group of the girls from the Academy got together to lend a helping hand and I can see why Jonathan was so impressed.

Emma and Jonathan Ackerman


 On Friday the golf academy are taking a road trip up to Sanddrif  in the Cederberg for a couple of days.   I have offered to drive up for the day and tow the trailer with all their goodies. If all goes to plan Jimmy is going to come along and enjoy a well deserved break from being stuck in the house and enjoy some different scenery.

So...this leaves stem cell harvest next week which means the next step in this process is Jimmy having a full blood count taken on Wednesday to see if he is ready for stem cell harvest on Thursday.

Hold thumbs these stem cells reproduce like rabbits for the next six days...

Hey..40 days and 40 nights is a long time..


2014/12/05

Friday, 5th December

Day 4 - Stem cell transplant

We are home! Yayyyyyyyeeeeeeee.....my bum is rather sore from sitting on that hard chair ;)

Jimmy is doing really great.  No major changes apart from a little nausea again after his chemo.  He has also eaten better today than he did yesterday.  He had his PICC line removed and I was allowed to stay and watch.  Quite amazing to see, apart from the fact that they pulled at least 20cm of pipe out of his leg/groin.  I had a good laugh because sister Masi removed the line but when he moved Jimmy's gown over so that he could get to it he exclaimed "oh....it's quite small".  He was referring to the size of the tube which had been used and I started to giggle.  He took one look at Jimmy's face and burst out laughing, trying very hard to explain that he was talking about the tube!!  Once the tube was out he had to apply pressure to the area for 30 minutes so that a decent clot could form.

Jimmy has been issued with a bag full of medication ranging from antibiotics to nausea etc which must be taken for the next 2 weeks.  On Monday I will be on a mission to get hold of 20 Neupogen injections.  We have already been told that this exceeds our medical aid allowance of 10 per script.

We are going to have a very quiet weekend watching sport and movies as no going out or visitors but maybe this is just what Jimmy needs while his body deals with all the chemo.

2014/12/04

Thursday, 4th December

Day 3 - Stem cell transplant

Whew, what a long day....

Jimmy is doing well.  I spent most the day with him and then came home at 7pm to a mound of paperwork but I am not ungrateful.  Although still very busy we are in the winding down stages of work now and starting to see the light at the end of the tunnel. October, November and December are always our hectic months - note to self to advertise in June next year for customers to book year end jobs by September.  A big thank you to my brother Stan...next year I will definitely be a daily part of the team again.  It truly is a privilege knowing that I have been able to rely on Stan and our awesome team of guys who have outdone themselves this year, yet again.

The chemo is 2 huge bags of Etoposide which take an age to run through.  Jimmy is also getting allot of IV fluids before and after the chemo to stop the chemo from burning his veins as well as anti-nausea medication and mouth rinse to try and prevent any mouth sores.  Within 30 minutes of finishing the chemo he was very pale and feeling nauseous and did not eat his supper.  He is experiencing a little discomfort from the PICC line and they also had him on oxygen this evening.  He will be discharged tomorrow but I am sure this will only be in the afternoon as he needs to get another 2 bags of chemo in and they also need to remove the PICC line under local anaesthetic.

Etoposide

Jimmy's body is going to 'bottom out' over the next 5 days and his bloods are going to drop to below 1 (normal for white blood cells is 4-11).  This is going to be a crucial 5 days until Wednesday when we start with 2 Neupogen injections a day and he will be highly susceptible to infection.  We have to take his temperature every hour and if there is any spike in temp he needs to be taken through to high care immediately. For this reason I ask that we not have any visitors until next Thursday.  It unfortunately is not worth the chance.  Dr Fine explained today that they will not harvest his stem cells if he has any bugs or even if his temp is above 37.  And on this thought....what impeccable timing as school breaks up on Wednesday when the children come to us.

Special thoughts go out to my brother Guy who had a knee operation today.  We hope you are not in too much pain and have a good recovery.  Rest this weekend!!

2014/12/03

Wednesday, 3rd December

Day 2 - Stem Cell Transplant


First of all - Happy Anniversary to my darling Jimmy. Thank you for the wonderful years we have spent together. It has been an awesome and very eventful journey and I look forward to many more with you by my side.


Jimmy was admitted today.  He had his lung function test which went fine and then we went down to high care.  Dr Fine inserted a PICC line in his groin area under local anaesthetic which also went without a hitch.  They actually put stitches in on each side of the tube and stitch the plastic parts to his leg so they cannot move.  Apparently this one will be removed again under local anaesthetic when he is discharged and when they ready to harvest stem cells they will put another one in but it will have a thicker tube.  They say these things can easily get infected and this is the reason it will not stay in as Prof had originally explained.

As soon as the line was up and running they had Jimmy hooked up to whatever is in the bags to pre-hydrate him.  He will get his first dose of the heavy chemo tomorrow morning.

Jimmy is such an amazing, positive person.  He was mumbling about the pages and pages of questions he had to tick yes and no to and I was telling him that at least he can do it now.  The last two times that he was in high care I did all the form filling in.  One of the questions was whether or not he is on contraception so Jimmy ticked yes and under comments wrote 'I use my personality'.  To the question about alcohol he answered 'yes please'.  I don't think he will ever change and I cannot tell you how wonderful it is to have a cheerful Jimmy back.


The PICC line inserted in groin to administer chemo
 
I will try my best to do a quick update each evening during this process so that you all know how it is going and how Jimmy is doing.







2014/12/01

Monday, 1st December

Day 1 of stem cell transplant programme

We had an appointment at the chemotherapy clinic today for Jimmy to have a whole batch of bloods taken prior to chemo and harvesting of his stem cells.  I can't believe that it is almost one and half months since we last visited the clinic and it was quite nice to see the staff again and some of our fellow cancer sufferers.  Some look really good and others taking a bit of strain.

The only blood results that we got back today where his white bloods which have come up nicely to 3.3 (norm 4 - 12).  Jimmy also had a cardiac assessment which is called an echocardiogram.  This is a machine that  uses standard two-dimensional, three-dimensional, and Doppler ultrasound to create images of the heart. 

We had about 2 hours to spare between the cardiac assessment and our appointment with Prof so we went up to the restaurant and had something to drink and then went to explore F4 isolation ward.  This hospital is enormous!  Eric, who we know from the chemo clinic, is working in F4 at the moment so he let us in as far as the second set of doors (as far as one can go without stripping down and putting on scrubs etc).  He showed us where the isolation wards are and Jimmy did his level best to try and 'book' the one with the best wifi reception for January.  Two of our friends from chemo clinic are in F4 at the moment so we asked Eric to please pass on our best wishes to them and that we are rooting for a good recovery and excellent results.  I don't want to mention names here as it is private but our one friend is doing very well, he has been in for 2 weeks now.  Our other friend is having a really bad time.  He has already been in isolation for 5 weeks and having problems with his platelets. F4 is not a nice place, there are so many side effects of the treatment and you literally feel like you are going to die.  We pray that he can summon the strength to fight back and pull through victorious.

We then had our appointment with Prof Novitzky which was Jimmy's usual check-up and then he explained the steps to us of the stem cell transplant as far as harvesting, which is what will be done this year.  He had the results of the echocardiogram and noted that Jimmy's heart is slightly enlarged.  I questioned him on this and he explained that this is usually a sign that the heart has had some stress. The most common cause is hypertension but he was surprised at this as Jimmy does not have high blood pressure.  He didn't really say anything more about it.  As I thought, Jimmy does not need to have another bone marrow biopsy tomorrow as his last one was within the last month.  On Wednesday Jimmy will have a lung function test and then he will be admitted for pre-hydration followed by 2 days of heavy chemo in high care.  He explained that the 5 days between chemo and the start of the Neupogen injections Jimmy will be at high risk of getting an infection and we need to take his temperature every hour.  He will be given prophylactic antibiotics whilst in hospital to prevent any infection.  Prof explained that you never know what is lurking in your body and when it is taken right down, like Jimmy's will from the chemo, it is best not to take a chance.  Although he did warn that the antibiotics prevent most infections, sometimes there is that one.  He is going to lose all his hair, probably have mouth sores, lose all taste for food and have nausea and diarrhoea.  Once we start the Neupogen injections twice a day at home next Wednesday his body will quickly pick up again as it brings up his blood counts and boosts stem cell production for harvesting purposes.  Unfortunately there is a side effect to this which they refer to as an 'explosion'.  Basically this means that there will be an over production of stem cells in the spaces in the bones which will not be big enough to accommodate these stem cells and this leads to severe pain in the long bones and flat bones of the body.  These would be arms, thighs and pelvic bones.  But this is a good sign.  On the following Wednesday we need to go back to the chemo clinic for a full blood count to see where his bloods are as this is a good indication of whether or not he is ready for harvesting.  Whilst in high care later this week they will also, under local anaesthetic, insert a line in his groin which they will use to administer the chemo and harvest his stem cells from.  Once the harvesting is complete they will remove it under local anaesthetic again.  He will only have the Hickman inserted under general anaesthetic in January once in isolation.

The good news is that the actual stem cell harvesting does not affect your body so Jimmy should be in a good space over the Christmas week.

So, I think we have a tough 2 weeks ahead of us but nothing that together we cannot handle.  It is our wedding anniversary on Wednesday and since his white bloods are sitting at 3.3 and he goes into high care on Wednesday, I think we have an excuse for an outing and a little celebration dinner in a restaurant. Oooh....so romantic :)