Friday, 29th May

WBC (white blood cells) 2.6.....(Normal 4.0 to 11.0) - dropped by 0.4
NE (neutrophils) 1.08.....(Normal 2.00 to 7.50) - up by 0.4  
RBC (red blood cells) 3.36.....(Normal 4.50 to 6.50) - unchanged    
PLT (platelets) 29.....(Normal 150 to 400) - up by 12
BA (basophils) 0.3....(Normal 0.0 to 0.5) - up to 0.2

Last time I wrote which was on Tuesday Jimmy had gone in to the clinic to have his bloods and his Zobone infusion done and had ended up having another Platelet transfusion.  The above counts were his results for Tuesday.

We have our 1 month post discharge from F4 appointment with Prof on Monday at 5pm.  Depending on how he thinks Jimmy is doing with his counts, we are expecting that Jimmy will be going on to a years maintenance course of Thalidomide.  When they do his bloods prior to our appointment they will also be doing his M-protein reading and we should get these results in about 2 weeks.  These are the ones that were zero which confirmed remission.

I have been very busy for the last week clearing out.  I touched on this lightly while Jimmy was home and on Thursday last week I got stuck in and have been on a roll ever since.  I have a confession....My name is Vivienne and I am a hoarder.  Hell, I can't believe the stuff I have kept over the years.  I have been very ruthless this time and hope it won't sneak up on me again.  It's such a good feeling, everything is neat and tidy and packed away where it should be.  Our guest bedroom looks like a bedroom again and not a storeroom.  I can't believe how many birthday cards I found which I had bought and never used.  I am quite a planner and usually get these things before the time if I see something nice but this is not such a good idea when ones memory is not so good.  But maybe not such a bad idea as I am horrified at the price of birthday cards and now I have a stash hehe.  Cleaning out has also led to another few jobs which I have made a list of that need to be done like sorting out photographs, among others.  I think I have my work cut out for me for a while.

Yesterday Megan and I went through to the US Embassy to go and apply for her US Visa.  I was blown away with the service.  We pulled up outside and we were informed that I have to drop Megan off if I am not travelling with her and I wasn't even allowed to park in the embassy parking.  I had to drive back to the shopping centre around the corner and wait for her to phone me and tell me she is finished.  She was not allowed to take her handbag in, only her paperwork and cell phone so she could phone me.  She was searched and swabbed for drugs and then had to lock her cell phone away.  From the time I dropped her off and was parked in front to collect her again took 13 minutes.  She was told her Visa application was successful and we can collect it on Tuesday.  She should have left for Venice yesterday but will more than likely leave next Thursday now...not much time left now.  She also got confirmation of her promotion from General Merchandise to CEI and moves over a week after she joins the Jade instead of later on in June. 

It was lovely having my parents here for the week.  We were very lucky to have a visit from Brent too, who was down from Jnb on business.  We all went out for dinner, including my parents and had a fabulous evening.  It is so nice to be able to go out again and not be stuck in the house month after month with Jimmy too weak, sick or immune compromised to go out.

We've got the kids here this weekend but exams started today so it will be a pretty quiet one with lots of studying going on.  The weather is still lousy but perhaps just as well.  I am hoping to veg out and catch up on our series.  Well this is of course after hockey tomorrow, Loren is playing at Hartleyvale Stadium and we have to be there at 8am...I hope it stops raining.  Guy and Catherine are running the Comrades this weekend so they have asked Jimmy to coach the girl's 2nd team hockey match tomorrow morning.  Nice that it is a home game and Jimmy is really looking forward to this. I'm sorry that Loren and I won't be back in time to see the game.  I would have liked to take some photo's of Jimmy in action.

I heard the very sad news this morning that a dear friend that I worked with a few years ago has been diagnosed with cancer.  I am thinking of you and sending lots of prayers and positive thoughts your way.  This is pay back time for all the support and beautiful messages that you sent me while Jimmy was so sick. I am so sorry that you have to go through this, be strong and stay positive.

I thought I would share a beautiful video with you of our beautiful beach here in Noordhoek where we live.  This is specially for my overseas friends.

https://www.youtube.com/watch?v=xcXQrMYM7Q4&feature=player_embedded

I've just heard from Megan that she is booked on a flight to Venice on the 11th of June and then starts straight away in her new position.  Yiippppeeeee she'll be here for my birthday on the 10th :)

Good luck to Guy and Catherine with the Comrades and to everyone else, have a super weekend.



Tuesday, 26th May

Gosh, I type the date and wonder where the year is going!

Right, so now my blog is private and you are reading this because you have access.  I would appreciate it if you still just spread the word as a couple have bounced back and it's difficult to keep track of who is on now.  I wanted to load them all from my email address so that I could tick them off and have a checklist but too many readers sent me last minute sms's, whatsapps and fb chat messages so they are all over the place now.

Jimmy got home from his business trip on Friday evening and looked very relaxed saying that it was awesome to see everyone again.  He managed to catch an earlier flight home and was bumped up to business class.  Some people have all the luck!!....some people deserve some luck :) On Saturday morning he went through to the hospital to see what his blood counts look like.  He couldn't remember whites and reds but the sister said they were fine.  His platelets were 25 so they are coming up slowly and then he went into high care on Sunday morning for a platelet transfusion.

We went to rugby again on Saturday evening which was also nice and social.  Once Jimmy got home from hospital on Sunday we popped through to Rohan and Patsy for tea and some delicious treats.  I spent most the weekend cleaning out cupboards.  Something I had planned to do in the year that Jimmy was off but just never got around to doing so very long overdue.  I am still not finished but have hit a bit of a slump now.

Megan and I went through to Capago with all her paperwork for her Schengen Visa on Thursday morning and we collected it yesterday morning.  Amazing service once again.  On Thursday she has her appointment at the US Consulate and hopefully this visa will also come back in a few day because she was supposed to leave this Thursday already.  I would say we are looking at her going next Thursday.

My Mom and Dad are in Cape Town for the week.  I had a lengthy chat with them both on Sunday morning but they never mentioned a thing about coming so this was a nice surprise.  We went shopping together yesterday and had lunch at Blue Route.  I really miss not having my mom close by to do mother-daughter things with so I love and really appreciate these times together.

Jimmy went by the hospital this morning to have his monthly Zobone infusion and he phoned to tell me his platelets are 29 today.  He was having another platelet transfusion too.  Seems like they trying to boost them a bit.  I've just spoken to him and he is still at the clinic.  Seems they had a problem trying to get the platelets in due to the deterioration of his veins.  I'm really not surprised and wander just how many times he has been pricked in the last 14 months.  I always joke and tell him if he lies down on our lawn and I stick the hosepipe in his mouth he would make a good sprinkler.

It's nearly winter in Cape Town and the weather has certainly already changed to winter weather.  We are already experiencing cold, wet and windy days.  Our boots and jackets have come out of hiding and our winter bedding is on the bed.  And so is my crochet blanket which I made and it looks pretty smart, even if I say so myself.

And so life has pretty much come back to normal.  Apart from the fact that doing medical aid recons is now a daily thing.  On Friday last week 93 medical aid claims came through in one batch.  All the different departments that Jimmy sees and has dealings with are mostly rather slack at using the correct ICD10 codes so the claims get rejected. We are talking figures of around R100 000,00 per statement! It takes a lot of following up and phone calls to sort this out but I suppose this is par for the course. 

Have a great week everyone
xx

REMINDER - NB Important massage regarding my blog going private on 22/05/2015

Please don't forget to send me an email (viviennesmith68@gmail.com) so that I can add your email address to the blog settings and send you a link for access to my blog once it goes private on 22/05/2015, today.

You will receive an emailed linked from me once it is private and then all you have to do is follow the instructions.

A copy of my original message regarding my blog going private:

NB Important massage regarding my blog going private on 22/05/2015
Unfortunately I have had to make the decision of changing the privacy settings of my blog from public to private.  This is as a result of companies picking up on words in a blog and spamming me with advertising in the comments section under a blog. eg I have typed something along the lines of 'making a change in my life' and I get spammed by a paint company offering to change my life by me contacting them to paint my house.  A little insensitive to say the least.

What this means is

You will need to send me an email so that I can enter your email into my privacy settings so that you have access to the blog.  The email address associated with my blog is viviennesmith68@gmail.com

I do understand that there are people that I do not know who read my blog as well as many of Jimmy's colleagues at other branches who I have never met.  Please do not feel weird sending me an email asking for access, I really love the fact that you are all following Jimmy's journey and would love that you continue to do so.  I myself follow quite a few blogs and do not know the authors.
All you need to do is drop me an email to the above email address and say 'please add me to Jimmy's blog' with your name in case I cant tie the email address up with you. 

For each address I enter, the google account associated with this address will be given access to view my blog.  If your address in not associated with an account, you will be sent an invitation email link allowing you to do one of 3 things:

1)  Sign in to an existing account
2)  Create a new account
3)  View my blog as a guest (no account required)

In the first two cases, you will be given permission to view my blog whenever you are signed in to your google account.  As a guest, you will be able to continue viewing my blog through the link in the invitation email (so don't delete the email), but this will expire after 30 days.  After that, you will need a new invitation i.e. you will need to send me an email again.

Please can you pass this message on to anyone you know that reads the blog in case they miss this post, specially Jimmy's colleagues at Komatsu and if his colleagues can please let any Komatsu customers know who read the blog.  I will do a couple of reminders before I change the settings on the 22 May 2015. 

So...all you have to do is send me an email to viviennesmith68@gmail.com and I will send you the link.  Once you click on and open the link it will tell you what to do.

.......and Friday means than Jimmy gets home tonight from his first business trip.

Have a great weekend
xx

Tuesday, 19th May

On Sunday Jimmy left on the 3pm flight up to Johannesburg for his first business trip and will be home again on Friday.  He has sneaked off without telling anyone at the chemo clinic that he will be away for the week.  I don't have a problem with him going away but I am a little concerned that he has had to have bloods done every 3 days to monitor his low platelet count and he had to have 2 platelet transfusions last week.  So I waved him goodbye with a promise to listen to his body and inspect himself each morning in the shower for bruising etc and that if anything felt different he will get on the first flight home.  "Yes darling" he assured me.  Well...he thinks he assured me.

So far so good.  I have spoken to him in the evenings and he can't stop telling me how nice it is to see all his colleagues again.   He had a touch of gout on Monday morning which he felt coming on during the flight up but by today it was gone. 

I thought I would be totally lost without him, never mind that he goes to work again but the fact that he now also wouldn't be coming home in the evening but to tell you the truth it has been a welcome break.  I have lived, eaten and breathed Jimmy for more than a year 24/7 and this week I'm enjoying the time out. 

Megan's last bit of paperwork has come through for her Schengen Visa application so we have an appointment for Thursday to get this done.  As soon as her passport comes back from Pretoria we need to apply for her US visa.  Yesterday a friend popped in for coffee and ended up staying 3 hours which was fabulous.  This morning Megan and I went through to Blue Route Mall and tomorrow morning we are going through to Cavendish to get the last few things she needs before she leaves.

On Sunday evening the girls and I we went to visit Stan and Michelle and say goodbye to Shannon.  She works on the super yachts and was also home on vacation for 3 weeks.  She left again yesterday.  Both girls have said how expensive it is to come home so I think it will be a while again before we see Shannon.  Unfortunately for Megan she works on a contract basis and has to come home to renew her visa for each contract, but this is lucky for me :)

Shannon and Megan...2 pees in a pod

I got a nice girly 2 disc mini series to watch this week in the evenings and Loren is sleeping over tonight and then tomorrow all my chickens will be here.  And before I know it, it will be Friday and the man of the house will be home again.

Don't forget to send me an email (viviennesmith68@gmail.com) so that I can add your email address to the blog settings and send you a link for access to my blog once it goes private on 22/05/2015.

Saturday, 16th May

Don't forget to send me an email (viviennesmith68@gmail.com) so that I can add your email address and send you a link for access to my blog once it goes private on 22/05/2015.

---oOo---

Jimmy had a platelet transfusion on Wednesday and went in for bloods yesterday again.  We have at last seen some improvement in his platelet count.  After being stuck on 17 in spite of getting platelets they have now come up to 21 but this is still not very significant when they should range between 150 and 400.  So he has just gone through to high care to have another platelet transfusion, his second this week.

We are nearing the end of Autumn which brings Winter and for us this brings hockey season.  Loren played her 1st Team hockey match last night at UCT and this morning Shannon played at home (Fish Hoek).  We were lucky that our first game wasn't somewhere on the other side Cape Town at 8am.  Hockey seems to have been the sport of choice in our family with Jimmy, Megan, Bradley, Loren and Shannon playing.  Funnily enough my Mother also played hockey.  Her dream was for me to play but I went to my first practise and got hit on the ankle by either a stick or a ball and that was it for me.  I think I was just to scared after that.  So I was pretty pleased that Megan and Loren showed such a keen interest, if for nothing else, for my Mom's sake.  Jimmy was still playing up until he was diagnosed with MM.  It's not a very warm experience standing on the side of the field during the Cape Town winters which are wet, cold and always windy.  There is nothing nicer than having a lovely cup of hot chocolate whilst standing in wet, mostly muddy grass while the damp seems to seep up through your shoes and into your bones.  But being there to support your kids and the team are special times and all their friends play too so it gets quite social with the other parents too.

On a devastatingly sad note, I spoke to Jeanette again last night.  She told me that Ron had been declared brain dead and they would be switching off the machines.  She went through to the hospital last night to go and say goodbye for the last time and at 11:00 this morning Ron took his last breath. 

Jimmy and I are absolutely devastated about this.  It is so terribly sad.  Ron's stem cell transplant had been a success and he was supposed to have been discharged on the 5th already.  I phoned Jeanette again when we got home from hockey earlier and she is being so brave.  I keep putting myself in her shoes and can honestly say that the thought of something like this happening to Jimmy while he was having his stem cell transplant never even entered my mind.  I know at one stage he was really sick and I knew things were bad.  He wasn't really with it that much due to the high doses of Morphine they were giving him and he kept getting infection after infection and I did wonder if he would ever make it home alive, but this is something you think about but you know he will get better and come home.

Ron and Jeanette had become friends of ours who we met at the chemo clinic.  We have only known them for about a year and don't know a lot about each other but it is a different kind of friendship.  Ron and Jimmy were there for each other during chemo treatments and Jeanette and I were there for each other, supporting each other whilst looking after our husbands.  Both Ron and Jeanette were there for me while Jimmy was in F4 isolation ward.  During this time they had actually gone home, back to the Wilderness.  Like us, they also enjoy camping.  They would send me messages full of positivity saying that Jimmy is going to fine.  After what Jimmy went through, Ron was extremely nervous about having his stem cell transplant and he would always say that Jimmy was his marker.  If Jimmy can make it then Ron would too.  He went into isolation about 2 weeks after Jimmy came home and it has been my turn to support Jeanette through Ron's stem cell transplant.  She, just like me, also wandered what the use was of sitting in Ron's hospital room day in and day out while all he did was sleep.  I had explained to her that I went through a stage of feeling exactly the same but Jimmy had told me, once he was home, that he felt it was safe to sleep while I was there because nothing would go wrong so I had explained this to Jeanette.

While Jimmy was in F4 they had gone on a road trip to get away before they had to come back to Cape Town for Ron's stem cell transplant.  We had stayed at the SANParks Wilderness park during our camping trip in January and they also spent 2 nights there in the log cabins.  We had discussed that once Ron was home and recovered that we were going to do a camping trip together.  It was while they were away that Jimmy was at his worst and they sent through a photo of Ron. They had pulled over in a lay-bye to have coffee and sandwiches.  The message from Ron was that they were toasting a cup of coffee to Jimmy and looking forward to doing this together soon.

In memory of our courageous friend Ron,

Honour

Respect

 Remember



Thursday, 14th May

WBC (white blood cells) 3.0.....(Normal 4.0 to 11.0) - dropped by1.2
NE (neutrophils) 1.04.....(Normal 2.00 to 7.50) - dropped by 0.14  
RBC (red blood cells) 3.33.....(Normal 4.50 to 6.50) - unchanged    
PLT (platelets) 17.....(Normal 150 to 400) - unchanged
BA (basophils) 0.5....(Normal 0.0 to 0.5) - up to 0.5

Just a quick update.  Jimmy had his bloods done again on Tuesday and in spite of having platelets last week his count has remained at 17 so he had another platelet transfusion yesterday.  He needs to go and have more bloods done again tomorrow to keep an eye on things.

We had some more sad news with regard to Ron and his stem cell transplant.  Jeanette says he was still in ICU as a result of bleeding on his lungs and was put on a ventilator but because he kept wanting to pull the ventilator out they put him in an induced coma.  But now he is taking too long to come out of the coma so they did a head scan and found a clot.  On top of this he is also spiking temperatures all the time because he has an infection in his Hickman line.  I am devastated for Jeanette.  This is so hard on her.  She is staying in a flat while Ron has his treatment and because they are from George she is all alone.

A friend that I used to work with at Lion Match passed away over the weekend in his sleep from a massive heart attack.  They had gone away for his birthday and Mother's Day.  Fanie was in his 60's.

Life is so precious and each day that we have together is such a blessing.  Everyday I realise how lucky we are at being given a second chance.  My thoughts and prayers are with Fanie's family during this difficult time and Jeanette I pray for a miracle.

Monday 11th May

First of all, wishing all the moms following my blog a Happy Mother's Day.  I hope you were spoilt like me.

What a lovely weekend we had, life is definitely getting back to normal and it feels so good!

Fifth day on antibiotics today and I can happily say that this morning I feel like I am on the road to recovery after a bad bout of Bronchitis. 

I probably should not have gone out on Saturday evening to Newlands to watch the Stormers vs Brumbies rugby game but it is the first time in over a year that Jimmy has had the opportunity of going and socialising with Komatsu customers and I just couldn't bring myself to let him down.  We had a lovely evening, it was so nice to see so many familiar faces again and an added bonus is that we won, only by one point, but as everyone always says when it's your own team that has won.....a win is a win.

Such a welcome sight
 

Yesterday we celebrated Mother's Day and my special girls spent the day with us.  We went out for lunch and Jimmy's parents also joined us. I was really spoilt, the girls gave me a beautiful Oriental Lily to plant in the garden and Emma made a Chocolate Ganache cake which was very decadent to say the least.

Such special memories in the making and I feel so blessed. We have learned to savour and appreciate special times together, you never know what is waiting for you around the next corner on the journey called life.

My big priority at the moment is trying to get Megan sorted with her Schengen and US visas.  We have received her contract from Flagship which is the Company who employs her but we are still waiting for the balance of the documentation to come through for visa application purposes.  There is a list of about 30 items that she needs from Flagship, just one of which is a detailed itinerary of the ports of call for the NCL Jade for the next 6 months.  We have made appointments at both embassies/consulates but keep having to phone and postpone them.  And it is impossible to do both at the same time as her passport needs to get sent away and we can't do the next one till we get it back.  If we don't receive paperwork this week it looks like Megan will have to join the ship a bit later than scheduled.  It's very frustrating when it is out of our hands.  Of course I welcome the opportunity of Megan staying longer than planned but she has been home almost 2 months now and I know she is itching to get back as she is eating into her savings where she could be earning more dollars.

As mentioned in my last blog, Jimmy had another platelet transfusion last Wednesday and needs to go for bloods again tomorrow to see where his counts stand.  We also received a 20 page printout on the perils of taking Thalidomide.  This is the oral form medication which he will be on for the next year as part of his maintenance program.  I went to look for the printout out now to share some of the information with you but Jimmy must have taken it to work with him this morning.  He needs to sign an agreement in order to take Thalidomide and agree to telephonic 'counceling' once a month whilst on it.  One single dose of Thalidomide can deform an unborn baby so men who take it cannot sleep with their partners (who can still bare children) without using a condom as it is also present in their semen.  He needs to sign acknowledgement of this too.  The possible side effects are horrific but as with anything cancer related one always has to way up the pros and cons.  A worrying factor of having chemotherapy is that they can actually cause other cancers.

Jimmy is back into the full swing of things at work again.  He is still going in a little later in the morning, although even this is getting earlier and earlier each day, and then stays till closing time.  I know we had to wait for the go-ahead from Prof Novitzky but I believe this is the best thing that could have happened.  Jimmy is happy as Larry again and has so much to talk about.  I believe overall we have been very lucky with his treatments, as hard as they were on all of us.  Our friends Ron and Jeanette are having a difficult time.  Ron was transferred from F4 Isolation into ICU as he has bleeding in his lungs - Jeanette, you guys are in out thoughts every single day. And Jimmy met up with another stem cell transplant patient on Wednesday who was blown away that he is back at work already.  She says it was 4 months before she could go back.  We have so many blessings to be thankful for.

You will notice my new look blog.  Of course this type of thing always comes about when there are more important things to do that I keep putting off, like dreaded paperwork and sorting and clearing out the cupboards in our guest bedroom.  I think it is much more user friendly now, scrolling down the side menu for an eon was a pain!  Any links to articles or photo albums of holidays are still down the side menu,which is now on the right hand side of the home page.  You will notice tabs at the top under our header photo and this make for much easier access into things like 'home', 'about us', 'how it all started' etc.  I have also added a timeline tab which fellow patients will find interesting as I always wanted to see the big picture during Jimmy's treatment.  I will update this as we go along. The 'home page' tab is where all my blog posts are.

Don't forget to send me an email (viviennesmith68@gmail.com) so that I can add your email address for access to my blog once it goes private on 22/05/2015.

I have received a lot of emails already but I'm not sure if I can add them yet or only once the blog goes private.  I will reply to each email once you are added so that you know you have access.

Have a supadupa week everyone <3

PS.  I have just been on to the blogger forum and I cannot add your email addresses until I actually turn the block onto private on the 22nd and then type them all in.  As mentioned, I will reply to your email once you added. 

Thursday 7th May

Good morning, says me at 11:45 and still in my pyjamas.  I went to the Dr yesterday and have a bad bout of Bronchitis.  Suppose this had to happen at some stage or the other.....I've been pushing my body for far too long.

Apart from anti-biotics he also gave me Celestamine which works wonders for drying up post nasal drip etc.  I took 2 when I got home and within half an hour I couldn't believe how well they worked.  Everything felt drier.  Within in hour my mouth was as dry as anything and even my eyeballs felt like the were trying to move around in the socket with no fluid.  This morning when I took the next dose I saw it says 1 tablet twice a day and not 2 like I had taken last night.  I think I'm lucky I didn't shrivel up like a dried prune.

Jimmy had his bloods done again yesterday and his platelets have now dropped to 17 so he went into the clinic this morning on his way to work to have a platelet transfusion.  Hopefully this one kicks in nicely and pushes his count up.

It's wonderful to see how positive Jimmy is since we have seen Prof.  He is so much more of the old Jimmy that we all know.  I didn't realise until know how quiet and withdrawn he had actually become.  He is loving being back at work and so far, not finding it too tiring.  I think he is really looking forward to his first business trip at the end of the month after being stuck at home for more than a year.

Yesterday morning he even got up and made me coffee in bed and then phoned our doctor to make an appointment for me and then he took me to the doctor yesterday evening. He then went and got some fish and chips for supper so that I didn't have to cook.  It feels really nice to be looked after again.

I have decided that I am going to put up a little chart like the one below at the beginning of the blog with Jimmy's counts from now on.  Probably a bit boring for most my blog readers but I have a couple of other Multiple Myeloma patients and carers following the blog and it is interesting to follow these counts when in and out of remission.

WBC (white blood cells) 4.2.....Normal 4.0 to 11.0  
NE (neutrophils) 1.18.....Normal 2.00 to 7.50  
RBC (red blood cells) 3.32.....Normal 4.50 to 6.50    
PLT (platelets) 17.....Normal 150 to 400
BA (basophils) 0.4....Normal 0.0 to 0.5

And here is a blood count explanation - it is close to a year since I explained this all:-

Red Blood Count

Red Blood Count (RBC) is the count of red blood cells These cells carry oxygen throughout the body. Normal RBC values for men are higher than for women and range from 3.6 to 6.1 million per cubic millimetre. Too many RBCs (or platelets) in the bloodstream may cause slow blood flow and compromise circulation. A low RBC may signify anaemia, a shortage of red blood cells, or haemoglobin the oxygen- carrying part of the RBC; this usually reflects underproduction or premature destruction of the cells.   

Haemoglobin
 
Haemoglobin (HGB) is a protein that enables RBCs to carry oxygen from the lungs to the rest of the body. The amount of haemoglobin determines how much oxygen the RBCs are capable of carrying to other cells. Normal haemoglobin levels for adult males range from 130 to 180 grams per litre for men and approximately 120 to 160 grams for women. Levels for children vary with age but are generally 1 to 2 grams lower than adult female values. Smokers often show an increase in their haemoglobin level. Epogen is an injectable drug that stimulates the production of red cells. It is used in anaemic patients to reduce the frequency of transfusions.

Platelets

Platelets (PLT or PT) are important for clotting, and are formed in the marrow. Low counts of platelets is called thrombocytopenia, and is quite common during chemotherapy. During thrombocytopenia the risk of bleeding and bruising is higher. Dangerously low platelet counts (<10; 10^9 / Litre )can put the patient at risk for brain Haemorrhages. High levels of platelets can cause circulation problems as the blood becomes too "thick".

White Blood Count

White Blood Cell Count (WBC) is the count of white blood cells called leukocytes. WBCs defend the body against infection and make up part of the immune system. Like other blood cells they are produced in the bone marrow. The total number of white blood cells has a wide range from 4,000 to 11,000 per cubic millimetre in the average healthy adult. While it can mean many things, a high WBC may mean you are fighting an infection, or that your immune system has been activated for some other reason. A low WBC might mean there is a problem with production in the bone marrow, which could be the result of various chronic diseases. It can also be a side effect of various different drugs, particularly chemotherapeutic drugs for cancer treatment. 

Neutrophils

Neutrophils are WBCs involved in fighting bacterial infections, and they are the most common of all the white blood cells.  With a lifespan of just about 8 hours your body has to produce about 5 billion neutrophils every hour of the day. Neutropenia is a drop in the absolute neutrophil count to below 1000 and places the patient at increased risk of infection and is defined as follows.

• Neutropenia in general = ANC < 2000 (slight risk of infection) 
• Mild Neutropenia = ANC > 1000 & < 1500 (minimal risk of infection) 
• Moderate Neutropenia = ANC > 500 & < 1000 (moderate risk of infection) 
• Severe Neutropenia = ANC < 500 (severe risk of infection)    

Basophils
 
Basophils (Bas) are WBCs usually involved in fighting parasitic infections. Increases reflect a possibility of parasitic activity in the body. If you have an abnormal basophil count and are experiencing diarrhoea, loose stools, gas or stomach bloating, you may want to ask your doctor to be tested for parasites. Basophils are the least common of the WBC's and a count of zero is quite normal.  

      

Tuesday, 5th May

 

One word......

 

REMISSION

 



 

 

Three words....

 

100% complete remission

 

We had our appointment with Prof Novitzky at 5pm yesterday.  As usual we had to be there at 4pm for bloods so Jimmy left work early and came home to fetch me and then we went through together.

 

I cannot tell you how nervous I have been about this appointment.  I think I was worried that the positive pathology report we had got back with regards to the M-protein reading had been a mistake or a dream.  We walked into his office and Prof met us at the door like he always does.  We said hello and Jimmy said I hope you've got some good news for us.  To this Prof replied Yes, yes...good news.  He has a very thick accent and I will never forget the words that came out his mouth nor the smile and sparkle he had in his eyes.  100% Complete remission is what he told us.  No trace of any cancer in the bone marrow.  I nearly climbed onto his desk and did the hoola hoola.  Jimmy was smiling with tears running down his cheeks.

 

So for now this is the way forward; Prof is going to give Jimmy a month off with no treatment so that he can carry on recovering from the chemo and stem sell transplant.  He is a bit concerned about Jimmy's low platelets but explained that this is a result of the heavy chemo he had prior to stem cell transplant.  After having platelets on Saturday morning when the count was 21 they have only come up to 24.  So Jimmy will have bloods again on Wednesday (tomorrow) and if this count stays at 24 or comes up then he will not have more platelets.  In the meantime Jimmy has to be very careful about doing anything where he can bump himself or fall as this will lead to internal bleeding.  We also have to keep an eye on things and if we notice bruising then he will also have to have some platelets.  His haemoglobin is also marginally low which means he is anaemic so if Jimmy is feeling tired this would be the reason.  His white bloods are remaining constant on the low side but this will also be monitored.  Prof Novitzky is hoping that after another month of recovery these counts will be a bit more normal.  And he needs to carry on taking Vitamin B and Folic Acid.

 

We have made an appointment to see him in a month again for another check up, at which time they will also take bloods for another M-protein result to see if the results are constant.  If they are and his bloods have come up a bit then Jimmy will go on a one year maintenance course of Thalidomide which is an oral form of chemotherapy.  The side effect of this is that it could lower his white blood cell count so this is why Prof wants to wait a month.  Another side effect is blood clotting but this is more prevalent with patients who have cancer cells present so he doesn't think this will be a problem.  He will have on-going blood tests to monitor the M-protein and make sure they are not 're-generating' for lack of a better word.  And the good news is he does not have to have another bone marrow biopsy for another 6 months.  In the meantime he will also continue with his monthly Zobone infusion to strengthen his bones.

 

With regards to work; Jimmy has been back 2 weeks now and all is going well so Prof is happy with this.  Jimmy has a conference in Jnb (I think) at the end of the month and we discussed flying to which Prof advised that local is fine.  He does not recommend international flying at this stage yet.  He actually made a joke and said local flying to Jnb is fine because Jnb is dangerous enough without having cancer :)  For obvious reasons Prof did advise to stay away from anyone with a cough.

 

Jimmy has been complaining about backache so Prof checked him out.  Jimmy cannot bend forward to get anywhere near to touching his knees, never mind his toes and cannot go down on his haunches.  Prof got him to sit on the examination bed and lean forward and he used that hammer looking thing that they usually check your knee reflexes with and lightly tapped all the way down Jimmy's spine.  Jimmy was fine with this and Prof explained that if there was any backache Jimmy would have hit the roof.  Basically the pain he is experiencing is still muscular as the muscles are still protecting his spine.  Jimmy needs to cycle on a stationery bike (so he can't fall off and hurt himself) or walk to loosen up all the muscles.  Prof also went into some detail regarding Jimmy's compressed vertebra and said that this will never come right on its own.  He would need to have a back operation to rectify the compression but he advised that if Jimmy is not suffering from backache to not have it done as it is basically only cosmetic.

 

So....what more can I say.  I am feeling so much more positive today and feel like we have truly been given a second chance.  Some of those walls that I spoke about have also crumbled.  I understand that I now also have to let go and urge Jimmy to do a lot more of the day to day things on his own and he needs to stop taking advantage.

 

Strange how the body is but by 10pm last night I had a very sore throat and have woken up this morning feeling like I swallowed sandpaper and have a snotty nose.  I think it might be a sinus infection.  All this time I did not get sick once!  I think when Prof mentioned 100% complete remission my protection layers  just peeled right off with relief.

 

In the next while my blogs will become less frequent but I will still do updates, was thinking maybe once a month or so.  If you have not done so already a good idea would be to subscribe to receiving the any blogs to you email address, this way you will not miss any and have to think back to when last you read it.

 

Don't forget to send me an email (viviennesmith68@gmail.com) so that I can give you permission to read my blog once it goes private on 22/05/2015.

 

Thank you for all your love, support and prayer during this time.

It has been simply overwhelming.

I can't thank you enough,

All my love xxx

 

 

 

 

 

NB Important massage regarding my blog going private on 22/05/2015

Unfortunately I have had to make the decision of changing the privacy settings of my blog from public to private.  This is as a result of companies picking up on words in a blog and spamming me with advertising in the comments section under a blog. eg I have typed something along the lines of 'making a change in my life' and I get spammed by a paint company offering to change my life by me contacting them to paint my house.  A little insensitive to say the least.

What this means is

You will need to send me an email so that I can enter your email into my privacy settings so that you have access to the blog.  The email address associated with my blog is viviennesmith68@gmail.com

I do understand that there are people that I do not know who read my blog as well as many of Jimmy's colleagues at other branches who I have never met.  Please do not feel weird sending me an email asking for access, I really love the fact that you are all following Jimmy's journey and would love that you continue to do so.  I myself follow quite a few blogs and do not know the authors.
All you need to do is drop me an email to the above email address and say 'please add me to Jimmy's blog' with your name in case I cant tie the email address up with you. 

For each address I enter, the google account associated with this address will be given access to view my blog.  If your address in not associated with an account, you will be sent an invitation email link allowing you to do one of 3 things:

1)  Sign in to an existing account
2)  Create a new account
3)  View my blog as a guest (no account required)

In the first two cases, you will be given permission to view my blog whenever you are signed in to your google account.  As a guest, you will be able to continue viewing my blog through the link in the invitation email (so don't delete the email), but this will expire after 30 days.  After that, you will need a new invitation i.e. you will need to send me an email again.

Please can you pass this message on to anyone you know that reads the blog in case they miss this post, specially Jimmy's colleagues at Komatsu and if his colleagues can please let any Komatsu customers know who read the blog.  I will do a couple of reminders before I change the settings on the 22 May 2015. 

So...all you have to do is send me an email to viviennesmith68@gmail.com and I will send you the link.  Once you click on and open the link it will tell you what to do.

Sunday, 3rd May

It is almost 2 weeks that Jimmy has been back at work now.  So much for us discussing in detail how he was going to cope with tiredness and making a decision that every second day would be a good idea, giving him the day in between to rest and recover.  He has been in every day going in a bit later in the morning and leaving the office at closing time unless he has to have bloods done.

While on the subject of bloods, he is having them done now every 2 or 3 days as they are keeping an eye on his low platelet count.  His white blood cell count seems to be a bit like a yo yo ranging between 2.7 and 4.2.  Jimmy's haemoglobin has been pretty constant between 9.7 and 10.7 but his platelets just keep dropping.  He had bloods done on Friday and had to go into high care yesterday for a platelet transfusion.  They have now dropped to 21.  This is a little worrying to me as he has to be careful that he doesn't injure himself as this could result in internal bleeding.  Other than this the only niggle Jimmy has is some backache but we'll discuss this with Prof.

We have our appointment with Prof Novitzky tomorrow at 5pm to discuss the results of the bone marrow biopsy and the M-protein results.  I am feeling a bit nervous as I am sure he will also tell us what comes next and of course this depends on the bone marrow biopsy results.  I didn't phone to find out what the results of the bone marrow biopsy are as it would not have come with an explanation which I think is worse than knowing what they are.

My life has really taken a turn since Jimmy has gone back to work. I can't quite put my finger on it.  I know I am supposed to be overjoyed at the fact that there were no Myeloma cells present on his last M-protein pathology results but quite simply put, I just don't.  Maybe it's because I am waiting to see Prof tomorrow when we will know what the future holds?  Maybe it's because I know that Multiple Myeloma is not curable and it will come back?  Maybe I have just put up too many walls so that I can never feel like I did that first week after Jimmy was diagnosed?  And then I thought that maybe I am feeling down because I have been so busy being the strong person and looking after Jimmy for more than a year, forcing myself to be strong and positive for him that I am now actually only taking it all in.  The last year has just been go, go for me.  So many people have asked how I cope and my answer is always simply that when you've got to do it you do, thinking just doesn't come into it.  Maybe I am thinking about it all now?  I feel a bit selfish too as Jimmy is doing so well and his life is coming back to normal and he has returned to work and where is my life now.  Some days it is so bad that I actually feel like I have been used for the last year.  In all this I gave up everything including having my children live with me and  I don't feel like I am getting anything back.

If Jimmy is in remission, which I know we are all hoping and praying for, how long will it last?  I don't think I can deal with how I feel now if this is how it's going to be going forward.  Always wondering when.  We've been together 24/7 for the last year and when something like this happens you think about life and what the important things are.  Being together and making the most of every moment has been so important but it's not the same now that Jimmy has gone back to work.  He comes home and unwinds like he always did, in front of the TV and watches sport.  We eat dinner and watch a movie together and then we go to bed. Of course this is all normal in most households but Jimmy has cancer which is not normal.  I don't want to be in a rut....I want to make every moment count.

We did spend a lovely weekend camping with my parents on the beach in Gansbaai last weekend.  We've had two long weekends in a row here in SA.  It was pure bliss to get away.  We love camping and I had been dying to get away again.  I just love the licence so sit in a camp chair and read or take in nature and do nothing.  We took a lovely walk on the harbour wall one evening and watched the sun set.

The days are definitely getting shorter in Cape Town now with chilly mornings and evenings and we've had our first bit of rain too.  I am not a winter person and battle to keep warm so I hope we can look forward to a shorter, dryer winter this year.  I do believe that it might also have something to do with the fact that Cape Town in not very conducive to camping in winter.

Keep us in your thoughts tomorrow at 5pm when we see Prof and of course I will update on here once we get home.