2014/04/30

Wednesday, 30th April

Those magic pink pills seem to do the trick.  Jimmy had a much better night's sleep and this morning his back was better than it has been in two days again.  Unfortunately he has just taken the last one, so tomorrow I'm off to the pharmacy to beg for some more to last till after the long weekend, when we can get another script from Prof.

Jimmy drove through to the office today for an hour and a half to visit everyone and I think this was a mutually beneficial exercise.  Of course he doesn't know, but I phoned Spencer and told him Jimmy was on his way and made him promise me that if he saw Jimmy was getting tired he would tell him to go home as the drive back is still another 45 minutes.  And he left with strict instructions to let me know when he got there and when he was leaving <3

The stark reality of things.....this afternoon Michelle popped around so we can get all our ducks in a row.  We have never updated our Wills since I started my 2 businesses and other things like signing a General Power of Attorney. And before any of you Sunshine Corner guys have a heart attack.... I promised Jimmy I wouldn't sell his golf clubs hehe

And then our news of the day is that we eventually got some clarity on the whole treatment authorisation situation.  I phoned the medical aid at 08h30 only to be told that they still hadn't received any paperwork.  Jimmy managed to get hold of the right person at UCTPAH this afternoon and it was explained that they cannot send the motivation off to the medical aid without the results of the bone marrow biopsy.  These should have already been received but due to the public holidays everything is running late.  They hope to get these results back on Friday (tomorrow is a public holiday) and the medical aid should start processing the authorisation on Monday.  This will take approximately 2 to 3 days.  Wednesday is also a public holiday so we are probably looking at starting chemotherapy the following week.  How frustrating......if this had been explained to us right from the start we would not have spent the week anxiously waiting.

Well, we look forward to another lazy long weekend.  My girls have gone away with Mike (their dad) and Brad and Shan are here to enjoy some special time with their dad.

And Jimmy.....he is fast asleep on the couch.....

2014/04/29

Tuesday, 29th April

Today is two weeks since Jimmy was diagnosed.  In some ways it feels like forever and in other ways not.  I feel like this whole cancer cloud has been around for much longer than this but I think this is because his back has been so sore for so long.  But then I can't believe that we are going into our third week of him being home with me during the day.  He keeps talking about popping into work for a few hours (more just to visit, I think) and it doesn't happen but today he said he might pop in tomorrow and I was like....what?.... what am I going to do while you not here??  I'm sure he must be missing the work day and interaction with his staff terribly.

The good news is that today was the last 40 cortisone tablet breakfast he had to endure Yay! The other fizzy medicine is also finished.  Jimmy's backache has been worse and he isn't sleeping as well as a result, so we decided to change his pills.  He is on pain killers every 6 hours and he was on anti-inflammatory tablets every 8 hours.  On Friday Prof changed the anti-inflammatory ones to one that is taken once a day and they don't seem to be working as well and since he still had some left,  we've gone back to the pink ones.  By this evening he is feeling some relief.  The pain is quite strange as it seems to move around from one side of his ribs to the middle at his spine and then to the back of his hips on each side of his spine.  I am wondering if this is the different lesions playing up?  I am a bit weary of going onto the Internet to research Myeloma because I'm not to sure what to believe.  It would be great to get a good book with all the info....does anyone have any recommendations or perhaps know someone who could recommend a good book?

We played the waiting game today.  At 08h30 Jimmy was on the phone to the medical aid to find out if the authorisation for the chemotherapy has gone through, only to be told they haven't received the motivation from Prof.  When we saw Prof on Friday he told us that it had already been done and we should phone this morning.  So I phoned UCTPAH but didn't manage to get hold of anyone today.  When I phoned the medical aid at 15h30 they still hadn't received anything.  Very frustrating as I don't know who is in the wrong.  The other thing is that the treatment has to be twice a week and this can only be on a Monday and Thursday or a Tuesday and Friday.  Monday is gone and Thursday is a holiday (the clinic isn't open on public holidays) and today is gone and I'm not sure if they will start treatment on a Friday.  So chances are we are looking at next week now.

I had a very productive day today doing financial year end for Miniature Monsters, throwing myself into figure work.....it felt very good!  We had rain in Cape Town today too which was wonderful for my garden but not so good for Brush Works.  Thankfully we were high pressure cleaning today so it made no difference if it was raining as my guys and everything get we anyway. The mornings and evenings are definitely getting cooler.....winter is on its way.

I would  like to say thank you to each and every one of you for supporting us through this.  Your thoughts and prayers mean so much.  I have not commented on any of your comments because I don't really know what to say.  I have mentioned before that to keep saying thank you sounds so arb but I really mean a big BIG thank you, from the bottom of my heart.  I love reading your comments, you are all so brave.  In fact, I read them a few times each day....they remind me that I am not losing my mind.

Well, it's 8pm and there are no school lunches to make so I am going to say good night and go snuggle up to my man on the couch with a blanket and watch a movie :)

2014/04/28

Monday, 28th April

Jimmy, 3 weeks ago, dancing at Megan's 21st with a broken vertebra!
Wow! I have had such positive responses to this blog, thank you so much.

We had a lazy Sunday morning yesterday.  I made some meatball and cheese omelettes for breakfast before my mom left to drive home to Bredasdorp.  I'm going to miss having her company and support, it was nice having someone else in the house and having other things to talk about, apart from just being able to give her a hug when I felt like it.  We have a family thing that we all do when driving up to Bredasdorp to visit my mom and dad and that is that when we get to Napier, which is about 20km away, we phone and say 'put the kettle on'.  Mom said she phoned my dad from Napier and when she turned into the driveway he was waiting for her.  She commented on the fact that he standing waiting for her and he replied to say that he had been waiting since Thursday....they do everything together.  Shame, my dad is the kind of person who calls a spade a spade but deep down he is such a softy.  I can hear from his voice when I speak to him on the phone that he is absolutely gutted by this whole thing.

Jimmy has been in more pain today again, than the last few days.  This morning he really battled to get out of bed.  The pain in his back seems to be moving around to different places.  Things like pulling on a pair of tracksuit pants are quite a mission.  He was questioning this and I tried to make him feel better by explaining that there will be good days and bad days and today is a worse day but we are thankful for the few good days that we have had.

We popped down to the mall to go get a few things.  Routine in this household has gone out the door, we even ran out of toilet paper!  And then we met our friends Rohan and Patsy at the beach for lunch.  A belated happy birthday Patsy!  It's such a glorious day and the wind hasn't blown for days now. We were 15 minutes late and I made a note to myself to remember that it takes Jimmy so much longer to walk now.  As we were leaving we bumped into Brad and Shan and Carol (their mom) on the beach so Jimmy went over to say hello.  They are finding it hard to come to terms with everything and it was quite emotional which upset Jimmy.  We are looking forward to having them for a few days from Wednesday this week.  My girls are going away with their dad for the weekend so Brad and Shan can spend some special time with Jimmy.

With all these public holidays it is hard to keep track of what day it is. Tomorrow morning first thing I need to phone the medical aid to find out if Jimmy's treatment has been authorised.  As soon as this comes through, we need to get hold of Prof and he wants to start with the chemotherapy as soon as possible.  He did mention this week but we will have to see what happens.  So often I think something won't be done and it does and other times we gear ourselves up for results and then we don't get them.  We are also expecting the results of the bone marrow biopsy this week.  Once we have these results we will pretty much know where we stand with regard to what stage the cancer is in and whether any extra chemotherapy will be necessary.

The unknown is quite a scary thing for me.  I am a planner, to the point that I can be quite anal.  I do things (everything) when they need to be done in case something pops up and then regret that it wasn't done.  Cancer is something that is so totally out of my control.  I can't help Jimmy with the thought processes that are going on inside his head because they are his thoughts. I don't know what is coming and I just wish this was something that was done by the book, with by the book results and by
the book reactions.   It makes me feel quite helpless.....




2014/04/27

Saturday, 26th Apr

Jimmy had another good night's rest.

Megan offered to take us and Granny out for breakfast so we went down to Cafe Roux and had yummy bacon croissants.  Jimmy was quite keen to pop up to the golf club for an hour or two, to visit his buddies so my mom and I decided that we would go do some shopping.  My parents live in Bredasdorp so Cavendish is like heaven for my mom.

Rohan phoned to say that Patsy and Colleen were also going to join him at the club so I sent Patsy a message to say that I would not be there as I had made prior arrangements with my mom.  A few hours later I mentioned to my mom that it was quite strange that Patsy hadn't replied to my message as it was unlike her.  While I was checking, only to realise I had sent the message to Maureen, Jimmy phoned me to tell me it was Patsy's birthday.  Oh boy....I had forgotten my best friend's birthday!!!  I phoned her right away to apologise and being the friend she is, she played the whole thing down x  No excuse, but I suspect we will have a couple of episodes likes this in the coming months.

My mom and I had a wonderful day and we truly shopped till we dropped.  I really miss not having my mom living close to do things like this together.

I think it was also good for Jimmy to get out on his own.  We have been joined by the hip for more than two weeks now.

Well.....I am pleased to say that I have now caught up and will be making daily updates on the blog.  I had typed my diary into word for when the blog was up and running and I am there now :)

Friday, 25th April

What a blessing it is having my mom here!

Every day now Jimmy has less back pain.  His face is looking much less drawn and he doesn't look so tired anymore.  He has been complaining about a pain around his rib area on the right hand side but says it's not half as bad as his back was.

We went through to UCTPAH just after lunch, of course not knowing if they were going to manage to fit us in to see Prof for the results of the bone marrow biopsy.  We are starting to get accustomed to the routine at the hospital now too.  If we coming for blood tests we have to report to reception where the staff already know us and they print a batch of stickers which we have to take with us to the clinic.  If we are coming for treatment then they open a file.  We also paid R30 for parking on the previous visits and now know that if we get our parking ticket stamped we only pay R7 regardless of how long we are there.

We went though to the clinic where Olivia was waiting for us.  She did Jimmy's vitals and took some more bloods.  We asked her if she had any idea if Prof would see us and what results they had and she told us that no matter how busy he was, we would see him today.  The blood tests had come back and Jimmy's calcium levels had stabilised but they were still waiting for the bone marrow biopsy results.  The calcium levels was excellent news as he was now out of danger of kidney failure.

From here we went through to see Prof.  The results of the skeletal xray had also come back and they had picked up lesions in his skull, arm, legs, ribs and of course his spine.  From what I understand lesions to be, they are little holes that look like material that has been eaten by moths and this is where the cancer has eaten the bone and it now has gaps in it.  This is what causes the bones to become soft.This now changes the diagnosis from Myeloma to Multiple Myeloma.  Prof examined Jimmy and he told him about the pain he was experiencing around the rib area and Prof said he is suspecting that it is probably a rib fracture so he gave Jimmy a new script for some more painkillers.  He confirmed again that Jimmy had probably had the cancer for about 3 years already.  He explained to us that he has sent a motivation off to our medical aid and as soon as they authorise the treatment he wants to start with the chemotherapy while Jimmy's calcium levels are good as these could rise quite easily again.

He explained that the chemotherapy would be done in cycles.  There will be 4 cycles of 3 weeks and each 3 weeks would consists of intravenous chemotherapy twice a week for 2 weeks and then a week of rest. So the 4 cycles will last 3 months. During the coming week he is expecting the bone marrow biopsy results to come back and that will tell him what stage the cancer is in and whether or not another 4 cycles would be necessary. Once the chemotherapy is complete they will do a bone marrow stem cell transplant but he also told us that we would not be using a doner.  Once the cancer is in remission they will remove his stem cells from his body and freeze them and then they do a really strong session of chemotherapy to kill everything that is left and then put the frozen ones back.  I was a bit shocked about the Multiple Myeloma diagnosis but Prof seemed to think that that would have been the case all along.  He asked us to please phone the medical aid first thing on Tuesday morning as sometimes we hear before they do as to authorisations and said he would like to get the ball rolling and if possible, start the chemo on Tuesday.  He said that as soon as he starts the chemo, the body starts regenerating itself. Prof also cautioned us against Jimmy getting a cold or flu.  He said that if Jimmy coughs he will easily break a rib and unfortunately there is no treatment for this, just very painful.

As hard as it is to take this all in, I must say, it is a relief that we know now and can move forward and start everything.  Jimmy is feeling really positive and is hoping to be able to go to work in between the chemotherapy sessions.

And of course we came home to my mom being here and she made a delicious dinner of crumbed pork chops, mash potatoes, carrots and peas.




Wednesday, 23rd April

What a good day!

I snuck out of bed this morning to drop the girls off at school and left Jimmy sleeping.  He was still fast asleep when I got home.  He had such a good day today :).  Not sure if it's the remnants of all yesterday's painkillers but he did quite allot of work on his laptop and phoned the medical aid to follow up on things like Oncology claims and see if they can claim the MRI under oncology as well.  One of his colleagues from work also came around to the house and they had a meeting.

I also had a good day and think it was a good idea to pop out for some alone time and do the shopping and then collected the girls from school.  Bumped into a friend in Pick 'n Pay and we chatted for about 30 minutes which was also quite good.  I am constantly reminded of how much shock our friends are in too, with this whole thing.

I took Jimmy to our GP as he has a horrible skin condition on some of his fingers, I thought it might be a fungus.  It was also the first time we have seen our GP since the diagnosis so it was good to chat to him today.  I must say, we were both very strong today!  Turns out it is Eczema and probably caused by some stress.

I am very pleased that my Mom is coming tomorrow to spend a few days with us, she'll be here till Sunday.  I am looking forward to some motherly support and love....whoever can replace your mother?

Taking 40 Cortisone tablets also didn't go too badly.  I divided them into 4 piles of 10 and down the hatchet they went.  As my facebook status says..."who needs breakfast after 40 cortisone tablets?"

So, all in all a good day and I am feeling blessed.  Thanks to everyone for all your prayers xx

Tuesday, 22nd April

Today we had a 9am appointment for a skeletal xray to see if there are any lesions and Jimmy had his bone marrow biopsy at 12pm.  We were in the peak of morning traffic into Cape Town so Megan dropped Loren and Emma at school.

I am feeling rather tired in spite of long weekend with lots of relaxation and when I mentioned this to Jimmy he told me that each time he moves in bed during the night, I wake up.  Human instinct is a strange thing.

The xray went well, took about 45 minutes.  The biopsy took about 20 minutes and Jimmy said it was a bit painful but more a strange feeling than anything else.  His calcium levels are still very high so they took more bloods today and in the meantime Jimmy has to take 40 Cortisone tablets at once after breakfast.  We were supposed to get the results on Friday but Prof is fully booked so don't know if we will have any news after all.  We do however have to go back to the oncology Clinic, he is now officially registered as an Oncology patient, on Friday for more blood tests.  They have said again that if his calcium levels aren't down he will be admitted for 4 days to intravenously flush his kidneys.  Apart from backache, Jimmy is not really feeling sick so he asked Prof if he could go to work tomorrow and he was told under no circumstances as he needs to rest, they are worried about his kidneys.

We got home to Megan informing me that her car battery is flat because she left her lights on.  Loren got a puncture in her motorbike wheel and I had asked Stan to sort it out for me today but he phoned to say there was nowhere in Fish Hoek that could repair it and that he would take the bike to Muizenberg on the bakkie tomorrow.  I'm like....give me a break....doesn't anything go smoothly!!

Thursday, 17th April

Pain pills every 6 and 8 hours and I am very pleased that Jimmy's spasms have stopped.  Prof had explained that our biggest concern was Jimmy's high calcium levels which could lead to kidney problems and renal failure.  They had taken some more bloods at the clinic and if necessary Jimmy would be admitted for 4 days to intravenously flush out his kidneys.  Olivia phoned to say that they couldn't fit him in for the skeletal xray and that we should have this done on Tuesday morning prior to the bone marrow biopsy.  At lunch time I phoned Olivia to find out if the results of the blood test had come back and she said they would only get them in the late afternoon and we agreed that if I didn't hear from her then all was good.

We suddenly realised that we had a long weekend ahead of us with no children as it was an off weekend.  We alternative weekends with our ex's.  This idea seemed very appealing and we decided that we would spend the weekend watching movies in our pyjamas and eating junk food.

We also decided that it would be better to tell everyone up front so I sent out some more bbm's, whatsapp messages and sms's and we also told our close friends that they could let our other friends know, it wasn't a secret.

We spent the day vegging and taking many phone calls from shocked friends.  The number of messages we received was unbelievable.  Everyone sending their love and prayers and positive thoughts.  I knew we had some good friends but I did not realise until today just how good they are.  As one friend wrote: "One day you will look back and count the blessings you picked up along the journey" and I know that today I had found my first blessing....our friends.

Wednesday, 16th April

Last night Jimmy suggested that he sleep on the couch in the lounge as he found the bed too uncomfortable for his back.  I was absolutely horrified.  I could not believe that on the night we find out that he has cancer, I would not be able to sleep next to him so I bundled up the pillows and 2 blankets and we each slept on the 2 couches in the lounge.  Jimmy being on some stronger medication drifted off to sleep quite early but I had spent quite a few hours on the phone telling family and close friends our devastating news.  We had also asked his Mom and Dad to pop over so we could break the news to them.  I was still awake at 2am and was up at 5:30am.

We are all in shock.  My eyes feel like blocks of dry cement and are all swollen.  My nose is all red, like when you have a cold.  I dropped the kids off at school and when I got home I phoned the school to explain the situation and ask them to please notify their teachers to keep an eye on them as, obviously, they were shattered.

At about 11am the Oncologist phoned to say we had an appointment at 5pm to see him at UCT Private Academic Hospital and that we should report to the Chemotherapy and Haematology Clinic.  I spent the day making omelettes and food that could be stored in the fridge.  I cleaned out some of the kitchen cupboards and tidied out the guest bedroom which becomes a bit of a 'pakkamer' until just before my parents come and stay with us.  Anything to keep busy and my mind thinking of anything but the cancer!

I drove to UCTPAH.  We were supposed to leave for the Kgalagadi today and meet up with my brother Stan and his wife Michelle.  We had so been looking forward to this trip for months.  Although not our first, it would have been our first camping at Rooiputs which is on the Botswana side, an unfenced camp.  As we were driving along the highway I mentioned to Jimmy that the two of us were driving together but in the wrong direction.

We met Zelda and Olivia in the clinic, two lovely ladies, who would from now on, be our everything there.  Olivia explained that whenever we come we will first report to the clinic where Jimmy's blood pressure and vitals would be taken as well as a urine test.  Whilst sitting there, there was patient having a bone marrow stem cell transplant.  When Olivia explained was was happening Jimmy went as white as a sheet.

From here we went to meet Prof Navitzky.  Prof Navitsky is Polish and I would say in his early 60's.  He asked allot of questions and did allot of explaining.  We filled in allot of forms too.  Jimmy has to be back at the hospital tomorrow morning for full body xray of all his bones (skeletal xray) too see if they can pick up any lesions anuwhere else.  It is also done so that in a few years they have something to compare new xrays to. On Tuesday he will have a bone marrow biopsy, done under local.  From this they will be able to tell what stage the cancer is in.  He explained that there are 3 steps to the treatment: The first being chemotherapy, the second being a bone marrow stem cell transplant and the third would be getting the cancer to an acceptable level that would give Jimmy a good quality of life and be treated as a chronic disease.

The drive home was quite traumatic.  I had spent the last 2 days being strong and pushing any negative thoughts out of my head and suddenly it was all too much.  Maybe it was also the relief of this appointment being over.  I'm not sure...but I cried allot and poor Jimmy kept asking me what was wrong.  He wanted to know if the Prof had spoken to me about something when he wasn't there.  It was then that I realised that I have to be open to him about how I am feeling.  I assured him that that was not the case and that I was just feeling very emotional and tired.  He said he was feeling much better and had thought he was going to be told best case scenario 2 years and worst case, 6 months to live.  He asked me what I had thought and I told him that I hadn't even let myself think that far.  His mood picked up and he told me that we hadn't been married that long and most couples go through a 7 years itch but he thought he would wait 2 years and test me with a big whammy.  He also told me that he was very happy that this cancer couldn't be sexually transmitted as he couldn't wait for his back to get better.  We laughed about this and it made me think back to the last few days and just how quiet he had been.

We slept on the couches again and I could see Jimmy felt a huge sense of relief.

2014/04/26

Tuesday, 15th April 2015

At 6pm the specialist phoned me and apologised for doing this over the phone but he believed we would be waiting for the diagnosis.

He said that we definitely had a problem here and that Jimmy has bone marrow cancer and that it is Myeloma.  CANCER.......the dreaded word......and suddenly it had become part of my world.  I listened to everything that he was saying, my mind racing all over the place.  And with his words still sounding in my ear but at a distance, almost as if in a tunnel, it all sank in.  I could feel my hot tears running down my cheeks, said goodbye and burst out sobbing and ran to the bathroom.

Jimmy had been sitting on the couch in the lounge and when I looked up from blowing my nose, he was standing in front of me with tears running down his cheeks.  I suddenly realised that without even saying anything to him, he knew he had cancer.  He stepped forward, put his arms around me and told me not to worry, everything would be okay.....

A little background.....

(Mid February to 15 April)

Approximately 9 weeks ago Jimmy started complaining that his back was sore.  I did what most of us would do and told him he probably slept funny.  Over the next few weeks his back would be painful and then it would feel better and then he would play a round of golf and it would be sore again.


The guys has planned their annual golf tour, I call it their male bonding week.  They were due to leave on the 12th of March and Jimmy was adamant that his back would be fine by then.  I suggested he take some anti-inflammatory tablets for a week because this is generally what a GP would prescribe.The weekend before they left he complained his back was really sore and he wasn't sure if he would be able to play golf.  He decided that since he had paid he would go along and only play if his back felt better.  The left on the Wednesday and each night Jimmy would phone and tell me he was in agony.  He was battling to get out of bed in the mornings and the guys were having to help him put his shoes on because he couldn't bend down at all.

He got back from tour and went to see our GP who put him on a week's anti-inflammatory tablets.  These didn't really help.  The following week we went camping with a group of friends and he basically couldn't do anything.  We got back and he went to see our GP again who gave him a Cortisone injection.  Two days later it still didn't feel any better so our GP suggested Jimmy go for Xrays and he took some bloods.  The Xrays came back and they couldn't pick up anything and the only thing that came back from the blood tests was that Jimmy's iron levels were low so we got him some iron tablet and another script for some stronger painkillers.

At this stage Jimmy was really battling with the pain and starting to look very tired.  He asked our GP to please refer him to a specialist.  The specialist gave him an appointment for the 23rd April which was 3 weeks away but referred him to a physiotherapist, saying that he believed it was a muscular problem and that by the time the 23rd came, he didn't even think Jimmy would need to see him.

He started going to physio twice a week for 2 weeks and then he did a business trip up to the Eastern Cape when he was in serious pain.  On the Sunday after his return I had to phone our GP and ask him to please do something for Jimmy's pain.  He came around to our home and gave Jimmy a pethidine injection and agreed that he would have a word with the specialist on Monday as he said this had all been going on too long now.  I managed to convince Jimmy to stay home on the Monday to try and rest his back but on Monday morning we tried for about 40 minutes and could not get him out of bed  Each time he moved different parts of his body was going into spasm.  I phoned our GP's rooms again and told the receptionist what was happening.  Later that morning the specialist's rooms phoned to say that we needed to have an MRI done today.  She explained that the specialist was in theatre for the day but once we were done, we should come up to his rooms and she would see if he could pop up between operations.

This he did and took one look at the MRI results and diagnosed a fractured vertebra and basically told us that unless Jimmy had fallen off a roof or fallen out a tree it was not something that just happened easily and sent us off for another batch of blood tests, rattling off a list of possibilities including bone marrow cancer.

I remember coming home and saying to Jimmy, "How are these specialists these days, just throwing cancer in with the list of possible problems?"