Friday, 11th November

Gosh....just looking back on my last blog I can't believe it was in September and I was celebrating Spring and the beautiful flowers that were in bloom in my garden.  Now we have stringent water restrictions due to the drought and the wind has been howling for the last few days which is drying my garden out terribly.  For my overseas friends this means no use of our irrigation system or even the hosepipe. I obviously understand the dire need to conserve water but feel very sad when I think about what my garden is going to look like by January as this is the Cape's windy season.

We are now full swing into final exams with Emma doing grade 11.  Another gosh.....one more year to go and that's the last of any school going kids for us.

Jimmy's health is still in a good place.  The script for his Thalidomide was sorted out and we will have no more waiting every 3 months.  Blood counts and platelets not 100% but Prof remains happy with these as they have stabilized and not dropping any lower.

I have decided to take a break from the blog until January next year.  Once we get over exams, Christmas and New Year are around the corner and Jimmy has been stable for a while now so not much to report on.  I mention this too as there has always been a little cause for concern when I haven't done a blog update in more than a month.  Of course should there be any change with Jimmy then I most definitely will be back.

So.....that leaves me to wish you and your loves ones a very Merry Christmas, happy holidays and everything of the very best to for the New Year.  And if you are travelling please take care.  This is my 3rd Christmas since I started the blog and I would also like to say thank you to all for your love and support throughout this journey.....it has and continues to mean so much to us.

Wednesday, 28th September

I always seem to get the urge to update the blog and then realise we are only a day or two away from Jimmy's monthly appointment with Prof.  So after being in 'blogging mood' on Wednesday  I decided to wait until this week.

We are almost in the last quarter of the year and it's that time when Jimmy is busy busy.  He has been away on business during the last two weeks and the week previous to this we spent 8 nights in the Kruger National Park.  Emma has finished exams and schools break up on Friday and I can't believe there is only one school term left of this year.  It doesn't even feel right thinking of going into 2017 yet but the reality of it is that it is just around the corner. This year and next have been and will continue to be bitter sweet as I am going through the motions of senior high school for the last time.  Emma does three days of job shadowing this week which she will be doing at Vincent Pallotti Hospital in the OT section.  I remember this so well with both Megan and Loren.  Megan came home after her stint and proceeded to announce that events co-ordinating was definitely not what she was going to do when she finished school and we had quite the opposite reaction from Loren who came home from job shadowing at a local primary school saying she was awe.  But then Loren has wanted to be a teacher since she was two bricks and a ticky high.

Jimmy saw Prof last Friday and there is nothing much to report on.  His full blood counts are all a little lower than normal but the good news is his platelets are at 165.  I haven't mentioned much about these of late but Prof is happy they have stabilised around here.  After his last appointment he went to get his Thalidomide but there was a problem with the medical aid so Anwar said he would ring us once the script is done.  It turns out that the script can only be authorised for 3 months at a time (and issued once a month) so Prof, apart from being away, has been trying to sort this out.  He originally got authorisation for 12 months and is now trying to resolve this from happening every 3 months.  I was a bit concerned that it has been a month now that Jimmy hasn't been on the maintenance medication (Thalidomide) but Prof would rather he miss a slightly longer time now and get it sorted than Jimmy being off it for a month every 3 months.  Jimmy is looking very well and the last of the side effects of the cortisone has also worn off now.  We were looking at some photos over the weekend and were quite shocked just how puffy Jimmy was, especially around his face.

I have been battling a Psoriasis flare since June.  Just when I thought is was subsiding the rash worsened and spread with avengance.  I have seen my Rheumatologist and the Dermatologist twice (they are working together on this) as well as 2 visits to my GP as I just could not bare it any longer. A combination of Methotrexate, Cortisone, Dovet which is a cream and an oil body wash seems to have done the trick as my skin is much less irritated and inflamed since last week.  Of course the most important thing to do here has been to lower my stress levels and I have also eliminated some possible trigger foods from my diet. 

Jimmy turned 52 on the 16th and we enjoyed a quiet dinner out.  We were supposed to be in Lutzville for the annual golf day but I wasn't feeling very well.  Jimmy's evening was made by them sending us a video of everyone singing happy birthday to him and we sadly also missed out on the birthday cake that Debbie so kindly organised as a surprise.  As I wrote in Jimmy's card.....his birthday each year is that special day in the year when I count my blessings for another year spent together.

Spring is finally here!  Well.....we were under this impression until Monday when the warmer days disappeared into thin air.  It was freezing and we had quite a bit of rain but by lunch time yesterday it started clearing and the sun is out again now.  Still some cooler temperatures for the next few day though.  I can't wait for summer so we can enjoy the beautiful Cape's balmy evenings and watch the sun go down from our veranda.  Best of all though is it means time for camping again.

Spring in my garden

We finally got to make use of our airline tickets which were originally booked for Jimmy's 50th birthday get away in Zimbabwe in 2014 which we had to cancel due to bad health.  We then changed these and our plan was to spend last December in Mozambique with the caravan but Malaria was a big issue so we cancelled again.  Anyway, they were put to good use.  Stan and Michelle came with us and it was an amazing trip, their first to the Kruger National Park and we also celebrated both their birthdays while we were there which was very special.  I can't remember what Michelle's game sighting birthday wish was but we were lucky enough to see the Big 5 in the first three hours that morning.  Two days later Stan's birthday wish was to see Wild Dog and sure enough this was the first sighting we had on that morning's game drive.  We spent our first night at Blyde River Canyon resort and did quite a lot of sight seeing on the way up including Pilgrim's Rest and Blyde River Canyon.  We then spent two nights at Satara, 2 nights at Letaba and one night each at Skukuza and Berg-en-Dal.

Thursday, 25th August

Just a quick update on Jimmy....

He went back to work on Monday but still very weak and his face was looking very hollow around his eyes so he popped in to see Dr Madurai on his way to work in the chemo clinic.  Dr checked his blood pressure and chest and said everything was fine but he brought Jimmy's monthly appointment with Prof Novitzky forward to yesterday instead of the end of the month for when it was scheduled.

Prof is also happy with Jimmy as well as the blood counts they did.  They discussed Jimmy starting Polygam again to boost his immune system and Prof has opted to keep this treatment as a last resort if Jimmy's immune system cannot fight infections.  He explained that he knows Jimmy has had an infection 4 or 5 times since October but he says there is a lot of it going around and Jimmy's contracting the infections is still on a relevant level to the general public.

He also said that we must bare in mind that previously Jimmy has always been admitted to high care when he has an infection where he receives stronger intravenous antibiotics which will work quicker compared to the 2 courses of oral antibiotics that he has now recently been on.  He is sure that by the end of this week Jimmy will be feeling his old self again.

Of course this is good news as there is always the lurking cancer thought in the back of our minds.  This has also put Jimmy at ease and his mood has definitely been more upbeat in the last 2 days.

Friday, 18th August

You would think that by now I would refrain from using the words "feeling much better and over the worst" in one sentence. 

I'm sure you can guess where today's blog is going.....Last Friday things were looking up.  We spent another weekend at home nursing our sinus infections and trying to get better after Jimmy had been home on Thursday and Friday.  By Sunday Jimmy was feeling worse again and although I was feeling only slightly under the weather I made an appointment for both of us to see our GP first thing on Monday morning.  The last thing I needed was for Jimmy to start recovering and I get worse only to re-infect him again.  The diagnoses was sino-bronchitis and a script for strong antibiotics for us both, this being Jimmy's second round, and Jimmy was booked off work up to and including today.

This is a nasty infection with a terrible cough which seems to be doing the rounds and so many people have mentioned that they have had the cough for up to a month already.  Yesterday we were both feeling much better and today neither of us have much energy again, the good old South African expression 'pap' sums it up so aptly.

The positive of this is that this is the first time since Jimmy was diagnosed that he has had an infection and not ended up in high care.  I have also realised that what I have thought all along is Jimmy's attitude to being in hospital by way of not eating etc has nothing to do with the taste of the food, which he says is so terrible, as well as being in hospital but rather how he deals with being sick or actually feels.  This nurse had to put up with him eating half a chicken breast, two squares of butternut and 5 peas at most!  So in the interim I had him drinking meal replacement shakes and thankfully his appetite has once again improved.

I saw the dermatologist on Monday and she has confirmed that I do have Psoriasis.  The rash on my back is still there but not as inflamed as it was.  I was supposed to go for the MRI on Tuesday but realised there was no way I would be able to lie in that tunnel and not cough.  I actually practiced in bed on Monday night :) so this has been rescheduled for tomorrow morning.

Jimmy was supposed to go up to Langebaan for the Sunshine Corner golf weekend and I was going to spend the weekend with my parents in Bredasdorp as it is my Mom's birthday on Sunday but we will spend another weekend at home, indoors and hopefully the extra few days of taking it easy will put us in good stead for everything to be back to normal on Monday.

Have a great weekend everyone.

Wednesday, 10th August

Yesterday was National Women's Day in SA so we enjoyed a public holiday.  Monday was a school holiday and with Jimmy being away from last Thursday till this Sunday passed, it feels more like we've had two weeks off and not just a day.  The sun is shining today and it's quite a bit warmer and I am now looking forward to Spring.  I have never been a Winter person and I am tired of having cold feet no matter how thick the socks are that I wear.

Jimmy had his monthly check up with Prof Novitzky on the 1st and everything is going very well with the Thalidomide maintenance treatment that he is on and thankfully no side effects to date. We unfortunately have not got to the bottom of the ankle debacle, Jimmy is still limping and lags behind us when we are walking and from time to time it is a bit swollen but Prof again said that he does not believe it is a side effect of the Thalidomide.  Fair enough but I do not believe it can be gout which started on the 25th of June.....it would have to be a marathon gout attack!  But then again Jimmy likes to go big.

Early last week Jimmy started with the sniffles and I was a bit concerned about him going to Jnb for work from Thursday to Sunday.  Apart from being away with a cold I have concerns about him even flying and being in a confined space with passengers who have colds and flu during our winter months. On Wednesday night his temp went up slightly but by Thursday morning it was down again. I tried to convince him to go see our GP before he left but he was adamant he would be fine so I sent him off with some over the counter flu meds and the thermometer and made him promise he would take his temperature 3 times a day and let me know how it was going. He got back on Sunday and still wasn't 100% and then on Monday morning his temperature spiked to almost 39 degrees.  Although I was very thankful that this didn't happen while he was in Jnb (can you imagine what it would be like with him being admitted to hospital in Jnb with no Prof Novitzky and me in CT?) my heart hit the ground.  He had only been discharged on the 27th of June from the last infection and I couldn't believe this was happening again.  I phoned the chemo clinic and Olivia said to bring him in straight away.

Dr Du Toit has left to follow a career in Haematology so we met the new doctor, Dr Madurai.  He looks more like a rugby player than a doctor and what a pleasure listening to him while he explains and asks questions and explains why he is asking and makes his diagnosis.  He assured us that he phoned Prof prior to us arriving and Prof told him that whenever Jimmy comes in with a temperature he ends up in high care for 2 weeks.  This also re-assured me as having a new doctor that not might have had time to read up on Jimmy's background made me nervous.  His diagnosis was a sinus infection and he said there was no need to be admitted.  He gave us a script for antibiotics and said that we should contact him if Jimmy's temperature goes up again.

So I started typing this on Wednesday and today is Friday...

Jimmy's temp has stabilised around 37.5 so we keeping an eye on this.  He hasn't been feeling very well at all and went into work on Wednesday but came home early and stayed home yesterday and today.  He is feeling much better this afternoon so I'm sure the antibiotics have kicked in now and he should be over the worst.  I just wish his cough would get better, it's a bad one and keeps him awake all night.....me too :(

Today is 7 weeks that I have had the most excruciating rash on my back.  I have tried everything to relieve it from aqueous cream, Mylocorte, Antihistamines and eventually I went to see our GP who said it was Psoriasis.  He prescribed Dovobet cream which seamed to relieve it slightly for the first three days and then it got even worse.  I was diagnosed with Psoriatic Arthritis and Fibromyalgia about 13 years ago and see Dr Gotlieb, who is my rheumatologist,  every 6 months unless I am having problems.  Apart from a slight flare up every now and then my arthritis is pretty much under control with the medication that I am on but I have been battling with backache for quite some time.  I can't say the same for the Fibromyalgia but I suppose we just learn to live with these problems when there are far more important things to see to.  The whole time that I have had the rash my fingers have been very achy.  When I saw Dr Gotlieb yesterday I explained to him that it feels like I have been hanging on a shower curtain rod for 8 hours, which he thought was quite a funny description but a good one.  He was horrified when he saw my back and can't believe that I have struggled with this for the last 7 weeks.  He confirmed the Psoriasis diagnoses and made an appointment for me to see a Dermatologist on Monday.  We then got to discussing my backache which is sore more often than it isn't.  I battle to sleep at night as I am aware of the pain which makes me tired, which makes my back even worse during the day because I haven't rested properly during the night.  He went back through my records and for 4 years now he has been giving me injections in my sacroiliac joints to relieve the pain whenever I see him.  I think we were both quite surprised to see that it has been 4 year already. 

So on Tuesday I am going for an MRI as Dr Gotlieb suspects I might have Spondyloarthritis.  Huh?? Thankfully he is a patient man and very kindly explained it to me.  Doctors classify people as having a certain type of spondyloarthritis according to the predominant disease feature.  If, as Dr Gotlieb suspects, the MRI show changes consistent with inflammation in the sacroiliac joints in the pelvis then my diagnoses would be Psoriatic Arthritis and Ankylosing Spondylitis.  He has already changed my medication from Nivaquine or Plasmoquine (which ever the pharmacist has in stock) to Methotrexate which will help for the psoriasis rash, I went for a whole lot of blood tests today and he has also given me Arcoxia which is a much stronger pain meds (which will also help with the Fibromyalgia) and half a cortisone tablet a day.  Things can only get better from here.

Oh and I almost forgot to mention that I have a sinus infection...tut tut

Friday, 22nd July

I'm very pleased to be able to say that my financial year ends for both my businesses are done and dusted and payments due have been forward dated to the relevant dates.....bleh!

This week has been a week of updating business web and face book pages and I have also spend some time sprucing up the blog.  You may have noticed a change in look as well as colour scheme.  My next goal is to start a crochet blog :)

I follow quite a number of blogs myself, mostly related to Multiple Myeloma but various other ones too.  I have always made it a habit to type the date as my post title, although many bloggers prefer to give their post a name....something relating to what they are going to blog about.  I tried this in the beginning but couldn't get my head around a nice catchy title so have stuck with the date all along.  The only down side of this is that if you look at my Blog Archive at the top of the right hand side column there is no reference in the way of a post title should you be wanting to go back and look or read something up on a particular post.  I find being able to do this very helpful with the blogs that I follow.  Of course most of you read my blog update and you're done, but for my fellow Multiple Myeloma/Cancer sufferers who follow my blog this could be very user unfriendly.  You may want to find the 60 days of daily posting relating to Jimmy's stem cell transplant for example.

For this reason one of the tabs under the main photo at the top of my blog is a Timeline tab.  If you click on and open this, there is an extensive list with dates in reverse order (latest on top) of any significant milestones we have crossed on this journey.  You are now able to check the date here of say the stem cell transplant and then find the posts using the same date in the Blog Archive.  I hope you will find this helpful.

Wishing you all a lovely weekend and if you're in Cape Town keep warm.....there is another cold front on its way.

Sunday, 10th July

I've been a bit slack at updating the blog since Jimmy was discharged from high care but I have been very busy positioned in my chair in front of the TV each night crocheting :)

Jimmy was discharged on Tuesday the 28th of June and he went back to work on Monday the 4th of July.  He really battled with gout.  Emma and I had to assist him getting around at home but by the Saturday he was hobbling around on his own.  He has been back at work for a week already and still limping as his right foot/ankle is still painful.  I always find it quite difficult to get out of Jimmy what kind of pain he is experiencing.  Even when his vertebra was completely compressed he would say his back is stiff! I keep telling him that I find it difficult to believe that he can have gout for, what by yesterday was, 2 weeks.  I did some research on Thalidomide and it turns out that one of the possible side effects is pain in the hands and feet.

Jimmy had his follow up appointment with Prof last Monday and he is happy with Jimmy's recovery.  I did not go with him but made him promise me he would tell Prof that he still can't put all his weight on his foot and is still in pain.  I know Jimmy....he would have grimaced and taken the pain to walk in there as if there is absolutely nothing wrong with him.  Prof doesn't feel that it is a side effect of the Thalidomide which is a good thing but still doesn't explain the continued pain. They did a full blood count at the chemo clinic prior to his appointment and all his blood counts have come up nicely as well as his platelets which are now standing at 178.  This is the highest they have been in a long time and very positive news as this means that the Thalidomide is not supressing his platelets which was Prof's biggest fear of putting him on Thalidomide in the first place.

It's funny how things go....it's always the side effects that we are most concerned about that end up being plain sailing but then something small will catch us unawares.  But I'm not complaining a we too have weathered this storm.  Oh and for anyone that bumps into Jimmy he will explain that he wasn't as bad as everyone thought he was and they only kept him in high care as a precautionary measure.

So much has happened since we raced back from the Kgalagadi and Jimmy's Mom passed away that I never even got to tell you about the amazing animal sightings we had.  Unfortunately there is something wrong with the memory card that I used and have not been able to download any of the photos but I have a few memories using my cell phone - apologies for the poor quality.

For my overseas friends to show where the Kgalagadi is in relation to

Cape Town

Our overnight stop on the banks of the Orange River, Kanoneiland.

We didn't even unhook the van for an early morning departure.

View of the sunset over the Orange River

from our site

Our home for the next 8 nights

Lion on a Giraffe kill

Hunting and eating is an exhausting business

One of our favourite breakfast stops

An inquisitive little visitor

This perfectly captures the Kgalagadi Transfrontier Park

One of many magnificent Weaver's nests

The day of our famous breakfast stop...Jimmy had just started skotteling the

bacon and eggs when we spotted a lion lying just to the right of the closest tree in

the background.

Tuesday, 28th June

If it's not one thing then it's the other....

Jimmy was discharged yesterday and is now recuperating at home.  But this was not without its dramas.  On Saturday he started with what felt like gout in his foot.  By evening he had a full blown gout attack in both his feet and right knee and was in so much pain he could not even change position in bed.  This of course led to his back muscles cramping up again and a very miserable patient.  I don't think the staff on duty have had much experience with gout in high care, which probably makes sense, but unfortunately they did not give him the treatment he needed fast enough.  They were giving him pain injections which should have been administered 6 hourly but they weren't having much effect so he was getting them 2 hourly.  The more we tried to tell them that he needed a voltaren injection they wanted to wait to see if he would get relief from the tramacet injections.  On Sunday morning after Dr Du Toit had seen Jimmy he prescribed the voltaren injection.  When I got there at 1:30pm Jimmy had still not had the injection.  When I asked about this they casually said they would phone the pharmacy to see if it was ready.  Jimmy got his injection and within 30 minutes, although still in pain, the throbbing has stopped.

So yesterday he got discharged but could still not walk due to gout.  We wheeled him to the car in a wheelchair and then Emma and I lifted him into the car.  Once home we had to support him and take as much weight off his feet as possible to get him into the house.  Last night he could still not walk to the toilet or the bedroom at bedtime.  The good news is that he is better today.  He still can't walk unassisted but he can at least move his feet without terrible pain.

And of course Jimmy lived up to being Jimmy and announced to me this morning that if his feet are better tomorrow he is going back to work.  His blood counts are all below normal and he really doesn't need a secondary infection so I had to convince him to take Prof's instructions seriously and go back to work on Monday which is when he has been booked off until.

His platelets have come up nicely again to 127 and we got the infection marker results back and these had dropped back down to 18 from 80 (10 being normal).

Friday, 24th June

Jimmy seemed a lot more positive today.  Prof saw him in the morning and Dr Du Toit did his rounds while I was there.

We had some more results back and Jimmy has an upper and lower respiratory infection which is a mixture of viral and bacterial.  They are going to repeat the infection markers again tomorrow to see how much change there is from the 80 and also do antibiotic saturation levels.  I presume this is to see if they can increase them or to see if they need to be increased.  His temp was slightly up today and his blood pressure has dropped a bit but generally Dr Du Toit is happy with Jimmy's progress.

Hopefully when I get there tomorrow he'll have the TV on.......then I will know for sure he is feeling better :)  Thanks very much for all your messages and support, I have passed them on to Jimmy and he is very grateful.

Thursday, 23rd June

Life is certainly never dull and as the years and months pass since Jimmy's diagnoses in April 2014 it becomes more of a realisation that things will never be normal again and we need to accept the new normal, some of us more than others.

Had I blogged on Monday or Tuesday it would have been in the tone of a very disgruntled carer looking after a cancer patient who is in complete denial of his situation.  I only wish Jimmy would accept the new normal...but I am feeling slightly more calm again now and not as angry with him.  An anger born out of my love for him.

Emma and I got back from our trip on Monday to find Jimmy at home sick with flu and a very chesty cough.  I was absolutely gob smacked and couldn't believe that we had spoken to each other a couple of times during the day while we were on route home and he never thought to mention this to me.  The first thing I did was get our flu meds out and dose him up and take his temperature.  It was 35.1 which is normal for him.  I then proceeded to blast him and ask how long he has been sick for and why he didn't make an appointment to see the Dr on Saturday instead of playing golf!!  I phoned our GP and made an appointment for 9:30 on Tuesday morning.  The Dr diagnosed rhino sinusitis, conjunctivitis and an upper respiratory tract infection and booked him off till Friday saying that if he gets worse or doesn't start feeling better then we need to come back immediately.  We came home with 5 different meds and proceeded to take Jimmy's temperature every hour.  By the evening his temperature was 36.something which for you and me is normal but already a bit higher than Jimmy's normal.  Also bear in mind that because of his weakened immune system we have to report to high care if his temperature reaches 38.  I endured a second night of no sleep, listening to his breathing and comparing each breath to the last and wondering of his chest was getting tighter and praying we caught this early enough and the antibiotics will kick in.  I took his temp at 8am on Wednesday morning and it was 37.3 and again at 9am and it had shot up to 38.5.  I phoned through to the chemo clinic and they said to bring him in straight away.  Jimmy was assessed by his haematologist who booked him straight into high care where he was put on a drip and intravenous antibiotics. 

They did bloods, chest x-rays and some cultures to identify the infection.  By last night Jimmy's temperature had stabilised at 37.6.  His blood counts are all down as well as his platelets which have dropped to 75.  His infection markers are quite high at 80 (normal is 10) so this is a definite indication that there is infection.  But I have to say that his symptoms were definitely not as bad as previous times when his blood pressure was low and he was short of breath. His chest x-rays came back not being very clear as there is quite a bit of damage from previous infections so they compared them to his last ones and we are relieved that we caught this pre-pneumonia and it is more than likely a bronchial infection.  They are concerned that he has a very bad cough and are not prepared to chance it that the infection gets worse so he will stay in high care until Monday on intravenous antibiotics.  Today Jimmy's temperature was back to 35.6 and they had him on a Nebuliser for a short while.

I have decided that I am going to enlist the help of a cancer support group representative (not quite sure what you call them) or hospice and get someone to sit down with Jimmy and explain to him that he has to listen to his body and take the necessary action when he is not well.  He has to accept that he has cancer and a compromised immune system and will never be normal again and that next time he has to be intubated and ventilated he might not be as lucky.  He needs to understand how these episodes affect everyone in his life and how much it is wearing me down.  His friends have spoken to him and God knows how many times I have spoken to him and each time he promises me he will change......  Yesterday morning he sat on our bed crying and apologising for not acting on this and for what he is putting us through again.  I know that Jimmy is scared.....once you have cancer it NEVER goes away.  It consumes your head almost 24/7, you never know what is going to happen when, you over analyse every new change or symptom and as a carer it is the same for me.  I believe Jimmy needs help to face these fears and accept the new normal and know that we all still believe he is a hero for being such a fighter and coming through this terrible disease as well as he has. That he will never be judged for saying that he feels tired.....He will always be my hero xx

Monday 13 June

We've seen Winter arrive since last I blogged....today especially is freezing and we're hoping the heavy rains that have been forecast will make their appearance as our dam levels are so low.  Snow has been reported in the Western and Eastern Cape as well as KZN and the Free State today.  Actually.....I think it's going to storm later because Jimmy fixed the kitchen light last week!

Jimmy has been travelling quite a bit, Monday to Friday, and only been home 1 week in the last 4 but he is good spirits.  We had our monthly appointment with Prof Novitzky on the 30th.  Jimmy still had the rash on his chest area and under his arms and after ruling our allergies Prof is convinced that it has to do with his auto immune disease which developed as a result of the stem cell transplant.  He doesn't want to put Jimmy on any more cortisone as he believes this had a big roll to play in Jimmy getting Pneumonia last year as a result of extended use of cortisone.  We are monitoring it at the moment and it does look like it has calmed down a bit.  He is also still battling with repeat eye infections but in the bigger picture it's not serious.  I have to share with you that Jimmy put the dog's eye drops in his eye on Saturday...thankfully we had no side effects like cocking his leg on the lounge suite ;)  We also got back some results - his platelets are sitting at 111 which is below the normal range again but this is to be expected as he is now completely off cortisone as well as the NPlate injections.  The only thing of significance with the liver function test results was that his immunoglobulins are low (these are your antibodies).  We are going to see how strong Jimmy is with winter here now and if he is too susceptible to infections then he will have a monthly infusion of antibodies.  The swelling in his legs and feet is much better and his body doesn't seem as stiff anymore either.  We also got back the M-protein results and these are still between 0% and 5% which is classed as remission.

The good news is that Jimmy has at long last started his Thalidomide maintenance treatment.  We are going into the 3rd week already and so far so good as he hasn't presented with any side effects.  He has even had a cold which did not develop into anything worse, which was a big relief.  I just have to keep reminding him to take his temperature once a day!  We see Prof on the 4th again for a routine checkup which won't be any great shakes.

And apart from this life has gone back pretty much to normal.  Emma is nearly finished writing her midyear exams, the last one being on Wednesday and I have also been helping out at the high school with some exam facilitating.  It was my birthday on Friday (21yrs + VAT) and we had a lovely family meal out.  Emma and I are going away for a few days on a girlie road trip and I am really looking forward to this.  I was very spoilt and got a Polar A360 fitness tracker for my birthday. 

And then tomorrow Ewen, Jimmy's Dad, leaves for the UK for 4 months.  He is going to spend some time with young Ewen who lives in Bourton-on-the-Water as well as take Isabel's ashes back to Scotland and go and visit their families.  I am really going to miss him xx

Monday, 16 May

The days seem to be intertwining into each other.  As each sun sets a new day dawns and I cannot keep my finger on the pulse.  I have a mangled memory of when I did what with frequent realisations that often something has not been done.  It is nearly 3 weeks since Jimmy's Mom passed away and yet it feels like yesterday.  Saturday will be a month since we left for the Kgalagadi and everything is a blur since then.  We lost a dear friend to a light aircraft crash last week and it seems that every other week we hear of another cancer diagnoses.  Megan has left and gone to Miami to do another contract on the Norwegian Cruise Lines and we are still waiting for Jimmy's various test results to come in.

Jimmy was away last week on business and he is away again this week.  The perfect opportunity for me to catch up on all the things I need to do but I feel like I don't know where to start.  Each little molehill looks like a mountain.  I feel like I have been swallowed up but I don't know what by. 

So when I get my groove back and become the organised person that I am again, I will definitely post some of the amazing wildlife photos I took and hopefully will also have something to report back on Jimmy's results and the way forward.

Sunday 1st May

We are all heart broken at the passing of Jimmy's mom, Isabel on Thursday night.  Her cancer diagnosis was a huge shock to us in March.  It was the last thing that any of us thought would happen after our last two years of ups and downs with Jimmy.  It is really is hard to believe that just more than a month later she is gone.

Mom was diagnosed with Carcinosarcoma of the Uterus which had already spread to her ovaries and lymph nodes in her stomach.  Mom had her first and only round of chemo on the 7th of April.  She was very weak for the 7 days after this but a week later she was feeling a bit stronger and eating better too.  She even started doing some knitting again and was much more talkative.

We left for the Kgalagadi on Friday the 22nd and on Tuesday Dad phoned to say that Mom wasn't very well.  In the early hours of Wednesday morning my dear friend Maureen picked them up to take mom through to hospital.  We waited to hear from the Doctor during the day on Wednesday and on Thursday morning we packed up and drove the 12 hours straight to the hospital.  Isabel passed away peacefully an hour an half later.

I would like to express my appreciation for all the beautiful messages and the support we have been given by family and friends.  Maureen, I don't know what we would have done without you, you have been a true angel.  Also a big thank you to my brother Guy who was travelling back from Namibia on a business trip.  We left the caravan in Van Rhynsdorp once it got dark and we hit the heavy rains on Thursday night and he picked the van up the next morning and brought it home for us. 

I unfortunately do not know all the names of Ewen and Isabel's friends, the knitting ladies and Methodist ladies as well as some of the neighbourhood friends Ewen has made when he takes Keira for a walk each evening as well as Ewen's hiking group who have been a wealth of support over the last month.  So many meals, a crochet blanket, a juicer and telephone calls....thank you very much.

I would also like to mention a special thought for young Ewen, Jimmy's brother, who is in the UK as well as Loren who is in Virginia.  I cannot imagine how difficult it must be for them not being with us during such a terribly painful and sad time.  A big thank you to Claire, Andy, Ray, Bernadette and Pam for comforting and being there for Ewen.  I also could not have asked for Loren to have a better host mother, thank you for supporting Loren and giving her all the love you do Danielle.

We count our blessings that Isabel did not suffer and she was so peaceful when she took her last breath, with Ewen at her side.

Friday 8th April

We are playing the waiting game again.....

Jimmy last saw Prof for his monthly check-up on 2nd of March and unfortunately we forgot to make his next monthly appointment.  Prof Novitzky has also been overseas for 2 weeks so now we are waiting to hear when they can fit Jimmy in.  At this last appointment they did bloods for the M-spike count to see if Jimmy's cancer numbers are still between 0 and 5 which they class as remission and we haven't had these results due to Prof being away.  We have also had no news on the motivation Prof was doing for Jimmy to start maintenance.  And lastly Jimmy has been complaining of stiff legs, knees and back which has gotten worse over the last few days.  At first I thought he was coming down with flu because this is how he usually starts it but it has been too long now.  We spoke to Sister Olivia yesterday and she told us that Jimmy's platelet counts have come up to a whopping 250 (normal is 150 - 400) and she suspects that they may have come up too much too quickly so he is going to stop the NPlate injections till Prof is back and they can access the situation.  It's wonderful news that his platelets have come up so nicely.  Jimmy is now also off Cortisone all together so they will also be monitoring his platelets now to see if they remain stable or start dropping again without Cortisone.  So in spite of the waiting it is good news all round.

We spent a lovely time camping at one of our favourite spots in Bonnievale over the Easter period. We had all the children with us for a few days except of course for Loren but it was good to have some family time together.  Unfortunately the weather wasn't the best.  We usually laze for hours in the river on our pool noodles and this time it was quite a bit colder so we only ventured down to the river bank once to sit in the warm sun.  We had 2 very windy days when I was thankful that we have a caravan.  The families camping in tents had a hard time with the wind and after some heavy downpours many of them were drying bedding and mattresses.  'Glamping' is just so much better ;)

A big congratulations to Megan and Cosmin who got engaged.  They are still on vacation between contracts so Megan was here for a bit and is now over in Romania spending a month with Cosmin and his family.  It is the Romanian custom to have a celebration but they haven't set a date for this yet.  Megs will be home at the end of the month for 2 weeks again before they meet up and join the Norwegian Cruise Line Escape which is the biggest and newest ship in the fleet.  They will be based in the USA and do various voyages from Miami up the East and West coat of the Caribbean.

And then on an extremely sad note, we have had some devastating news.  Jimmy's mom, Isabel, has been diagnosed with cancer.  We went with them yesterday for Isabel's appointment with a whole panel of specialist and she also started her first round of Chemo.  Her chemo is administered intravenously and she will have treatment once every 3 weeks over 6 cycles.  I will not go into details of her cancer as Ewen and Isabel are very private people and I would like to honour this but it is a very aggressive cancer which has metastasised.  We pray that Isabel doesn't have to suffer and that the side effects of the chemo are not too harsh.  We are blessed to have them living in their cottage on our property so we are nice and close but I am struggling to come to terms with the fact that we have been dealt two cancer blows in one household.

As I have said many times cancer is a journey likened to travelling a dirt road of which there will be many trips.   Isabel's diagnoses is another route on what is our journey, that we have not travelled before.

Sunday 13th March

I have been meaning to update the blog for a while now and now that I am I can't believe it's a month and a half since I last did.  By now, as I'm sure you are all aware, no news is good news.

The NPlate injections are going very well.  Jimmy is having them once a week on a Friday and has a full blood count done while he is there.  I don't know what the numbers are for this last Friday as Jimmy was away but the previous Friday's counts showed his platelets at 184 which was brilliant news.  They have with each passing week continued to climb and we are over the moon about this.  Normal range is 150 - 400 which means he is at long last in the normal range.  184 Is the highest they have been to date.  Jimmy also had his monthly appointment with Prof on the 2nd of March, the first one I did not go with him to.  I sent a list of questions which Jimmy was very good about working through.  Prof is happy with the results of the NPlate and has now officially started the motivation to the medical for Jimmy to start maintenance. 

On the 28th of March Loren left for the USA to start her year of Au pairing.  She flew to New York where they stayed in the res at St John's University for 4 nights doing various courses run by the Au Pair agency.  They finished this off with a tour of New York which she thoroughly enjoyed.  Her host mother, Danielle, has been absolutely amazing and gone out of her way to make Loren feel welcome and at home. When Loren arrived at St Johns there was a big hamper waiting for her on her bed full of lovely goodies which Danielle had purchased for her including a flask, a long sleeve T-shirt, a hoody and a carry bag.  As well as some vouchers for Starbucks coffee and she also paid the $50 for Loren's ticket to do the New York tour.  It snowed while she was in New York so we got lots of photos of Loren in the snow as well as a selfie with the Statue of Liberty in the background and Time Square etc.  On the Friday morning she travelled by bus from Oakdale to Stephens City, Virginia where she joined her host family.  I haven't had much contact with her since arriving apart from WhatsApp messages while she has settled in and started working but yesterday we had a 1 hour skype catch up.  It made me very happy to see that everything is going well and she loves the family that she is working for.  The twins that she looks after are 2 years old and really cute, she says they have warmed to her really quickly.  Loren went on to explain how much of her money she is going to send home to save and how much she is going to put aside to spend.  She has applied for her social security number and as soon as she received this she can get her USA driver's licence, a bank account and also join the local gym which she is looking forward to.  I almost feel like she has already grown up in the 2 weeks since she left.  I really miss her as she involved me a lot in her day to day life and when she wasn't here we spoke 2 or 3 times a day.  This has left a bit of an empty hole in my life but knowing she is happy makes me happy and it's not forever.

On the steps at St Johns University

Loren experiencing snow

In the meantime Megan has also arrived home for a 2 month vacation.  Loren and Megan were lucky enough to spend a week together here before Loren left so at least they got to see each other.  Megan is filling that hole that Loren has left to a certain degree at the moment but it is going to be terribly quiet once Megan leaves again.  Both Megan and Cosmin got positions back in CEI on the newest of the Norwegian Cruise Line ships, the Escape, for their next contract at the end of April so Megan is going over to Romania for 3 weeks to join Cosmin and meet his family and then she will be home for 10 days before she leaves for the new contract.

We enjoyed a family meal out on the day Megan arrived home....the only time

we will all be together for the next 2 years.

Megan and Loren.....sisters re-united

Megan and Emma....sisters re-united

We are all very proud of Emma who took part in her first Cape Town Cycle Tour last weekend.  After not being very well for 2 weeks and me worrying that Emma was going to do overdo things by taking part, Emma did very well to finish in 5 and half hours.

Emma stopping for a banana and some Energade where

we were waiting for her in Noordhoek.

I am proud to report that I have started running again.  I was running 5km a day when Jimmy was diagnosed in April 2014 and this all went by the wayside.  When I was eventually able to start again and really felt like it was something that I had to do for myself I felt too bad exercising while Jimmy was so weak, confined to home and couldn't partake in any of the sports he used to play.  It's hard to believe how unfit I have become in the 2 years of doing no exercise but I am now in my 3rd week of running 3 times a week and improving all the time.....and it feels really good.  The stiff muscles are also feeling better :)