2016/08/25

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.


2016/08/18

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.


2016/08/12

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