scanxiety …

… be gone!!

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After managing to convince myself that both my bone and lung metastases had progressed, my PET CT scan was good.

This is something that neither Dr. Shaheenah or I were expecting given the levels of pain I have been experiencing in my back, hips and legs over the past two weeks.

I cannot actually begin to tell you how relieved I was to walk into Dr Shaheenah’s office and see her smiling at me, always a good thing!!

Briefly, one of the bone metastases on my lower spine as completely resolved itself and the remaining metastases in my lungs and lymph nodes are all showing lower levels of activity. The only negative on the scan is that fact that I have developed a pleural effusion on my right lung. This is a collection of fluid that forms in the lining of the lung. Dr Shaheenah is not too concerned and thinks it may be linked to all the steroids I have had to take.

I will continue on with my current chemotherapy protocol of Navelbine and 5FU aka Sid for another two cycles and then, at the end of April, we will do another PET CT scan to assess progress.

Now on to other things …

Princess Fiona has now been replaced by Dr. Evil … the high doses of steroids that I have had to take over the last eight weeks have really taken their toll. I have turned into a giant puffball and am a dead ringer for Dr Evil. Aside to being swollen and puffy, I have experienced a large amount of muscle weakness, this is likely to be why I have been in so much pain. I struggle to stand up or stand for too long and walking even a short distance has become a problem – the wheelchair has had to make an appearance again but, hopefully this will not be for too long.

I have nearly weaned myself off the steroids but it is likely to take another three to four weeks before my body starts getting back to normal. Can’t even begin to tell you how much I am looking forward to that.

Whole brain radiation has probably been the hardest treatment I have done to date. The actual radiation was not difficult but the side-effects and the recovery has been incredibly hard and there have been a few times in the past few weeks when I’ve just wanted to give up but, luckily, I have had a project to focus on that has really helped take my mind off things now and again.

Project House Move …

Yep, we finally found a new home … a brand new home that suits our needs perfectly.

We have found a lovely, light, bright and airy single storey villa in Mirdif with a lovely private swimming pool. We are going to be moving on the 12th of April and it has been great to have something to keep me busy.

Moving into this villa will make my life so much easier as everything will be on one level and I won’t have to tackle the stairs anymore which have become a real problem for me.

I must admit that the actual move is filling me with a little trepidation but we have a good company coming in to pack up and unpack on the other side and both Jemma and Steve will be around to supervise. I plan to just direct from Command Central!!

We are all super-excited to be moving into such a lovely home and having a fresh start somewhere that will have have such a large impact on my quality of life.

Watch this space for photos once we are in and settled.

Always xx

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15 down …

… khallas, finito,  sephelile, klaar, finished!!

I’d be kidding myself if I said the last three weeks have been a walk in the park … in all honesty, this treatment is probably the toughest thing I have undergone since my diagnosis in 2014.

If you get tired, learn to rest, not quit (#SayQuotable)

Sometimes, when life is moving forward normally it’s almost easy to forget that I have a terminal illness but then, at times like these, I realise how sick I really am.

But …

I may be a little broken and battered but I am still standing!

It’s going to take around three weeks for the side effects to clear and I am really looking forward getting back to normal and life pre-steroids.

My radiation oncologist is confident that the treatment will be successful but we will only know how successful in six to eight weeks when I have another brain MRI. I’m thinking nothing but positive thoughts and not letting any scanxiety sneak in.

A big thank you needs to be said to the lovely Amanda, Jo and Raxa for getting me through the last three weeks, you ladies rock and I couldn’t have done it with out you.

There are a few photos at the end of this post to give you an idea of what radiation is all about.

I’m actually quite disappointed that I am not showing any signs of developing super powers yet … maybe they will still come.

Onwards and upwards xx

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10 down …

… 5 to go. I’m two thirds of the way through my whole brain radiation and the finish line is now firmly insight.

The last week in the swamp has been a very mixed one. I was hoping for an easier week with no chemo but unfortunately that did not happen. The side-effects from the radiation continue to kick my butt quite severely.

Early last week, I developed severe peripheral neuropathy (numbness, pins & needles & pain) on the left side of my face and the vision in my left eye deteriorated literally overnight. The neuropathy also spread quite rapidly to my left hand …surprised my iPhone is still in one piece as its spent more time on the floor than in my hand. Lastly, rather than walking, I have taken to lurching. Really not an attractive look!!

These symptoms resulted in a visit to the neurologist as both my oncologists were concerned that the sudden onset of the symptoms may signal a further spread of the metastases in the brain.

Now here comes the good news …

A CT scan showed that the 4 little beasts are stable, there is no further spread anywhere in the brain and the swelling of the brain is being well controlled by the steroids. The neurologist’s feeling is that my brain is just “pissed-off” and the peripheral neuropathy is it’s way of protesting.

More good news …

He prescribed some medication to help ease the peripheral neuropathy and said that it may also help with the steroid-related insomnia that I’ve been suffering from. I’ve started taking the medication on Wednesday night and last night I managed a full 8 hours of sleep. Absolute bonus as I haven’t slept more than 4 hours a night for the past 3 weeks. Long may it continue!

Not so great news …

My hair started falling out again yesterday in handfuls … I knew this was going to happen but was hoping to keep it for a little bit longer as I’ve been told that it can take between six and twelve months before it starts growing back after radiation.

Just hoping that it hangs in there for rest of this week to provide a little bit of scalp protection from the radiation and will then shave my head again next weekend.

I’ve always resisted getting a wig but think I might give-in and go and have a little fun choosing a new look that will get me through the next few months. Watch this space!!

I’m fully expecting the coming week to be a tough one as I am back on chemo on Sunday … but I can hope …

Always xx