Boo Boo

I made boo boo with my appointment for the MRI which is a day later than the appointment I had in my head.

So I will be heading off to Gent Wednesday the 03-02 a day later and the MRI is at 10:15 and the results at 13:30.

Puffiness!!

The steroids that are being prescribed during my recovery that help reduce the swelling and headaches have given me temporary diabetes.

During my hospital stay for the operation I was given insulin injections when the levels were too high.

Now I have to check my blood sugar four times daily and call the diabetic nurse at the end of each day and report the levels.

If they get too high, injections will be supplied to stabilize……

Apparently this is a common occurrence when on such steroids….. (Prednisone)

This normally corrects itself when the steroids are reduced in dosage or when weaned off. The weaning process started today and will last three weeks so here’s to getting my slender tones back.

I can tell you I will be very happy to say goodbye to all the fluid filled puffiness!!

Back, crack and sack!!

I was faced with the reality of my cancer diagnosis head on that I will admit made me shed a few tears.

The general fatigue and headaches I have associated with the radiotherapy. Friday night however I was watching TV in bed when I felt something fall on my cheeks and just brushed it off. It happened again so I turned on the bedside light and ran my fingers threw my hair and yes it came out in bundles.

I knew it was a possibility that this could happen although I kind of kidded myself that it would not as it did not with the chemotherapy two years ago.

John was snoring next to me so I woke him up to share my drama and emotions and I told him my hair has started to fall out. With his blood shot eyes and dreamy stare he asked me “how you know it is falling out.” So I ran my fingers through once more and I got an OH I SEE…..

I wiped away my tears and we rolled over and cuddled up and fell asleep…..with my last thoughts thinking I was going to wake with spitting out hair balls like the cats and with mohair covered cheeks!!

My eyes opened wide to the new day when the alarm sent out the call and to my surprise I had no hair covered pillow and had no feeling to throw up any balls of hair thankfully.

Saturday morning was spent in a chair covered in a bath sheet with John plugging in the shears for a number one buzz cut. I was surprised how gentle he was taking care running the shears over my scar and although we had silence between us something special happened spiritually.

I browsed down to the floor and could see John had piled my hair neatly into a tidy heap and my first thoughts were… oh shit I am going to be bald as a coot for my holiday in February!!

My hair comes out easily if I pull it and it seems to slowly thin each time I wash it in the shower. At least a number one hair cut easily washes away down the plug hole.

Looking in the mirror I am now faced head on with the ravages of treatment and this god awful disease. However I quickly pulled myself together and managed to persuade myself to think positively. Move along the pain and anger of the emotions as they are not worth it and I certainly do not want to hang around those feelings.

It will grow back and it is winter so I wear hats at the moment anyway so what’s the problem.

It is a kind of a shame I could not be more selective and choose the place of hair loss…would that not be great….I could think of a few other places it would have been welcome….a David Beckham would have been good….back, crack and sack!!! lol

What are my chances of long term survival

I found this interesting article about brain mets which has given me a bit more hope…because I fall under the single tumour that was operable…fingers crossed of course and with all your energy streaming my way!!

What Are My Chances of "Cure" with a metastasis to the brain?

Having a brain metastasis is a serious complication, but being in expert hands can increase your chances for survival.

Yes, many people will die from this progression of tumour. But it is also fair to say that people with lower grade tumours and those with fewer or solitary mets and those tumours can be completely removed, will usually live longer and have better quality of life.

I have patients alive five years later who had metastases.

There are nine important elements in predicting a successful result:

1. location and number of tumours
2. grade and type of tumour,
3. whether there are tumours in other areas of the body
4. your age
5. if the tumour developed while on or off chemotherapy
6. Amount of the tumour that can be removed by surgery (skill of the neurosurgeon).
7. The response of the tumour to the new therapy
8. Other medical conditions or complications
9. Your functional state before and after surgery.

Remember, no matter how severe the situation, no physician or anyone else can predict for the individual what will happen with treatment. We are accurate in predicting for populations of patients but never for the individual.

Satsuma’s or Clementine’s

The head pressure and headaches are under control thankfully and the tiredness is just fine with lots of cat naps.

Two more sessions to go and I am done with this step of the treatment and can finally recover and build back my energy and stamina.

Holding off on anything physical has been a great strain although I have been good and reframed. I am so looking forward to getting the all clear from Neurology to start building up activities.

The lack of exercise has created chicken legs and I cannot be having them as a permanent feature. My muscles have just wasted away and lost all tone but I can soon whip them back into shape.

Presently I am a good advert for Satsuma’s or Clementine’s as my face and neck are a lovely red, orange colour from the treatment. A bit of a sunburn effect going on…just feels like sunburn.

The operation site on the back of my head and neck was shaved prior to surgery and my neck part is not growing back yet….The other bits are stubbly which is a good sign…I think the treatment is having an effect on the hair growing.

I have lost 7 kilo’s in weight although when I look in the mirror it looks like I have piled on 7 kilo’s. The steroids have a nasty effect of holding onto fluid which hangs around my neck and face….lovely not…. looking forward to getting off those crappy tablets, ASAP.

So the next step will be to finish the last two zaps of radiotherapy and then I head off to Neurology on the 02-02-10. I have an MRI planned late morning and a visit with the Neurologist a little later in the afternoon for the results.

These scans and results are the worse part of the waiting game although I should be thankful that the results will be the same day as usually I have a few days waiting time in between.

Two and a half years ago when they said I had stage 4 bladder cancer and I did a search on the web…the results were very negative on outlook. I can only say that I have been so lucky to have great support on my side to beat the odds of 15% that were given to me.

The statistics are pointers only and outcome certainly depends on being your own health advocate and getting second opinions for the best treatment.

I am so happy I requested a second opinion in the very beginning as I believe I would not be here today with ought the more radical surgical option I chose to follow initially.

Each time the disease has gone metastic I have had incredible luck that it was operable and treatable….long may this be the case.

This meeting on the 02-02-10 with Neurology of course will be very important in deciding which path my future will follow.

I often get asked that I remain so calm and positive during these drama’s….to be honest I never really had a choice. To live and fight or to curl up and wither away…and the latter has never been an option for me.

Having a wonderful support network of friends and family have guided me during my moments that I needed lifting…and I thank you all so very much.

Five more to go!!

It has been a rough week and I am now feeling a little better and getting back to functioning instead of sleeping.

My first treatment last Friday slapped me left to right to my surprise, with incredible headaches and sickness.

I had a little relief using painkillers but paracetamol and ibuprofen just did not do it for me.

The Monday was a testing time as I was throwing up every opportunity and the assistant at the hospital made an appointment with the radiotherapist doctor.

She prescribed steroids for me and said that the treatment can bring back fluid to the brain causing my symptoms.

That afternoon after I took my first dose I had instant relief from the headaches and sickness.

Each day I have seen an improvement and I am more awake than asleep thankfully.

Just keeping it short as my vision is not optimal and will update more when my energy returns….

5 more treatments to go….Tomorrow - Friday, Monday-Wednesday- Thursday off- and finishing on Friday next week!!

Symptoms

I guess I should have started part two of my blog with this addition....I will chalk that one up to brain damage :-)

During the summer of 2009 the first signs and symptoms appeared.

I was under more stress than usual at work because it was the time of year colleagues were having summer holidays. I put down the light headaches and slight balance problems to overwork and extra stresses at work.

Later on in the autumn I had feelings of being pulled to the ground which was a weird sensation. I assumed they were all work stress related and hoped they would ease once my hours returned to normal.

The headaches only increased along with my balance and coordination issues. My energy levels and motivation alarmed me and finally I called my doctor for an appointment.

My blood was checked with no anomalies and after a series of neurology tests which I passed I was diagnosed with stress in my neck muscles and possible inner ear issues causing balance problems.

My doctor sent me to physiotherapy and after each session my symptoms increased and after three sessions I returned to my doctor.

Once again neurology tests were performed and no severe issues were noted except for my awkward walk. During this appointment my doctor called my Oncologist in Gent for advice and a CT scan was planned the following week.

The initial results of the CT scan were clear although a few days later I received a call from my Oncologist saying that the CT scan results had been checked by a second radiologist and damage was found in the Cerebellum.

An MRI scan was arranged the following day as this would give a more detailed view of the situation.

After a few days of nail biting my Oncologist confirmed that a 2cm mass had been found in the Cerebellum and an appointment was set up with Neurology.

I was planning on jetting off to Lanzarote a few days later and this unfortunately had to be cancelled on advice from Neurology as flying could be detrimental to my health.

As my neurology appointment was planned a week later I made great use of my week off from work to visit family back in the UK.

This trip did not turn out the way I had planned and after severe headaches I ended up being hospitalized for a night in the Hull Royal Infirmary.

An MRI revealed fluid on the brain and steroids were prescribed to reduce the swelling and control my symptoms.

Neurology wanted to remove the tumour and after a few discussions they understood my wishes to follow my treatment plan set up in Belgium.

I had to sign myself out of the hospital as they would not accept any responsibility for anything going wrong on my trip back home.

So my visit home was abruptly shortened and John and I returned back to Holland via Calais.

The neurology appointment confirmed all the details of the operation which was to be performed on the 16th of Dec 2009.

New drug of choice

The stiffness in my neck has worsened recently and paracetamol does not take the edge off anymore. It is difficult to turn my head left and right and to touch my chin to chest and I often have a sort stabbing pain in my neck.

I called the reception from the neurology department and my surgeon called me back to reassure me.

I was immediately calmed as he had such a gentle calming voice and said that I should only be concerned and get in touch with my doctor if I had a fever, nausea or severe headaches.

He explained that they had to split the cerebellum in two to access the tumour and that needs time to heal. The removal of the piece of scull to access the cerebellum which was glued back in place would also be the reason I am having a stiff neck.

This morning I replaced the paracetamol for ibuprofen and have much more pain relief and this is now my new drug of choice!!

The big freeze continues and the gritters are out in force today sprinkling the salt and I feel like the lucky one, wrapped up warm inside in my pyjamas and fleece dressing gown snuggling up with my cats.

Metastasis to Cerebellum

My stage IV bladder cancer now continues its journey with a metastasis to the Cerebellum which controls balance and coordination.

It has been a whirlwind of drama the last month although I am really grateful that the neurologist was able to operate and remove the tumour.

Getting home for Christmas after the operation meant a lot to me and it was a very special time.

During the early hours of Boxing Day morning John had to take me to the local hospital in Terneuzen because of severe pain in my legs. I had a pain killing injection which relieved the pain and then we returned home.

Exactly the same thing happened the following evening, as soon as I went to bed the pain began to overwhelm me and once more we returned to the hospital for another injection. The doctors were unable to explain the pain although assured me it had no connection to the recent brain surgery.

The following day I visited my own doctor and restless leg syndrome was diagnosed and medication prescribed. Luckily this syndrome disappeared as quickly as it came.

Yesterday’s appointment at radiology to make the mask was a swift procedure. I just had to lie down on a bench and a warm plastic sheet was placed over my face and neck.

Two assistants moulded the sheet around my face until it cooled which literally took a few minutes. I had a breathing hole for my mouth and I was told to remain still while they did a simulation.

They left the room and I could hear the machine making noises and I can only assume it was taking measurements. After five minutes they returned to the room and started marking areas on the mask. The mask was then removed and I was able to get up and go home.

My coordination and walking has improved dramatically although my neck remains stiff and headaches constant. Paracetamol takes the edge off and I have sleeping tablets at hand if necessary.

The support I have had from family, friends and colleagues has been wonderful and I appreciate that very much.

Friday will be my first radiotherapy treatment and before I know it the two weeks treatment will be over.

Happy New Year!!

Leigh