Brain Mets cont'd

　

My Medical Update

My last opportunity after the radiotherapy was the Lantern Trial - to see if this would prolong my life by using new drugs. I was told that there was 2 treatments available to me and it would be 50/50 chance of  getting either treatment A or B.

Treatment A
Herceptin plus capecitabine

Or

Treatment B
Lapatinib plus capecitabine

I asked the oncologist running the trial, what treatment would he want for his wife? His reply was treatment B. Guess what treatment I got? - Treatment A.

I knew deep down I wouldn't get the most successful drug  I wanted. But I accept the decision from the Trial because my faith is in God.

 

 

 

My tablets to keep me living

My favourite twin sister problems are real.

Misophonia

My twin Roisin really has a problem about different types of sounds. If you have read my earlier posts about my twin sister, you would read me slagging her off because she gets annoyed at sounds. I found out she suffers from misophonia. Maybe after reading this post you might even recognise that one of your family members could suffer from misophonia.

Misophonia, literally “hatred of sound", is a neurological disorder in which negative experiences (anger, flight, hatred, disgust) are triggered by specific sounds. The sounds can be loud or soft – definitely relates to my twin.

People who have misophonia are most commonly angered, and even enraged, by common ambient sounds, such as other people clipping their nails, brushing teeth, eating crushed ice, eating, breathing, sniffing, talking, sneezing, yawning, walking, chewing gum, laughing, snoring, typing on a keyboard, whistling or coughing.

My poor twin sister has suffered from this condition since early childhood.

My twin has misophonia and I have brain cancer – what a pair.

 

Can you spot the differences?

My Disability Badge

I am now a proud holder of a blue disability badge that I proudly show in the front of my car – I no longer drive, incase I take a seizure whilst driving - isn’t that. Terrible?

 

Jim said “thank god” because I was a bit of a boy racer but never with the kids in the car.

 

 



I had to get 2 bannisters installed to help me climb up the stairs - when my legs feel weak.

 

In the picture - is my gorgeous daughter Carleen (middle child)

 



 

Getting pushed around Ikea

My Radiotherapy treatment

 After my mastectomy, I had to go for radiotherapy treatment for 5 weeks, so that they could ensure they got all the cancer in my breast.

It turns out, that my heart was too near my breast bone. So my oncologist decided to give me radiotherapy for just 3 weeks. During the treatment I was sick constantly.

Each morning during the radiotherapy treatment, the nurses would ask “how are you this morning?” and I replied "I am being sick with this radiotherapy treatment".

Not one of the nurses who I told I am being sick reacted. It was on the very last day. I told the oncologist, I was being sick and then she replied "it could be cancer in the brain - so cassually.

 

Pictures of the burns from radiotherapy.

 

 

My question is? – “why did the nurses not react earlier??????

I got padded up in the morning and then off to work I went.

 

My next treatment of radiotherapy was for my brain. Unfortunately for me, other treatments for brain mets was not available to me because I had over 20 legions and they only operate on 3 or less. Just my "bad luck" one of the medical staff said.

So radiotherapy treatment is my first and last chance of securing a couple more months with my kids. Being given 2 months to live was due to the fact having radiotherapy on the brain. Their was a high possibility that my skull (cranium) could collapse and kill me within 2 months – I survived. WOW
 

I had to wear a fitted mask and lay extremely still during the lasers frying my brain.



 

My last day of radiotherapy, I headed straight over to St Mungo’s Academy , as the pupils and teachers planned a talent show to fund raise for me and my family. I done a wee turn on stage and was politely kicked off. Once I start talking, you can’t stop me.(lol). Thank you St Mungo’s Academy pupils and staff or all your good wishes and support.

 

 

Fighting Cancer 

 
 

Two weeks later after radiotherapy, my hair fell out for the second time. This time around, I was not wearing a wig or hats to hide. I just liked the natural bald look and secretly shocking people - that a women is walking about baldy.

 

My Bed Time Routine

No!   I am not going to tell you about my sex routine with the Big Man because Jim and I have lost the inclination. Thinking of going to the doctor for sex therapy counselling. (I am only joking or am I?)

On a more serious note, I go to bed and read my kindle and then turn out the light to sleep.

This is only the time, I allow my self to think of the implications of my death sentence.

My thoughts are, will Jim have enough money to never return to work again at his low paid job and simply retire and play golf and look after 3 kids properly?

Quietly lying beside Jim whilst he snores. I have a deep quiet cry for Orlaith because if I go within the two years – will she remember me. Because I can only remember starting Primary 1 and nothing else.

 

 

So I bargain with God to let me see Orlaith going into Primary 1 on her first day and I would be grateful. Then I bargain for just another year.

My Apologies

I have two apologies to make.

1^st apology:

In my last post, I proof read the post several times and still my Big man noticed all my poor grammar and spelling mistakes. I told him I can’t help it – I AM DYSLEXIC .

Would you believe, that my blog has been read by over 18,436 bloggers all round the world.

eg Palestine, Lebanon Malaysia, Ukraine, Nigeria, Moldova, Macao, Yemen and the rest of the other big countries in the world. I hope I am keeping you entertained.

My Steroids cont’d

There were more side effects, I left out in my last blog posted because I was too embarrassed to tell anyone.

Now I am ready to be slagged off - here goes:

Soon after I started taking the steroids there was a definite change in my personality.

The steroids were gradually increased from 2mg to 16mg a day. I was off my head – I had so much energy, I didn’t sleep.

Never take steroids if you can avoid it, because the journey I went through was hilarious, exhausting for the Big Man because he had to control my high spirits.

 

I had one Delusion.

I believed that I was picked to tell everyone through technology to pray and believe in the Holy Mary. I believe that the Holy Mary was going to visit (appear) to me in East Kilbride in my back garden.

I told Jim that the Holy Mary was going to appear to me and Jim said “OK love” patronizing b******d – He’ll see!

So, during my tour of Ireland, my last stop was visiting Knock. We hired a caravan for 3 nights. The first 2 days, I couldn’t leave the caravan because of extreme tiredness. So on the third day, I attend a mass for the anointment of the sick. . It was very emotional and also disappointing because I believed I would get a sign from the Holy Mary – nothing.

I was disillusioned and very disappointed and also it was the last day of taking steroids. I even looked at the photo’s to see if there were any orbs in the picture - nothing.