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.

 

 

MY WEDDING RENEWAL

Getting diagnosed with terminal cancer – everything changes in a minute. My big man and I had already decided to renew our wedding vows in 2015  (that would have made it 20 years marriage) but with my latest diagnoses – there was no time to wait.

So, we organised to renew our vows in Belfast where we got married in 1995.

 

Jim and I arriving at the church.

My daddy, Jim and I walking up the aisle - to be given back to Jim for the second time - Jim was so excited..

At the alter with all my family around me.

My wee flowers girls Carleen, Orlaith, Dervla and Aisling and page boy Cormac.

My very talented niece Dervla did the first reading perfectly.

Time to kiss the bride.

The ceremony was very special with only the closest family attending.

Next photo's are of sisters, brothers, cousins, auntie etc

The Morgan's cousins.

My Orlaith and cousin Aisiling

Party time

 

The theme of my wedding was to have the closest people around me and include them in my wedding.

So, I had a box of gifts to give to the kids and close family for always being there for me.

Fantastic giving out the presents.



 

I organised a "Irish Scramble" by getting all the guys to throw money in the bucket. We got over £50.

 

Then, I throw all the money onto the floor - the kids went wild as well as 2 parents who were not allowed to enter the scramble





First dance with the big man.



Ps   Don't you think, I have gorgeous family members???



　

My drug taking = steroids

What a journey – taking steroids. I was given steroids on the 1^st June – the day I was diagnose with brain cancer.

I never realise the side effects that I would go through:

1.    Weight gain: I put on over a stone in weight and I spend months trying to lose that stone.  The old saying is  “a minute of the lips and years on the belly”

2.   Puffiness: OMG look at my face – I look like a hamster. How can I ever leave the house??? Just don’t look at a mirror before you go out – or you will never go out. Lol

3.   Stretch marks: One day during my tour of Ireland – I woke up with my stomach swollen (the size of a 7 month pregnant women). I was convinced that I was pregnant – I made the Big man go to the chemist and get me a pregnant test. But the best thing is- I hadn’t had sex in months – I really thought it was an immaculate conception = no joking. Took the test in my tent – it was negative.

4.   Euphoric: I felt I could do anything – my family and friends were worried. I wanted to buy everything new for the house. My poor husband was pulling his hair out. I didn’t think anything could touch me – it was like, if I wanted it I got it.

5.   Mobility: My mobility has been reduced dramatically; I have to link my husband arm whilst walking. If I am doing shopping I hold onto the trolley for support or (I sit in it = it’s a bit sore on my arse) if I was in the town centre – I hold unto Orlaith pram for support, even though Orlaith is in nursery lol.

I am now getting rails installed in my staircase, my bathroom - because I can't no longer able get out of the bath on my own - the big man has to help me. Now told my the big man - just have a shower love.

6.   Sleep problems: One minute I am wake in the car, next I am snorting – then I would wake up ten minutes later and then its starts all over again.

7.   Depression: recently I started to wake up at 3 o clock in the morning and then I found it difficult to get back to sleep. I also started avoiding my mates and neighbours (avoiding people) and having no interests in my wee blog – so I have forced myself to update my wee journey.

Telling anyone you have depression is an extremely hard thing to do because depression has a stigma of the person being weak and I am certainly not weak.

So, the moral of steriods – do not take them – they have totally ruined my good looks and figure.

Part 3 

Dealing with terminal brian cancer

My bad news

The title of this post is “My bad new”.

It more to do with how this bad news was delivered, that I would like to share with you.

Being told I have secondary brain cancer on Saturday, 1 June 2013 in Hairymres in East Kilbride. I was told by a young female doctor.

Prior to the arrival of the doctor coming to up-date us on the results of the CT scan. I told my big man – Jim, if this doctor tells us bad news don’t break down in front of a stranger – we will deal with it, when they leave.

So, the female doctor and staff nurse comes into the room, heads down to update me on the CT scan results.

Well, I worked it out in seconds – simply by their body language – the news was bad. But how bad was the news going to be?

I had Brian Mets, which are legions (cancer) on the brain. My legions are wide spread around my brain – I have 10 legions on my brain.

Being ignorance I asked the doctor “can we operate on the tumor”. It’s not a tumor (one lump) its lots of lumps around my whole brain.So therefore, no operation can be done on the mets – its terminal cancer.

Then, Jim and I are told after its terminal cancer, we need to expect the following symptoms:

1.    Seizures

2.   Severe mood swings.

(My Big man laughed into himself and thought - “nothing new to me -my wife can swing moods in seconds and I love her fight/argument that follows). Lol

3.  L ost of co-ordination,, light headiness

4.   memory loss

5.   Can’t drive a car – ever again.

This negative information was given in just one breathe. So after dealing with this negative news, I asked if there is any positives information. Nothing,

I asked young doctor death “well, is that all – away you go?” Oh the surprise on her face!!

I think she expected to me to be wailing and screaming and to sedate me – not a chance – being Irish I took this news with dignity and strength of character – doctors don’t know everything.

I then proceed to sign myself out of hospital – couldn’t stand being in a ward looking at old sick people trying to jump out of beds. I was totally stress the night before watching then – any minute one of these old women are going to break their hip. Run away from sick people!! lol.

After I dismissed the doctor death – I felt good.

After the doctor left with her sidekick nurse - Jim and I just looked at each other and hugged. No tears just held each other.

The next stage for anyone who receives terminal news, is how do I cope?.

For me, is my wee girls!

What way is forward?         
 Acceptance and then come peacefulness and then positivity – that’s how I am going forward with my lovely wee family

So the first 2 weeks in June - I gave myself just 2 weeks, to get my affairs into order.

1.    WILL - Draw up a new will.

2.   KIDS -Who would look after my children in case Jim’s died?

3.   LAST RITES – received this sacrament from Father Ness – quite peaceful and comforting and not     frightening,

4.   CONFESSION – received the sacrament of reconciliation – delighted I took the step forward to confess my sins because it was 27 years since my last confession.

5.   PHOTOS - Started to get photos ready – to put pictures into collates for family. A professional photography (Gayle Cook) came to the house and took a collected of family photo’s free of charge – a special gift, that we could never afford to do – ever.

6.   HEAD STONE – I have designed my own head stone – quite a funny description on the head stone – you have to wait and see.

7.   CEMENTRY – I made a massive decisions to get bury in Belfast – irrelevant of Jim’s opinion. Now Jim wants to get buried on top – that leave one space for my twin sister Roisin. Then Jim says “I don’t want to be in the middle – I will end up poking your twin loll.

8.   HOSPICE – I have left instructions with the MacMillan nurse – that in case of the worse – don’t’ not resuscitate if my quality of life is so poor.

Jim and I have agreed everything, so I feel totally organized that I have got everything in place.