Lifestyle and Health

An early morning phone call usually harbours bad news and this morning was no exception. My friend Olive had passed away during the night.

I only met Olive three years ago but there are some people you click with and Olive and I clicked. We became great friends. We sat for hours putting the world to rights. Olive was eager for change in Northern Ireland and it was no coincidence that we met at the birth of NI21. She was hopeful that a new political party could help to break the cycle of sectarian voting here and encourage people to be proud  of their individual identies. She was bitterly disappointed that this did not materialise.

In May of 2015 she called me to say she was in hospital. Doctors were concerned and decided that the symptoms needed further investigation. When she called on a Sunday morning to say she was dropping over for a coffee I knew something was wrong. My worst fears were confirmed when she told me she had been diagnosed with pancreatic cancer.

Olive’s twitter bio says that she was ‘ a happy cheerful person.’ It was this disposition that kept her happy and positive throughout her illness. I never once heard her say why me? Never once heard her complain despite coping with amputations and numerous infections, not to mention the chemo and the stays in hospital. She was interested in all that was going on in the political scene and in the NHS ( she was a member of UNITE)  and she got out and about as much she could manage.

Olive was courageous in standing up before an audience in Stormont, telling her story and describing her symptoms so that a life might be saved. She also spoke on BBC Talkback, again to highlight the symptoms of pancreatic cancer.

Her birthday was a couple of weeks ago and in her words it was ‘the most wonderful day’ and she felt very happy.

We will miss you Olive, as will Gary who has been your partner, best friend and carer. My condolences to her mum Breda, her sister Roisin and her long time friend Paula and to the wide circle of friends who are now mourning her loss.

http://www.pancreaticcancer.org.uk/information-and-support/facts-about-pancreatic-cancer/signs-and-symptoms/

What makes a woman of mature age call for the imprisonment of a young 19 year old for having an abortion?

Why would she stand outside a Marie Stopes clinic berating those going inside?

Who has given her the right to become judge and jury as to how others choose to live?

Is there something in her past that has stripped away the compassion that one woman should feel towards another. Is that what she would want for a female relative who decided to go down that route?

Most women who choose to have an abortion, choose it because they do not want a pregnancy at that time, whatever the reason or the circumstance. Alright for Precious Life to say ‘ we’ll show you an alternative, We’ll help you through your pregnancy’ But parenthood is for life or at least for eighteen years. By that time I imagine PL will be long gone. We don’t know the circumstances of this particular conception. Incest, rape or the woman feeling she can’t cope. All reasons why she may not want to bring this foetus to full term and birth.

There are thousands of children today being born into a life of poverty, hunger and abuse. Why doesn’t Bernie and her cohorts pay attention to those children already born. Those children who are dying every day in huge numbers.  Leave those woman alone who have to make a difficult and I would imagine traumatic decision to have an abortion to be in control of  their own bodies.
The fact that we are still being bound by a law dating back to 1861 shows how backward looking our laws are in Northern Ireland. We need to put pressure on our new assembly to amend the abortion laws so that no more cases like this occur and then maybe women will be left in peace to make their own choice. I think it’s time for a referendum!

Chatter has gone global. I am delighted to publish Sarah Walsh’s courageous account of dealing with her disability. Written when she was just thirteen it shows a great maturity on her outlook on life. Ann Allan

My name is Sarah. I’m in a wheelchair and I’m 13. But that’s only the outside stuff, the obvious things. I have Irish heritage on my dad’s side, and Scottish on my mum’s side. I was born 30th May in Canberra. I have a thing called Ulrich Congenital Muscular Dystrophy which basically means weird skin, weak muscles, thin bones and this is all caused by a lack of collagen 6. But the weird thing is, I didn’t have that diagnosis until I was 7, so for 7 years of my life I was basically living a lie.
Over the years I’ve had many significant moments, all worthy of being in this speech. But there’s only one moment that really deserves to be said aloud. That moment is my first MD camp.
You see, in 2007 I had an operation to try to help me walk, but it had the opposite effect. It stopped me walking altogether. So, I kind of wasn’t myself for 2 years, saying things like “I hate myself” and apologising when anything happened that involved my wheelchair, as I felt it was my fault I was like this. Really, when I think about it, the only thing that ended up taking me out of that phase was this camp.
I can remember that I wasn’t too thrilled to be going. I don’t like being out of my comfort zone, and the idea of making new friends really scares me. Of course, seeing that nothing ever happens in Canberra, we had to go to Sydney for this camp Narrabeen Sports and Rec camp to be precise. The drive took at least 4 hours, so naturally I was bored out of my mind. When we arrived, you can imagine I was nervous as I just couldn’t imagine 30 kids in wheelchairs being in one spot all week. It would just be hectic and there wouldn’t be enough space. Or so I thought.
So we went to meet my carer,  Kelly,  who would help me with everything throughout the week (the carers were physiotherapy students). We went to our room and a few minutes later my roommate arrived. Her name was Bodene and her carer was Elise.  Bodene was 4 years older than me, but that didn’t stop us from clicking straight away. After we settled in and had the first awkward conversation and figured out that Bodene and I were completely obsessed with Twilight, we were told we had to go out and do the first activity.

We were put into groups and, because this camp was near Halloween, we made banners for our groups with Halloween kind of names. My group was called the “Bloodsucking Campers”. Unfortunately, Bodene and I weren’t in the same group but it was also a good thing. A little friendly competition never hurt anyone.
The rest of the week went by in the same way; spending time in our room getting to know each other, an activity, and back to the room partying and getting to know each other better. The more I got to know Bodene, the closer we got, and I found myself somehow forgiving myself for what happened on ’07.  Forgiving the surgeon and realising that I can be who I was; I just needed to understand that I won’t be the exact same, that things have changed. When I realised that, I was able to have more fun, throw more of me into the activities and not be so reserved.
My favourite thing on this camp had to be the Halloween party! It was awesome!! It was on Wednesday night, so I had basically fully become a child and was doing everything I wanted and doing it with a smile on my face a smile that almost never left my face, which hadn’t happened since the operation.  We all had face paint on, and it wasn’t the face paint you get at fetes, this was movie worthy face paint! Warts, blood and all! The hall was filled with all sorts of things: streamers, Halloween decorations and Halloween food,  all of which Bodene and I helped set up.

They also had karaoke. I was so happy there was karaoke because I’ve always wanted to do it and I said to Bodene, “Dude, we have to do that”, but of course she said no, because she was too chicken! So I went with Elise because I didn’t want to go up alone. Then the next few times I did it, Bodene did it with me! I remember saying goodbye on Friday was really hard. There were quite a few tears, but I knew I was coming back next year as I just had so much fun and, for the first time in ages, I was fully myself and felt as though I belonged somewhere.
This camp has helped shape my identity by making me realise that I’m not alone in what I’m going through. If I’m having a rough time, all I have to do is call my best friend and ask her for help seeing she’s already been through most of it.
This camp also shaped my identity by making me who I was when I was 10: a person who always smiles and makes pathetic jokes but still laughs like crazy at them. Without this camp, I would still hate myself, wishing I was “normal”. I’m perfect just as I am. And that’s the most important thing this camp has taught me.

Ullrich Congenital Muscular Dystrophy | MDA
https://www.mda.org/disease-name/ullrich-congenital-muscular-dystrophy
31 Mar 2015 – Children and adolescents with Ullrich congenital muscular dystrophy or Bethlem myopathy are invited to participate in a study of a daily …

March 2015:  Second lot of chemo was on Thursday p.m. I’d called into work for an hour in the morning and had a laugh, which was a real boost.

6 p.m. Chemo round 2. This time I used a hand warmer I’d got stashed away for footy spectating . Seemed to work as the nurse got in my vein first time. Big relief as I don’t want a PICC line fitted that needs to be regularly dressed by a nurse.

Asked about Monday’s blood test results. Apparently all my scores are those of a normal healthy person. Neutrophils too, which is a relief. These drastically drop during chemo so the higher they are to start with, the better. If they drop v low, you can end up in hospital just because of a sniffle. Came home, ate a bit of dinner. Not too bad.

Friday : Felt a bit more sick in the early hours but better after a morning nap. Even got across the threshold this time. Last time I didn’t go out of the house from the Thurs night until the Wed.
Walked up the street to collect my boys from their friends. My lovely friend had brought them home from school and fed them. Walked them back up the street for her to take them to a school disco. Then lovely friend 2 dropped them off. Then I took them up to MIL for a sleepover as hubby was out. Was all planned in case I felt as ill as the last time. Except I didn’t!

Saturday: Got up, not feeling so sick. Not got a bright red shiny face this morning like last time.

Phew!

Saturday was great. Pootled about in the car taking youngest to his friends to play. Even nipped into the Spar garage for stuff. Got my Neulasta injection from the District Nurse…once she’d worked out with her colleague how to open it. Had never seen one before. Yet it would be cheaper for the NHS than an admission to hospital for a few days. Should be given as standard.

Sunday:  BLEURGHHHH.  Neulasta side effects kicked in. Sore in every bone. From top of my spine right down to my shins. But that was it working, forcing new blood cell growth. Fuzzy headed all day. In fact felt like that for a few days. Luckily this coincided with a trip over by my parents .

I napped. I did nothing. They pottered about fixing and cleaning stuff. Things I hadn’t been up to doing in months what with surgeries etc. . It was brilliant to be looked after.

JUNE 2015: First three cycles of FEC went by without too much bother. In the week following chemo I took it easy and while I didn’t feel fantastic, I didn’t feel horrendous either.

Yes there were side effects but they were manageable.

The last three cycles I had were Docetaxol. I assumed that I’d (relatively) breeze through this too.

LOL

So…less nausea but I really thought I was going to die from the pain. Every single part of me hurt. No painkiller could touch it. Couldn’t even cry as it hurt to move my cheeks. Even the duvet hurt my legs. Three days like that. It might have been four. It’s very hazy. I spent Easter week in bed. Finally called my nurse for advice and she brought me in. After a quick blood test, I was given antibiotics and told my neutrophils were very very low, surprisingly. If I developed a temperature I had to go directly to A&E to get admitted.

I  took a couple of antibiotics over the day and sat watching my temp go up. And up. I figured the trip alone to A&E would make me worse as I couldn’t get downstairs again at that point. If I was admitted I’d get antibiotics anyway….so I hedged my bets. Very risky. But it was fine. My temp started to come down at 3am. The next day I felt like a different person.

Side effects, apart from the pain and need for antibiotics, were pretty spectacular. My hands swelled up and were fiery hot and red. After a few days of this the skin began to peel off in big strips. like sunburn peel but much, much bigger pieces.   Lovely.

Anyway scab handed I went to my next checkup, hoping I’d be too ill to go ahead with chemo. Apparently not, my blood levels were ok. However the consultant said he was reducing the chemo dose by 20 % due to my severe reaction. It had packed a pretty hard punch he said, then smiled. Yay!

Last 2 Docetaxols

Rough.

That’s all.

Had been given a co-codamol and brufen schedule to keep ahead of the pain. This helped a bit. Not totally. Mouth sores weren’t as bad, though I ended up with scabby peeling feet instead of scabby hands.

My parents came over to stay for a week each time, given how ill I’d been the last time. This was amazing. I could barely sit up in bed for a few days let alone eat or function. I let them pamper me and hid as best I could how unwell I was from the kids. Childhood comfort food like eggy bread, hit the spot

For the penultimate cycle I was offered tramadol to see if it helped. So I took one in a vain attempt to help pain wise. Never ever again.

I woke up crawling on the bathroom floor, trying to clean it with my hands. I was convinced I had weed all over the floor and bed (not true). When I came to enough to realise I was dreaming, I went back to bed. As I sat down I was pulled onto the bed by hundreds of pairs of hands that I started fighting off. All I remember after that is fighting demons and flying and more fighting.

Yeah.

As my Consultant said afterwards, You’ll never make a junkie.

Suede Head

JUNE 2015: Never fully lost it. Was never a shiny baldy. I kept a v fine layer of grey patchy fuzz. Lost eyebrows, eyelashes and everywhere else though. I am a dab hand at fake eyebrows now. The first pic is about 4 weeks after the last chemo.

The pic below is tonight. That is 6 weeks exactly since the last chemo.

It might be coming back with a lot of grey, but it is coming back.

To be continued.

https://www.breastcancercare.org.uk

First attempt at blogging. I’m new to all this. But hey ho, will give it a go. My aim is to write about life, right now.

A bit about me : Aged 43, wife, mum of two boys, charity worker and all round busy person. All very mundane.

Why I’m writing this? Well it’s a type of journal. A place to whinge and feel better. Whinge a little. Not too much. Promise.
To set the scene….

Sept 2014.

On my birthday I felt a lump. Yes, a lump. Bit of a rubbish birthday present. Didn’t tell anyone as my folks were over visiting. Plus nothing was actually wrong. Really.

After a few days it disappeared with some bruising, but I went to my Doctor anyway. He said to come back if in a few weeks,  if needed, which luckily I did as I wasn’t happy. He suggested I go to my local cancer charity who do mammograms as there was nothing he could refer me on for as ‘urgent’ . It would mean I wouldn’t get a scan til March 2015 at least , given the pressures on our NHS.
Totally had forgotten the decent health insurance we have via my husbands work which would have done it sooner, but I was seen within two weeks at the charity.
My mammogram was easy enough but something on this got me referred to the one stop breast clinic at the Regional Cancer Centre. The letter said four out of five such referrals were fine. I assumed I’d be one of the four.

December 2014

I spent a morning getting poked and prodded, more scans, an ultrasound and a biopsy. In between which I accidentally saw WAY too many elderly lady boobs in the waiting room, due to the ill-fitting gowns.

Then a meeting with the Consultant. The waiting room emptied. Husband kept saying ‘ it’ll be fine’. Last patient of the day. Consultant came in, I saw her expression….and I just knew.

Small tumour. .2cm
But…early stages. Type of cancer that responds to hormone treatment.
All in all, very treatable.

But still.
I’m not ill I thought.

JANUARY 30 2015

As surgery approached I began to panic about the general anaesthetic. Silly I know but I was convinced I wouldn’t wake up. Ridiculous anxiety .

Anyway, got to the day ward for 7am. On my own in a taxi, so the kids wouldn’t be disturbed or know anything was awry.
Starving.
Anyway met 2 chatty wonderful women , we collectively rallied each other’s spirits and moaned about being hungry.

There was no surgery in the morning due to theatres being inspected. While inconvenient, it was good as I knew they would be spotless and everyone would be on their toes.

9am. A trip for me and an older lady up to radiography to receive a tracer isotope. This was to enable the surgeon to locate and remove sentinel nodes -lead lymph nodes that can show if cancer has begun to spread.

How they do it it is, in hindsight pretty funny. But at the time it was excruciating.
A portly bow tied gent introduced himself with a radiographer.
After which , he injected the side of my nipple with radioactive gunge.
That wasn’t the worst. The worst bit was then having to massage my own boob, for a couple of minutes , under the watchful eye of said Doctor.

The scan after that , was pretty easy.

Got back to the ward and the other lady came and sat on my bed. She was a bit out of sorts bless her. She said “I’ve never done anything like that in front of a man. Never in all my puff” .

Time rolled on. We could smell the nurses lunch. Even the magazines we had between showed page after page of food. Humour got us through.
Then one by one people were wheeled off. I was the only one left. It was 4 p.m. I knew I had to recover enough by 8p.m. or I’d have to be admitted as the ward was only a day ward.

4.20p.m.. Finally wheeled down. Pretty panicky and my heart rate went up to 140. Last thing I remember is the rapid ‘ping ping ping’ of the monitor.

Woke up crying at 7p.m.. Has happened before with anaesthetic. But partly relief too. Made it down to the ward and forced the mandatory tea and toast down. Walked out the door, 8p.m. on the dot, having put a bit of make up on.
We picked up the kids from MILs, and that was that. Almost normality.

Well. I was told all along that I’d lose my hair. Never quite believed it. Joked that no doubt it would fall out for  Valentine’s day.

Day 11:  Had scalp tingling on day 11 after chemo. Having looked it up I knew it was a sign that the epirubicin (part of the FEC treatment) was working to blast all the fast dividing cells. Unfortunately some of the fastest cells are in your hair follicles.
Day 13:  Ran my hands through my hair. About 20 strands came out. Ran them through some more. More came out.
This happened through the day. Was surprised at how low I felt about it.
I know it’s temporary. I know I am choosing to have the treatment to ensure I have another 40 years hopefully.
But…..

Day 14:  A lot more. Going to have to arrange to collect the wig.
Going to have to tell the kids too.
Mood isn’t great tbh. But I’ll get there once I get my head round it. No pun intended.

Day 15: Run my fingers through and loads comes out. I definitely have less all over. Ordered a spare wig online. Hopefully will arrive in time.

Sunday: Out in absolute handfuls. Looks straggly. Pony tailed it all day to hide from the kids. This resulted into a third of said ponytail coming out when I took out the bobble.
Wishing I’d taken the plunge and got it short before it came to this. But that would have meant explaining things at school gates. I.e. Drastic haircut. Then sudden long hair lol.

Monday: Went to get my wig fitted. Booked myself into a Look Good Feel Better thing run at the Macmillan Centre. And a makeup demo. Mainly because you get freebie products but also shown how to draw on eyebrows. Which will be useful.

As I was collecting the wig, a teenage girl was coming out, with her mum and wigs. I will never complain about having to wear it. Imagine being 14 or so and having to wear one. Doesn’t bear thinking about.

So..kept it on from the fitting. Nipped round Sainsburys. Did school run. Nobody even noticed. Not even the kids. My spare cheaply wig from Annabelle”s Wigs online arrived today too. Only £26 and actually looks like the posh one.

Wednesday: Not much left. Straggly long bits and handfuls and handfuls out. I got a hairdresser to cut it v short. He says clippers would be too traumatic. After this I looked pretty good. Patchy but good . Wigs fitted better too.

Couple of days of jumping out of bed to put my hair on before my boys saw. Took it’s toll though. I had to tell them so they wouldn’t be upset if they came into our bed for cuddle. I said ” Mummy’s had some medicine like strong antibiotics. It’s made my hair fall out a lot, but it will grow back in May’. They accepted all this, didn’t ask why. No further questions. Told them their teachers knew, if they ever wanted to talk about it, but that it was just a side effect. Phew!

https://www.breastcancercare.org.uk

To be continued