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Raisie Bay

cancer

CoppaFeel Breast Cancer Awareness

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October is Breast Cancer Awareness Month. When my friend was diagnosed with Breast Cancer 14 years ago I was stunned. She was the first person I’d ever heard of with Breast Cancer and sadly she lost her life within 5 years. Since then I’ve known another 3 friends with Breast Cancer. And several other friends with cancer. It’s such a dreadful disease.

Another of my friends passed away in August. She fought so hard, but sometimes it can be really agressive and the fighting is in vain. Other’s I know have beaten the cancer and live every day in hope that it doesn’t return.

What Can You Do?

Well, awareness is everything and knowing your own body is a big key. That way you can check regularly and notice if anything feels different, or wrong. If you are ever in doubt then do get checked out.

  • Change in skin texture e.g puckering or dimpling
  • Swelling in armpit or around collarbone
  • lumps and thickening
  • constant/unusual pain in breast or armpit
  • nipple discharge
  • sudden change in size or shape
  • nipple inversion and changes in direction
  • rash or crusting of, or around, nipple

Catching it early can be the key to a better recovery.

What is Coppafeel?

I’m an oldie, I get asked to go for mammograms as standard. But Breast cancer can happen to young people too. Coppafeel is a charity that raises breast cancer awareness amongst younger women.

I am an Avon Representative and this month we are selling a whole range of goodies which are including donations to the coppafeel charity. The Boob bag donation is 50% of the cost, the rest are 10%. If you are interested then please click through and take a look.

coppa feel collage of Avon Goodies

Disclosure: clicking the link will take you to an Avon Selling page.

blogtober2019 pumpkin

Blogtober Posts

Blogtober Linky

See Other bloggers Blogtober posts.

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At Least You Don’t Have Cancer

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photo of a hospital drip holder with medication bag possibly cancer treatment

I’ve had a few people say to me “at least you don’t have cancer” including my husband.

I’m so glad I don’t have cancer, it’s an evil disease that doesn’t care who it attacks, young or old. Nearly everyone knows someone with cancer. Getting a diagnosis feels like being given a death sentence. Even those that survive never really recover.

The treatment for cancer is brutal with many side effects. Sometimes it works, sometimes it doesn’t. It attacks different parts of the bodies so all cancers are different.

Cancer has taken far too many people too soon, destroying families. Survivors live with the knowledge that it can strike again at any time. Survivors also often suffer with Post Traumatic Stress Syndrome.

Cancer took my Mum, two of my sister-in-laws and my nephew. Cancer wrecked the first few years of my friend’s little boy’s life. I have friends with cancer. I hate cancer, I really do.

I’m glad I don’t have cancer.

At Least You Don’t Have Stiff Person Syndrome Plus PERM

I’ve never said to anyone ‘at least you don’t have Stiff Person Syndrome plus PERM.’ Probably because the answer would be like ‘huh?’

When you say cancer, everybody knows what you mean. They know that it’s awful and it can kill, and often does. They know how dreadful the treatments are. Most people know someone with cancer, it’s so common.

Stiff Person Syndrome plus PERM (SPS+) is incredibly rare. Less than one million people in the entire world have it. It can take around seven years to diagnose and most Doctors have never heard of it. It can also be a sign of cancer.

SPS+is so rare no-one knows how to treat it, not even the specialists. Drugs have been used and some found useful. Most drugs are not prescribed because the condition is so rare they are not registered for it.

The drugs I take for my SPS+ are classified so my partner has to go to a regular chemist to pick them up where they know him. If he has to go somewhere else he needs to show identification.

My drugs have many side effects that can make me extremely tired, sick and dizzy. They can also affect my heart and memory.

photo of my hand with a cannula inserted.

I go to hospital for treatment every month. Not in stages, but every month for two years now and probably for as long as I’m alive. I don’t get tests to see if it’s worked because it can’t cure me, just help me from getting worse, and maybe make life a little easier for me. The treatment can cause headaches, flushing, fever, chills, fatigue, nausea, diarrhea, blood pressure changes and tachycardia. It can also cause acute renal failure and thromboembolic events as well as aseptic meningitis. (which I’ve already had.)

I have pain all the time, I can’t walk without aid, and then only for very short periods. I get vertigo and have absence seizures. Most of the time I just want to sleep. I have spasms that can affect any part of my body and that can be so severe they break bones. (So far, just ribs for me.) The spasms can also affect internal organs, including my heart and lungs. Each severe spasm feels like I’m dying.

There is no cure, there is no proven treatment. Most people have never heard of it. I’m in pain constantly, I could die at any time and my medication has just as many side affects as the ailments it’s supposed to be treating.

Yes, I’m lucky I don’t have cancer.

And, you are so lucky you don’t have SPS+

Mix It Up Linky

Boobs and Me! Blogtober 2018

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I’ve decided to join in with Blogtober this year again, I missed a year last year but I did join in in 2016. With Blogtober you are given a prompt to write about each day during October. As it’s the 2nd of October I’m already a day late so I am combining two posts in one. The first prompt is All About Me and the second is Boobs, Breast Cancer Awareness.

All About Me

As I said, I’ve joined in Blogtober before, in 2016 and here is my All About Me post from then for comparison.

I’ve gained a couple of years since then, no surprise! But I’ve also had a few major changes. I got married!! So my surname has changed. I also had a new diagnosis for my illness. Back then I was diagnosed with Transverse Myelitis from which I had a good chance of recovery. A few months later my diagnosis was changed to Stiff Person Syndrome with PERM. This condition is progressive and can also be fatal. I’m working with my consultant on the right course of treatment, but it’s not easy with the condition being as rare as one in a million world wide. 

I’m a mum of five, two adults and three younger ones. My children all live at home still and we have a five bedroomed house in South Birmingham. Life is very chaotic at times! 

a selfie photo with me in the middle, the Little Man to my left and Boo hiding behind my shoulder.
A selfie of me and my two youngest

Raisie Bay

This blog was born in 2011, a year after my youngest child. Until then I’d blogged about him in another Blog, Baby Number Five. Prior to that I’d also blogged about my  journey to conceive my third daughter who is now 13. The blog spread over two years so you could say I’ve been blogging for 15 years now. However, even more impressively, my first ever blog was set up in 1998 and was all about my life as a university librarian. I had no blogging platform back then and had to write the whole site in HTML. 

Raisie Bay started out as a record of my younger kids life and that is still a major part of my blog. But as the kids get older, and seem less reluctant about appearing here, my blog has started recording more of my life in general. Basically, it’s changed from a Mummy blog to a lifestyle blog. My family is still at the heart of everything I write though.

Header form my blog I started in 2003!

Boobs

My type of Stiff Person Syndrome is often apparent in cancer patients. Generally, when the cancer is treated, then the Stiff Person Syndrome is treated too. This is why some forms of chemotherapy may be the answer to curing my condition. I have been tested for all types of cancer and so far I’m okay.

I am insured against Breast Cancer. I took out the insurance 12 years ago when a friend was diagnosed with an aggressive form of Breast cancer and we both had babies. Sadly, she passed away when her child was just five years old. Since then I have had five friends succumb to the same awful condition. They are still around and still fighting. 

I hate cancer, it’s a cruel disease that takes away so much. The sooner it is caught then the best chance there is of beating it though, so awareness is so important, as is checking yourself often. Find out more information on this here on the NHS site.

To find out more about Blogtober and see all the other bloggers taking part please click the button below or visit Big Family Organised Chaos

#Blogtober18

Is Time the Healer of Grief?

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They say time is a great healer.

When I was in the throws of my greatest grief I was told this by so many people.

I hated it.

I didn’t want to heal, I didn’t want time, or anything else to take away my grief, pain and sorrow were the only things I felt I had left. I needed to hurt, it felt right to hurt, it hurt to hurt too.

Grief is a pain like no other, it’s hard to explain until you feel it yourself.

I had felt grief before. My Daddy died when I was young, it was so hard, I missed him so much, I always expected him to come home again and couldn’t accept that he was gone. But I was too young to feel the pain.

I lost a really good friend when I was a teenager. I couldn’t believe that life could be so cruel, it was hard thinking that life could be over so quickly. I was sad, I was angry, but I wasn’t close enough to them to feel the pain.

I lost my Nan in the 90s. I was older with a family of my own. My Nan had meant everything to me, she was who I looked up to. I could always go and talk to her and tell her all my problems. My Nan knew everything, she was wise and kind. She was a lot less criticising than my mum and I always turned to her. Losing her was hard, a whole chunk of my life disappeared overnight. But my Nan lived to a good age and she was so frail and old and ready to leave this life behind. It felt like it was time and although I didn’t want to let her go, the pain I felt was selfish.

Then I lost my mum.

This is when I felt the pain.

My mum was everything to me, I’d already lost her once and wasn’t ready for her to go for good. We had a really serious falling out in 2000. On New Years Day of the new millennium. I hadn’t done anything wrong, she hadn’t done anything wrong, but our support lay in opposing ways and we had no choice but to part company. And not speak to each other. And not see each other. It was awful, life was awful, everything around me was collapsing and I no longer had my mum for support. We didn’t speak for five years.

Then, I was expecting my third child and I couldn’t bear the thought of her not knowing that she was going to be a grandma again. I had to contact her. It took nearly two years for us to rebuild our relationship. It was incredibly difficult. At first we had to meet in secret. Then we met at times we knew that other’s wouldn’t be around even though they now knew we were meeting. Then we started to get close again and she was falling in love with my little girl and her baby sister. It was so, so good having my mum back in my life.

Then she got sick and had to go to the hospital. Then they said it was Cancer and there was nothing they could do, it was already too late.

Two weeks.
Two weeks was all we had to say our goodbyes. It was so quick, so awful, so tragic, so heartbreaking.

My mum passed away on Christmas Day 2008, just two weeks after her diagnosis.

My world fell apart, I was just getting used to having her back in my life and she was cruelly taken from me again. I didn’t want to let her go, it hurt, it hurts so bad. Yes, I felt the pain of grief.

For so long that pain was what I grabbed. I had to feel it, pain was all that I had left. I couldn’t function, my family neglected, while I wallowed in my pain.

Then slowly, slowly, things started getting back to normal. Time was doing it’s thing and making life a little easier. Functioning became easier. I carried on without her.

Time was healing me.

Or was it? Even now, eight years later I can summon that exact same pain in an instant just thinking about my mum. I can cry when I remember her. The pain is there still like an arrow firmly embedded in my heart. This is grief, this is how the pain gets you. But, I can’t deny, it is easier to deal with now. I don’t let it consume me, I let it wash over me, I remember it like an old friend come to give me a suffocating, strangling hug, taking my breath away and trying to take me under. But it doesn’t because grief may always be there but time continues. And with time you learn how to deal with it all better and not consume you.

So time is not a great healer, it just gives you the perspective to deal with your pain better. Do you agree? Have you felt the pain? Does Time heal?

Adventures In Websterland

Last week my post Life is a Story was chosen as a Tuesday Treasure Winner, please take a look at all the lovely posts that link up each week, they really are treasures. And thank you to Angela from Aventures in Websterland for choosing my post as a winner.

Adventures In Websterland

Family – Word of the Week

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I don’t very often talk about my older children (adults) at their request, but this week has been as much about them so I’m choosing the word Family to include all my family.

This week my ex husband has been to visit. He lives in the South of France and we don’t get to see him often. Our children have been over to visit him many times in the years he’s lived there. A nice free holiday for them!

We all get on really well so it’s been okay having him around. He’s been staying at his brother’s and his brother and his wife came to visit us too. It feels like extended family, my life before and my life now. I was married for 10 years before we split but I only divorced him 11 years ago, 8 years after we split. They seem like big numbers don’t they? I’ve been with Graham, my current partner for 16 years now!

The older kids were excited about their Dad’s visit and have both spend a day with him as well as some fleeting visits he’s made to our home. My little ones have met him before so they are okay with having him around as is Graham. Some find it strange but you can be friends with your ex, honestly.
He’s not coming to our wedding though, that would be a little weird. (maybe I should have asked him to give me away, hahaha)

Another reason for his visit was to see his nephew, Gary, who unfortunately had the dreaded cancer and was losing his battle. Sadly, he did lose it the day my ex arrived in the country, so he never got to see him. Gary was the same age as me, may he rest in peace, free from his pain. I’m thinking of his mum, his wife and their children, such difficult times for them all.

No one is actually dead until they ripples they cause in the world die away – Terry Practhett

The Reading Residence