Sarcoma Awareness Month

So july is Sarcoma awareness month so I thought I’d do a little update.

If you have a lump that doesn’t go away, please get it checked. Sarcoma is so very rare that a GP may only come across it once in their career. It’s strange to think I’m lucky after having half of an arm removed, but I’m very glad it popped up where it did, it was seen to very quickly and diagnosed quite quickly after an MRI and biopsy. If it had been anywhere else it may have gone either undiagnosed or misdiagnosed for years.

It’s now almost 11 months since the amputation and life is mostly back to normal. Well a new normal for us! Most things can be accomplished single handed, so far only putting in earrings, closing a necklace and putting in a hair bobbin has defeated me 😂😂 I have also discovered the joy of terrifying poor children when they ask what’s wrong with the arm by telling them it was from a shark bite and handing them the arm!!!

Some after effects of chemo are popping up now like seriously depleted vision in less than 18 months, but for the most part it’s all good 😁

I have made some super friends along the way with Sarcoma, but I have also felt the sorrow of losing some of our warriors. It’s been a rocky road and the joy I feel when a fellow warrior has clear scans or gets good news lifts your heart, but equally the sorrow I feel when we lose a warrior is heart breaking.

If you would like to check out the very helpful and informative facebook page then click here.

Strong, amazing, beautiful, we are women

So as it’s international women’s day and I’m not working for once I decided to do a little blog post.

Women are amazing! Over the last few years when my chips have been down I have literally been held up, helped, minded, cheered up, made to laugh and loved by the most amazing people on the planet.

I can’t take away from the amazing guys too. If it weren’t for my rock, my husband Kev I don’t know how I’d manage. But today we are praising the women.

I am so lucky to come from a family of warriors, my amazing mother, super sisters, beautiful strong nieces, a super amazing warrior daughter, 2 best friends that are my other sister’s of my heart, fantastic aunts and cousins so the warrior runs in my blood. We face adversity head on. We deal with and then we cry. There is no shame in crying or being low, it’s part and parcel of life. Don’t be ashamed of it, do what you need to do to keep it together.

Then I have my sister’s from another mister. I have the best friends in the world for which I am forever thankful. They are my other family that I choose for myself.

My sisters from another mister #cult all have children on the autism spectrum but will do anything for each other, we listen, advise, laugh, cry rant and anything else we can do together. Nothing is too much. Who could ask for more in life!

So today take a minute to lift up a lovely lady. Life would be much better if we spent our time raising each other up rather than tearing each other down.

#internationalwomen’sday #gratitude

#loveeachother

My great news

So last week I got some amazing need, after a top to toe PET scan my results came back clear. Biggest sigh of relief in history!! I am now officially NED ( no evidence of disease). We did a little happy dance and rang everyone to tell them the good news 😍 Collecting the children from school that day was epic. Daniel was so happy he actually cried and Niamh was lost for words, which never happens. So I also went to see Robbie in 3D assist Tallaght IT. These guys are awesome. They 3D print arms for people. They have never done an adult arm before and they are getting a new 3d printer so they can produce one that’s long enough. Check out their page they do amazing things. I spent a long time asking them questions because it’s so fascinating. I opted for a bright pink one. If they don’t have pink I told them to surprise me. I had so many reasons to be happy the last couple of weeks. I have my newly adapted car, I am NED, I got my prosthetic arm, got to have my first night out since the operation which was a bit daunting but it was great fun and I’ve had lots of quality time with family and friends. Oh and my hairs really starting to come back! #lifeisgood

A little bit of rambling

So after a wild ride of Chemo and the operation life is starting to come back to normal.

I had a driving assessment and driving lessons with The Irish Wheelchair Association and I have been signed off as being capable to drive again. Waiting on the car adaptations then I’m back on the road.

We had a birthday in our house this week too. My beautiful girl turned 12! She had a party with lots of her friends so my house was filled full of screaming 12 year olds. Fill them full of pizza and sweets and everyone was happy

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This week was a good week. Hoping for the good weeks to continue with good results from next week’s PET scan.

We have battened down the hatches, moved the trampoline, moved the garden furniture and gotten as ready as we can for Ophelia. Let’s hope everyone keeps safe. Well done to Cork opening up public buildings to rough sleepers, it’s a pity the rest of the country doesn’t follow suit.

Keep safe x

My one handed Life!

So just over 4 weeks ago I had the op. My hand and half of my forearm was amputated. Myself and the fantastic team in Cappagh hospital decided this was the best course of action rather than trying salvage surgery to try and save part of my hand. The risk of it coming back was to high for me so we decided to take it all and go for clear margins.

I went in Wednesday morning and had the operation, spent the night in Hdu on the good drugs! Then moved to a normal ward on Thursday. I was doing so well I was allowed out on Friday and managed to collect my small people from school.

Daniels poor teacher though! He pulled me over to his teacher and said to him, look at my moms arm. The poor teacher was looking me straight in the eye telling me what a good few days Daniel had. Daniel wasn’t satisfied with that though and made him look at the arm, then he just had a look! Then he went back into his class to bring his SNA over to show her too. Luckily she knows me at this stage so she just looked lol

So there’s been some strange stuff that I never even thought about, like shaving under your arms, wrapping a towel around yourself and putting tooth paste on your tooth brush. But I managed them all! Who ever imagined I’d be so happy putting toothpaste on my toothbrush.

Not being able to drive is a nightmare. I’m so lucky with my family and friends I have never been stuck for getting anywhere. And poor Naomi my gorgeous niece now does the school runs! She brought Dan for a sneaky McDonald’s brekkie as traffic had been so bad another few minutes wouldn’t have mattered. He reckons it was the best day of his life. Poor Niamh was home sick with Me!

I’ve been trying to do pretty much everything, sometimes I manage on my own and sometimes I don’t. I’m getting there though!

I’ve been to prosthetics about getting my new arm. The first one will just be static but the end game is robo arm!! The strangest thing about having no hand is the phantom limb. So while you know you have no hand your brain hasn’t caught up and still thinks you have. You can “feel” your hand completely. 🖑. Also it kind of makes you unbalanced.

So this is my new arm sock. It will shrink down the remaining part of the arm and it will also hold on the prosthetic when it’s made. It’s amazing what they can do.

I would really like to thank every one for your support and well wishes, prayers and good thoughts from the start, it’s very much appreciated 😚😚😚😚

Let me tell you about chemo

There’s so much that you know about chemo that it goes without saying, even if like me, you have never been touched by cancer in your Family, or you have never seen someone go through chemo you still so much you know.

You loose your hair usually, you get nausea, you loose weight (unless you are me and put on half a stone) you are tired and very open to infection because you have no immune system.

So let me tell you about my experience with chemo. I have had 3 in patient chemo rounds, the first one was 24 hours on a chemo infusion, followed by 4 hours on another bag and 3 hours on another bag repeated 3 times. I’m a bit of a free spirit and I like to wander. I know St. Vincents hospital like the back of my hand now.

You need help and your people around you when you are having chemo. Its a bit depressing being stuck in the ward, you aren’t allowed to leave when you are hooked up in case you collapse or ya know go into a coma or Something! Because that can happen and only the fabulous oncology nurses are trained to deal with the chemo side effects. I am so lucky to have the family that I have. My mum and sisters and nieces and nephews kept me company while I was in hospital, while helping look after my small people and making sure the place was spotless when I came home from hospital. Then you have your two besties sneak you in a delicious Eddie rockets at 10pm on a Saturday night into the ward: )

The nurses loved my chemo shoes, they are the prettiest, sparkliest feel good red shoes a gal could ever have! My fabulous #amcult or for those of you that aren’t autism mammies, they are my friends that I have met through being a parent to a child with aut. You literally could not ask for a better group of people in your life. They went out and bought me beautiful shoes to make me smile while I was getting chemo. You just can’t be sad wearing sparkly shoes. They also set me up with a hamper of goodies and jammies for my hospital stay, which they gave to me at a surprise coffee morning that had been arranged. The rude words colouring book was so much fun, I do like, on occasion to use swear words. We all laugh when we are talking because we are like a cult, we all love the bones of eachother and would help another Autism parent out if we possibly can.

So Any way, there is things about chemo that no body tells you, like it really hurts before your hair falls out! Your hair follicles are sore, which is ok if it’s one of two that’s been too tight in your pony tail, but it’s not nice when it’s EVERY SINGLE ONE at the same time. My hairdresser niece put a full bottle of conditioner into my hair and massaged my scalp for ages. It was bliss!

They also never tell you that your hair all falls out in one go. I swear that happened. I don’t know why but I expected it to fall out bit by bit, well it started that way, then I had a shower, I went in with hair and came out bald!!! Weirdest experience of my life. I had only gotten my wig that morning, which I’m ever grateful for because I was God mother at the gorgeous Penny’s christening the next day! It would have shocked a lot of people if I rocked up bald!

I always thought I’d if i had cancer I would be traumatised by the loss of my hair. But I got it cut off to donate to the rapunzel foundation, they make wigs for kids with cancer. So I had almost waist length hair, I got it cut short and then it all fell out. I cried for about 15 minutes. My kids were shocked when they woke up the next morning and saw me with no hair.

Then the next thing is stomach upsets, so you go from having severe constipation to severe diarrhoea. So you know when your granny and your Mam complain about piles and you do an internal eye roll and say yeah hope you are ok. Well DON’T EVER do that again, it is agony. At one point the poor girl in the local chemist was told me hole is killing me give me something to make it better, while I was hanging over the counter having a hot flush. Not a pretty sight or a pretty conversation.

So there’s also the cravings, so you think of something and you need to have it, like you literally can’t cope I’d you don’t have it. I went of some food but was craving all kinds of sandwich fillings! I went off coffee and really liked strong tea instead.

Then there’s chemo brain, you are mid sentence and forget what you are saying. You feel like your brain is fogged up and even the simplest of tasks become like something from mastermind!

There’s other side effects like really sore and itchy eyes, again the hair follicles in your eyelashes become aggravated which makes your eyes so sore. I was at an eye appointment with my son’s eye consultant and asked him what was going on with me and he said it was a lesser known side effect and recommended some amazing soothing drops.

Then you get hearing issues, it’s like you are on a plane and your ears are blocked.

And the thing is I was one of the lucky ones. I felt mostly very well, I wasn’t too sick and reacted well to chemo. A lot of people aren’t so lucky. I had one infection just after the first round. The thermometer was almost attached to my ear. If you hit 38 degrees you go straight to hospital, I got to 37.9!! Some people spend most of their time in between sessions in hospital with infections so I was lucky .

You also need to take an injection 3 days post chemo that boosts your white blood cells in your bone marrow. This can cause side effects too, like horrendous bone pain. In all of your bones at the same time. No fun for anyone. Especially when you are in a school meeting with 2 teachers and an SNA. Sitting around seeing just how awesome your kid is at Braille. At this meeting I had my hat on, Daniel pulls it off, point at my head and days, eh look at my mom’s head, she has no hair she’s bald. My mom has no hair can you see it. It was one of those moments when it’s really not appropriate to laugh but I really wanted to. In fairness they dealt with it really well and answered with yes we know it’s mom’s medicine but it’s making her better. The he proceeds in lifting up my hand and pulls it over to each of them and makes them all look at “cancer hand”.

One of the best meetings I’ve ever had!!!

Again these are just my experiences of cbe No.

The words that change your life

When you find out you have cancer, everything changes.

At 37 I never expected to hear the words it’s malignant. Like seriously who gets hand cancer!! Apparently I do. After seeing a hand consultant (yes there is such a thing as a hand consultant) about a swelling in my hand, which had been x-rayed and just showed soft tissue swelling, no tumour as the x-Ray didn’t pick it up, I was sent for an MRI and very quickly afterwards a biopsy, we had named named the lump Hancer. The dr doing the biopsy told mr it would be a bit uncomfortable, well he lied, a lot! For 3 days afterwards it was agony. Apparently for most people it doesn’t hurt!

Not really thinking it would be malignant but deep down knowing it was. I was getting the kiddos ready for school when I got the call. My first reaction was to laugh. We were going on the trip of a lifetime the following day to the East coast of America on one of Dans adventures. I was thinking I still need to finish packing, I was supposed to be meeting my lovely Autism Mammy friends for brekkie and do a bit of last minute shopping. I didn’t have time for this!!

Then you need to tell people. I rang my lovely hubby in work, his response was I’ll be home soon and I’ll meet you in your mams. I asked him why he was coming home because I had loads to do. He must have thought I was nuts!! I brought the kids to school and then sat in the car park making calls to my sister’s. Then went to my mams, my oldest sister was already there and had told her. It’s horrible looking at every one being so upset and knowing you are the cause even though it’s not your fault!

Then we had to let the extended family know, my aunt’s and cousins knew I was getting a biopsy and were waiting on the results with me. 20 minutes after the phone calls the house was full. It was like someone had died but I was still standing there.

Then of course then the jokes started, in my family we deal with everything with a good dose of humour as well as crying! I rang two of my best friends and told them the news. One cursed a lot And hung up, the other told me she was handy if i wanted a visit. I nearly died laughing and she nearly passed out with mortification. Ya gotta love my support group. I rang my autism mammies and told them i coildnt make brekkie and they were gutted. By 11am it had already been a very long day! The thoughts of telling the kids was awful but they knew something was going on, so we had to tell them. We decided we would do it when we got home from our trip. But Niamh guessed while we we’re there. She really is a clever girl!

At this stage it was very surreal. Like it was happening outside of me. I had a very good idea before the biopsy confirmed that I had cancer, so I had a few weeks to come to terms with it.

So what do you do? You go home and you finish packing for your holiday. The nurse assured me that 2 weeks would make no difference in my treatment as they have to have a multi disciplinary meeting to decide on a treatment plan and that wouldnt happen until the following week. So off we went on our holidays. We went to Vegas first and renewed our vows while we were there. We even had a drunken Elvis do it! We saw the grand canyon which is amazing beyond words. We went to L.A. and say the Hollywood sign and then off to San Francisco and saw Fishemans wharf, the Golden gate bridge and Alcatraz. We had a ball even though we had this over us.

When they tell you that you have cancer, the amount of emotions going through your head is crazy. I’m looking at my smallies thinking this isnt fair, I need to be here for you. I’m looking at my family and friends and they are all so supportive and thinking I hate that im doing this to you and I’m looking at my husband thinking how will we get through this. But we are getting through it. We are laughing and crying and living life. Some days are horrible and some days are hilarious. It is like every other person out there. You have highs and lows and everything inbetween.

#dansadventures

#sarcoma

#amcult4life

A little bit about me

I have decided to write this blog because people keep telling me too. I’m not to sure if my crazy will translate to words without the actions to go along, but I will try 😆

It’s going to be one of a few things with Me, my family, special needs, my crazy friends,  travel, cancer and chemo or really just the randomness that comes into my head. And let me just warm you there is a lot of random stuff that pops into my head.

So these guys are my lovely family, we have Kev my hubby, who in fairness is laid back and chilled most of the time, and he just leaves me to my madness. Then we have these 2 gorgeous kiddos, Niamh and Daniel. They are two of the funniest, most off the wall kids I know and luckily for me, I gave birth to them!! This picture was taken at easter time at the Grand Canyon. It is one of the most breath taking places I have ever been. I was literally speechless and that really doesn’t happen often for me.

Sometimes in life when times are hard, and things are changing, you have to find a new way, so that’s what I am doing. They say writing it down is good for the soul, im going to test that out here 😀

#grandcanyon

#firsttimeblog

First blog post

This is your very first post. Click the Edit link to modify or delete it, or start a new post. If you like, use this post to tell readers why you started this blog and what you plan to do with it.