Side effects and more

So I’m getting super fed up now of all this disease. It’s so hard to keep patient and I’m starting to fly off the handle at the simplest of things.

My last course of chemo really knackered me out. My hemoglobin dropped super low so on Wednesday I had a blood transfusion. It took forever. 3 pints of blood each take 3 hours and then there is the saline in between to wash out the vein. I didn’t leave the clinic till 10 at night.  My blood pressure and temperature was taken every half an hour so I couldn’t sleep in between much either.  I feel better for it today though less tired and weak. Before that I couldn’t make it up my stairs without stopping out of breath.

My tummy (as opposed to my stomach) is constantly hurting especially in the lower region. Another side effect of chemo, cortisone and other tablets that aren’t meant for the healthy human body.  I have reduced cortisone though to 1.5mg per day which is great for me as soon I am hoping to stop them all together, which for me would be like I’m actually better. I’m 1.5mg away and MRI from being better.

My hair is sprouting but it’s like a month for a tiny tiny bit of growth. I do hope it grows. The part where I didn’t have radiotherapy is growing so I have to keep shaving it as its on the lower back of my head.

Being a mum with melanoma is really hard. Last year I wasn’t able to look after my son properly as my right arm was operated on.  My son realized I was poorly and started to come to me less and less. But he is what kept me going every day after my radiotherapy when I picked up from school.  This year it’s worse. exhaustion, lack of strength I can’t carry him down our stairs or up them. Can’t sit on the floor to play with him (can’t get up again) so my darling husband has been working his butt off really looking after us both. My son rarely comes to me cause he senses I’m not well enough.  I haven’t been able to drop him off at school or pick him up as much as I would have liked so he’s super close to his Nana and his Dad but I feel like not me. It’s hard.   Now that I am getting stronger though I plan to bring him home earlier from school and hopefully re bond.

I just want to be free of this disease. I’m so fed up of being sick and really cannot wait till I am better. I guess I’ll never quite be the old me again. Life threatening diseases have that side effect on people I think. That’s the only good thing. You appreciate life more.

 

Getting better

How do you know if you are getting better when you have something like brain tumours?  You cant see it getting better like a scab on your knee! No healing bones, no disappearing bruises.  So its hard to feel like you are getting better when you aren’t sure if you are getting better, even though you look like you are better and people say you are getting better.   I feel like a ticking time bomb. I mean I have these tumours in my head and I don’t know what they are up to in there. Are they dead? Are they growing? Shrinking… having a party? I don’t know. Very frustrating.

I feel better some days. My legs need replacing though.  ha they are super lazy and weak and its annoying cause its probably a combination of the extra weight, the cortisone and the stupid feckin brain tumours. I even manage to exercise with a special trainer 3 times a week to try build up energy, loose weight and strengthen my legs.  So that must count for better.

Then there are days when getting out of bed is so hard I hate it.  But my son is shouting muuuuuuuuuuum lol so there’s my motivation to get up. Does that mean I’m not better?  I’d like to think not.  But that’s just it with cancer, you don’t know. 

Got a bone scan booked for next month. I start my chemo course again tomorrow for one week and then I have to have a blood transfusion cause my hemoglobin is low.  How rubbish is that.  I don’t want someone else’s blood in me.  What if it’s not clean? Sure they are so many tests done etc but you hear some horror stories..  Then again, they may give me this super blood, that will clean out my system.  That’s a better thought eh.

Tried the ozone therapy yesterday. Its like a very hot steam room thingy. It will be good to clear out my system of toxins. That will help me get better too. So I’m going for more of them.

In the meantime, I sit home alone most days apart from training days which are also injection days wondering if I am better yet. Wondering when I will be able to walk up stairs easily, not have to use the disabled toilet cause I cant stand up off a normal one as legs aren’t strong enough, wondering if I can pick my son up from school this day or will I be to exhausted from doing virtually nothing all day and then tell myself I’m better.

But I have good days, thank god and those are the days I know I’m better.  Those are the days I hope I am better.  Positive affirmations. Positive thoughts.  Don’t come easy these days.  But I’m trying my best.

Life is too short

My sister, me and friend

I’m upset cause a fellow melanoma fighter lost his fight with melanoma.  He fought hard and was a true inspiration.  I didn’t know him personally but its still hard to hear news like that.

Life is too short.  Skin cancer is a terrible terrible disease so please those of you who sunbathe be careful and avoid the sunbeds.  Its not always sun related either so check your body regularly for any changes in moles. Its VERY important.  Life or death important.

I have lots of supplements now, turns out I have super low iron so I have to take Foliron and Folic acid, B12 injections 3 times a week, B6 complex, fish oils, er stomach tablets and not forgetting my cortisones. haha I’m a walking chemist.   I’ve had to stop training due to feeling so weak and tired but once the new supplements kick in I can start training again.

In the meantime its couch potato and the ocassional walk with my mum down the harbour to keep the cobwebs away lol

Hope you are well..

Road to recovery

Its quite a long one.  You get sick, you get diagnosed, you get treatment then you need to start getting better. Everything changes about you.

My legs are still weak and its frustrating getting up off chairs which sometimes cause me headaches and dizziness so I have to do things slowly.  I darent squat cause I’d never get back up again but I am able to get up off the floor now by myself which is a bonus.   My head is bald apart from a few stubly bits as it appears the chemo tablets made what little had grown fall out.

The doctor prescribed me some stronger anti emetics so nausea stopped and I was able to eat normally again which was fab.  I am off them now for a three week break.

Tomorrow I am having an ultra sound scan to my armpit area as I have a sore bit there which could be scar tissue but its best to get it check out and I a also having my follow up MRI too.

Fingers and toes crossed for good news.

Chemo sucks

So I started my chemotherapy tablets on Tuesday, then went off to Physio.  As i’ve taken them before I thought nothing of it really as I’ve had no problems.   But this time as they are a higher dose they did not agree with me and there I was sitting at the physio place feeling ok one minute I was throwing up the next.  4 times in his office.  Managed to get some physio done though thankfully.  
Mum came to pick me up then we held up the traffic at traffic lights of all places as I was hanging out the car being sick again.  Trust me.  Made it home and sat in front of the tv with a bucket for the rest of the day.     What a rotten day that was.  But its probably cause I had a sausage sarnie with ketchup for breakfast.

Yesterday I waited and ate a cup of chicken soup and some plain dried Cypriot roll buisquit things.  But an hour or two later the same thing happened. Only this time I was only sick 3 times and I was ok. 

Last night I was able to eat well though so it only appears to affect me in the morning! 

I’m off to ROCK FM this morning to do an interview.  I’m not eating till after I’ve finished so I’m hoping that will stop me from being sick. At least for as long as I’m there..  You can listen online if you like  by clicking on this link at 11am CY time. www.rockfmcyprus.com

I come off them on Saturday for three weeks, then on them for a week and so on for a while.. so guess what I’ll be doing next week!  EATING.. yay lol

Update

So been back in Cyprus a week and what have I been up to? Not a lot! lol

Have been spending lots of time with family as my brother is over till Monday.   Lots of family time and parents, or at our house.  Christian had party at school with his classmates and they took some lovely photos and made a booklet for us to keep for his birthday and then we went to a lovely restaurant in Paphos where I took a cake and we celebrated his and my dads birthday although the cake said 2 on it on Saturday. 🙂

After my headache scare and now being back on my corts I’m back to normal again. Thank god.  And I went to see the doctor on Friday and I am to start my chemo tablets next week I think. Also physiotherapy for my legs.   I can’t believe how weaker they are in comparison to before I left.  I can’t carry my son up and down our house stairs anymore Its impossible but he is much heavier lol. The other day he slipped and wanted me to carry him down the stairs so instead I sat down next to him and we came down them on our bum together.. haha

So all in all I am feeling good taking things easy but also trying to get out every day to walk.  Now that I feel better I am itching for a night out.  Wanted to have it on Friday but that was too soon out of the clinic.  Not sure If I will wait for my new MRI results or not that way I’ll have something to officially celebrate I hope.   Either way my I cant wait to go sing at my local karaoke bar.. and my legs really fancy a boogie..  from the knee up haha

Hope you are all well.

Home sweet home

There really is no place like home.  When you are happy, or sad, whatever state of mind home is where I always feel best. 

Arriving at the airport seeing my mum and dad was simply fab. Was nice to hear people speaking a language I could understand too!  When we got home I waited for my sister to pick up my son and come round.   It felt like a century.  lol  Christian ran straight to me and I had the nicest cuddles ever.  So snuggly.  I can’t believe how much he has grown and all the new words he has learned.  My family did a fine job looking after him.  

We have all settled back into our routine nicely and Christian bless him is clingy if wego to nanas he cuddles either his dad or me tight when its time to leavce leave to make surere we don’t leave him there . Bless him.

Health wise I feel great.  Tiredness is going, but my knees are weak but I plan to keep active so they don’t get lazy!   Hoping to see my oncologist next week to see what’s next. 

I’m just so happy to be home.  Hoping to have a night out soon to catch up with you all.  Nothing crazy..

Thank you to the Paphos community, friends, strangers, neighbours, websites, businesses and so many people for all your help in getting us to Germany and back again.  See you soon!

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