The battle continues

So, recently lumps have appeared around my body, one on shoulder , two in right boob, one where my ribs are and one in my upper right bum cheek.  The one above shoulder needed removing as it was growing so I am currently waiting for the results.  They think its metastasis but we aren’t sure.

I’ve also been experiencing the worst stomach/tummy pains ever.  They have made me vomit on occasion too. So Wednesday I was checked in to the local general hospital where they gave me blood tests and a chest and abdomen CT scan and x-rays.  They said it may be crone’s disease, then that its an ulcer, then that its metastasis and that I will be needed intravenous chemo.  Needless to say I was devastated.   Then I checked out of the hospital and went to see my doctor who checked the CT and he said he said signs of a swollen bowl are visible and fluid in the gut.   So I am having some fluid drained to be sent off for testing to see if there actually is metastasis and also waiting for the biopsy of the lump results to see if that is metastasis too.  Talk about a difference in opinions.

My poor veins are all buggered, broke and none existent in my left arm and have that many holes I look like a junky lol   Now Im on some strong pain relief thank god and I’m on the waiting game.

So I can either have metastasis or not.. here’s hoping not.

Absolutely fed up but hopeful.

Thank you

Just a quick note to thank you all for your inspirational commnets and for willing me through this difficult journey. You make me want to be stronger.

I hope you and your families who may be fighting the same thing remain strong too.

Alethea x

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..

Dont drink and chemo

It was my birthday on the 22nd so I decided it was a good idea to go out and have some fun with my friends and husband.  It was a good night and I allowed myself a few vodka’s and coke.  I didnt get drunk and did quite a bit of dancing too!  And I was the last one standing everyone else went home to bed.. ha

Felt ok Saturday and Sunday but come Monday I was overcome with exhaution and could not get out of bed. Lucky it was bank holiday and hubby looked after Christian for me. Tuesday was the same I slept till 6pm! Most of the week continued with me sleeping.

I went to the doctors yesterday for a blood test, he said I may need a transfusion if low and has prescribed injections 3 times weekly which a nurse will come to. Vitamin supplements to help my nervous system.

Drinking did not help matters especially spirits so I wont be doing that again.   Cant cope with the tiredeness plus its not going to help me get better quicker.

I’ll stick to a glass of red wine.. but I’m off my next course now till the next time.

Feel like a beached whale!

So i’ve piled on the weight big time.  A whooping 89 kg – 14 stone.. only 6 kgs less than what I weighed when I gave birth to my son.  13 kgs more than what I normally weigh. (I think you get the picture now ha).. before you say its the least of my worries.. its not!

I have to say comfort food did taste nice whilst I was eating it but the extra weight on my knees and heart is not good. I feel so heavy all the time I get out of breath easily, walking up my house stairs is an effort, so may I suggest that you try not to eat crap when taking cortisone. The tablets alone bloat you and well the food just adds to it and the water retention.. arghhhhh

I am starting to train next week and go on a diet. I have never had to diet although I have had the atkins diet before for a couple of weeks. a few years back. But thats not much of a diet, its more like all you can eat meat! lol  Its the kind of diet that either works for you or doesnt and it did for me.  But they say a healthy anti cancer diet, is no sugar and no meat.   Got to have sugar in my tea but I’ll happily skip some meat for some healthy veg.  In fact I’ll do anything to get my old self back.  I tried to tie my straps on my shoes tonight by sitting at the edge of the bed but couldnt do it as my belly got in the way! So my husband had to. How bad is THAT.

Time for a change of lifestyle. Got to fight this stupid disease from every angle. I miss the old healthy me and well she’s not coming back unless I fight for her.

In the meantime.. here is what I look like with no hair.. not quite the yummy mummy image hahaha but its all part of the process. Watch this space for improvement. The only way is up.

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