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.

 

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Last week of treatment

Hooray! I cant believe its finally here! Two more days and I am finished.  I cant believe how quickly time has passed and I can finally stop getting up at stupid o clock in the morning! Cant beleive I’m still complaining about that! ha   Most of the people I met on the bus finish this month too and we are all going to have a get together and have a meal and some wine to celebrate!  What a fine idea!

How was your weekend? I spent mine with my family at the Polis campsite.  Its the coolest place to be in the middle of a heatwave, even if I did not go for a swim the entire time.  The salt will not give my armpit a desirable effect. So I just stayed in the shade and listened to all the noisy idiots play music and scream obscenities till about 4 in the morning in my tent.  So much for a restful weekend!

Side effects have well and truly kicked in now. My arm is constantly stiff from where the muscle has contracted and the nerves too so even my wrist hurts and the pain in the morning and then after treatment is very bad.  My scar has opened up every so slightly too.  I have to be so careful as were I had an allergy to the tape I now have a very thin layer of skin. Walking around half naked seems to be the only option at the moment.   But before you go picturing that, I have one of those strapless beach dresses that I am able to cover up my dignity with and leave my sore bits out! ha  I do look an untidy mess though ha

I am putting a list of questions to ask the melanoma and chemo therapist specialist on Wednesday morning, and was wondering if you have any suggestions? Here is what I have so far:

  1. Why did I get melanoma, is my case definitely sun related?
  2. Why did it come back when I got the all clear last year?
  3. What can I do to help prevent it from returning?
  4. What are the chances of it coming back in my case?
  5. Can I ever sunbathe or go out in the sun again or must I hide from the sun for ever?
  6. Can I use fake tanning booths or sprays?
  7. Do I have metastatic melanoma?
  8. Why am I not having chemotherapy or interferon injections?
  9. How often will I need to have a CT scan?
  10. I would like more children, how will this effect my follow up treatments?
  11. What happens if I am pregnant and melanoma comes back?
  12. Please specify the stage of which I am in.

I dont want to know the survival rate and stats etc as if we all lived by that we’d all be dead now! ha

Here are some before and after images of my armpit..  my bald armpit! But if you are undergoing radiotherapy don’t worry as each person is different, no one on my bus has had this as bad as me. Plus its worth it!

One fried armpit for takeaway please..

I will update you after I see the doctor..

Thank you all for your support and for following my progress.

Alethea