AARGH!!!

I woke up this morning with a crazy urge to scream! Let’s just say I was pretty frustrated. I have had a rough few days on the 2nd chemo cycle. I’ve noticed a pattern start to emerge. By day 7 into the cycle, I start experiencing a chemo induced pleuritic chest pain and this pain gets progressively worse hitting a peak of sorts on day 9. When that happens, I take a break from the chemo, double up on my steroid and pain meds but they usually don’t provide much relief for a few days. That few days turned out to be day 5 post taking a break from the chemo. For this cycle, day 9 was the day the pain got really bad and I was up all night balling my eyes out. I counted 5 days from Wednesday which took me to yesterday, yesterday was supposed to be the day the “tide turned”, the day I woke up without the horrible chest pain. Guess what?! I woke up yesterday and the chest pain was gone! I was excited and let my friends and family who have been checking up on me that they could take a deep breath as I’ve got a bit of respite now.

I was so excited about feeling well again that I went to pick up a little tikes play kitchen for my little girl because every 18 month old loves pretend cooking right?! Well, that was supposed to be activity one of 5 on my list but it ended up being the only activity I could get done for the day. I managed to load the play kitchen in the car and get the car safely back to the house. Forgot unloading, the fatigue that hit me came out of nowhere! I barely made it to the living room before collapsing on the sofa. This was similar to the previous cycle though where the chest pain got replaced by fatigue so that in itself didn’t bother me too much mainly because I knew to expect it. I  wasn’t impressed at not being able to get my manicure done though, my nails are starting to scream for some TLC and I feel they deserve it before hand/foot syndrome creeps up on them and makes that impossible.

As tired as as I felt going to bed last night, I was still grateful that the chest pain was gone. I feel like I need to explain how bad the pain is although I’m not sure I can accurately describe what struggling to breath whilst feeling like you are carrying the heaviest piece of metal in the middle of your chest (thanks sternal mass!) coupled with a collapsed lung, pleural fluid and inflamed pleural feels like except it is all happening to you at the same time! Let’s just say it sucks (pardon my french!) and hurts like pretty bad.

Hence why I woke up this morning feeling like I needed to scream because the pain was back!!!! I was up pretty much all night in pain and it drove me crazy because there was NO NEED for the pain on the 6th day! I had a plan, day 5 was the day I get a break.Full blown chest pain on day 6 wasn’t PART OF THE PLAN. I think I was more frustrated with the randomness of the pain more than the discomfort of the pain. I spent half of the day feeling sorry for myself. Hubby spoke to oncologist who has got a few things we can do to help like increasing the dosage of the steroids further and a couple other meds we could try. He thinks I’m experiencing a really bad tumour flare reaction to the treatment but he hopes it would settle after a couple of cycles – I really hope so too!

***

Once the pain meds kicked in the afternoon, I managed to get my Mum to give me a hand getting the play kitchen out of the car and to set up. The pure joy on T’s face made it all worth. She made me a pretend sunny side egg complete with some strawberries and grapes! Someone is on Mummy’s case to eat her fruits and veggies 🙂 She must have played for about 4 hours non-stop with her new kitchen so that gave me so much joy that pushing myself to go pick it up yesterday helped in brightening her day.

***

Next was a visit from the homelier nurse to drain some of the fluid. Since taking time off, it’s easier to get the nurses to come twice a week usually on Tuesdays and Fridays. They tend to drain between 300-450cc each time. She was able to drain 450cc today. The hope is that as the new chemo starts to work, the quantity being drained each time starts to reduce and with that would come reduced frequency almost to the point where the fluid stops accumulating and we can actually take the chest tube out! That’s the plan people, we need to pray and get this chest tube already! I’m really hopeful this treatment works as expected and gets me to that point in the next couple of months.

***

On a slightly related note, I started keeping a gratitude journal two days ago. I realized that was so much setbacks and disappointments coming my way and I was starting to struggle to see beyond the challenges. My plan is to write three things I am grateful for everyday before I go to bed. It doesn’t matter how crappy my day is, if I can dig deep and think hard enough, I am bound to find at least three things to be grateful for. I will share the three things I am grateful for today here:

  1. I hated the ideas of being managed by the palliative home care team when I got referred to them. I have since appreciated the care they offer and today I am grateful for the opportunity to be able to stay home and have some come take out the fluid. As painful as the whole fluid draining process is, it would have been more painful to have to go to the hospital each time to have it drained.
  2. Grateful for the opportunity to be home and being able to spend a lot more time with my beautiful daughter. She’s growing up fast and slowly starting to give the cutest cuddles and hugs – in her own time but hugs and cuddles anyway. I even went ahead and put her hair into cute little braids today. Grateful for the opportunity to be here with her and make such beautiful memories.
  3. My dear friend Michelle wrote me a song! I mean she wrote the lyrics and the music to a song specifically for me. Let’s just saw this is the first time in 33 years that someone sat at a piano and played a song that was written specifically for the challenges I am going through. It was one of the sweetest acts of kindness that have ever been shown to me and I am grateful for the blessing of our dear friends who we love and appreciate loads.

***

Even though I woke up wanting to scream, I am going to bed feeling better and hoping tomorrow brings with it no pain, a lot of strength and even more things to be grateful for.

Good night everyone xxxx

 

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2 thoughts on “AARGH!!!

  1. Thank God for Acs of kindness and a great support system during hard times like this. I tried to imagine the pain and I doubt I got as far as how you actually feel before I hated the fact you had to go through all of this. Keeping a gratitude journal is a great idea, helps you keep your head above the water. I pray one day soon the chest tube will be out and you won’t have to rely on high doses of steroids for a bit of comfort. One day soon… This painful journey won’t be for nothing, there will be relief and a testimony. We are hopeful.

    Liked by 1 person

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