Where Have I Been?
So it's been a LONG while to say the least. I completely disappeared for many reasons. So much has happened since my last blog update and where I am right now. I don't really know where to begin but I'll try to make a brief summary of what has happened over the past couple of months.
October
I had just had my 6th chemo session and two days later it was my birthday. So I asked a couple of friends to go out for dinner. I didn't want it to be so formal, rather just a nice group of people enjoying some good (really good Indian food) and to celebrate everything and anything. I had the best night in a long time and some of my closest friends (both old and new) were there.
Everything since just went a bit crazy. I was finding it hard to communicate with my parents despite having tried several strategies. On top of that, I didn't feel like I was getting the support I needed from them. It was hard to say the least. It really brought me down. So far I'd been spending most of my days alone and I didn't see anything changing on their behalf. It was quite painful and lonely and I had a lot of time to think. I won't go into too much detail because this is after all, a summary :)
November
By now I was still feeling under the weather. I was getting weaker and weaker and my energy levels were dropping completely. At this point of my chemo schedule, I was suppose to go down to once every third week. But when we did a check up after the 3 week interval, the doctors noticed that my hip wasn't showing any signs of healing and my CRP had gone up again (it had decreased for a while.) I wasn't responding to treatment. The only good thing about this was that at least my hip wasn't getting any worse. But because of this we had to increase chemo again to every week for another three weeks with double the dose than originally planned. Above ALL of that however, the cortisone was killing me. I was taking 50mg a day (highest dosage you can take in a day) and I was feeling every side effect possible. I was distraught. My face was so swollen it had looked like I'd had an overdose of botox, or like someone just pumped air into my face. In fact, my entire body was swelling up and I felt more and more uncomfortable for everyday that went by. I couldn't breathe, I couldn't fit into my clothes, I couldn't sleep, and I was in a lot of pain, everywhere. By now I had also been in emergency twice for several reasons and the problem with my family wasn't getting any better. Lonliness and heartache was all that I felt most days, but I tried to keep strong...with everything I had.
December
Chemo was now back to every week and the effects were really getting to me. I started losing a bit of hair (nothing dramatic, but definitly something I noticed.) Things started to get a bit better with my mom at least when I felt that I had finally gotten through to her about how I felt. It was a great relief and I thought that it would give me more energy, but the chemo had really done it's job this time, I was feeling week, disoriented, and lethargic (more so than before.) The good thing from all of this is that I started to go swimming (with the OK from my doctor of course ;) The first time I went swimming I almost cried. That feeling of moving my entire body for the first time in months is priceless. Since I started I've been going a couple days a week which has really helped my mental well-being. It's amazing how much we take our bodies for granted, and I think that only when you have been deprived of your body somehow that you will really appreciate what you have or what you lost.
Christmas
My sister came with the kids from Egypt to spend some time with the family. It's really nice having the kids around and it's definitely cheered me up a lot. I love hanging out with them and they're a great distraction from everything that's going on ;)
So, that's the sum up for now, like I said, a lot more has happened but I will update soon again to go more into detail about certain things that I've been thinking about.
P.S. Chemo has now been changed to Fridays instead and my next chemo session is after tommorrow. Will definitly update before then :)
/H
October
I had just had my 6th chemo session and two days later it was my birthday. So I asked a couple of friends to go out for dinner. I didn't want it to be so formal, rather just a nice group of people enjoying some good (really good Indian food) and to celebrate everything and anything. I had the best night in a long time and some of my closest friends (both old and new) were there.
Everything since just went a bit crazy. I was finding it hard to communicate with my parents despite having tried several strategies. On top of that, I didn't feel like I was getting the support I needed from them. It was hard to say the least. It really brought me down. So far I'd been spending most of my days alone and I didn't see anything changing on their behalf. It was quite painful and lonely and I had a lot of time to think. I won't go into too much detail because this is after all, a summary :)
November
By now I was still feeling under the weather. I was getting weaker and weaker and my energy levels were dropping completely. At this point of my chemo schedule, I was suppose to go down to once every third week. But when we did a check up after the 3 week interval, the doctors noticed that my hip wasn't showing any signs of healing and my CRP had gone up again (it had decreased for a while.) I wasn't responding to treatment. The only good thing about this was that at least my hip wasn't getting any worse. But because of this we had to increase chemo again to every week for another three weeks with double the dose than originally planned. Above ALL of that however, the cortisone was killing me. I was taking 50mg a day (highest dosage you can take in a day) and I was feeling every side effect possible. I was distraught. My face was so swollen it had looked like I'd had an overdose of botox, or like someone just pumped air into my face. In fact, my entire body was swelling up and I felt more and more uncomfortable for everyday that went by. I couldn't breathe, I couldn't fit into my clothes, I couldn't sleep, and I was in a lot of pain, everywhere. By now I had also been in emergency twice for several reasons and the problem with my family wasn't getting any better. Lonliness and heartache was all that I felt most days, but I tried to keep strong...with everything I had.
December
Chemo was now back to every week and the effects were really getting to me. I started losing a bit of hair (nothing dramatic, but definitly something I noticed.) Things started to get a bit better with my mom at least when I felt that I had finally gotten through to her about how I felt. It was a great relief and I thought that it would give me more energy, but the chemo had really done it's job this time, I was feeling week, disoriented, and lethargic (more so than before.) The good thing from all of this is that I started to go swimming (with the OK from my doctor of course ;) The first time I went swimming I almost cried. That feeling of moving my entire body for the first time in months is priceless. Since I started I've been going a couple days a week which has really helped my mental well-being. It's amazing how much we take our bodies for granted, and I think that only when you have been deprived of your body somehow that you will really appreciate what you have or what you lost.
Christmas
My sister came with the kids from Egypt to spend some time with the family. It's really nice having the kids around and it's definitely cheered me up a lot. I love hanging out with them and they're a great distraction from everything that's going on ;)
So, that's the sum up for now, like I said, a lot more has happened but I will update soon again to go more into detail about certain things that I've been thinking about.
P.S. Chemo has now been changed to Fridays instead and my next chemo session is after tommorrow. Will definitly update before then :)
/H
Kommentarer
Postat av: F
oh my God, hebs! I almost started to cry when I read your update. hade ingen aning om allt som pågått med dina föräldrar o dåliga responsen från chemo o allt annat. men va härligt att du kan gå o simma igen, det måste vara riktigt skönt :).
va kul att syrran o barnen kommit, lite omväxling av sällskap o så har du ju inte sett dem på ett tag heller, då blir det extra roligt när de är där.
puss o kram
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