- Chemo - I'm starting to feel like it's never-ending. As I don't really have that much pain in my hip area any more I am just thinking why cant they do the operation now and get on with it. I am getting fed up of having to be put through crap when I am feeling OK.
- Anemia/No Energy - My blood count has been low for a couple of weeks now which is bound to make me feel weak and tired. I've been trying my hardest to boost my blood count by eating healthy and looking after myself but it's just not working.
- Side effects - Its just been one thing after another with the side effects. From painful toilet trips, to acid reflux, I've had it all in a short space of time. Just when I think what's next and a new thing does actually happen. It's bloody annoying and its really dragging me down.
- Side effects - Its just been one thing after another with the side effects. From painful toilet trips, to acid reflux, I've had it all in a short space of time. Just when I think what's next and a new thing does actually happen. It's bloody annoying and its really dragging me down.
- Low self-esteem - I hate that I am not losing weight due to the steroids in the drugs they give me and I also hate my baldness. Wearing baseball caps is not my thing and I am worried that people who I come across in shops and on the walk who don't know me might think I am chav who's out to mug them. I also dont feel confident to walk around bald yet either.
To top the wonderful last few weeks, over the weekend, last Saturday, I woke up with a high temperature of 38.8 degrees. I've been told if it ever reaches 38 to phone the hospital and go in immediately. I've also been told by other guys is that if that happens, you usually have to stay in the hospital for 3 days hooked on an IV drip and pumped full of antibiotics. The thought of this really depressed me even more as I had a weekend planned with my friends as I really needed cheering up. When I got there, they took lots of samples of blood, from both of my lines and from my arm. It would take 2 days for the samples to grow the bacteria to see where the infection has come from and they said that I would have to stay in till Monday. This was really upsetting as I did not want to spend any extra time in hospitals, especially as a week later I would have to be back in Southampton getting my chemo. The problem was, my blood count had dropped so low that I would not be able to get chemo as my blood was too weak. I could afford to be set back a week last as this would affect my planned trips for Sallie and Russ' wedding celebrations. Saturday, I felt so rough and my temperature just kept rising. It ended up going to over 40 degrees. At this point they didn't know exactly what was causing it but to be save they just pumped me full of antibiotics and IV drip to keep me hydrated. The antibiotics really affected my taste like the chemo and I felt like I was having chemo again as they gave me a drip over 8hrs/overnight. The following day, they decided to give me a blood transfusion. This was very weird and scary for me as the idea of being pumped someone else blood really freaked me out. I wanted to know where it came from and who. I didn't want it to be from someone dirty and unhygienic. Once I got my head around it, I actually became grateful to whoever did donate the blood as it was actually helping me and was going to make me feel better.
After the blood transfusion and later on Sunday evening, the doctor came in and said that one of the tests has grown a bacteria which has come from one of my lines and this seemed to have been the source of my infection. Once we knew what it was, and since my temp had been low all day on Sunday I asked to be discharged. I did not want to spend another night there. I honestly think that being in the hospital at the moment makes me feel worse than better. It's probably because I associate being in hospital with having chemo and making me feel crap. I had to sign forms that I was going against their advice but I just wanted to go home and be in a happy and positive environment where I would feel a lot better. I managed to get home, late Sunday evening and immediately as I stepped through the doors of my own home, I felt better. The following day I did have to go back into the hospital for another dose of antibiotics and pick up some tablets. I spent the next 2 days just taking it easy and resting. Come Wednesday I was feeling great and I even went back into work.I think the blood transfusion really helped bring my energy levels up. Since I was on a high, It was a good time to go to cinema. Unfortunately the film I really wanted to see was sold out... so I watched the new Spider-man instead which was amazing!! : )! Now just need to see Ted and Batman!!!
Today I went to see my consultant again. My blood was also counted and the numbers are great and much higher so I'm definitely having the chemo on Monday. After the consultation, I went to have my half way scans, CT scan and MRI. I forgot how weird the CT scan is. They make you drink some weird drink over an hour, you are not allowed to just down it. Then during the scan, they inject you with this strange stuff that gives you a heat rush and make you feel like you've wet yourself. Then I forgot how long the MRI scan is... 45mins. I actually fell asleep. At the end they gave me a copy of the CD of the scan which I have been looking at but I don't know what I'm looking at. I will just have to wait 3 weeks for find out exactly how its all going. Hopefully if its good news, it will give me a massive boost and remind me that all this pain and suffering is worth it!
To top the wonderful last few weeks, over the weekend, last Saturday, I woke up with a high temperature of 38.8 degrees. I've been told if it ever reaches 38 to phone the hospital and go in immediately. I've also been told by other guys is that if that happens, you usually have to stay in the hospital for 3 days hooked on an IV drip and pumped full of antibiotics. The thought of this really depressed me even more as I had a weekend planned with my friends as I really needed cheering up. When I got there, they took lots of samples of blood, from both of my lines and from my arm. It would take 2 days for the samples to grow the bacteria to see where the infection has come from and they said that I would have to stay in till Monday. This was really upsetting as I did not want to spend any extra time in hospitals, especially as a week later I would have to be back in Southampton getting my chemo. The problem was, my blood count had dropped so low that I would not be able to get chemo as my blood was too weak. I could afford to be set back a week last as this would affect my planned trips for Sallie and Russ' wedding celebrations. Saturday, I felt so rough and my temperature just kept rising. It ended up going to over 40 degrees. At this point they didn't know exactly what was causing it but to be save they just pumped me full of antibiotics and IV drip to keep me hydrated. The antibiotics really affected my taste like the chemo and I felt like I was having chemo again as they gave me a drip over 8hrs/overnight. The following day, they decided to give me a blood transfusion. This was very weird and scary for me as the idea of being pumped someone else blood really freaked me out. I wanted to know where it came from and who. I didn't want it to be from someone dirty and unhygienic. Once I got my head around it, I actually became grateful to whoever did donate the blood as it was actually helping me and was going to make me feel better.
Hi,
ReplyDeleteWanted to share with you my blog about Ewing's Sarcoma. My boyfriend is 25 and was diagnosed in June. I wish you all the best in your treatment. I am relieved to find someone else that is so close in age living the same experiences.
www.threeinonemillion.blogspot.ca
Best of luck