Hello All,
I had IVIG infusion on Friday which went ok. I was in the new building. I was quite worried about my IV access as my normal place didn't work and I was heaps worried they wouldn't find anywhere else. However, they did! I congratulated the nurse lots of times.
My possy turned up. I hadn't seen some friends at the cancer center in a while. Our days and weeks had been messed up but they were there this time! We sat together and had a hot drink together. It was good.
My sister in law was with me. It was really nice to catch up :-)
After my infusion, we went downstairs and I was offered an oncology massage for free! I had no idea they had a massage therapist there. I was worried about being bruised but because it was an oncology massage, it was very gentle and relaxing. I ended up having one for 45 mins! Ha! Thanks for letting me have a massage, Angela! You were very patient.
I am still excited about FA camp which starts this Saturday. I can't wait to meet these other FA adults :-)
My wound is heaps better. The pain is heaps decreased. The infection gone. I am now praying my counts will go up. I find it frightening when they are down.
Isaac is getting better. He had bronchitis for a while there and was home for almost 2 weeks with me. He also fell in the bath and hit his head badly. I wrote that on facebook but didn't write that here. He dented his skull and had to have a CT scan to check it wasn't fractured. It wasn't, praise God. He just dented the soft part of the skull and it bounced back out not long after the fall. Isaac is on olive leaf tonic and vit B and C to help build up his immunity. He has struggled a bit in the last month or two. The doctors said he was run down. He now just has a cough that is hanging on. I am praying it will go completely, the poor love.
Isaac LOVES FA camp and is looking forward to it, just like we are.
Well, I felt terrible yesterday from infusion. I had fainting spells and felt nauseous. I had to have an anti-emetic to stop me throwing up. I felt so weird that I didn't fall asleep til 2.30 am last night. I feel a little better today but pretty washed out. I got up at 1030am so hopefully tonight I will sleep better and have no weird infusion reaction.
Ok, got to eat :-)
Love Charisse
Welcome to my site! To gain some background on me and Fanconi anemia (FA), please read MY STORY (click here).
Sunday, August 30, 2009
Monday, August 24, 2009
Random Stuff/Photos/Medical update
Hello All,
It has been a little while since I updated. As per usual, medical dramas are always exciting. My wound from the operation to remove the vulval cancer is taking forever to heal! I have seen the surgeon every Friday. First, the swelling was just crazy that there was a lot of pain and fluid coming out. Then the stitches were pulled out as a result of the swelling so the wound started to gape a bit but not too badly. Then some weird blisters appeared along with an excess of granulation tissue and this provided me with horrible pain. I had to up my pain relief. Then, suddenly it looked infected a week later with more pain again. Off to the surgeon and so put on antibiotics. At first they considered taking me back into surgery to clean the wound up which is still gaping a bit from the stitches being pulled from the swelling. However, my blood counts came back as ALL low! Crazy! Even counts that are usually well within range were quite under the range which made me panic and have many emotional moments. Haemaglobin is never low and was low and the level that shows how stressed your marrow is, is usually in range and is way up! So I think it is safe to say my body and marrow is under a bit of stress with trying to heal this wound! So they didn't want to take me into surgery with counts like this. We went with the antibiotic course and salt baths and HEAPS of rest *sigh* I am SICK of rest. I haven't driven in at least 6 weeks. I have been very teary as well. The surgeon also thinks I am having a reaction to the stitches that are left in. However, it is too painful to snip them and they don't want to touch down there with my counts. So we are waiting. I just finished the antibiotics and I think it is feeling a bit better but I need to give it more time. I now have local anaesthetic that I can put on to help with the pain as well as the oral pain relief.
Other medical updates. I went to the ENT to have my mouth checked. After the op, I was quite stressed and tired and got many ulcers in my mouth. They have started to clear up but we are keeping an eye on it all. I also have a huge ulcer on my tongue right now and some white areas which have developed while I have been stressed. He also discovered a strange lump inside my right ear. He thinks it needs to be surgically taken off and could be a cyst or a basal cell carcinoma. These cancers are easy to remove if caught early. They are not known for spreading. Boy, Australian sun is a killer. I must remember not to forget my ears and put sunscreen on the. Honestly, I cover myself in sunscreen and wear a hat. From all these cancers (ones on the head), you would think I deliberately expose myself to the sun. Believe me, I don't! I hope it is JUST a cyst. I have to see the ENT again in 3 weeks to see if this ulcer and white spots on my tongue, go away. If not, biopsies and this lump will be taken off together in surgery.
I saw a pyschologist yesterday. It was good. I have been teary every day since the operation to take out the vulval cancer. I have found this rather traumatic and am still struggling in the recovery period. I had a good chat with this pyschologist. She deals with patients going into transplant and who have experienced cancer. I will be working through some more issues that have come up as a result of my brother's death in 1994 and doing some visual exposure in the transplant unit and haematology wards to help my anxiety. We will be working through a LOT! I haven't written all that here though. I will see this lady every 2 to 3 weeks. I am aware that this could be challenging but am eager. I also feel like I need the general emotional support right now.
Enough of that though. I wanted to share some fun photos with you. It has been winter here but we had a few days of warmer weather and sunshine. I thought I would put some photos up of Isaac and I in the backyard. Remember Bella, Isaac's kitten? She is 6 months now and just got desexed and is allowed to explore the backyard with us around. The other cat you will see is our 6 year old cat, Matilda :-) Below is Isaac and Bella.
Below is a picture of myself enjoying the sunshine, watching Isaac and Alan working in the yard. See......I DO wear a hat....and I DO have plenty of sunscreen on...even on my hands!
It has been a little while since I updated. As per usual, medical dramas are always exciting. My wound from the operation to remove the vulval cancer is taking forever to heal! I have seen the surgeon every Friday. First, the swelling was just crazy that there was a lot of pain and fluid coming out. Then the stitches were pulled out as a result of the swelling so the wound started to gape a bit but not too badly. Then some weird blisters appeared along with an excess of granulation tissue and this provided me with horrible pain. I had to up my pain relief. Then, suddenly it looked infected a week later with more pain again. Off to the surgeon and so put on antibiotics. At first they considered taking me back into surgery to clean the wound up which is still gaping a bit from the stitches being pulled from the swelling. However, my blood counts came back as ALL low! Crazy! Even counts that are usually well within range were quite under the range which made me panic and have many emotional moments. Haemaglobin is never low and was low and the level that shows how stressed your marrow is, is usually in range and is way up! So I think it is safe to say my body and marrow is under a bit of stress with trying to heal this wound! So they didn't want to take me into surgery with counts like this. We went with the antibiotic course and salt baths and HEAPS of rest *sigh* I am SICK of rest. I haven't driven in at least 6 weeks. I have been very teary as well. The surgeon also thinks I am having a reaction to the stitches that are left in. However, it is too painful to snip them and they don't want to touch down there with my counts. So we are waiting. I just finished the antibiotics and I think it is feeling a bit better but I need to give it more time. I now have local anaesthetic that I can put on to help with the pain as well as the oral pain relief.
Other medical updates. I went to the ENT to have my mouth checked. After the op, I was quite stressed and tired and got many ulcers in my mouth. They have started to clear up but we are keeping an eye on it all. I also have a huge ulcer on my tongue right now and some white areas which have developed while I have been stressed. He also discovered a strange lump inside my right ear. He thinks it needs to be surgically taken off and could be a cyst or a basal cell carcinoma. These cancers are easy to remove if caught early. They are not known for spreading. Boy, Australian sun is a killer. I must remember not to forget my ears and put sunscreen on the. Honestly, I cover myself in sunscreen and wear a hat. From all these cancers (ones on the head), you would think I deliberately expose myself to the sun. Believe me, I don't! I hope it is JUST a cyst. I have to see the ENT again in 3 weeks to see if this ulcer and white spots on my tongue, go away. If not, biopsies and this lump will be taken off together in surgery.
I saw a pyschologist yesterday. It was good. I have been teary every day since the operation to take out the vulval cancer. I have found this rather traumatic and am still struggling in the recovery period. I had a good chat with this pyschologist. She deals with patients going into transplant and who have experienced cancer. I will be working through some more issues that have come up as a result of my brother's death in 1994 and doing some visual exposure in the transplant unit and haematology wards to help my anxiety. We will be working through a LOT! I haven't written all that here though. I will see this lady every 2 to 3 weeks. I am aware that this could be challenging but am eager. I also feel like I need the general emotional support right now.
Enough of that though. I wanted to share some fun photos with you. It has been winter here but we had a few days of warmer weather and sunshine. I thought I would put some photos up of Isaac and I in the backyard. Remember Bella, Isaac's kitten? She is 6 months now and just got desexed and is allowed to explore the backyard with us around. The other cat you will see is our 6 year old cat, Matilda :-) Below is Isaac and Bella.
Below is a picture of myself enjoying the sunshine, watching Isaac and Alan working in the yard. See......I DO wear a hat....and I DO have plenty of sunscreen on...even on my hands!
Matilda on the left, Bella on the right :-)
6 weeks ago, before my surgery and in the school holidays, Alan, Isaac and I went to a place called Victor Habour. You can travel over to an island called Granite Island on a carriage pulled by a draft horse. There are fairy penguins over there. Beautiful scenery. We went over and stayed for the night tour so we could see the penguins. It was a great family day.
This is us leaving the main land, going over the long bridge, in the carriage being pulled by the horse.
I took a picture of the water while driving. It was very peaceful :-)
Isaac enoying the ride and the ocean scenery :-)
Scenery. Is that the main land? Hehe....
The rocks on the other side. Getting closer....
Here we are on the island and we had enough time to walk around the whole island before dark. It was cold so we had our scarves, beanies, gloves asnd jackets on. We started by walking up all these stairs to the top of the side of the island and then followed dirt tracks from there.
Haha! My hair looks crazily fluffy and out there! It was cold and windy but beautiful! Isaac and I stopping to pose while climbing.
The view half way up the stairs :-)
I love this rock formation. It looks like a hand! We were walking around the side of the island, safely of course, and saw this. Fascinating!
Walking along small trails. Hold on Isaac. It is a long way to tumble and roll down!
Big boulder down by the water!
Isaac and I on a rock....hehe
Walking around the other side of the island. The sun is going down. Pretty.....
Over half way around now. An old, huge tree........fascinating
Coming back towards the front of the island, close to where the bridge is back to the main land. Pretty.
The bridge we travelled over from the main land, on the carriage pulled by the horse :-)
We walked back over the bridge after the penguine tour. We got the penguine tour on video and didn't have any pictures. I think this photo is nice.
Can you believe it? It is approaching 9.30pm and we still hadn't been to the playground which we promised Isaac could do. It had been a big day of fun and was the school holidays, so we stayed later to allow Isaac a bit of a play. Then we ventured home on our 1.5 to 2 hour trip home. Isaac fell asleep in the car :-)
So that was one outing during the holidays. Another day we went to the Thomas the Tank Engine Fair which was at the Railway Museum. There are also real old steam trains kept there and that was the highlight of Isaac's day. He loves steam trains so here are a few pictures of Isaac hanging out with those huge trains :-)
6 weeks ago, before my surgery and in the school holidays, Alan, Isaac and I went to a place called Victor Habour. You can travel over to an island called Granite Island on a carriage pulled by a draft horse. There are fairy penguins over there. Beautiful scenery. We went over and stayed for the night tour so we could see the penguins. It was a great family day.
This is us leaving the main land, going over the long bridge, in the carriage being pulled by the horse.
I took a picture of the water while driving. It was very peaceful :-)
Isaac enoying the ride and the ocean scenery :-)
Scenery. Is that the main land? Hehe....
The rocks on the other side. Getting closer....
Here we are on the island and we had enough time to walk around the whole island before dark. It was cold so we had our scarves, beanies, gloves asnd jackets on. We started by walking up all these stairs to the top of the side of the island and then followed dirt tracks from there.
Haha! My hair looks crazily fluffy and out there! It was cold and windy but beautiful! Isaac and I stopping to pose while climbing.
The view half way up the stairs :-)
I love this rock formation. It looks like a hand! We were walking around the side of the island, safely of course, and saw this. Fascinating!
Walking along small trails. Hold on Isaac. It is a long way to tumble and roll down!
Big boulder down by the water!
Isaac and I on a rock....hehe
Walking around the other side of the island. The sun is going down. Pretty.....
Over half way around now. An old, huge tree........fascinating
Coming back towards the front of the island, close to where the bridge is back to the main land. Pretty.
The bridge we travelled over from the main land, on the carriage pulled by the horse :-)
We walked back over the bridge after the penguine tour. We got the penguine tour on video and didn't have any pictures. I think this photo is nice.
Can you believe it? It is approaching 9.30pm and we still hadn't been to the playground which we promised Isaac could do. It had been a big day of fun and was the school holidays, so we stayed later to allow Isaac a bit of a play. Then we ventured home on our 1.5 to 2 hour trip home. Isaac fell asleep in the car :-)
So that was one outing during the holidays. Another day we went to the Thomas the Tank Engine Fair which was at the Railway Museum. There are also real old steam trains kept there and that was the highlight of Isaac's day. He loves steam trains so here are a few pictures of Isaac hanging out with those huge trains :-)
Isaac pretending to be the engine driver.....hehe
I like this photo. What a cool kid! What a huge steam train!
Some other holiday fun at the local park. Isaac likes to make up a challenge course and daddy (Alan) must do whatever Isaac does....hehe
Plenty of challenges.
Go, Alan, GO!!!!
Happy Isaac!
So there are some updated photos of our family. It is late and I must get into bed. We have FA camp here in Australia in less than 2 weeks. I will get to meet Kelly and Janet Turner from the FA e-group from New Zealand! I am SO excited! It should be fun. Please pray I feel much better with this wound and that my counts have improved. I must go to bed!
I like this photo. What a cool kid! What a huge steam train!
Some other holiday fun at the local park. Isaac likes to make up a challenge course and daddy (Alan) must do whatever Isaac does....hehe
Plenty of challenges.
Go, Alan, GO!!!!
Happy Isaac!
So there are some updated photos of our family. It is late and I must get into bed. We have FA camp here in Australia in less than 2 weeks. I will get to meet Kelly and Janet Turner from the FA e-group from New Zealand! I am SO excited! It should be fun. Please pray I feel much better with this wound and that my counts have improved. I must go to bed!
Love you all,
Charisse
Labels:
medical update,
photos,
school holidays,
victor habour
Friday, August 7, 2009
Follow Up Surgeon's Appointment
Hello All,
I had another appointment with the surgeon today to check up on the healing of the wound. The swelling has come down significantly. There is still a good amount of swelling in different areas. It still doesn't feel normal and she told me the areas that were still swollen.
It seems that the abnormal, crazy swelling that i had last week caused a few stitches to be pulled. She said the wound is looking ok, still swollen but definitely improving. She said that the wound will take a little longer to heal with the few stitches that have been pulled by the swelling but that there is enough stitching in place to hold it. She said that it will heal much better once the rest of the swelling goes down because the swelling is still pulling at it. I need to rest up and not return to work. It could be another 6 or so weeks until it feels better and is healed....or a little longer depending on how quickly the swelling goes down.
I am walking now rather than waddling and my pain relief has been decreased. I know it will continue to improve.
Well, dinner is ready! Everyone at camp sunshine, I a lot of fun!! I wish I was there :-)
Love Charisse
I had another appointment with the surgeon today to check up on the healing of the wound. The swelling has come down significantly. There is still a good amount of swelling in different areas. It still doesn't feel normal and she told me the areas that were still swollen.
It seems that the abnormal, crazy swelling that i had last week caused a few stitches to be pulled. She said the wound is looking ok, still swollen but definitely improving. She said that the wound will take a little longer to heal with the few stitches that have been pulled by the swelling but that there is enough stitching in place to hold it. She said that it will heal much better once the rest of the swelling goes down because the swelling is still pulling at it. I need to rest up and not return to work. It could be another 6 or so weeks until it feels better and is healed....or a little longer depending on how quickly the swelling goes down.
I am walking now rather than waddling and my pain relief has been decreased. I know it will continue to improve.
Well, dinner is ready! Everyone at camp sunshine, I a lot of fun!! I wish I was there :-)
Love Charisse
Monday, August 3, 2009
Recovery will be a lot longer than I thought.......
Hello All,
I thought I would do an update on how I am recovering.
Well, Monday morning last week I woke up groaning in pain! It was SO bad. I wanted to cry and I feared that I had come home to early. I wanted one of those injections so badly. At that point I realised that recovery was gonna take a lot longer than I thought it would.
I felt like I had a tennis ball or more between my legs! Haha.....trying to be discreet and all. We ended up contacting the surgeon because the pain was bad and the swelling quite bad too. She was concerned that I might have a haematoma so she asked me to come in during the next couple of days.
I went in to see her and she checked it all out and agreed that I was more swollen than they would have expected but didn't have any reason for it except that bodies are individual and can respond differently to surgical procedures as we all know too well. I started taking more pain relief for the pain which caused me to forget things during the week but at least I was able to get the pain under control without needing to go back to the hospital. Dr Grant said that there was no haematoma and she was very relieved. I have had some stuff coming out of the wound which is a reddish colour.....as well as other colours and I was concerned about bleeding and my monthly time was winding up and I knew this was coming from the incision which is heaps bigger than the other one. Because my marrow was suppressed from being unwell weeks ago I was concerned that the platelets had dropped again but the surgeon put my mind at ease and said that this "bleeding" was not platelet bleeding but stuff that comes normally when a wound is healing and that people with high platelets have this as well. It is the healing process. So I have not felt as concerned as I was. My nursing mind and experience acknowledges this as well but when it is yourself you feel more concerned.
So I have been doing ice packs, pain relief and I have now started salt baths to help the healing, clean the area, decrease pain and swelling. The swelling gas come down half way but is still quite swollen. It is annoying and I can't wait to be normal. The incisions are stinging and when the pain relief wears off I feel like knives are cutting into me. It is horrible. That is what the C-section felt like when pain relief wore off. I haven't been able to walk around...I have waddled VERY slowly when walking. I seem to be able to speed up a little now but not for long. I have been either lying in bed on my back or sides with a pillow between my legs. I sit on the recliner chair with my egg shells (foam) that my sister has lent me from when she had her babies. It takes me forever to get in the shower in the mornings. For example, it is 12 midday now and I still need to shower. The effort is just so much and it hurts to get ready....but the feeling of being clean is nice. My doctor said that it will be "time" that heals....as we know. She cannot say how long it will be. Just time. So I won't be rushing back to work any time soon. 6 weeks is an average time for big surgical procedures. So that's that.
Other news. I have terrible ulcers in my mouth, by the front, down the bottom, on the left. Terrible!! That started with the stress of the operation. I went to the ENT yesterday for my usual check. He looked and said it was bad. He wants to give it 4 weeks to heal and then see him again. If it is still there, we will biopsy to check......*sigh*.......I hope they heal. We will also do the 6 monthly scope then. I have been reading the new FA handbook with all the details about head and neck cancer and gynae stuff and I am so totally overwhelmed. The ENT felt so bad for me. I know that my doctors are getting a jolt from the last 2 diagnosis......the head cancer last year and the gynae......it is keeping them on their toes but they seem to be reacting emotionally a little as well. I can see they care deeply. The gynae surgeon and her secretary told Alan before my surgery that they were "shaken" by the cancer diagnosis. They had been asking how I was coping with it and when Alan told them I was shaken, she said, "we were both shaken too". Many of the doctors I deal with here in Adelaide don't have FA patients. We are VERY few. I am paving the way. Even the top doctors have never had an FA patient. I am proud to say I am paving the way for other FA adult patients. These doctors are being well educated and trained......hehe.....by me.....and Alan........hehehehe. They are becoming quite diligent. They are now doing the surveillance without me asking and being very good. They are thinking about it. I feel good about my doctors at the moment.
Other news. Isaac is doing well. His teacher rang me on the phone last night and told me how well he is doing with his maths at school now. This was something Isaac was struggling with and I have been "tuitoring" Isaac at home with. We do fun games with his lego as counters. We do sums etc. Isaac has his own black board at home and he likes to play teachers and students. It helps make learning fun. It was encouraging to hear that my tuitoring has been helping him significantly.
Anyway, I need to go and get myself organised. My mum is now here to visit with me.
Bless you all,
Charisse
I thought I would do an update on how I am recovering.
Well, Monday morning last week I woke up groaning in pain! It was SO bad. I wanted to cry and I feared that I had come home to early. I wanted one of those injections so badly. At that point I realised that recovery was gonna take a lot longer than I thought it would.
I felt like I had a tennis ball or more between my legs! Haha.....trying to be discreet and all. We ended up contacting the surgeon because the pain was bad and the swelling quite bad too. She was concerned that I might have a haematoma so she asked me to come in during the next couple of days.
I went in to see her and she checked it all out and agreed that I was more swollen than they would have expected but didn't have any reason for it except that bodies are individual and can respond differently to surgical procedures as we all know too well. I started taking more pain relief for the pain which caused me to forget things during the week but at least I was able to get the pain under control without needing to go back to the hospital. Dr Grant said that there was no haematoma and she was very relieved. I have had some stuff coming out of the wound which is a reddish colour.....as well as other colours and I was concerned about bleeding and my monthly time was winding up and I knew this was coming from the incision which is heaps bigger than the other one. Because my marrow was suppressed from being unwell weeks ago I was concerned that the platelets had dropped again but the surgeon put my mind at ease and said that this "bleeding" was not platelet bleeding but stuff that comes normally when a wound is healing and that people with high platelets have this as well. It is the healing process. So I have not felt as concerned as I was. My nursing mind and experience acknowledges this as well but when it is yourself you feel more concerned.
So I have been doing ice packs, pain relief and I have now started salt baths to help the healing, clean the area, decrease pain and swelling. The swelling gas come down half way but is still quite swollen. It is annoying and I can't wait to be normal. The incisions are stinging and when the pain relief wears off I feel like knives are cutting into me. It is horrible. That is what the C-section felt like when pain relief wore off. I haven't been able to walk around...I have waddled VERY slowly when walking. I seem to be able to speed up a little now but not for long. I have been either lying in bed on my back or sides with a pillow between my legs. I sit on the recliner chair with my egg shells (foam) that my sister has lent me from when she had her babies. It takes me forever to get in the shower in the mornings. For example, it is 12 midday now and I still need to shower. The effort is just so much and it hurts to get ready....but the feeling of being clean is nice. My doctor said that it will be "time" that heals....as we know. She cannot say how long it will be. Just time. So I won't be rushing back to work any time soon. 6 weeks is an average time for big surgical procedures. So that's that.
Other news. I have terrible ulcers in my mouth, by the front, down the bottom, on the left. Terrible!! That started with the stress of the operation. I went to the ENT yesterday for my usual check. He looked and said it was bad. He wants to give it 4 weeks to heal and then see him again. If it is still there, we will biopsy to check......*sigh*.......I hope they heal. We will also do the 6 monthly scope then. I have been reading the new FA handbook with all the details about head and neck cancer and gynae stuff and I am so totally overwhelmed. The ENT felt so bad for me. I know that my doctors are getting a jolt from the last 2 diagnosis......the head cancer last year and the gynae......it is keeping them on their toes but they seem to be reacting emotionally a little as well. I can see they care deeply. The gynae surgeon and her secretary told Alan before my surgery that they were "shaken" by the cancer diagnosis. They had been asking how I was coping with it and when Alan told them I was shaken, she said, "we were both shaken too". Many of the doctors I deal with here in Adelaide don't have FA patients. We are VERY few. I am paving the way. Even the top doctors have never had an FA patient. I am proud to say I am paving the way for other FA adult patients. These doctors are being well educated and trained......hehe.....by me.....and Alan........hehehehe. They are becoming quite diligent. They are now doing the surveillance without me asking and being very good. They are thinking about it. I feel good about my doctors at the moment.
Other news. Isaac is doing well. His teacher rang me on the phone last night and told me how well he is doing with his maths at school now. This was something Isaac was struggling with and I have been "tuitoring" Isaac at home with. We do fun games with his lego as counters. We do sums etc. Isaac has his own black board at home and he likes to play teachers and students. It helps make learning fun. It was encouraging to hear that my tuitoring has been helping him significantly.
Anyway, I need to go and get myself organised. My mum is now here to visit with me.
Bless you all,
Charisse
Subscribe to:
Posts (Atom)