It's been 10 days since my last treatment now and I'm still exhausted. In fairness the leaflet they gave me did say that the symptoms might be worse for couple weeks after finishing, as the radiotherapy is still acting. I've still been having nausea and reduced appetite, with things tasting a bit weird, although this is maybe getting a bit better. Still can't drink cappuccino though haha.
I'm still struggling with the fatigue. This is the side effect that can last the longest - having spoken to a few people who've had the treatment, it's not uncommon to last a few months. I've been trying to do a bit more (e.g took Seb along our street last night) but find that even small tasks take it out of me. I'm also finding my concentration is poor.....as if my brain is tired and fuzzy. I've not been meeting up with friends or family because of this, and feel quite happy just relaxing on my own at the moment. I am hoping level of fatigue will start to dwindle soon, even if it might take longer to be back to 100%.
I am back in Newcastle on the 22nd November, although as I mentioned before, we expect the lung function to be down from last review in August. Hopefully it will give us another baseline to work things out from, but the stabilisation might not be evident until well into the new year.
I'll keep on keeping on!
Monday, October 29, 2018
Monday, October 15, 2018
One week to go...
I have completed 4 weeks of treatment and this is now my 5th and final week! I can't say how relieved I am. The last week has been increasingly difficult and I more or less spent all weekend in bed. The exhaustion is like nothing I have experienced before.... those many nights spent awake with Estelle as a baby don't even come close! I have developed a new ability to go into coma like naps, where I don't hear the door bell or phone ringing. My limbs feel so heavy, as if filled with lead weights and I'm finding it hard to think clearly. It's a very odd experience and frustrating for someone who is used to being a busy bee. The days immediately after treatment are the worst, so today will hopefully be slightly better, before treatment again tomorrow. I have spent most of my time watching netflix, but I couldn't even manage that yesterday.
The last 3 treatments have been difficult, as they have been having problems with my alignment. Procedures are taking over 1 hr and on Friday we had to abandon after 1hr 20min as they just couldn't get me lying in the right position for treatment. After discussion with the doctor and physics department they concluded that the fatigue was changing the way I was lying on the trolley. I think during the original scans I was probably lying in a more tense position - holding my spine away from the cold and hard trolley, and could maintain that for the 40min. Based on original scans, various lines were drawn on me with permanent marker, to help align future treatments. So basically these lines were now inaccurate as my position was different. They work in millimetres, so any change throws everything off. They need the delivery of radiation to be very accurate, so that they hit lymph nodes only (which are tiny) and don't damage nearby organs. Therefore they redid the scans and markings on friday afternoon, and did treatment after this. So hopefully these new lines will help the last 2 treatments run smoothly!
I am so looking forward to finishing now. Although I know it will take some time to recover, at least I know I will be improving from that point. I have to phone transplant team to sort appointment once finished, but this will probably be another month away as there is no point assessing too soon. I'm glad there will be a little break, as I am nervous about the next assessment. It's hard for me to know what my lung function is doing, as everything seems hard work just now....but that might not be my lungs as such. I haven't been able to walk Seb or do things that would give me a better idea of how my lungs are coping.....hopefully that can start to build up after I finish. I have managed to maintain my weight so far - despite a lot of nausea. I am taking some high calorie supplements to try and keep me topped up! My blood tests have also been good - which shows my bone marrow is coping with the treatment. I had to get some extra bloods on Friday, but since no one has phoned I assume they were ok for tomorrows treatment to still go ahead. I also seem to have avoided having any skin reactions, which are apparently quite common. All little positives to focus on.
Estelle is coping well with all the changes and her mummy being out of action. She is enjoying the daddy and granny attention! She was with us at the hospital on friday for 5 hours and behaved really well.....better than I did haha! It's hard for her to understand what's going on but she is looking forward to me finishing treatment and being back to normal!
Here's to one more week....!!!
The last 3 treatments have been difficult, as they have been having problems with my alignment. Procedures are taking over 1 hr and on Friday we had to abandon after 1hr 20min as they just couldn't get me lying in the right position for treatment. After discussion with the doctor and physics department they concluded that the fatigue was changing the way I was lying on the trolley. I think during the original scans I was probably lying in a more tense position - holding my spine away from the cold and hard trolley, and could maintain that for the 40min. Based on original scans, various lines were drawn on me with permanent marker, to help align future treatments. So basically these lines were now inaccurate as my position was different. They work in millimetres, so any change throws everything off. They need the delivery of radiation to be very accurate, so that they hit lymph nodes only (which are tiny) and don't damage nearby organs. Therefore they redid the scans and markings on friday afternoon, and did treatment after this. So hopefully these new lines will help the last 2 treatments run smoothly!
I am so looking forward to finishing now. Although I know it will take some time to recover, at least I know I will be improving from that point. I have to phone transplant team to sort appointment once finished, but this will probably be another month away as there is no point assessing too soon. I'm glad there will be a little break, as I am nervous about the next assessment. It's hard for me to know what my lung function is doing, as everything seems hard work just now....but that might not be my lungs as such. I haven't been able to walk Seb or do things that would give me a better idea of how my lungs are coping.....hopefully that can start to build up after I finish. I have managed to maintain my weight so far - despite a lot of nausea. I am taking some high calorie supplements to try and keep me topped up! My blood tests have also been good - which shows my bone marrow is coping with the treatment. I had to get some extra bloods on Friday, but since no one has phoned I assume they were ok for tomorrows treatment to still go ahead. I also seem to have avoided having any skin reactions, which are apparently quite common. All little positives to focus on.
Estelle is coping well with all the changes and her mummy being out of action. She is enjoying the daddy and granny attention! She was with us at the hospital on friday for 5 hours and behaved really well.....better than I did haha! It's hard for her to understand what's going on but she is looking forward to me finishing treatment and being back to normal!
Here's to one more week....!!!
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