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I mentioned in my first blog post that the only patient experience narratives of taking Rucaparib I had found were on US websites. It's been interesting making forays into this world as it is really quite different from the online support world that I'm familiar with - the Macmillan online community.
In Macmillan world, there is a lot of moral support. I am a community champion - a volunteer with some training and undertaking a role to support the moderators, making sure everyone who posts...
After a weekend at home she had to go back early this morning to begin her new regime.
5 days of continuous chemo to hit it where it hurts hopefully. Not sure what side effects she will have as it must be less strong but for a continuous time? We've had no information on why they have changed it or how the new regime works.
I left her feeling tired but bright in herself with patchy hair. It's strange as I'm forgetting what she looked like with long hair already. It's like my mind has...
Monday 28 November 2016.
Another funny old day, the chemo nurse phoned at 9am to see how I was, I told her I felt fine and that the throat was feeling a bit better, just a slight dry cough, was advised to get some antiseptic lozenges, and phone back if it gets worse.
So I went to the shops, got some lozenges and some knitting wool, I felt sad in the shop, last time I was in there I was so happy and excited about knitting a baby jumper.
I'm more of a sewing person ,I love sewing but...
I have hodgekins lymphoma stage 4 and i have had 4 cycles of chemo allready with injections to follow because oft low white cell count. I have been waiting for a date of a PET scan and pinning all my hopes on this. Today I got the appointment for this Friday and i can not stop shaking what are they going to find. I am a pessimist in life my husband is a glass overflowing person. I think ahhh will chemo carry on he thinks good news because the lumps I had in my neck have gone. But all I can think...
Sunday 27 th November 2016.
Today was a strange day, I got up feeling ok, actually I was awake at 4.30 am but got up at 7am. Did the temperature, tablets and let the dogs out, gave them breakfast, all the usual things, had a shower and then couldn't get the thought out of my mind that my throat is still all red on one side when I look and a little sore, the chemo nurse insisted that any sign at all of infection over the weekend I must phone the chemo help line, she said they'd rather sort...
Today I woke up with a sadness in my heart that I'm struggling to shift. I don't even know why, there's nothing in particular that I can say has caused it today. People use the phrase the weight of the world on your shoulders and that's exactly what I'm feeling. I'm sitting here with tears streaming down my face and I'm not even sure why.
I can't even begin to imagine the emotions mum feels every day.
the only person that I feel I can talk to in the whole world...
Hello - I write this in the hope of helping someone else who may be on the verge of making a decision about their treatment. I encourage you to stop for enough time to think and FULLY explore your options. Ask questions. Ask them again. And then ask them again. Please do not let family, friends, professionals rush you into a decision. It is YOUR life and YOU will be left with any residual physical challenges to deal with, not them. Ask questions MULTIPLE times. Ask the same question to MULTIPLE people...
I had a difficult nights sleep last night as I layed there worrying about her diet. It's something I am unable to help with and I'm watching her eating foods that in my mind are not helping with her nutritional balance.
I've started to write a recipe book to give to her parents - I'm hoping they won't take offense?
So today I went back to work after a week off. I have never felt so guilty in my life! It's a rock and a hard place situation, I need to work to pay the bills but mum also needs my support at home. I'm at the stage just now where I'm petrified to leave her side in case something happens, what I don't know its just an anxious feeling. I also want to spend as much time as possible with her as I know that at some point in the near future I won't be able to.
Work was so busy...
