I shouldn't have this!

Well, I had a better night's sleep but I can't wait to get home to my own bed! I am having visitors today so they gave me my treatment at the right time which hopefully means it will be finished when they arrive.  I've had even more compliments about my hair, they are astounded when I say it's a wig! I'm definitely going to keep my new hair in this style.  The routine each day is obs, bloods and meds. Bloods are only once, whereas the other two are three times a day. It's really busy, what with the cups of tea and the meals in between. I'm still not having any problems and feel fine but it will be interesting to see what I'm like after this final treatment for this session.  Lunch today was awful! Couldn't eat much of it and I had a feeling I would suffer from it later, which I did! My visitors arrived but I was still plugged in, so they saw exactly was was going on with the treatment. Soon after the nurse came and unhooked me, so it wasn't so ba...

I was tired when I woke this morning due to the disturbed night. I found out I should have had the treatment at 10pm, not midnight so the day shift nurses changed  my morning treatment to 11am. There should be 12 hours between these treatments and I have to have four, not what I was expecting. I thought I was just having one per day, not two! I spent the day replying to texts from friends, phoned the husband, read lots and tried to watch TV on my iPad, despite the dreadful wifi signal.  The day was uneventful but I had chats with lots of staff who came to see me so the time flew by.  In the evening they managed to give me the treatment by 11pm and that made a difference because I wasn't asleep. I had a much better night's sleep!

 I arrived at Whiston Hospital at 9.30am and bought myself a large Costa hot chocolate. I have come prepared!  My friend sat with me for about an hour whilst I got settled and the treatment began.  I had been warned that I may have a reaction to the Rituximab but luckily I didn't. The nurses are so nice! I was given a menu card, very impressed, and the food I got later was fine.  I was the last patient left in the treatment lounge and then the wig man came. The wig was amazing! He fitted it on me and it looked virtually the same as my new hair cut. It was hard to fit, with me still having hair and I told him I wouldn't get it cut off next week, but that it was driving me mad.  He offered to do it there and then, so I told him to go ahead. Once done, he fitted the wig properly then he finished it off by cutting it more to suit me. It looks great and feels fine at the moment. I am NOT looking at my bald head in a mirror! Not yet anyway.  It feels strange, mor...

It's now two full weeks and a few days after my treatment. My hair is coming out already!!!! I just brushed it in the morning without thinking and then saw masses of hair on my brush.  I thought I had forgotten to clean it so it did, then brushed my hair again, more gently. It was full of hair again  I'm now moulting worse than the dog, and that's saying something, as he's a Bernese Mountain dog and there's always hair everywhere. I'll never moan about him shedding again!!!' Fortunately, I'm getting my wig at the end of the week when I go in for my second treatment so at least I'll have it. I'll then go to my hairdresser the following week and get him to shave my head.  Every time I put on a coat, jumper or scarf, they end up covered in hair. I'm having to use a lint roller ALL the time now.  I am being VERY careful when I'm showering. I've never been so gentle washing my hair, but the bath is still full when I've finished. This i...

I took the photo to my hairdresser and he told me that he's wanted to cut my hair like that for years! So he did!  I wanted to do this because my hair is shoulder length and I thought if I got used to my own hair short it wouldn't be such a shock when I had to wear the wig. And, hopefully people wouldn't notice it when I resorted to the wig, as they too would be used to it.  I was really pleased with the cut. My husband, who NEVER gives me a compliment actually said he liked it and it took years off me. That, combined with the weight loss from not being able to swallow very well, and I'm a different woman! It's been lovely to be able to buy clothes two sizes smaller. I have a new wardrobe now and I love it!

So, I'm sitting here, waiting for my friend to arrive and we'll go off to the hospital. I'm having my first session of Nordic Treatment. This one will only take thirty minutes, as it's the CHOP of R-CHOP. I will have the R at the very end of my treatment.  I have no idea how I'm going to react today, so it's fingers crossed. I have an appointment with the hairdresser at the unit straight after the session, which will be interesting. I get a free wig, but I will also buy my own in a few weeks.  My own hairdresser is going to come with me for that.  After two or three cycles I'm have an autologous stem cell transplant. I'll be in isolation for about a month. Currently I am the only person being treated for mantle cell lymphoma at the hospital I'm attending.  When I arrived,  a nurse took my temperature. It was too high, so then she had to take bloods and have them taken to the other hospital nearby for analysis. So, what was supposed to be a short visi...

So, I had the MRI yesterday. I was in the machine for far longer than I was told, one hour instead of thirty minutes. Also, they pulled me out and injected me with a dye, then I was pushed back in.  An hour of all that banging was awful, but necessary.  I returned to the hospital this afternoon to see the original consultant. I had expected him to say I needed more surgery to remove the remaining part of the tonsil but no. Apparently I hadn't had a tonsillectomy two years ago, just a biopsy. He explained that the swelling was back as a tumour on my throat. The only was to deal with that was to start the treatment that I had been avoiding for the past two years. He thought I'd probably be started on a strong steroid to quickly reduce the swelling, but after that he had no clue.  I returned him and contacted my consultant's secretary to see if I could bring my appointment forward by a couple of days. She said she would leave him a message and would get back to me on Monday....