I shouldn't have this!

Well, I thought I was doing really well. I took my temperature every day  and I was fine, despite having a cough and feeling really tired.  After a few days I woke up feeling a hundred per cent better. So what happens when I take my temperature? It was 37.4.  Oh. I waited ninety minutes and took it again. 37.6. I phoned my nurse friend just to let her know I was phoning the hospital. She agreed, as I could be neutropenia.  To be sure, I took my temperature again and it was 38!!!!   I phoned the hospital and was told to come in.  I went to the day ward, where all my immunotherapy treatments will, be so at least it was like a recce! The only problem was that the whole IT system went down, so I ended up staying there all day. I had bloods done and swabs taken. All eventually came back clear. I was checked out by the doctor, who found a bit of a crackle at the bottom of my lungs, so he gave me some antibiotics and sent me home.  I have to say I was shattered, doing nothing all day so much

As a thank you to my friend for her support, I had booked a night away in Chester. We go every year to  the Grosvenor hotel in the city centre, as a treat for our birthdays, but this time we were staying just outside the city.  We had a great time but during the day I kept getting the electric shock pain in my hand. It happens intermittently, turning the car key in the lock, carrying a bag , lifting a drink up to my mouth. My friend was concerned and so I explained what had happened in more detail.  She explained that the phlebotomist must have hit my radial nerve, but she was worried that it was getting worse, not better.  What makes it worse it that this is my good hand. I was injured many years ago and lost  some of the use of my left had, so I rely on the right one completely. I really hope it gets better! When I got home I decided to phone my specialist nurse at the hospital and let her know. 

Two days later, on the Friday morning, I had to return for another blood test. This was to check my platelet levels for the weekend and I might need another transfusion.  I was a bit apprehensive, after my last experience! This time the same phlebotomist asked if a 4th year medical student could take my blood. I agreed, as I always think they need to get as much practice as they can, but I said there was no way the blood was coming out of my wrist!  I explained to the student, in front of the phlebotomist, the reason why and said the pain was worse than childbirth! I was trying to make light of it and she said I'd never let her forget it! We do have a good relationship, but I must admit that I have lost confidence in her.  Anyway, she instructed the student how to use the equipment and then how to draw the blood out of my arm. He was brilliant and I had no problem with how he did it and I told him so. He was really pleased at his success. I felt it was important to tell him it was

On the Wednesday I want in for the transfusion. I have never had one before so I had to be seen by a doctor, who would explain the procedure and the risks.  He was very good and even gave me a leaflet to read. I was impressed with their thoroughness.  The transfusion only took half an hour but I had to wait an extra fifteen minutes to ensure I didn't have a reaction. I didn't so that was me down and I went home.  I must say that I felt better straight away. I hadn't realised how tired I had felt!

On the Tuesday, I went for my blood test, back to the suite on the ward where I had the rituximab.  I have never had a problem in giving blood, but on this occasion the phlebotomist said she couldn't get blood out of my right arm.  She then moved down to my wrist, near to my thumb. As she inserted the needle I had a shooting pain down to my index and middle fingers. It was like an electric shock and I don't know how I didn't jump off the chair! I have never experienced pain like it and she immediately apologised but carried on and took the three phials of blood out.  Even afterwards, my hand was sore and and tingling, depending which way I moved it. Fortunately I had been dropped off at the hospital, so I didn't have to drive home.  I was told that they would check my platelet level and let me know if I needed a transfusion the next day.  I went home and later that day when I was babysitting I got a phone call from the hospital. They wanted me back there for a transfusi

Once I got home I decided to rest for a day or two, to see what would happen, if anything.  Two days later I began to have itchy skin, so I self medicated with my prescription anti histamine and it soon stopped. Three days later I started my usual injections, to increase my white blood cells. They finished the following Monday, exactly a week after I had left hospital. These were given to me by my nurse friend, who thought I looked pale.  The revious day, when I had got dressed, I had noticed tiny blood spots on my chest. There weren't many, but when I checked, I found that they were a side effect of cytarabine. I was glad I was going for a blood test the next day. 

Well, yesterdays lunch came back to bite me. I had an upset stomach and felt really rough but it went off by lunchtime. I couldn't eat anything so I just had tea and biscuits. It must have done me good as I felt back to normal at midday.  The ward rounds only take place in the afternoon on a Monday so even though I could go home I had to wait for my prescription. A nurse came to do my obs and unfortunately my temperature was up to 38! This means more bloods and swabs needed to be taken. I became very uneasy at the thought of not going home tonight.  Eventually the tests came back fine, the specialist was quite happy for me to go home so I just sat and waited - and waited - and waited! I felt as though I was going stir crazy and had still not had anything to eat. All I could think of was opening a tin of Heinz spaghetti, something I rarely eat!   Out of the four days in hospital this was by far the worse. At least on the other days I knew what was happening.  I left the ward at 8.20

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, more like a hat that is

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!