Getting better...

The reduced dose of vincristine definitely made a difference! I was unwell on Tuesday, but a lot better on Wednesday, I was almost thinking I'd be back at work on Thursday! However, started to get pain again in my stomach Wednesday evening and felt pretty rough on Thursday.  Part of it is my feeling mad that I'm not better! Back to work on Friday though and out to see James Bond film too. Even if the number of cycles stays at 8, I think it will be a lot easier to handle. But if the next one really is the last that will be great!

Good news!

I had an MRI scan last Saturday afternoon (the appointment nearly ruined my shopping day with Sarah) and the results were ready today for my review at the hospital. To my relief, the scan showed that all my lymph nodes are back to normal, suggesting that the treatment really is working! After talking to the doctor about how the treatment has been affecting me he said that they would reduce the vincristine dose to half. This means I shouldn't be so ill afterwards. In addition, he said that they may reduce the total number of treatments from 8 to 6, meaning just 1 more after tomorrow. Then i will just have the Rituximab every 8 weeks for 2 years, but i don't think there are many side effects from that.

My hair will probably last if there are just 2 treatments left!

Blue

It's been another long week. I felt poorly again from Tues-Friday, but not as bad as cycle 3. Mum came over to keep me company on Tuesday and Wednesday and we sat in the sunny bay window with our laptops on our knees! I'd hoped to be better by Friday, but my stomach was still sore, and not much better today. Feeling blue, despite the sunny day and Jan's birthday party to look forwards to. I'm fed up of being ill now and ready for it all to be over! However, I have now made it  through the 4th cycle. Four more to go...

One of the strange things about being ill is the lost time. I've now spent days sitting in the bay window, resting, reading, playing solitaire! It's a kind of listless limbo while I wait to get back to normal. Some days I've done bits of work on the laptop for Keith, searching for teaching resources, and typing up handouts and cover-sheets. Other days I've hardly even read a few pages.

I was inspired a few months ago by watching Jane McGonigal on TED talk about how she used a game to help her get better from an illness. She has then gone on to set up an online 'game' to enable everyone to try it out too! Basically, you get 'points' for doing things that help make you better - ie contacting friends and family, exercising etc even when you don't feel like it. I've signed up and it seems good (also a gentle distraction when I'm not feeling great!) I don't have many points yet, so if anyone wants to join in and help me get points you can be one of my allies - go to www.superbetter.com  and  take a look at the videos. Email me if you want to be an ally!

My next treatment date is 17 Oct and I'm likely to be poorly the week after so if anyone wants to phone, email, send chocolates (!) that would be a good week to do it!

Treatment 4/8

Half way there! The treatment went well today, except that i lost one of the steroids under the fridge! Managed to get another at the hospital though. I wasn't really looking forwards to today after the rough time I'd had last time, but it could get better as i get used to the drugs. They have given me some strong painkillers just in case i need them, and mum has offered to come over and keep me company again! I have extra anti sickness drugs in case, like last Saturday, it starts up again. The feeling sick didn't manage to spoil the lovely day at the birthday party though. Sometimes i just have to do things and be ill, can't just stop and wait till it's all over.

I've had lots of really good support from family and friends, cards and emails etc, and it really makes a difference, so thanks to everyone :-)

Solitaire

This week hasn't been too good. I had a good rest on Monday and was expecting to be fine and back at work on Tuesday, but started to feel ill Monday night. I didn't sleep and by Tuesday morning felt worse. Mum had agreed to come over and look after me, so I phoned and she came Tuesday afternoon. I didn't feel like doing anything at all, so we sat on the sofa, in the sun, and played solitaire on the Asus! I was a little better on Wednesday morning, so mum went home after lunch and I had a nap. Thursday I was able to move around a bit more, and started to feel more alert so planned to go back to work on Friday. However, Friday morning shower and hair wash was too much for me and I stayed at home to rest again.

The treatment seems to be affecting all of my body, and it's not like an illness where you are in pain in one part of the body and it then goes away. The various pains and feelings change and there is no regular pattern. Here is the (full!) list of what I have experienced this week:

Swollen and painful glands in my neck, head, chest, underarms and groin. Normal painkillers didn't work, nor did stronger co-codomol.
Aching lymph (I'm assuming the pain was coming from the lymph 'veins') in my upper arms and thighs
Painful joints in my shoulders, left wrist and right hip
Pain and bloating in my stomach and abdomen
Constipation and then the opposite! (And, for those interested, the darkest, strongest smelling urine!)
General feeling of weakness and tiredness
Not being able to sleep - feeling wide awake and feeling too uncomfortable to rest at night
Tingling and numbness in my tongue, fingers and toes
High pulse rate - I could feel my heart racing even when resting
Light-headed and dizzy after standing for a few minutes
Feeling sick and no appetite
Sudden stabbing pains in the middle of my back

Some of these effects of the treatment are what I expected but every person reacts to the treatment differently. Ian says that I am very sensitive to the treatment - I hope this means that it is working exceptionally well too!

Planning

I keep hoping that a pattern will emerge and I will know when I will be ill, but no! After the last treatment, one of the few side effects that hadn't yet got me finally caught up with me. Thursday I was very tired and dozed and slept most of the day, fortunately started to feel better in the evening and so back at work on Friday. I had planned a busy weekend with 2 BBQs and a trip to an arts festival and managed to do all I wanted, but I was very tired on Sunday but couldn't sleep! So had a day to rest at home today. In the past, the few days after the treatment have been the best and where I have felt most energetic.

Fortunately, most of the other side effects seem to be less severe, so my mouth is not too bad, and my digestive system seems to be coping! My hair loss seemed to have slowed down, but then another lot started to fall over the weekend. People keep reminding me that I have a lot of hair, so it might just last!  

Treatment 3/8

I met Ian at the clinic yesterday to review my blood test results and all seemed fine. They check to see how my white blood cells are doing. The chemotherapy attacks them but if they get too low I will be at risk of infection. Mine were low, but not too low to go ahead with the next round of treatment. It's a tricky balance to get right!

Had the third treatment session today and went well! The drugs all went in fine and fairly quickly, not much waiting at the clinic for the rest of my drugs to bring home. A lovely sunny day so I walked home from the hospital in time for lunch! Sarah and the children came over and we all went to the park - a marvelous afternoon!

I have extra and different drugs for the various side effects, and hopefully, they will work and I won't be as ill this time round. I have already planned a busy weekend ahead so I'd better be OK!

Next session in 3 weeks and I will be half way there!