Blip

The 8 weeks since the last treatment seemed to go really quickly, even though I'd very nearly forgotten about being ill! Going for my blood test and treatment brought it all back though. When I met the doctor at the clinic I mentioned that I'd noticed what felt like a lump again in my groin and I was worried that the  lymph had swollen up again. He sent me for another scan to check. Fortunately, the appointment wasn't long -  just over a week - and I spoke to Ian today for the results. Although they don't know what I can feel (!) it is not a swollen lymph so no need to worry! A big relief all round.

When I was ill I really  missed being able to walk and cycle, so in January, as I started to get better, I took up running. Sue at work had recommended the Couch to 5K programme which is a series of structured podcasts that starts you off with 1 minute runs and gradually builds up to 30 minutes! I've followed the programme and have now finished week 8 and start tomorrow on week 9. I think I'm fitter now than I was before treatment! My hair, however, is still strange with bushy bits underneath and thin at the ends!

I went to a talk today at the university in the Science Centre by a visiting professor on Cancer - from cause to cure. It was a really interesting talk, covering the connections between environment, genes and age and how the different treatment works. The future for cancer is personalised drugs that take into account our own genetic makeup when planning the treatment. Hopefully, that will mean less toxic chemotherapy for patients.

Oh, yes, and I managed to finish my EdD assignment and passed! I start on the next module in May.

Maintenance

I had the first maintenance treatment 3 weeks ago and it all went well. Glad to say that there weren't any side effects at all! I'm feeling as well as I was before treatment - I've got back into piano playing and booked a few more lessons to get me back on track, I've taken up running and using the 'Couch to 5K' podcasts which are surprisingly good! I'll be back on my bike soon too! I had taken a break from my EdD course, but started that again last week and picked up my assignment that was abandoned part way through. My hair is re-growing but in a rather strange way - I wake up in the morning with it stuck up in all directions! Soon it will be its normal thick, straight self I'm sure.

It really is like childbirth - a few months later and all the pain and discomfort is forgotten!

Finally...

The last treatment was last week and the effects are just about worn off now. I was actually looking forwards to the last treatment and really looking forwards to it all being over. I had hoped that the after effects of this last round of treatment would be less severe than the others, but wishful thinking I guess! I've had similar aches and pains and my hair has had one last go at falling out, but finally feeling better this evening and preparing for work tomorrow.

Now that the chemotherapy treatment is over, I get 2 years of maintenance therapy. This is Rituximab injections every 2 (or 3) months which will keep the lymphoma in a dormant state. The Rituximab is the slowest to be injected, but has very few side effects so I should feel well. After the 2 years, I'm on my own! Hopefully the lymphoma will remain in remission for another 25 years... Even if it does return, they will only treat it if the swollen lymph are causing problems.

It's been a tough few months whilst having this treatment, but there are a few things that have been positive and I don't want to forget. The support from my friends and family has been really important to me and I really appreciate it. I'm lucky to have so many lovely people around me!

It's also much quicker to do my hair now and it's saved me a fortune in hairdressers!

Nearly there...

My review today confirmed that I will only be having 6 cycles of treatment, a big relief! However, my blood hasn't recovered sufficiently, so the final cycle of treatment is delayed until next week.

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!