Cancer survivorship course and lymphedema clinic

It's been a week since my second round of chemo and I'm doing well, despite not taking my steroids this time. As with last time, the first couple of days were fine, I felt well and had loads of energy. Then days 3-5 (Saturday to Monday) I felt pretty rubbish, the nausea kicked in and the fatigue hit me. Unfortunately, as I hadn't planned on this week being a chemo week (but my treatment was delayed) I had made quite a few plans. Lunches, coffees and dinners with friends and visitors from overseas. I soldiered on through them all, and then crashed on Sunday, exhausted. I tried to make it into work on Monday but the nausea was overwhelming, so as soon as I arrived I had to turn around again and come home. But by Tuesday morning I felt fine again and I have been doing okay since then, cycling into work, or walking home, trying to ensure my resting heart rate doesn't creep back up too much.

My hair is doing really well too. I'm loving my new hair style. A few strands of hair come out each time I wash my hair, but nowhere near as bad as the clumps that were falling out when I had chemo in 2017. I'm restricting myself to only washing my hair twice a week to minimise hair loss, so hopefully I'll get to the end of chemo with just a bit of thinning. I did keep all of my headscarves from last time I had chemo, but it's nice not to have to use them again. Although I have been wearing some of them as regular scarves, as they're so beautiful!

New earrings!

On Monday evening I started an online course on 'Cancer Survivorship' which I think is going to be interesting. It's from 7-9pm on Monday evenings and we all join each other from all over the country via Zoom, an online meeting software. It's for people of any gender, age and cancer type, and includes participants with primary and secondary cancer. It has four main components, focussing on our psychological, physiological, immunological and emotional health. It's run by a passionate, knowledgeable and enthusiastic guy called Sam and he has run this within the NHS before, and many times online. It's evidence-based, but also rooted in positive psychology and influenced by ayurvedic medicine. He cites some incredible case studies to back up his advice, and over the next few weeks we will gain lots of knowledge and techniques, which I'm looking forward to. The intro session laid the foundations, focussing a lot on positive psychology, and how we can use our minds to determine some incredible physical outcomes. I think it will be really useful, I'll keep you posted.

Joining the class

This week I also had my appointment at the lymphedema clinic, where I saw a nurse who gave me some advice about the swelling I now have around my pelvis and abdomen following the removal of my pelvic lymph nodes. She has taught me some 'MLD', or manual lymphatic drainage, which is basically where you perform massage on various parts of your body to encourage the lymph to drain and reduce swelling. She also gave me some kinesiology tape, and showed me how to stick it from my back around to my stomach, so that it massages my lymph around my body while I'm walking along. She has also ordered me some compression tights which should help, and she told me to buy some cheap spanx-type shorts to create more compression around that area. LOL. I also have to get a gel cover for my bike saddle to protect my lady parts from problems caused by my surgery. She said that you can pay to have manual lymphatic drainage done privately by experts, but that it's better to try to get someone to teach me techniques so that I can ensure I'm doing this frequently and getting maximum benefit. 

Tanai heads off to Colombia for 3 weeks on Wednesday, so I'll be home solo for a while. I've got a few little bits and bobs planned but I'm hoping to have a relaxed summer and continue to recover from my surgery and build my strength.

Chemo delays

I was supposed to have my second round of chemo last week but it was delayed and I ended up having it yesterday instead. I went to see the oncologist last Wednesday as usual and all seemed fine. I reported my side effects from the first round to him, and then we discussed various things. Firstly, I asked if I could skip the steroids this time. I'm convinced that the majority of my side effects are from the steroids rather than the chemo, and they just make me feel like crap. He said their only use was anti-sickness, and I have plenty of domperidone which are my regular anti-sickness, so I should be fine to skip them. He prescribed them for me just in case, so I can take them if I feel I need to. Then I asked if I can have the GCSF injections, which are the ones I took last time I had chemo to boost my neutrophils. He said to wait until next time, which kind of pissed me off as I feel that now is the time to start taking those, and aren't they cheaper for the NHS than a trip to A&E? But sometimes you just have to accept no for an answer. Next up I mentioned that my pelvis is still quite swollen post-op and I'm a bit worried about it. He examined me and said it's just a regular oedema and it should go away, but to keep an eye on it. I might go and get a second opinion. Finally he informed me that the results of my kidney function tests were in, and the good news is that my dose of carboplatin chemo, which was 790mg for the first round, will only be 450mg from now on! This is great news, as it's almost half of what I had before, so should mean I get reduced side effects.

So I trooped up to the 7th floor the next day feeling chipper. I'd made a picnic lunch of gimbab (Korean sushi) for me and Becky, who had taken the day off work to come with me. Unfortunately when the nurses called me in, they said that my platelet counts were too low. They need to be at least 100 but they were only 62. They took some more blood and sent me home, saying they'd call me in about 3 hours and if my bloods were good, I'd have chemo that day, but if not we would have to delay. So Becky and I went back to my flat (I'm so glad I live so close by!) and made some of her famous granola (it is incredibly delicious, hit me up for the recipe if you like). And ate lunch and sat and chilled. Eventually I got a call from the nurse saying my platelets were no better, and actually my neutrophils had dropped to 0.9, which is in the danger zone, so I needed to come back to the hospital to pick up some GCSF injections (vindicated! I was right in the first place, Mr. Oncologist!). They wanted to push chemo back to Monday, but I insisted that they push it back a whole week, to the following Thursday, so that it didn't disrupt my life too much. I know that treatment is important, but I'm also trying to get on with my life, and I didn't want the entire working week to be written off. Becky was incredibly gracious about it, and said she enjoyed hanging out and the day off work was not wasted (thanks love!). And I tried very hard not to get upset about the delay. This will push my entire schedule back a week, so I won't have my final chemo until September now. Fingers crossed there will be no more delays.

 Becky's amazing granola

I googled how to increase platelet counts, and got lots of advice about eating papaya, pomegranate and pumpkin, as well as brocolli and leafy greens. I've enjoyed quite a few pomegranate smoothies in the intervening week.

Wonderful medicinal papaya

Medicinal fruits

So yesterday my friend Rima came with me to Bart's, and my platelets were a stonking 173! Happy times. How amusing to be so jubilant about receiving chemo! We had a very chatty Portugese nurse and we wiled away the time with great chats ourselves. It's such a fab opportunity to catch up with friends, if a little strange for them to come into that environment. I'm so used to it now, Bart's is like my second home, but I suppose it's all a bit alien to someone who isn't in 'the system'. We came home in time for lunch and then Rima went off to do some work and I napped for a couple of hours. Then we went out to see a talk at the Roundhouse, and I managed really well. I'm feeling pretty good today, the nausea is low and my energy is good, but the side effects didn't really kick in until the weekend last time so I'm bracing myself. I made quite a few plans for today and tomorrow, thinking it would be one of my 'good' weeks, so fingers crossed I'm okay.

Administering my GCSF injection

My ever-expanding diagnosis list in medical lingo

Tanai has been away this week in Canada at a conference, but he arrives home tomorrow. It's great that I have so many fabulous friends who can help me out in the meantime, but also to give him a break. My next chemo appointment is Thursday 4 July, so with luck, there will be no dramas in the meantime.