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.

Neutropenia and immunocompromise

The few friends and colleagues I've explained this to have suggested I spread the news more widely, so here's a little post about one of the biggest risks I face over the coming months while I'm going through chemotherapy. As I mentioned in my last post, the chemo drugs attack rapidly dividing cells (such as cancer cells) and while the cancer cells can't repair themselves very well, the healthy cells in your body (which also take a battering from the chemo) use the three weeks between treatments to rebuild themselves and recover as much as possible. As well as the hair follicles, the cells in my bone marrow and blood are also being attacked. As the chemotherapy medicines damage the bone marrow, the marrow is less able to produce red blood cells, white blood cells and platelets. The most significant impact is on my white blood cells, or neutrophils, which are your body's first line of defence against germs, viruses and infections. Because the chemo is attacking my body's own defence system, I am what is known as 'immunocompromised' during treatment, which means I have a suppressed immune system.

But this doesn't just mean I may have the inconvenience of catching a cold or cough. This is actually a potentially life-threatening situation. If my neutrophil count goes below a certain critical level, I have what is called neutropenia, or neutropenic sepsis; I will not be able to fight off a virus or infection, and will require urgent treatment should I be unlucky enough to catch something. I have been told that if this happens, I need to immediately go to A&E and will be put on intravenous antibiotics, and probably also have a blood transfusion. Not only that, but I have a special card that I have to carry around at all times, kind of like an A&E Platinum card, which enables me to bypass the queue for treatment should I be unlucky enough to end up in the emergency room.

Many of the women I have chatted to in my various support groups have ended up with neutropenic sepsis at least once during chemo, some being hospitalised for a few days. So I've been bracing myself for it to happen at some stage during treatment. As treatment progresses, it becomes more likely, because the chemo is cumulative, so my neutrophil count is getting lower and lower as I go along.

Each chemo cycle I have my blood tested a couple of days before I go in for treatment, and they will only proceed if my counts are good enough. If they are too low, I will either get a lower dose of chemo drugs, or they will delay. My first bloods (back in mid-April) were:

Neutrophils: 4.4
White Blood Cells: 7.1

My second lot in early June were:

Neutrophils: 3.7
White Blood Cells: 6.1

And my third tests just before the last chemo were:

Neutrophils: 2.6
White Blood Cells: 4.5

As you can see, the neutrophils and white blood cell counts are slowly getting lower and lower each time. Immediately after chemo they are very low: in the 5-8 days following chemo I am at much greater risk of neutropenic sepsis, and then as I eat well, sleep well, look after myself and my body heals itself, the counts start to climb again and stabilise as much as possible before I have my next treatment. If my neutrophils go below 1 it means I am at a critical level, and if they are lower than 0.5 I basically need to have a stay in A&E.

Now I've always had a great immune system, I rarely get ill and I am quite cavalier in my approach to infection. I mean, I'm clean and hygienic, but I'm not obsessed or anything. Until now. Things are now very different. I am being very careful about what I touch and keeping everything very sanitary. As soon as I get in to work or home I wash my hands, and I'm carrying hand sanitiser everywhere. I am avoiding eating out, and if I do, I'm eating very 'safe' things (things cooked very thoroughly on a high heat, avoiding prepared salads etc). I'm making my own lunch for work every day, using my own crockery and cutlery, using my own water bottle all day, and avoiding food prepared by others. My colleagues are being amazing, they have had a 'spring clean' of their desks, they are all making sure the windows are open to let in air circulation and if any of them feel at all unwell they are staying at home, to avoid me catching anything. I've changed my contact lenses to dailies so that I don't have to put the same lenses back in my eyes each day, thus reducing the risk of infection. I never eat in public or put my hands or fingers in my eyes or mouth (it's amazing how much I used to do that!) and I never touch anything on the tube. I'm so much more conscious of small things now, such as other people on the tube coughing or sneezing, the wonders of a dishwasher for making sure things are really clean, the cleanliness of chopping boards and the joys of contactless payment for reducing my need to handle germy cash.

I'm also avoiding small children (aka germ factories) as they are some of the biggest risks as I go through treatment. When Tanai had a cold last week he was quarantined on the couch and I wouldn't let him prepare any food (and no kisses for a week, torture!). Basically, I'm being very conscious of all the things I can do to reduce risk, and hoping that those around me are doing the same on my behalf. So thank you for avoiding me if you have a cold, and thanks for being understanding by keeping your kids away until I am no longer immunocompromised. Auntie Carmel will be back in service in a few months.

In other news, I'm on the mend after Chemo #3, and have been back at work for a couple of days this week. It was a tough round, this round, I had severe nausea and fatigue, yet couldn't sleep at all for about 4 nights, which made it very difficult. I was listless and had a fog behind my eyes for days, and the cognitive impairment lasted almost a week, until I felt I had a clear head again. Still, I'm over a third of the way there, and after my next chemo I get to have another ultrasound to see how much the lump has shrunk.

Back at the beginning of treatment I found out that a friend of a friend had named her lump 'Donald' and Tanai jokingly suggested I should name mine 'Theresa'. At the time, I was convinced she'd win this week's election by a landslide and therefore jinx my ability to get rid of my lump, so I declined. How wrong I was! Theresa was perhaps a more apt name for my lump than I had anticipated. Her strength is certain vastly reduced, how delightful.