Current position: sat in the lounge with my iPad on my lap, wearing a mismatch of pj’s and activewear, hair scraped back and face bare (just used one of Ivy’s wipes to ‘cleanse’), watching The Wire (just finishing episode 3 and I’ve been reliably informed that it takes at least 4 episodes to get into…) with Ivy in her bouncy chair (who also seems to be watching The Wire = bad Mum), and trying to think of how to sum up the past week and put it into words.
After my treatment last week, I was expecting similar side effects to the previous one. Not to disappoint, my mouth started to hurt on day 3 and lasted for the same amount of time as before. Now I know this is a pattern, it makes it slightly easier to cope with. It is horrendous though, and makes me really grumpy – even drinking water is uncomfortable. Learning from last time, I started to use a straw earlier and also rinsed my mouth with mouthwash more regularly. The most annoying thing is the first few bites of food actually hurts, but if I persevere, the feeling eases off and I can actually finish a meal. I’m so glad this only happens for a few days, I think it might push me over the edge if it was constant!
The tiredness has also got to me this week. I had a busy weekend (supporting my netball team, friends birthday, sisterly Sunday brunch) and I definitely paid for it. The problem is that at the time I’m actually doings things, I feel ok! It is more of an effort than before but it’s fine, and I’d rather carry on doing things I enjoy than staying in and resting. The term ‘resting’ makes me feel like an invalid and I’m not quite ready to think of myself as that just yet. However, Monday came along and I felt like I’d been hit by a lorry. I popped round to my Mum’s and couldn’t keep my eyes open so had a nap on her sofa. I’m really aware of how other people may look at me now, especially if I show that I’m not 100% myself. It’s not like I put on a front for people, but I don’t necessarily go into detail. It’s trying to make the right decisions about what I can and can’t do: this has influenced decisions like opting to join friends just for a drink rather than staying out the whole evening, making sure I’m not in an environment where there are loads of people so therefore limiting contact with colds etc, and just playing things by ear and being honest with friends about it – over the past few years I have become more non-committal with plans (probably my old age haha) so I’m just continuing this ethos!
I had my first clinic review yesterday – aside from having ‘clinic review’ written on an appointment card I had no idea what it entailed. We walked into Ward 19 and it was jam packed – every chair was taken, people were standing around the edge of the room, and it felt really claustrophobic. Also, it makes you feel like there are germs everywhere and with the constant ‘DON’T PICK UP GERMS’ chant going round my head, it put me on edge a bit. There were also patients wearing masks over their nose and mouth, obviously to minimise the risk… I’m not sure that’s something I would feel comfortable doing, but I suppose it’s the sensible approach! I took a blood test ticket and waited my turn – I got called through to be weighed which is never good when you’re wearing probably the heaviest clothes in your wardrobe! This has to be done to make sure the dosage of chemo is still ok for my body mass as apparently some people do tend to lose weight due to loss of appetite etc… I haven’t had that problem. As a side note, when I was pregnant with Ivy, I made a pact with myself that as soon as I could, I’d be working out getting superfit and look like Wonder Woman. This has been put on hold for the foreseeable so the thought of being weighed is not exactly thrilling. The nurse didn’t even let me take my high-tops off! However, she did write (boots) next to my weight which made me feel slightly better. Next was my blood test and then back to the waiting room to wait for the consultant meeting. Paneesha, my consultant, had walked past a few times and waved a hello at me, Ivy and Mum, and I was looking forward to seeing him and catching up on how cycle 1 had gone.
Disappointingly, when I was called through, my review was with a different doctor. Where was Paneesha?? Whilst this new female doctor was nice enough, she definitely lacked the enthusiasm and positivity Paneesha oozed. Very matter of factly, she told me that my neutrophils (white blood cells or WBC’s) were lower than normal (normal is 1 or higher and mine were at 0.92) so she had prescribed me to have injections for 3 days following my next treatment. These injections boost the growth of WBC’s in the bone marrow and I’ve read that this can give an achy feeling throughout the body, not ideal. I was then asked ‘any other questions?’ We chatted about a couple of things but I felt the conversation was very clinical and stilted. After the conversation dried up, the doctor said that she’d see if Paneesha wanted to pop in and say hello, and knocked on an adjoining door. Paneesha appeared and immediately started smiling and shook our hands saying it was great to see us again. I instantly felt more at ease and was really glad that he had popped by. The doctor gave Paneesha a run down of what she’d said, and his reaction to the prescription of injections was quite funny… ‘Look at her, she’s fit, young and healthy, she doesn’t need these injections!’ Thank God! The other doctor was obviously put out at being undermined but I was so glad that I’d escaped those injections for now! What became apparent was the doctor was going by the numbers and textbook responses, whereas Paneesha looked past that and made a decision on me as a person and went with his gut. This suited me down to the ground.
One thing to look forward to this week was one of my good friend’s wedding! I couldn’t wait. Gina made an absolutely stunning bride and we had an amazing day – drank, ate and danced the day away, and I felt brilliant. Andrew was being my little conscience throughout the day… ‘Are you ok?’, ‘Drink some water’, ‘Don’t spend too much time on the dance floor’… My usual response was ‘I’m fine!’ but it’s good to know that I’ve got someone looking after me, even when I don’t think I need it! The prosecco and red wine was flowing and it was an unexpected treat when I didnt get a hangover! Ivy had her first sleepover at my Mum’s house and was very well behaved. This definitely means we can book her into Nana Jen’s hotel again. Leaving her wasn’t hard at all – I know some parents may struggle but I didn’t… Does that sound bad? I looked forward to picking her up the next day but I can honestly say I wasn’t worried or nervous about leaving her, and feeling like that meant Andrew and I could concentrate on the day and relax.
Next week I’m due to take Ivy to get her 8 week immunisations, and the doctor advised that I shouldn’t kiss or cuddle her for a couple of days after. I’ve called in reinforcements in the shape of Andrews sister, Alyson! I think this is a good call, not only so I’m not around anything that could give me an infection, but I’m also not sure that I’d be able to see the doctor injecting poor Ivy! She’s too little! It’s annoying how all these little things are being impacted by my treatment, but it’s just one of those things that I’ve got to be extra cautious about. I’m glad Alyson is coming over and I’m looking forward to having a fun day.
Cycle 2 starts Tuesday 10th October. Can’t believe one cycle has already come and gone, time is flying by. I’m feeling good, positive and looking forward to finishing cycle 2! xx