In betweemo - what to expect between sessions

This should be a pretty straightforward post. I want to describe my time between chemo sessions, and ideally offer some advice to others who may be on a similar plan. Being on an accelerated trial I have almost identical time in and out hospital, on and off of chemo, being pumped full of poison and then recovering. Don't get me wrong, I volunteered for the trial and was overjoyed when I was randomised onto the accelerated version rather than the control group. Yes, it's more intense, but I can't help but feel the chemicals are allowed to do their thing in faster succession. It also gets me done with long inpatient sessions and onto an outpatient basis a month earlier. I suppose the final thing I should point out is that I'm halfway between sessions 2 and 3. So with that in mind, here's what those blink-of-an-eye weeks between sessions are like.

 My very own 1918-1939

I should caveat upfront that I am incredibly lucky. I have my own home, I have dedicated, loving parents who live an 8-minute drive away, I am surrounded by friends and family, and my work have been completely supportive throughout. I have a FANTASTIC support network. I can only hope that anyone needing to read this for their own preparation has similar resources, but if not, I beg you to reach out to the many charities and support agencies out there. The ones you can find at your treatment hospital (Macmillan, Maggie's etc.) are brilliant and can plug some of those gaps if you aren't quite as mollycoddled as I have been.

Side effects

Right, so what's it like between chemo sessions? In my experience, I feel the symptoms slightly harder in betweemo than during. Not for the whole period, but certainly for those first 2-3 days back. During chemo I'll basically sit there and let the potions flow (I'll get round to posting specifically about chemo idc), but once I get home and am off the chemo, that's when the side effects will start to kick in. Rather than a stream of prose, I'm just going to list every symptom I can recall and some options to counter.

Fatigue

Whilst I'm grateful to be able to sleep pain-free again, I think I might finally have reached the point of exhaustion where sleep would just come. I often find myself dozing off during the day if I'm just sat there relaxing. I get up quite early (before 0600 - I think I'm stuck in hospital mode) but after coming downstairs and grabbing a snack I'll usually fall asleep on the couch for another hour or two. My advice? Take it. Wherever you can. Have a blanket nearby and do what you can to be comfy so that if the sleepy bus comes you're on it.

Nausea

Nausea. Probably my least favourite side effect, I've said before that I don't deal well with sickness. I've not had it bad enough to actually be sick, but the nausea is a near-constant feature. So what helps me? 

• Herbal tea really settles me. I prefer making it with fresh ginger, mint, lemon and honey. More accurately, I prefer someone making it for me as described.
• Plain, dry biscuits. Gingersnaps, sesame, Nice, digestives - all seem pretty helpful.
• Eating. Seems counter-intuitive, but often a nibble is enough to settle a shaky tummy.

Mouth/throat soreness

• Difflam spray. Can be purchased OTC, though should be free as an NHS prescription to cancer patients. It's basically a mild anaesthetic you spray into the mouth. Doesn't taste nice but not gag-inducing, and it helps to numb the sore areas for a while.
• Check for infections. Your mouth will be prone to infection, and it's imperative to get on top before a small infection becomes an open sore. Seriously important. Keep an eye out for blisters, sores and whiteness on the tongue. Whiteness will likely be a sign of oral thrush or some other infection, blisters and sores are where you probably need to get in touch with your key worker or A&E.
• Antibiotics. You can get a prescription for fluconazole which should help clear infection, or as in my case, was used more as a preventative when I was looking particularly susceptible.
• Diet. There are several aggravating factors, and diet can be one. As you'd expect I was advised to avoid foods that were particularly spicy, acidic, salty - in short flavourful. I promptly ignored this advice. Life without chilli is no life for me.
• Toothbrushing. If soreness becomes an issue, you may find it helpful to use a children's toothbrush and toothpaste (or at least something low fluoride).

Appetite

I have found my appetite to be almost insatiable. I've always loved food and had a healthy yet boundless appreciation for it. My normally routine usually allows me to justify about 2,600-2,800 calories/day. When I was initially hospitalised the nil by mouth periods (and I assume the cancer?) caused me to lose a lot of weight rapidly, about 10kg in under 2 weeks. My appetite took a while to recover, I guess as my stomach contracted throughout the periods of enforced fasting. When I started chemo however, my appetite came back with a vengeance. I eat constantly. I would say I have a similar calorific intake to what I had before all the cancer. Though I don't like the visual weight gain (not helped by steroids), I have family and nurses often reminding me that these food-loving days may not last and I need to take advantage of every chance I receive to build strength. So yeah, carte blanche to gorge myself. I try to manage this by maintaining some training routine, and conducting food prep. I've put up a separate post for recipes, but here are my top go-to options:

• Noodles
• Fruit salad
• Dried fruit
• Smoothies
• Wraps/quesadillas

Hair loss

This is a big subject, and very emotive. I'm going to post a separate article about this specific phenomenon, but I'll drop a couple of tips here for free:

• When it starts falling, carry a little zip-lock bag. You'll find you can't stop pulling strands out, and there's nowhere appropriate to dump a handful of hair. Just bag it, if nothing else for posterity.
• It's your call whether to shave or let it come naturally. I couldn't stop pulling and was concerned I'd go patchy, so elected to shave mine. Number 2. It was long enough to cover my scalp..ish, but short enough that I couldn't absent-mindedly pull chunks out. It only lasted another 3-4 days before it really started to come out in the shower, and I still have a peach-fuzz layer clinging on, but my brilliant white scalp is truly on display.
• I found my scalp to be quite sensitive. Both in terms of cold and pain. What really helped was a soft, knitted woolly hat. I wear it a lot, even when sleeping!

Dehydration

It's very easy to become dehydrated, particularly when a huge part of one's role during chemo is to piss as much as possible to flush out the lethal toxins. I definitely suffer from dehydration, which I doubt helps things like my heart rate (see below). Simple changes help me to hydrate:

• Squash. Simple solution. Literally.
• Flavoured water. Cucumber, mint, lemon. Basically Pimms, but no fun.
• Herbal teas. Help with nausea and hydration. I also find mixing hot and cold drinks throughout the day encourages me to drink more.
• Decaf. I've long been a slave to coffee, and as much as I love one to start the day or a tea to dunk my biscuit in, switching to decaf seems a reasonable change to make. I do still allow myself a cheeky coffee each morning.

Tinnitus

Apparently this is a common one. I wouldn't say I've noticed hearing loss, though I'm pushing for another audiogram to confirm. All I've noticed is about 5-6 occasions each day where I'll get a high-pitched tone in one ear and everything else sounds slightly blocked out. It lasts for about 20-30 seconds, so I've been a little lax with it, but am definitely keen to prevent any hearing loss if I can.

Elevated heart rate

This one really bugged me, I think because it felt like a reflection of my fitness. My resting HR is normally around 55-60, so certainly not an athlete but easily fit and healthy. From my first days of chemo, my HR shot up, regularly sitting in the 90s, and sometimes the 100s. Just sitting up could send me to around 110. We're not entirely sure what is behind it but the doctors think this tachycardia could be related to anaemia, whereby my haemoglobin levels were so low my heart had to pump blood at an increased rate to get enough oxygen around my entire body. I rest, I meditate, I've even had a blood transfusion - no change. The one thing I will say does seem to reduce it is exercise. I do a short 20 min strength and conditioning workout with some stretching, and after recovery I notice my HR drops into the 80s or even 70s for a day or so. I also highly advise having a pulse oximeter to regularly monitor, as oxygen saturation and HR can be really useful info to pass on to your key worker team if you think you're having an emergency.

Heart burn/acid reflux

 Apparently another common one. Sometimes this manifests as hiccoughs, sometimes it comes with a tight chest, at other times I feel like I may need to burp or even vomit. In hospital, the nurses tend to give me Gaviscon (the liquid) but I hate it. More often than not, I'll opt for a glass of milk which really seems to help. I've also started carrying Gaviscon chewable tablets. They're a bit chalky on the palate, but I prefer them to the liquid by far.

There we have it. By no means a complete list, but possibly of use to someone who may find themselves in a similar position. Would love to hear your comments if you have other suggestions - I've got another couple cycles to go yet!