Hangover III

It’s the third day post EC number three and I’m still feeling waves of nausea. Feels like a massive hangover with all the typical hangover symptoms: light headedness, dry mouth, slight headache, nausea, craving for strong tasting foods, tiredness, no motivation, etc. This is definitely the most nausea I have felt since treatments began a few weeks ago. Last time feels like a breeze compared to this.

Still grateful it is only that and no more. My right arm has started to feel better and the vein pain that has been there the past couple of weeks seem to have eased a little. It’s still sore when touched but not as bad when I stretch my arm.

The third session took place on Thursday morning last week. Despite having just got rid off a cold, my blood results came back very good with white blood cells at 6 which is higher than all previous times. I asked the nurse about vein pain and whether things are set to get worse with more infusions. She said that it might not necessarily be the case. In light of things, she looked for a vein further up my arm and at first hit a vein valve. Ouch! On second try, we found a suitable vein on the inside of my arm. I asked for a heat cushion and extra hydration to be flushed through my arm after the drugs this time round.

Once the cannula was in, a friend of mine who was with me for the session, got up to go to the restrooms. A minute later I heard various screams: ‘Can we get some help here please!’ Sounded like a patient was having trouble. My nurse also left me and ran away to see what was happening. After a couple of minutes I heard my friend’s name mentioned, so I got up to see what was going on, only to find that she had collapsed. Collapsed on the floor with six nurses and doctors around her. I couldn’t help but laugh…. She was alright of course, had just passed out probably due to it being quite warm in the place, unfamiliar sounds and sights, lack of breakfast etc.

With that emergency tended to, it was time for the cold cap. So f… ing cold! Apparently around -4 degrees. Feels like it’s colder each time, no doubt due to the hair thinning on my head. I closed my eyes and imagined myself on one of my favourite beaches, with the sun beating down on my head, burning my face, my body, smell of sea salt in the air etc. and after 10-15 minutes it was bearable again. This time round, we changed the size of the outer cap to large for some reason as medium didn’t fit. I hope the coverage was as good as the previous times. I tied a scarf around the cap as per previous times to enhance the fit.

I think it’s fantastic that the cold cap was invented and introduced into the system but have to say there’s a massive design flaw. At least for me, the fact that the cap only tightens via a strap that rests under your chin really doesn’t help with fighting nausea. It sits very close to that particular point between your chin and throat that stimulates vomiting. I wonder whether this might be changed in the future.

I actually started feeling mildly nauseous during the infusions, which is a first.
At some point, the doctor on duty for the day appeared and asked me how things are going. The conversation felt so wrong on many levels and went something like this:
“So how have you been? Any side effects since the last one?”
“Aside from a bit of nausea the first couple of days, nothing no.”

“So no bone pain?”

“No”

“No temperature?”

“No”

“No stomach ache or other pains?”

“No”

… and he listed a few other side effects. What a way to conduct a conversation. I know he meant well but he could have just stopped after his first question and my answer surely. All I kept thinking was, please keep all those side effects to yourself and take them out of my space!

After a good few hours, it was a massive relief to take the cannula out and get the cap off my head. We made our way home and as per previous times, I spent the rest of the evening feeling very drowsy, eating bits of dry cracker and drinking lots of water. I slept well that night and woke up to a little more nausea despite all the anti-emetics. Had a big breakfast with muesli and fruit and spent most of the morning doing bits of work and relaxing on the couch. Around lunchtime Mati and Rav came round and it was good to be in easy company for a few hours. We just chatted on the couch, had lunch and lazed about. Similar to previous times where cravings included pizza and Thai food, I managed to eat a massive portion of Lasagna which they brought from the local Deli. Somehow eating seems to ease the nausea slightly. In the meantime, my aversion to fish/ seafood seems to continue. Shellfish just about seems okay.

I was supposed to meet an old friend from school this weekend but just haven’t felt up for that. Hoping we can catch up later this year. It seemed that most conversations actually took a lot of effort. In fact everything took effort. I finally managed to leave the house yesterday to drag myself to Waitrose to stock up on food and drinks. It was freezing cold and windy but it was good to walk.

I woke up this morning feeling a touch better but still sluggish or unenthusiastic may be a better word. There doesn’t seem to be quite a matching word for ‘Lustlos’ in German. I’ve resigned to taking the steroids this morning to see if they make a difference to the nausea. I reckon it’ll be another quiet day today and a short walk later and hopefully this massive hangover will shift soon!

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Time flies

Two weeks post second cycle, hard to believe the third one is just around the corner next week. I’m continuing to feel good both physically and mentally aside from a bit of toothache, a cold and some lower arm pain. Having avoided coughs and splutters on tubes and in offices for this long, I woke up with a cold earlier this week. Annoying but it’s just a sinus cold it seems – no sore throat, nothing much else which is good. As for the toothache, my dentist recommended having three fillings done and since I was feeling good, I thought why not now. Little did I know that he initially hadn’t filed the area down properly and so after chewing on it for a few days with the ‘wrong sort of bite’, I now have quite a sore tooth. Hope that’s all it is and hope that it passes now that he worked on it some more.

As for my lower arm, I’m waiting to speak to the oncologist to see what the score is. The pain started about a week after the last treatment and is a sharp sensation on the inside of my lower right arm. Since it hurts more as I stretch and move my arm upwards, I thought it must be muscular. It also seemed unrelated to where the drugs had gone in towards my wrist area. I have not been going onto the MacMillan Online Community Site as much lately for the one reason that I wanted to focus on me and what was going on with me, rather than read about all the various other things that could be going on in terms of side effects. I wanted to cut out the fear of ‘what if this or that happens’. I have to say though that the ‘chemo club’, which is a monthly thread of people posting, asking and sharing their experiences, has been a useful platform and a great chance to ask questions, get support and support others.

A little concerned that this arm pain is related to some kind of vein damage/ irritation. So I asked the question and it seems that others have experienced similar things and I’ve been advised to keep an eye on it as an uncommon side effect of the epirubicin is apparently blood clotting. Urgh. It could happen that if the E wasn’t diluted with enough saline when they put it in or it could just be a reaction to the drug rather than vein damage. Let’s hope it’s just a bit of irritation and that we can dilute it more next time round. Not really keen on having a PICC line fitted now that I’m half way through the process without one. In fact, someone else at work mentioned that they knew someone who had this pain due to the veins not being ‘hydrated’ enough. I’ve asked for a call from my oncologist this afternoon so will take it from there.

I met with my breast surgeon for my 3-weekly follow up yesterday and she’s happy with the way things are. She also reckons that since I managed to keep my hair up to now (or a lot of it) that I will probably keep it throughout. Let’s hope so. Still have quite a few strands falling out every day but nothing too drastic.

We discussed the reconstruction in a little more detail including the timing, which looks like it’ll be around mid/end April. I can’t wait to have the temporary implant removed and most importantly the irritating port on the side. I’m really looking forward to traveling again once the treatments are done. Making plans to be in sunnier places and to have some fun in the coming weeks and during the summer!

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Run run run

Kicking the weekend off with a 5km run earlier this morning in the gym. Managed to shave 3 minutes off the last run and on day 8 after chemo and managed 30mins and a few seconds. Feeling good! Looking forward to some warmer temperature so I can run outside again!

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Normality

Day 6 post EC cycle number two and I feel like things are back to normal again. I’m still slightly more tired than usual but the tiredness seems to come in waves, just hits you at different times and then disappears. Very glad also that my ‘down-day’ was just a day. I don’t think I’ve ever experienced anything like it before, and since I’m not someone who has mood swing, I definitely blame the drugs. Whether that’s the chemo drugs or the small dose of steroids which I took for two days. Someone on a forum mentioned that the latter drugs produce a high and of course a low once stopped too. In any case, glad that’s over with! I woke up on Tuesday feeling much better!

With my mood back to normal, I decided to head to the hairdresser to have him assess ‘the damage so far’. I’ve known Craig for years and see him every 2-3 months, so he knows my hair well. Most of my friends make fun of me having a trim every couple of months but they don’t realise that for curly hair, even a tiny bit cut off makes a huge difference to how curls bounce again. He looked through my hair, especially the back of my hair and said that there were definitely no bold patches. If anything, my hair has thinned by around 20% but with no obvious gaps. Most of the thinning is at the back towards the lower end – I guess where the cold cap doesn’t fit/ reach. I was SO relieved to hear that. I can definitely feel the thinning and have less hair than before but it isn’t noticeable. I thought about maybe cutting my hair shorter to take some of the weight off. This wouldn’t be my choice but just a practical decision. He advised against it, simply because curly hair doesn’t ‘weigh’ much anyway and it doesn’t show any hair loss right now. So I had a trim as usual and walked out feeling happy.

On the subject of hair, I had an appointment at the LOC with one of their hair & make-up consultants who suggested having a couple of wigs on hand just in case. When we met, she said she was hopeful that I wouldn’t need them after all. Fingers crossed. Very odd touching and looking through synthetic hair, choosing colours etc.

My appetite seems good these days. I still have a distinct aversion to fish and the smell of fish. I love seafood and fish – hope this is temporary. At the moment, I can’t even stand the thought of fish. Instead, I have a craving for hearty, rich foods. I ate my own body weight in Lebanese food at lunchtime and seem to be hungry a lot of the time. Also a craving for sugar, which is unusual for me. All in all, apart from a one-off bad mood, tiredness and certain food cravings, no side effects. I’m looking forward to more normality in the next few days and weeks. So grateful! And the day ended with a freezing but stunning sunset earlier.

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Stuck in reverse

“When you try your best, but you don’t succeed…. When you get what you want, but not what you need… When you feel so tired, but you can’t sleep…. Stuck in reverse…And the tears come streaming down your face… When you lose something you can’t replace”

Great tune by Coldplay, especially the live version – and very apt for how I felt today.

Up to this morning I’d been feeling well – maybe a little tired but definitely not as nauseous as last time. I spent the weekend in lovely company, felt very looked after and  relaxed. I had a few tiny waves of drowsiness on saturday but made sure I stayed indoors and didn’t move much which helped. I then cut out any anti-sickness tablets yesterday (day 3) and had a good appetite. For some reason I’d been craving thai food, specifically to Tom Kha Gai chicken coconut noodle soup – as well as pizza. The strange food cravings were already familiar from last time and so was the odd, dry taste in my mouth which no water in the world can solve.

Went to sleep last night with the storm battering around the building and woke up completely disillusioned. I don’t think I’ve experienced this before. It was a mixture of being really fed up with everything and everyone (for no specific reason), feeling low energy with absolutely no interest in anything. Being grateful for no physical side effects  but fed up not feeling myself, of having drugs inside of me that work at whatever points that I’m not even aware of, tired of finding hairs on the floor, tired of the work that goes into keeping upbeat, tired of the pain on the side of my left arm (which I’m sure is caused by the chemo) etc.

I had originally planned to head to Paddington and be sociable in the office but just couldn’t get myself to go. So instead I started work with a million of things to do, silently swearing at this and that, like someone with Tourette’s. And it just wouldn’t shift. I’ve read from others that the drugs may cause hormonal imbalance and maybe this was one of those days. Everything and everyone was irritating and nothing seemed fair of course. Just as well I stayed at home.

At some point in the afternoon, I headed to the gym to try and shift my mood. Exercise is always a great companion for these things and 5km later, I finally felt empty. At least empty and not full of frustration and with a slight sense of pride for completing the run in 33.5mins. Craving thai food again – might have to make some stir fry, watch a movie and have an early night. I guess it was just one of those days.. I blame the drugs! Here’s to a brighter day tomorrow with a glass at least half full again please!

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Half way through

I completed session 2 yesterday and the actual session seemed a little harder than the first one while the immediate after effects during the evening were definitely lighter. Also seemed like a longer day as we arrived at 12.30pm and left around 6.30pm.

A lovely Irish nurse was assigned to me and of course I quizzed her about a whole range of things from hair loss to side effects to drug dosage etc. We started off with the cannula and it took her quite a while to get into the vein. Ouch. So after probing around for a bit, it was finally in and I’m still very happy that I chose this process instead of some permanent PICC line, even if it hurt a little. Next up she took some blood to see if all is good to proceed and put a bag of saline into the drip for hydration. Blood tests came back all fine with white blood cells at 4.9. They were 5 before cycle one of the chemo, so all good. Interesting though to see that at the time they call the ‘major dip’ the count was 12.9 – clearly instigated by the injection to boost white blood cells 24 hours after the chemo. So my normal, natural value is around 5. I’ve been told to give myself the same injection again today at 3.3pm.

Then it was time for the ice cap and wow – it was painful this time round. I think the fit was slightly tighter  (mainly due to me wrapping an extra scarf around it as well which made me look like a ninja fighter). It also felt like the cap sat lower down towards the forehead. I was prepared for the first 10 minutes but these first 10 minutes were much worse than last time round. I almost ripped the whole thing off within minutes but then distracted myself, talking with Mati and with thoughts of warm sunshine on my head.

After around 10 minutes it got easier again but never quite as easy as last time. The nurse said it could be a number of reasons including general state of emotional or physical strength (tiredness etc.). She then injected the red epirubicin slowly over half an hour and I visualised sweet, sticky fruit juice going into my veins targeting only what it has to and leaving the rest of me alone. A little while later, the cyclophosphamide followed over half an hour through a drip and we were done. Apparently they upped the dose of the cyclophosphamide due to a slight increase in my body weight – from 59k when I started to 60.4kg. Seems a bit odd for that little weight change but to be fair the dosage increase was minimal. I don’t think the weight change had anything to do with treatments as I can easily swing 2kgs up and down within a week depending on the amount of exercise and the type of food I eat. This week’s food intake leading up to treatment wasn’t exactly the best. Aside from daily juices, quite a bit of junk food at work events (greasy fried chicken, chips etc.) which I didn’t really have much choice about.

I asked about drowsiness I had last time round and whether or not some of the anti-sickness drugs could have been causing that. Their answer was that it’s likely to be from the chemo itself. I have a feeling it’s probably a combination of that and the frozen head from the cold cap.

Dr. Cleator popped in for a few minutes to see how I was doing and we chatted briefly. I also met a lovely woman who was sitting across from me with her daughter. She must have been in her 60s and her daughter a little younger than me. They’re both from Malta and travelled into London yesterday just for the treatment and were flying back the same evening. I think the last place I would want to be in straight afterwards is on a plane but maybe her medication is different. We talked about travel and Malta and they showed me some guides from the in-flight magazine. They then shared their contact details with me and asked me to look them up if I ever visit Malta and they would show me around. Very sweet.

Journey home was pretty uneventful apart from the usual London transport shenanigans. Similar to last time, as and when I got home I started to feel more drowsy and slightly nauseous. But nowhere near as bad as last time. Instead, I had a headache, very heavy eyes and a super cold head and with that a cold nose and slightly cold feet. I put that down to the cold cap. Managed to eat a bit of plain pasta and a few crackers before going to sleep. Slept pretty well and woke up feeling fine, slightly tired but good energy and some appetite. It’s now 1pm and I’m still feeling fine. I took the anti-emetics cocktail with breakfast as a prophylactic measure more than any other reason as I haven’t felt nauseous today. Long may it continue! Feels good to pass the halfway line!

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Session 2

Did you know it’s World Cancer Day today? I had no idea.. stumbled upon it by seeing a social media post yesterday. These sorts of days typically come with lots of stats and this one is no different of course. Apparently cancer death rates in the UK have fallen by almost 10% the last decade, although the number of cases is still going up. Good to have this kind of awareness campaign and encourage healthier lifestyles, cut down on stigmas and get people thinking. One of the articles that came up while I was reading on the topic was this piece- unfortunately in the Mirror of all places- but still an inspiring read: Four cancer victims strip naked to mark World Cancer Day – and tell their stories of survival.

Today also marks the day of my second chemo session which starts in a few hours. It seems a long time ago since my last time and I’m glad that aside from the first three days of queasiness, the past three weeks went by uneventful and with me feeling great. The difference now is that I of course know what to expect in terms of the process. While it does take away some of the anxiety, I don’t think it changes the nervousness around the ‘unknown’. How will I feel? Will it be the same? Will it be worse?

I started the day with a short Deepak meditation on ‘perfect health’ – my favourite session which guides you to different parts of your body and encourages you to be thankful for all the things these parts perform for you, etc. I’m also going to be listening to the hypnosis audio to try and prep my body to deal with the drugs as best as possible.

On the hair front, a few strands are still coming out every time I gently run my hand through my hair. I wonder if this will continue like this or at some point stop. I’ll have a conversation with the nurses and see what they’ve witnessed from other people. I’ll also see if some of the anti-sickness drugs can be changed or lowered or whether they were making me drowsy last time round or whether it was the chemo, the cold cap or whatever else.

I’m glad my friend Mati is coming with me to keep me company. I had all these intentions of reading, working etc. last time but ended up just talking to Lucy or just sitting and meditation. A part of my meditation today will be a visualisation of a beautiful beach, with the finest white sands, most turquoise waters and the feeling of warm sunshine on my skin.

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