Each time I have visited the oncology clinic I get weighed. I am not entirely sure why this. I know in theory it is because drugs are assessed on body mass but in reality this is not what happens. As a six foot woman I take the same amount of antibiotics or analgesics as my five foot three inch mother or the six foot three inch Captain. And sure enough, despite a steady weight gain throughout this process, my drug dose has stayed the same. Not that I am complaining. Well, not about the unchanged drug dose at any rate.
The weight gain, however, that is an entirely different matter. I have averaged a gain of two kilos per cycle. If this carries on I shall have put on twelve kilos by the end. Or nearly two stone. To put it another way, I shall be the size of a substantial dwelling. Think ship in full sail. Think barrage balloon. Think beached whale. I was not exactly thin at the start of this. The ‘comfy’ clothes I bought in preparation are no longer quite so comfy. That post chemo diet is beginning to look mighty attractive. Incidentally, I know there is little I can do about the weight gain. It is beyond my control. I am subject to appetite increasing drugs, food fads and altered taste buds which make the whole eating experience a real roller coaster. It is something I am resigned to. But I do not like it.
This is most unpleasant aspect of my visits with The Doc. This time we shared greetings from mutual friends, passed round photos of grandchildren and cracked jokes. We also got onto the serious business. He is pleased with my progress though still cringes with each side effect I describe and apologises profusely. He is thinking that post chemo, Anastrozole might not be the best option for me as I have been struggling with joint pain in this latest cycle. Of all the aromatase inhibitors, this one is the worst for joint pain so he is thinking that Letrozole might be more appropriate. And thanks to a family history of osteoporosis he might bung in a bit of Vitamin D and Calcium too. This is all good. Ideally I should avoid all of them but we both agreed that dying of breast cancer would be a far worse option so we would stick with the drugs!
After a couple of phonecalls he decided that the appointments that have finally arrived for the patch testing clinic (to screen me for allergies) need to be delayed until at least four weeks after my last chemo. I must confess to being relieved by this. The current dates are for the week commencing the 3rd October which is only 8 days after my final treatment. The thought of sitting in a hospital waiting room for three days that week was not appealing.
So that was that. I am cleared for the penultimate session. Goody.
This is now officially my ‘good’ week. Only I am discovering that my good week is becoming condensed into a shorter and shorter space of time. I do not much like this turn of events. I feel cheated. Generally I like compartments. It pleased me that this chemo malarkey could be neatly compartmentalised into three lots of one week: first week – yuck, second week – improving but still off, last week – good, well and generally on fair form. It is neat. Tidy. Structured. I like that. Well, not the feeling yuck bit or the ‘off’ bit but you know what I mean. Now, it is far more messy. My yuck bit is still predominantly confined to week one but my off phase has spread all over the place. It has rudely invaded week three and stomped its muddy boots right across it. Basically, I feel rubbish. And I am tired of feeling rubbish. Sick and tired of it.
I saw Ms Shrinker this week. I told her how tired I was. I believe I may have wept. This will have pleased her. Progress, she will think. She was lovely. I am very conscious that a great many people have a far rougher time on chemo than I am having but just now, I am finding it so very hard to cope. I mentioned earlier that the half way point did not fill me with glee. I still feel I have a mountain to climb. Ms Shrinker reminded me that it is not a competition. I do not need to measure myself against others. My experience is mine. Theirs are theirs. All are valid. Chemo is vile however you look at it.
My trip to Ms Shrinker finished with a visit to the Complementary Therapy team for a spot of foot rubbing. Which was a little bit of heaven. I left with two wee roller ball oil thingies: one for fatigue (grapefruit and bergamot) and another for sleep (blue chamomile and lavender). Both perfect.
This weekend I was meant to be driving to my Mum’s but I cannot make the journey. So, bless her heart, my Mum has swept down from Oopnorthshire and is visiting me. We will be making a trip to my sister’s for some more family togetherness which I am in sore need of as a change of four walls will be welcome indeed.
You have got to love a birthday party. And I have recently discovered that there is nothing like a granddaughter’s first one. Especially when it falls during chemo. To have something so sweet, so good, so perfect to look forward to when feeling utterly dreadful has been wonderful.
My daughter asked me weeks ago if they could come and spend yesterday with us. It was the day before the actual birthday but to have the excuse for a party was delightful. And to know so far in advance that I was getting this opportunity was a treat that got sweeter as the day drew nearer. We settled on mid afternoon as the perfect time slot – opportunity for lazy morning for me, plenty of time for others to get here. It was to be the birthday girl and her parents, my son & his fiancé, my sister & my niece.
I spent all week planning food. Food that I could manage to rustle up that is. Websites were scoured. Recipe books poured over. Relatives consulted. In the end, birthday cake was made by doting aunt and I provided rhubarb & custard lollies (perfect for chemo mouth as it happens!), chocolate dipped strawberries with 100s & 1000s and blueberry & lemon cheesecake fairy cakes.
Balloons were blown up and banners displayed. Presents wrapped and cards written. Food arranged and drinks poured. And then I sat back and watched as the party girl embraced the occasion. It was perfect. She was a total delight.
Of course, like all long anticipated things, it nearly did not happen. My daughter rang earlier in the week to tell me she had just been diagnosed with a contagious skin disease. Cue panic phone calls to chemo team and many tears on my part. After much debate among themselves they decided that as said disease was already being treated, would be covered and was on an adult it was an acceptable risk for me to take in my current immunocompromised state. I had to promise to avoid all physical contact with my daughter and, if anyone else contracted it, to abandon all plans. Frankly I would have agreed to sell a kidney if that would have meant we could go ahead so these stipulations were fine.
Whether it was this or that it was a bright spot in an otherwise grim period that made the afternoon so sweet I do not know. I rather suspect grandchildren’s first birthdays are ever thus.
And in case you were wondering, that photo? Me. On my first birthday. At my Grandma’s house.
Who knew? It is not so much love that is leaving me breathless, rather it is chemo. I suspect this is not going to set the songsmiths on fire in quite the same way though. But the upside could be another string to my bow. Another way of earning a crust. I would currently be perfect for a certain telephone entertainment industry.
On the whole, this cycle has not been too bad so far. I have had all the usual. Extreme knackeredness? Check. Utter crapness? Check. Borderline head explosion-itis? Check. Achy breaky hurting? Check. On top of that there have been a few interesting moments. The back issue. The vein issue. And most delightfully of all, the chemical blues.
Alongside that delightful package have been some fabulous moments. Mainly meeting up with friends. These times have been more precious than I can express. I am crap at planning them. Unable to predict how well I will be. Entirely likely to be utterly spent after only an hour. But they have made the difference.
And while the Captain may not be responsible for my current state of breathlessness, not even the frequent fluttering of my heart, he has provided me with another definition of what love is:
It was inevitable that it would come to this. That my back means sitting is more problematic has only meant I have given in sooner. I am now incapable of managing a day without some sort of nap. My excuse is that it is physio orders. You see, lying side to side is better than sitting. Lying on my stomach would be even better but that is unacceptable in the breast department. Would you believe I still have bruises? Rude. So side to side it is. And of course I fall asleep.
I would like to say I awake refreshed. But I do not. The dark shadows under my eyes remain unchanged and I have no more spring in my step than before. It is all rather irritating. Especially falling asleep when not wanting to. I intended to watch Murray’s game yesterday. I made it to the start of the third set and two hours later the Captain found me dead to the world with the BBC still streaming through my laptop and my glasses somewhat skewed across my face while I drooled and snored in oblivion.
The good news is my back is much improved. I have a great deal more movement and the exercises are doing their job. It is all I can do to manage the bare minimum but that is currently sufficing. My veins are more of a worry. On Saturday my arm swelled and several veins were clearly demarcated on the back of my hand and arm. Phlebitis was a possibility but thankfully all is calm again. They are very sore and the burning out process is clearly in progress. I really need to keep this arm going as having a PICC line is not an option thanks to my stupid allergies. Using my left arm is a bit like playing the lymphoedema version of Russian roulette so I would really rather not. Because I have only had my sentinel lymph nodes removed my risk of developing lymphoedema is reduced from up to 53% to up to 17%. Or a 1 in 6 chance. The same odds as Russian roulette. So obviously I am keen to avoid that. Anything that increases the pressure or pierces the skin on that arm increases that risk. As a result, my right arm simply has to keep going. It has to.
Remember this episode? Or the one where we bought and then the Captain made stilts for my invalid chair? Well today has an eery feeling of déjà vu about it. On the whole, I would say that I have been living on borrowed time. What with all the lounging around, lack of exercise and general poorliness. Tsk.
Having spent the morning in bed (bad), I got up, ran a bath, sorted out stuff to wear and then committed the most heinous of crimes. I removed my glasses and placed them on my bedside table. And that was it. Pain exploded. Breath forced from lungs. Muscle spasms slammed sideways. Oh goody. A kaleidoscope of memory synapses firing all over my brain as my experience of the 6th February came flooding back to me. The good news is that I appear to be able to learn from my previous experiences. My previous policy of ignoring it and hoping for the best proved to be a bad one. So this time, following the inevitable call to the chemo hotline, I dosed myself up on diazepam and diclofenac, put the vein heat pad to another use, dusted off the invalid chair, and dug out the exercise sheet. Physio Extraodinaire is also on the case and her advice, as ever, is invaluable. The Captain is in the shed constructing stilts for the new kitchen sofa. Whatever would I do without these people? Cry, even more, I think.
It is fair to say that I am more than a little pissed off by this latest twist in the tale. Is it not enough that I have chemo to contend with? Apparently not. Yesterday was a bad day for me. I was pretty miserable on the whole. Having cracked the halfway barrier and moved onto the two thirds club instead of feeling elated, I have felt overwhelmed by what is still left to tackle. Each cycle gets harder and the knowledge of what is coming drags me down. I have still be reading through Psalms. Lately I have found myself in a group of great praise Psalms which are, of course, well, great. But they have not been hitting the spot for me. Instead, I am finding much comfort in the unrelentingly miserable Psalm 88. Here’s a taste:
13 But I cry to you for help, Lord; in the morning my prayer comes before you. 14 Why, Lord, do you reject me and hide your face from me?
I love that this is included in the bible as it shows I am not alone. Because there are times when this is how I feel. It is a facedown flat on the floor moment before God. Even in the psalmist’s despair it is God to whom he speaks. I may not see God. I may not feel him. But I believe he is there. And therein lies my hope.
My date with the poison always seems to steal upon me in a rush. You could be forgiven for thinking I did not want it to happen. Actually, for the days leading up to it I am assaulted by all manner of conflicting emotions: I do not want this treatment; I do want this treatment; I do not want to be ill again; I do want to cross off one more; I can not wait for it to be over; I am scared of it not working; I want to stop being treated; I want the reassurance of being treated. I could go on but you get the idea.
On the upside, I am getting to know the staff at my unit well enough to call many of them by name. They appear not to have come across the late Kate Granger’s Hello, My Name Is campaign. As the staff do not introduce themselves and their name badges are invariably covered by aprons, it has taken some detective work to sort them out. However, it IS nice being able to joke around with them by name. And they are remembering me too. The loon in the lippy is hard to forget, it seems! I really want to tell them about the not introducing themselves thing and the impact such a small thing has, but I do not want it to come across as a complaint that undermines all the many good things they have done. I know well how the NHS can handle such ‘complaints’ and am keen to avoid something that is not my intention.
Back to today. I feel rubbish. All the usual but just to shake me out of any kind of complacency I have excruciatingly achy knees. I have no idea what that is all about but I currently have a hot water bottle underneath them and my vein arm heat pad on top of them. Between these measures and the ibuprofen I have taken, I can just about cope. I continue to drink masses in case flushing the toxins out will help. Who knows?
The general administration was trouble free which is seriously good news. It is no secret that I have excellent reasons for being terrified of my veins packing up. This time, along with all the other things I have been doing, I tried drinking miso soup last night and again this morning. I picked up the tip here and decided I had nothing to lose. Of course, that was before I tasted it. As I was downing it this morning, I was hoping it would make not the slightest bit of difference because it is truly disgusting. Especially for breakfast. However, having never been blessed in the vein department, I was honestly gobsmacked at the ease with which cannulation happened on this occasion. I suspected the miso was having an effect as I had not peed as much following the consumption of the medium sized lake. By the time I got to vein inspection time they were standing to attention on the back of my hand which was quite the novelty for me. I have never been able to see them before so this was astounding. Un-named poison nurse declared them beautiful. I was so proud.
Now I am off to nurse my shakes, my aches and general rubbishness in front of the tele. Until I can go to bed #wontbelong
Today is always an odd day. It is the day I feel most well. The day, if any, that I bounce out of bed with something of a spring in my step. So to waste it sitting in a hospital Outpatient Department always feels very wrong. That I am seeing The Doc is some compensation.
I had my usual vampiric experience which thankfully is still going relatively well. Today I discovered that as a chemo patient I can jump the queue. Well, hurrah! The chemo unit has its own exclusive vampire but they are only available during the morning. In a room that is little more than a cupboard. Without windows, appropriately enough. Given that my appointment was during the afternoon, I had to attend the main phlebotomy area. Here, there is a numbered ticket system. I took a ticket, number 36. I glanced at the display which read number 20 and inwardly groaned. At that moment an official person (possibly a vampire in disguise, it was difficult to tell) noticed my bright yellow lab form with urgent stamped all over it in red. You shouldn’t be waiting, she said. Really? I answered. Go straight through, she commanded. I scurried along the corridor in reply.
Thanks to the lab within the chemo unit, my blood results were ready by the time I made it into The Doc’s room. I had been worried about them as my pesky neutrophils seemed to be falling off a cliff. Last month they measured 1.5 having dropped from 2.32 at the start of cycle one. I had expected this drop would continue and knew that should they get as low as 1.0 my treatment would be delayed. Thankfully (and somewhat bizarrely) my count has shot up to over 2 again so delays are off the agenda.
The Doc & I talked veins a fair bit. Mine are hanging in there. They do cause me concern. The Stuff (also called hirudoid cream) prescribed last time has helped. As has all the massage, the exercises and the heat pad. The cream my complementary therapy team mixed for me has been pressed into service many times a day. This is a mix of 120g aqueous cream with 12 drops of both black pepper and juniper essential oils. I have no idea if it works but it does remind me to massage my arm using upward sweeps of my hand and small circular movements with my thumb along all the sore veins which is apparently the thing to do. All this seems to be keeping them just about in working order. In other circumstances I would have requested a PICC line at the start of treatment. But my circumstances are such that I am allergic to all the dressings generally used with PICC lines. The Doc is keen to keep going with peripheral access given my allergies. I know things will get worse but hopefully they will not grind to a halt. Time will tell.
I left The Doc with a lipstick mark on his cheek and headed off to finalise my preparations for my fourth date with the poison.