I have to admit it feels quite strange and self indulgent of me to be here writing about my treatment in a week where so many young lives were needlessly lost in Manchester and it does put a lot of personal troubles and worries into perspective, my heart goes out to all the people affected by the tragedy and all other such tragedies going on, all too often, all over the world. However, I am, if you forgive me, going to go ahead and indulge myself by writing another blog post as this really if the best therapy for me.
The last few weeks have probably been the most challenging ones since starting chemotherapy. I think I explained a little in the first blog about the treatment plan I'd decided upon, but I'll explain again just to clarify. My chemo regime is one that is pretty standard for treatment of breast cancer in the UK, usually referred to as FEC-T - with the first 3 drugs (the FEC part -flourouracil, epirubicin & cyclphosphamide) are given in combination for three cycles each lasting 3 weeks, after that the T part - docetaxel (also known as Taxotere [Tax]) is given by itself for three cycles also lasting 3 weeks per cycle. From my reading at the beginning of treatment I expected the FEC treatment to be harder than the Tax, but as I got through the FEC relatively well and started to talk to more people who had been through the same regime, I started to realise that the Tax may actually be the most difficult treatment. Sometimes it's really good to talk to people with these experiences, sometimes it just scares the bejeesus out of you......... for me, in this case, it was the latter.
Because my Cancer was HER2 receptor positive, I am also receiving a drug called Herceptin by injection that I will have every three weeks for the next year. The first of which was given the same day as my first Docetaxel. As both Doctaxel and Herceptin are known to cause allergic reactions in some patients, I was told that on this first treatment day I would have to stay in the department most of the day (from 9:30am to 4pm) to be monitored. Possibly not surprisingly to some of my old Edinburgh friends and colleagues who have witnessed such scenes before, I did indeed have an allergic reaction about 5 or 10 minutes after the Docetaxel infusion had started. I became a bit breathless, started to see lights and my head felt like it was about to explode (apparently it turned the same shade of red as my nail varnish at the time - at least I was coordinated!). Everyone jumped into action very quickly and stopped the drip and gave me IV Hydrocortisone and antihistamine. The reaction calmed and after about half an hour they tried again with the infusion at a slower rate and I was fine and completed the dose. It was a tiring day but I was happy to have been able to complete the treatment. My friend who works as a nurse in chemotherapy and just happened to be visiting at the time, assured me that this was a mild reaction (something I liked to tease her about seen as though she wasn't actually present to witness the reaction 😉)!
In the days that followed I struggled with the fear of the symptoms I thought were to come, I had stocked up on pain killers and waited to be hit with terrible aches and pains I had been told about. I did get some aches and pains but they weren't unbearable, the paracetamol and ibuprofen were enough to take the edge off. My mouth was harder to deal with, it became incredibly dry and sore, the food I could tolerate changed pretty much every day. One day I needed rough textured food, the next that was far too painful and all I could tolerate were smoothies and pasta. Even brushing my teeth was painful. My mouth was dry but drinking was difficult, I developed mouth ulcers and also had rather bad heartburn. It wasn't pleasant, but again, I knew it could have been worse. I covered my mouth in coconut oil and the ulcers with bonjella. Later I made trip to Boots and managed to get some gel for dry mouth, a special mild toothpaste also for dry mouth and a big bottle of Gaviscon, all of which did help (although of course by the time I'd bought them the symptoms were starting to alleviate anyway!).
I found that the hardest part to deal was the mental 'fog' that I was feeling. I had started to experience so called 'chemo brain' months ago, even before starting chemo, for me general forgetfulness and absent mindedness, I think more brought on by the suppressed stress of the diagnosis rather that the treatment itself. But this was much worse. Generally I haven't been driving much in the first week after treatment but by the following week have felt fine. This time, however, this fog didn't seem to lift quite so quickly. I tried to go to work one day and ended up walking in and straight back out again as I realised I just wasn't fit. It was hard to deal with, I didn't trust myself and I kept loosing things. I realised I was going to have to cut down drastically on the hours I was working even when the fog eventually lifted, and limited myself to paperwork only when I did go in. The tiredness was most definitely increasing and I seemed to be having more tired days than good days. Reducing my time at work did mean I was spending more time at Maggie's and with my new friends though, every cloud has a silver lining. I was also treated to a night away in my friend's lodge in Drumnadrochit in the beautiful sunshine, an incredibly generous gesture and much needed break.
So after three difficult weeks I was a little bit apprehensive about going for my 2nd Docetaxyl treatment on Friday (26th May), although not as apprehensive as my friend, who had attended every chemo session with me except the one where I had the allergic reaction, so she was watching me like a hawk......until I snapped her head off a little and told her to leave me alone, I was fine! Lol. Luckily we've known each other long enough to get past such things easily. Of course, as she did as she was told and started to concentrate on some work she'd brought in with her, my heart suddenly started to race and I began to feel light headed and just as the girl next to me said "Jodie are you feeling okay, you're a bit red?" I turned my head and immediately caught the nurse's eye who had obviously been watching and waiting from afar. Once again they all jumped into action, turned off my infusion and administered Hydrocortisone (I'd already had IV antihistamine before the infusion this time). I was naively thinking this would be the same as last time, I'd wait half an hour and they'd try again, but when I heard the nurses say they didn't think the doctor would continue I started to worry. As soon as he was free my Oncologist came to see me and broke the news that as this was my second reaction to the drug that there was no way they could give it to me again! So, I would not be completing my 5th cycle of chemo and I would not be coming back for a 6th cycle. Chemotherapy for me has ended rather abruptly and unexpectedly. In all fairness I should have realised this, I have enough knowledge of the immune system, but for some reason I just hadn't really thought about it, and therefore hadn't prepared myself for it.
It's quite hard to explain to people who haven't been through something similar, but I am so disappointed, deflated and upset about this. I have been assured by both my oncologist and the nurses that as I am considered low risk the treatment I have already received is adequate and it is not necessary to continue with a different type of chemotherapy, I will also continue with the Herceptin injections (which by all accounts is a wonder drug) and will have radiotherapy and hormone therapy. Although my logical side understands and accepts all of this, my emotional illogical side can't help but feel somehow cheated out of the maximum treatment available. It's also probably quite difficult for people to understand why, when the treatment was giving me the side effects that I have just described, I'm not happy that it's over sooner and I don't have to deal with it anymore. The thing is, my life has been on hold for the past few months and I knew it would be the same for another two months at least. Everything I have been doing has been planned around my 3 weekly cycles and this routine becomes something of a comfort. I'll get my head around it in a day or two and hopefully be able to enjoy not feeling quite so rubbish for the next 3 weeks before my radiotherapy begins, but for now I'm just trying to process this sudden change that is out of my control..........those are the changes I really don't like!
I hope this blog doesn't sound too depressing, I'm still aware how very lucky I am, not only in the early stage I caught this and the relatively mild side effects that I've experienced but in the people I have had around me. I've had so many special moments and laughs over the past few weeks with both my new friends and 'old' friends (obviously incredibly youthful friends that I've known for a long time, I mean ;-)) and this weekend I'm away in a caravan with one such friend enjoying this amazing weather we've been having (annoyingly having cover up, but that's just a minor grumble)! Oh and my fingernails are now bright purple, for anyone that was wondering, I have decided this time not to coordinate though!
The last few weeks have probably been the most challenging ones since starting chemotherapy. I think I explained a little in the first blog about the treatment plan I'd decided upon, but I'll explain again just to clarify. My chemo regime is one that is pretty standard for treatment of breast cancer in the UK, usually referred to as FEC-T - with the first 3 drugs (the FEC part -flourouracil, epirubicin & cyclphosphamide) are given in combination for three cycles each lasting 3 weeks, after that the T part - docetaxel (also known as Taxotere [Tax]) is given by itself for three cycles also lasting 3 weeks per cycle. From my reading at the beginning of treatment I expected the FEC treatment to be harder than the Tax, but as I got through the FEC relatively well and started to talk to more people who had been through the same regime, I started to realise that the Tax may actually be the most difficult treatment. Sometimes it's really good to talk to people with these experiences, sometimes it just scares the bejeesus out of you......... for me, in this case, it was the latter.
Because my Cancer was HER2 receptor positive, I am also receiving a drug called Herceptin by injection that I will have every three weeks for the next year. The first of which was given the same day as my first Docetaxel. As both Doctaxel and Herceptin are known to cause allergic reactions in some patients, I was told that on this first treatment day I would have to stay in the department most of the day (from 9:30am to 4pm) to be monitored. Possibly not surprisingly to some of my old Edinburgh friends and colleagues who have witnessed such scenes before, I did indeed have an allergic reaction about 5 or 10 minutes after the Docetaxel infusion had started. I became a bit breathless, started to see lights and my head felt like it was about to explode (apparently it turned the same shade of red as my nail varnish at the time - at least I was coordinated!). Everyone jumped into action very quickly and stopped the drip and gave me IV Hydrocortisone and antihistamine. The reaction calmed and after about half an hour they tried again with the infusion at a slower rate and I was fine and completed the dose. It was a tiring day but I was happy to have been able to complete the treatment. My friend who works as a nurse in chemotherapy and just happened to be visiting at the time, assured me that this was a mild reaction (something I liked to tease her about seen as though she wasn't actually present to witness the reaction 😉)!
In the days that followed I struggled with the fear of the symptoms I thought were to come, I had stocked up on pain killers and waited to be hit with terrible aches and pains I had been told about. I did get some aches and pains but they weren't unbearable, the paracetamol and ibuprofen were enough to take the edge off. My mouth was harder to deal with, it became incredibly dry and sore, the food I could tolerate changed pretty much every day. One day I needed rough textured food, the next that was far too painful and all I could tolerate were smoothies and pasta. Even brushing my teeth was painful. My mouth was dry but drinking was difficult, I developed mouth ulcers and also had rather bad heartburn. It wasn't pleasant, but again, I knew it could have been worse. I covered my mouth in coconut oil and the ulcers with bonjella. Later I made trip to Boots and managed to get some gel for dry mouth, a special mild toothpaste also for dry mouth and a big bottle of Gaviscon, all of which did help (although of course by the time I'd bought them the symptoms were starting to alleviate anyway!).
I found that the hardest part to deal was the mental 'fog' that I was feeling. I had started to experience so called 'chemo brain' months ago, even before starting chemo, for me general forgetfulness and absent mindedness, I think more brought on by the suppressed stress of the diagnosis rather that the treatment itself. But this was much worse. Generally I haven't been driving much in the first week after treatment but by the following week have felt fine. This time, however, this fog didn't seem to lift quite so quickly. I tried to go to work one day and ended up walking in and straight back out again as I realised I just wasn't fit. It was hard to deal with, I didn't trust myself and I kept loosing things. I realised I was going to have to cut down drastically on the hours I was working even when the fog eventually lifted, and limited myself to paperwork only when I did go in. The tiredness was most definitely increasing and I seemed to be having more tired days than good days. Reducing my time at work did mean I was spending more time at Maggie's and with my new friends though, every cloud has a silver lining. I was also treated to a night away in my friend's lodge in Drumnadrochit in the beautiful sunshine, an incredibly generous gesture and much needed break.
So after three difficult weeks I was a little bit apprehensive about going for my 2nd Docetaxyl treatment on Friday (26th May), although not as apprehensive as my friend, who had attended every chemo session with me except the one where I had the allergic reaction, so she was watching me like a hawk......until I snapped her head off a little and told her to leave me alone, I was fine! Lol. Luckily we've known each other long enough to get past such things easily. Of course, as she did as she was told and started to concentrate on some work she'd brought in with her, my heart suddenly started to race and I began to feel light headed and just as the girl next to me said "Jodie are you feeling okay, you're a bit red?" I turned my head and immediately caught the nurse's eye who had obviously been watching and waiting from afar. Once again they all jumped into action, turned off my infusion and administered Hydrocortisone (I'd already had IV antihistamine before the infusion this time). I was naively thinking this would be the same as last time, I'd wait half an hour and they'd try again, but when I heard the nurses say they didn't think the doctor would continue I started to worry. As soon as he was free my Oncologist came to see me and broke the news that as this was my second reaction to the drug that there was no way they could give it to me again! So, I would not be completing my 5th cycle of chemo and I would not be coming back for a 6th cycle. Chemotherapy for me has ended rather abruptly and unexpectedly. In all fairness I should have realised this, I have enough knowledge of the immune system, but for some reason I just hadn't really thought about it, and therefore hadn't prepared myself for it.
It's quite hard to explain to people who haven't been through something similar, but I am so disappointed, deflated and upset about this. I have been assured by both my oncologist and the nurses that as I am considered low risk the treatment I have already received is adequate and it is not necessary to continue with a different type of chemotherapy, I will also continue with the Herceptin injections (which by all accounts is a wonder drug) and will have radiotherapy and hormone therapy. Although my logical side understands and accepts all of this, my emotional illogical side can't help but feel somehow cheated out of the maximum treatment available. It's also probably quite difficult for people to understand why, when the treatment was giving me the side effects that I have just described, I'm not happy that it's over sooner and I don't have to deal with it anymore. The thing is, my life has been on hold for the past few months and I knew it would be the same for another two months at least. Everything I have been doing has been planned around my 3 weekly cycles and this routine becomes something of a comfort. I'll get my head around it in a day or two and hopefully be able to enjoy not feeling quite so rubbish for the next 3 weeks before my radiotherapy begins, but for now I'm just trying to process this sudden change that is out of my control..........those are the changes I really don't like!
I hope this blog doesn't sound too depressing, I'm still aware how very lucky I am, not only in the early stage I caught this and the relatively mild side effects that I've experienced but in the people I have had around me. I've had so many special moments and laughs over the past few weeks with both my new friends and 'old' friends (obviously incredibly youthful friends that I've known for a long time, I mean ;-)) and this weekend I'm away in a caravan with one such friend enjoying this amazing weather we've been having (annoyingly having cover up, but that's just a minor grumble)! Oh and my fingernails are now bright purple, for anyone that was wondering, I have decided this time not to coordinate though!
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| Preparation for the next step/ Purple nails / hiding from the sun |
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| Fun with friends |
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