I am constantly asleep…so so so tired. Wake up. Eat. Sleep. Wake up. Injection from the district nurse. Sleep some more. Wake up. Cereal and coffee. Watch catalan soap online. Sleep again.
At least this time I do not feel nauseous. And although my appetite is not great I can eat, if only a little…
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Finally, finally, finally!!! chemo number 4 took place yesterday, and you may think: “hang on a minute, why is she writing then? Should she be in bed feeling sick?”
No!!! I have been fortunate not to get nausea this time (apparently with this drug it is less common to feel that way). I slept well, but feel tired and so may have a nap soon. Right now I am just waiting to see how my body reacts, there are many side effects that could come my way in the next few days (specially bone pain).
Yesterday was a long, long day. Got to the hospital at 10:30. Had a blood test round 11. Went to the tate modern (my hospital is nearby) and had a coffee upstairs, looking at the magnificent view of London. Walked back to the hospital. Sat down. Results arrived: yeah I could do chemo! but before then, I had to have and infusion of herceptin, a drug (which is not chemo), that I will have to be on for a year (will have to go to hospital every 3 weeks). That took about an hour and half. But before that they give you insulin, or a “rinse” as they call it 30 minutes or so. Once the herceptin is done there is another rinse, and then chemo can start. Between all these drugs and rinses there is time just waiting, as the ward gets so so busy that the nurses cannot change the drip straight after it’s finished. Once the chemo infusion was done at 6 o’clock, I had to go to another ward and be on observation (in case I had an allergic reaction) until 9 pm.They gave me a room with a bed and I had a 2 hour nap. This was in a way the best time of the day: chemo was done and I was reacting well! I now have a distric nurse coming over every morning for the next 5 days to give me an injection to boost my white blood cell count. Hopefully no more delays then. The drawback? they can give you bone pain. No pain no gain I guess.
I spent half my day “alone”, then my friend Caz came for the other half of the day. I say alone in inverted comas ‘cos it is not true. I went alone, but I was not alone. I met this lovely indian-muslim couple who happen to live close by. They are both in their late 60s. She was also diagnosed with breast cancer recently and we had a little chat about how it’s been, comparing experiences. The husband was adorable and he told me that my dreams about having long, healthy hair was a good sign (I want to ask him more about this when I see him next). They have 1 daughter and 2 sons, all living at home, and 2 little grandsons who come visit at the weekends. And they were so kind-hearted that as soon as they realised that we lived so nearby they invited me to go over to their house for food! how amazing is that? so I have their phone number and address and as soon as I feel ok I shall be going over for curry (well, I hope it is curry!!). It’d be nice to know someone who is also going through this.
So after they left, I put my pillow to one side and rested my head. And i just found myself in tears. Overwhelmed by the generosity of those people, missing my own parents and family and once again, hoping that this had not happened to me! Being in the chemo suite always, without fail, bring tears to my eyes. It can be as soon as I go in, or it can be during my session. I hope that on my last one the tears come at the end, and they will be tears of happiness!
Luckily, my friend Caz came to the rescue, and she just arrived as the chemo was gonna start. It was lovely to have someone there to take my mind off things, to chat away with and to have a good catch up! it made it all much easier as I was so scared of the chemo. Needles to say I cried again. They had to administer it slowly in case I reacted badly. I was asked several times if it hurt. I think had not Caz been there I would have been much more panicky. No better escapism than a good talking session with a girlfriend!
And here I am now. Back in my flat. Back to the “wait and see” game that chemo makes you play. How will I be tomorrow? and next week?
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So after a long, long wait chemo number 4 is finally arriving! It’s been so long since I last had treatment that my hair has started to grow back and I now have a shaved head, rather than a bald one. I was never brave to go outside bald, but I shaved off my hair before chemo and loved it. So I am going to be leaving the wigs at home sometimes now (although hair may go again after next chemo). Look!
Hair has really grown back since last chemo!
Ok. I am officially obsessed with hair. Have you noticed? You’d think given what is going on I’d focus on the “more-important-things”. Pssst. I think that it is because I cannot see the side effects of chemo on the inside, the way the drugs are stopping the rapidly reproducing cells to stop doing so. But I can see the effects that chemo is having on my exterior, on my outer shell. And that involves mainly hair, or lack of. I have been very lucky so far and have not had the nasty side effects that chemo can have on you: mouth ulcers so painful you cannot eat. Extremely sensitive gums. Changes in your taste buds (either by messing up your sense of taste or by stopping you from tasting anything). Metallic taste in your mouth. So really the only thing to talk about is hair. Because really you don’t wanna know about the tiny mouth ulcers i had on my tongue a couple of times. Or how for a few days my gums did feel sensitive. Or the uncomfortable heart burn I suffered for a week after each chemo. None of them were drastic enough to talk about.
What was pretty drastic was my last chemo session, number 3 and thus the one that took me to being right in the middle of my treatment. I had it on a monday and it wasn’t until the saturday that I left my bed. On that occasion I managed a 10 min round trip to the supermarket to pick up the guardian and some croissants. Then back to bed. The following day was slightly better. A trip to the local park with nick, which saw me in tears half way through, thinking I would not make it. But I did. We sat on a bench. It was one of those beautiful autumn days, when the sun is shining, the sky is clear blue and the air is fresh and crisp. The week after was, to my surprise, a recovery one too. But this time instead of bed I was on my sofa. Just feeling weak. Feeling down. Feeling hard done by. Feeling that life is just not fair and why-has-this-happened-to-me? just not fair.
And then the time for chemo number 4 came along. So I had my blood test and, voila! my white blood cells were low again. And again and again on the next 2 blood test. Hence the delay. I’t been over a month since I last did chemo. When your white cell count is very low your immune system is weak (or non-existent at times). They cannot give you chemo until your white cells are up again, so they can knock them down once more. But finally the time is arriving and I have to admit I am scared!
Why am I scared, you may wonder? I should be an “expert” by now. Well, well. They are changing my chemo drugs, from FEC to taxotere (docetaxel). And the potential side effects do not look pretty. I do not know how will I react to this treatment. … So it is, once again, back to the unknown. Here is the “official list” of side effects:
So lets see. Nail changes. I have read (in bc forums) people saying that their nails fell off. Apparently to avoid that happening a good trick is to paint them with a dark shade of nail varnish. So I’ll be going for the goth look this week. The bone and muscle pain is also one that people seem to complain about quite a lot. I met a 32-year-old bc patient on my last chemo visit that was doing taxotere and she was telling me how much pain she was going through. And how painkillers only worked for an hour or so, then it was back to being in pain again. And how last time she was having her taxotere infusion (that’s what is called when they administer the drugs, infusion) she had to ask the nurses to stop as her spine started to really hurt. Which takes is to the last side effect “Infusion Site Reaction”. There is a risk that you’ll have an allergic reaction to this chemo drug so when you first have it they have to give it to you very slowly, just in case you have an infusion-site-reaction. God. It sounds really toxic. Oh, and have you noticed the “odd sensations” one? Vague or what? However I have also read other women who have reacted well, so there is hope. But, when they are going to give you a drug that comes with this warning
Some Taxotere® chemotherapy side effects may be dangerous and even life-threatening, such as serious infections, allergic reactions and fluid retention. It is important to report ALL side effects to your doctor or nurse.
I think it’s normal to be scared. If only a little.
Posted in breast cancer, Chemotherapy, hair, Uncategorized
Why are my titles inspired by songs recently? hmmm…
Anyways, I woke up this morning to find that this had arrived all the way from italy to my doorstep.
I knew it was coming, but I didn’t know all the goodies that were inside!! pasta! risotto! porcini mushrooms!truffle!panettoncino!pandoro! sweet wine!parmesan!coffee!tomatoes! I was laughing, Nick was laughing. Had my friend Oscar gone mad?! Nope. This was simply another lovely act of kindness.
I have often said, but never written, that one of the best things to have come out from developing breast cancer has been people’s support, love and acts of generosity. Friends, friends’ parents, parents’ friends, friends of friends. Neighbours. Family.Professionals.
Cards have arrived from all over the world. Money was raised to buy a car (after the one we had was stolen, arrrgh). Books have been received to help my mind escape to far away lands when things are not so pretty here. Plane tickets. A necklace. Nail varnish. Pampering products. A top. A cd. A spotify chemo playlist…the list goes on.
I’ve been taken out. I’ve been invited to stay over.
They let me cry. They’ve made me laugh.
People have offered help with hospital visits, help with chemo, help with cooking, help with help.
People email, call, send texts, facebook messages. They read this blog, they leave comments.
I always believed people were nice. Now I think people are amazing!
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Hair!!! yes. Surprised? I guess not… Recently I have been having lots of vivid, wierd dreams. And a recurrent one is that I have hair. The funny thing about it is that every time it goes like this: I have beautiful, loooooooooooong hair that has grown overnight. Just like that.In my dreams I wake up one day and, hey, hair is back!
I miss having hair. I miss washing it and combing it and running my fingers through it. However, I have not found losing it a traumatic experience, and understandably, it is common for women undergoing cancer treatment to feel that way. And I think I know why this side effect of the chemo drugs has not upset me.
Before getting breast cancer I was really really, I mean really, attached to my long hair. I spent years growing it with the aim of it reaching my waist. But it never did ( not because i had to cut it, but because i do not think my hair could grow that long). In a way, this attachment was a source of anxiety. I loved it and i loathed it. I wanted it, the hair, to grow longer, faster, stronger. At the same time I sometimes day dreamt about having it chopped off. But no. I could not do that. No no no. This was particularly strange, I thought, as I am someone who has played a lot with her hair through the years. It all started when I was 13. Since then I have had bleached, shoulder length hair. Short spiky hair. Blue, green, red, purple, pink hair. Bicolor (red at the front and black at the back) hair, which then I turned into long dreadlocks. Bob length dreadlocks (bleached at the front). There is photographic evidence. One day you may see them.
So there I was, at the doctors practice being told that I had breast cancer. Being told that chemotherapy was on the menu. And then suddenly the thought of losing my long hair was very, very liberating.
So here it is! my long hair. the one I was a slave to 😉 oh, and the baby is my little brother aged two weeks.
“As I lay in bed I couldn’t help but wonder, will breast cancer kill me?”
This is what it has been like to be sick in bed, my body taken over by the effects of chemo and my mind going places it’d never been to since my diagnosis. I am now officially scared. Fearful. Terrified. And a bit depressed. Is this the end of positivity?
When I was first told I has breast cancer it was all about getting to grips with the fact that so unexpectedly, at the tender age of 30 my “im sure it will be nothing” lump had turned out to be malignant. And that it had spread to my lymph nodes. And that I had to undergo surgery. And that chemotherapy would follow. And that as a result I may lose my fertility. And that I better sort out some embryos – sorry we do not freeze eggs on the nhs – so go and chose the potential father of your children out of a list on the european sperm bank website. And that 6 weeks of radiotherapy would follow chemotherapy. Oh lets not forget being on herceptin for 1 year and on tamoxifen for the following 5.
So yes, having all of these things to think about, I did not have much room for anything else. I only thought about mortality when I had to undergo tests to see if the cancer had spread to my bones or brain (which would have made it terminal). But that was about it. After finding out that it hadn’t I felt like this: “great! it’s ONLY breast cancer!”.
Fast forward 4 months and I’m like this: “F***, it’s breast cancer!”, “F*** it had spread”, “what if it comes back as a metastases (go and find what that means) and it kills me?”. Because once I have dealt with all the above stuff and I am settling into chemotherapy, I am having more time to think. It is when you spend hours in bed, unable to read, unable to watch tv, unable to play on your Nintendo ds, just laying there, feeling sick and horrid that those thoughts start entering your mind. Death is something you are fighting against.
Before you get cancer, the idea of a doctor telling you something along the lines of “I am afraid the biopsy has CONFIRMED that…” is that most scary thing ever. Being told that you have cancer can seem so so so scary it can send shivers down your spine. After you have cancer, a cancer diagnosis is not so scary anymore. It’s a secondary cancer diagnosis that it’s the scary one. Because that one you cannot cure (unless you do a “spontaneous recovery”). It comes to take you.
So as you can imagine, I am quite scared at the moment. Life feels very fragile. Is this it? i sometimes think.
Oh and given that I posted photos of my haircuts, I thought you deserved to se what I look like with no hair at all. I quite like it, but do not go out in public with a bald head. Don’t want people staring at me! It has since grown and I now have baby hair. It may keep on growing or it may all go again. We’ll see!
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The stories of Rosa and her lump *What life turns out to be when you have to pencil in breast cancer* 