Three Down and Three To Go

Today is the halfway point for chemo. Having had a about 2 days of not feeling sick since the last one, I'm dreading it. Also dreading the fact that my veins have started to feel bruised, hoping they hold up till the end of treatment, although a port wouldn't be the end of the world. My hand and arm have felt sore since the last dose and it burnt as it was administered last time. It is a reminder, as if one was needed, of how toxic these drugs are. I have a different lovely friend taking me today, so hopefully we can bat off any comments from the nurses together! Always jittery the morning of chemo so going to eat some toast now, eating again might be a challenge. I really should be thin by now, except who wants to look poorly thin. 

What Not to Say

I post this link with a codicil, if you have said any of these things (which some people have) don't worry, I  hopefully told you it wasn't how I felt when you said I was getting a free boob job etc., because if you are my friend you'll have understood me anyway. There are the other things I would add to the post which you all know about if you are reading this, thinking positive, if you have any cancer this is a good one to have, and all the really inane things the nurses have said. I need to give them my feedback. Other people are just as I was before I had this diagnosis and this would have helped me. And this post tells you why it isn't the good type of cancer to have, you can never say the C word; cured. 

Inspirations

I've inspired a blog post which was both a surprise and a treat. If you want to have a look around, I really liked the post about open and closed questions. I like a linguist, they are that kind of clever I admire which results from me not really knowing anything about linguistics. I think I looked at studying it at one point, at Birkbeck, but I'd already bitten off more than I could chew with philosophy. They turned out to be things I was interested in but that might not get me my 2:1 and I did need that. I should read more in the fields I am interested in, but I don't think I have read anything that isn't connected to work for years now.

In other news, it has been an unpleasant week of side effects, which is why I am not writing much more about the above, I am too tired and too sick. I fear the SE's are now cumulative but remain positive that I don't have lots of them that other people do, could just do without the nausea. I have also managed to avoid going to the hospital, to date, so touch would. And (I like starting sentences with prepositions) I probably didn't help myself by going out on Friday for delicious food and with friends with whom I laughed until I cried, a lot. I didn't help myself at all, and might not do that again, but who would miss out on that. 

This week has also been a week of tears for a friend and colleague who passed away very quickly after a cancer diagnosis. The funeral is too soon after my next chemo for me to go and that makes me very sad. I won't name her because I only really expose myself here, but she was someone who was very important to me at the start of my career, and whose wise counsel stood me in good stead  a number of times over the years. I wish I could go and pay my respects and tell her family how much she meant to me, but I hope my card will do that. I think I also have to accept that there will be a lot of people there who I know and I would be overwhelmed by their interest in me. I write here so I don't have to answer all those questions and someone else's funeral should never be something that is about me, in whatever small way that is.

In other ways heart strings have been pulled with the anniversary of the Aberfan coal disaster. Every time I have ever heard about it I have cried and taht was over challenging this week of multiple broadcasts. Amongst all the horrible things that have happened in the world, this one hits me hard. Of course it is harder for those who lost their loved little ones who would now be a bit older than me, perhaps with their own children. I was heartened by the stories of those who turned out for the rescue, firemen from neighbouring towns and villages came off a shift to help, others arrived after work, and one of those people reminded me that this was the good to be found. There is always good to be found. 

Oh and thinking of good things, read this great post about a dad and his son, along with a selfless superstar teenager helping to make something happen for someone else. 

Asking not Assuming

I always find this blog interesting and today it gave me the opportunity to park something I've mentioned on this blog before. It's the nurses again, and their insistence on talking to me, when really what I would like is for them to ask me if I want to talk to them first. My real problem is that I want to be polite, and telling someone who is trying to help you that you don't want their kind of help isn't that. 

Dariusz Galasiński is continuing a pattern (as he says) of objections to easy solutions for clinical communication and gives a response to Sosena Kebede’s recent coment in the BMJ when she writes ask patients “what matters to you”, Dariusz Galasiński says please don’t! My comment is on the blog but I shall reproduce it here without the errors, it was a rant written in haste with typos and a chemo brain (which is a real thing and which I am really suffering with atm). 

As I am going through some medical treatment at the moment, the question I would most like to be asked is would I like to talk. Would I like to open up, would I like to tell you anything, or would it leave me feeling overexposed and vulnerable. A simple "are you ok or would you like to talk" would do it. The nurses in the breast cancer unit are very nice, as everyone keeps telling me, but I don’t want to talk to them, I have other people to talk to. I’m not in denial but I don’t like the assumption they make that I want to talk to them, in that appointment, and at that moment. It has consistently been really invasive, and it doesn’t help that I am quite often getting dressed after an exam, so am ambushed. I am also emotionally vulnerable, and people should be allowed to protect themselves, if they don't want to talk to a nurse. It isn't even as if it is the same nurse every time. 


Most of the time I don’t really tell them anything but when I am avoiding telling them anything, I sound bright and breezy. This always leads to the nurse saying something really stupid like the one who said I have the right constitution to get through this. I don’t know what the right constitution for cancer is btw. The nurses also all consistently laughed at me when I carried on working, which was very important to me, during what was a long and complex diagnostic process. Sometimes there has to be some normal somewhere and goodness knows why they couldn’t hear that work was very important to me. Instead I kept being told I should look after myself and have ‘me’ time. I didn’t really need more time with me to worry about what the diagnostic process was finally going to reveal. 
I needed to feel like I had some control in a world where there wasn't any. 

If those nurses had done what they said they were doing, which was getting to know me and supporting me, they might have realised that what I needed was not what they were doing. They didn’t though, they had a cookie cutter template and I was probably awkward because I didn’t fit it. In case I just sound like a huge grouch, I have been described in lovely terms by some medical professionals, and the geneticist thanked my Dr for referring "this very pleasant lady"! If I sound ungrateful I am, I would be grateful for people asking me before they talk to me about my cancer, they are professionals. I am of course completely forgiving of anyone in my personal life who does or says anything.

I have absolutely no say in my treatment plan so am happy to talk to the doctor when there are decisions to be made about which order we do things in etc. but anything else would be a token gesture, so I don’t need it. I’m happy that they have a multidisciplinary meeting about me filled with lots of people who know a lot more about breast cancer than I do, as long as they explain it all to me. The doctors don’t really want to know about me outside that discussion, sometimes I do tell them something about my treatment which is important to me, and we can talk about that. I’m good with that.

In other news, today was the first 'normal' post chemo day, so the nausea lasted exactly the same time as last time. Hopefully it might be better next time, the tweak in meds didn't work this time, but it might now. I was beginning to think that the cumulative effect was beginning, this being the 2nd cycle, and because it does. The side effects are building but damage to gums, nails, feet etc. are not as bad as they could be and I am grateful for that. 

The flowers were brought round by a lovely friend, I have no idea what they are, but I like them! One sometimes hears people who have gone through something difficult say they found out who their friends were, and there were a few surprises; people they thought they were close to disappeared and those they didn't rocked up. I am very happy to say that all my friends are exactly who I thought they were, nobody has disappeared, and I see a bit more of them than usual because I'm around more. I am grateful for being able to be honest with them about what help I need, to be able to say when I don't want to talk about cancer, and for all the other talks there are to have about the world. It's just a generally all good lovely thing. 

Surviving the Treatment

There are a lot of days now when the cancer isn't the main thing, because the treatment is. Hard to explain how being in the midst of all the treatment for the thing means the cancer itself isn't the main thing, but surviving the treatment is. You put one step in front of another to get through the nausea or you sleep a lot, like me all day today. I'm not sure if I was asleep because I was very tired or because I was blocking out the thoughts that had started to creep in about cancer. It seems surreal that you can have cancer which feels like such an aggressive disease and it not infiltrate your every thought because the treatment is so vile in itself. 

It comes as no surprise to me that after treatment is the time when people think you should be euphoric but actually aren't, it hits home, you had the cancer and you have no idea if it will come back. Nobody knows. You can be hopeful, hoping it isn't you that has secondary cancer, but if it is you that's incurable and when they say it is treatable that is more of this. People aren't very happy to hear that I won't have more of this, but I don't think I would. Some people have chemo for years with small gaps in between. It doesn't feel much like life to me and sometimes I wonder about the extent of treatment people go through. That probably sounds like a depressing last note. I'm not depressed. It probably doesn't sound much like positive thinking but I'm a realist. 

Chemo Round 2

Friday was chemo day #2, we got there on time despite lovely friend and I enjoying our morning coffee for probably a bit too long. We know where we would rather be. Chemo suite were running on time as well, which meant I didn't wait that long. I was in a side room with the nurse this time and was given Emend which is the 'gold standard' of anti emetics. Hurray. I think it is probably quite expensive so they only give it to the people that need it, but I don't know. I just know I knew I would need it first time around but I had to wait till they knew too. The treatment itself was more painful this time. Chemo drugs are very toxic and burn your veins, which is why they run a saline drip to dilute them at the same time. First time around the veins are all healthy, this time around they've been damaged and the pain was in my hand and through my wrist. It wasn't around the site of the cannula so it meant we could keep going with a bit more flushing. I was fine straight afterwards and we came home and had some lunch and cups of tea. Realised I have given lovely friend salmon all 3 times she's had lunch here now... oops. 

Day after was ok but I didn't do much, I did get a lovely postcard which made me laugh from two other lovely friends who'd gone to Brighton on a work trip. Nobody every sends postcards these days and it was so lovely. Today I woke up a lot as is becoming the new normal. Managed to do the eating whilst feeling sick to take the 8am and 2pm anti nausea drug and think the Emend at 7am helped with that. Went back to sleep as was overwhelmed with tiredness, woke at 10.30am thinking bed was very snuggling so I'd have a bit more of a snuggle and get up, fast forward to 12.30pm... Think that is probably the anxiety and insomnia of the week before chemo catching up with me. 

Lovely husband has done the essential cleaning tasks, I know a clean house is not exactly a priority at the moment but I don't want to get poorly and I do want to languish in something that isn't a tip. He's now preoccupied with the attempted break in to our double garage. We can't fit cars in there due to the design but they store a lot including the precious motorbike. It looks like someone did a recce, they broke the door a bit but not the lock. Husband's Friend is coming over to secure bike better but I think they'll just come back for other things like the push bikes.  I'm voting for an alarm with a sensor and a big yellow disc outside to say we've seen you. We can also block the entrance with a car so they can't pull a van up. I am really surprised nobody was seen, along with me being around, there are two other inhabitants in our courtyard of 5 houses who work from home. It's been reported but we have no advice. I think mine is falling on deaf ears so I shall continue to faff on the internet and might languish on the sofa a bit more next week so I can keep an eye out. 

Update: forgot to add earlier that nurse (who sits and injects chemo drugs) told me I had to think positive and said that if I give to the universe it will give back. I responded as kindly as I would to anyone saying such things but I it came out very glibly and I hope she will think twice before saying it to anyone else. I don't walk about miserably, I don't think negatively, but I am realistic. 30% of the 1 in 8 who get breast cancer get secondary cancers and they are not curable. I hope that isn't me but I can never know. If anything depends on me giving to the universe I don't know why I have cancer in the first place, I do my giving and if I didn't do enough, does that mean cancer is my fault. 

My Anxieties have Anxieties (thank you Charlie Brown)

This is the week before the next chemo, which is worse than the week before the last one, because then I didn’t know what to expect. I have seen a fairly disinterested oncologist this week but I managed to beg for better drugs for the nausea and didn’t leave until he had agreed to them, that was really all I needed. I had my blood test at the GP on Monday and the big hospital had my results back the next day which was all v impressive and that was all fine. Phew. 

It is not over egging anything to say that my entire focus is upon not catching anything or anything happening that will result in the deferrals they allude to as I booked in my next set of appointments. Deferrals happen when someone isn’t well enough or isn’t tolerating the regime well enough. A deferral will affect my entire timescales for everything, and whilst I accept that I have no control if something does happen to cause a deferral, I can do everything in my power to avoid any such thing. 

Having never really been ill before this is a challenge but we are rising to it. This week my husband got a man cold so we spent time in separate rooms, since he watches a lot of programmes about doing up cars and houses, this is not a hardship…The terrible cold went after one day of being treated with Lemsip and an early night, suggesting it probably wasn’t a terrible cold after all, but who am I to judge. 

So tomorrow I go for round 2. Knowing what to expect has meant I’ve been anxious since Monday. This I could frankly do without as have been trying to do some work and if I am going to have 2 good weeks out of every 3, they could just be good weeks without insomnia and anxiety methinks. There has been a balance with friends visiting and walks being taken but it would be lovely to do all that without the sleep deprived looniness infecting my chats.

Once again I have not replied to a number of messages and things that kind people have sent me, if you are reading this and I haven't, my brain got hijacked this week. I had to make it read work things so it wouldn't go wandering, but I appreciate all the messages. Thank you.