Wednesday 28 December 2016

Cancer Research Film of my Wig Fitting

 almost identical to my natural hair, only better!” Right now, we’re working to find kinder treatments
 for people like Helen.
A video posted by Cancer Research UK (@cr_uk) on

Tuesday 20 December 2016

Quick Update


Quick update today as we went to the other hospital to find out about a few things. Consultant had said she would see me 6 weeks into chemo but hadn't,  so I rang secretary with my 2 queries. I had hoped for a call back from secretary but was given an appointment with the consultant instead. I can't be cross about this because I am absolutely sure that consultant doesn't have time to call patients and queries can lead to other things for which (they think) face to face conversations can be better. BUT both of my queries could have been answered in a call which would have taken 5 minutes. I could even have made a telephone appointment entirely at consultant's convenience. 

Instead we drove a 26 mile round trip which takes around 40 minutes, waited in the waiting room for over an hour past the appointment time, then waited a bit more in a private consult room, and then paid for parking for all the time. OH also drove home from work and back again so he could hear the answers to the queries, because I have chemo brain, and I knew I was feeling a bit emotional about a few things. And I have to see consultant again before surgery. 

I can't be cross and I won't be but it isn't any of it at my convenience is it. Thankfully the nurse was someone I have met before but she was toned down today so that was helpful. We did pass another nurse who now feels she has established a relationship with me, but I was talking to OH at the time, so just able to say hello and walk on. I don't want to be mean but that relationship doesn't exist and she is just intrusive. I've started compiling my feedback, very kindly and constructively! 

The outcome of today was that I have surgery on the 01.02.17, and the list is currently clear, so that should be regardless of what surgery it is. We don't know what surgery it is yet because we haven't had genetics back. Test was on 27.09.16 and they take about 3 months usually, so there should be time with leeway, for me to know the outcome. I have rung them today to give them my surgery date and the consultant will write to them, so hoping to get results back in time to inform the surgery date. We are clearly not waiting whatever so I hope it all comes together as it should. 

So have had one surgery, one more chemo to go on the 30th, then more surgery, then radiation. They call it slash + poison + burn behind the scenes apparently. Consultant asked how chemo was going, and I think in oncology world I am doing ok, so said that. I haven't after all had any hospital admissions or infections etc. Also said that I had found it grim and I wouldn't have it again, she made crossed fingers sign, at which point I said I obviously hoped not to have more cancer as well but that I'd meant I would not have chemo again. Perhaps they think I am ungrateful particularly since I also discussed the outcome of the surgery I've just had and how I feel about that (mutilated). We also looked at photos of what will be done, and although I won't turn out exactly like those people, I think it will be better than where I am now. 

Saturday 10 December 2016

Next to Last


Round 5 out of 6 chemo cycles and at the hospital with a friend for 6 hours... My appointment time in my special chemo appointment book was 1.45, I was down on the computer as 2.45, & they were running an hour and a half behind. After an hour of thinking they had forgotten about me, because I didn't know about the difference between the computer and the book, I went into check. They squeezed me in but that still meant I started about 3pm. It's probably churlish to think about the parking at this point, but I did, I don't need it to cost me £6 for a hospital error. I also didn't need poor friend to be there for that long... 

I had a list of queries about side effects, they were nothing that I would have called the emergency helpline about, because they were all manageable with over the counter remedies or something they could give in the hospital after the next cycle, so I just waited till I could see a registrar on duty. I have to go through the list with the nurse, which is fine, because they can decide if I need a doctor or not. Nurse couldn't have been less interested. Nurse was busy, ward was busy, I got the registrar. The side effects had me in tears on the Wednesday night after chemo because I was in too much pain to sleep through them and just too much pain. Medicating pain causes it's own problems, some of which I had already. So nothing is straightforward. Registrar was nice, we reached a point where I will have something at home if I get in that kind of pickle again, but won't take it unless I do. 
Chemo suite was it's usual chatty self, we say the Trump supporter again, and she was funny again. Nurse talked just a bit too much for me but think friend was probably glad of the interruption. Only hiccup was quite frightening for me but over quickly, I had an immediate reaction to the new drug, apparently this can happen on the second cycle if it doesn't on the first. I had immediate sickness, shortness of breath, dizziness and stars before my eyes. I thought I was going to pass out, not helped by a nurse who kept calling me the wrong name somehow. I was taken off the drug, flushed with Saline again, and I think an anti histamine but that was later contradicted so I never really knew. Hence the rest of the 6 hours, it had to go in over 2 hours and I had to be flushed before and after... 

But today excitingly I am up and about and writing this. I never know if it will go downhill, considering yesterday's reaction I wasn't expecting good things today, and I did have two days grace on the last drug. Any grace time is welcome. I also now have only one more cycle to go, so have rung surgeon to find out about my next appointment and have one. She said she would see me 6 weeks into chemo, but expect they are waiting for genetics results, I just have a couple of queries. They could all be answered in a phone call, but they don't do that. 

Cancer research have been in touch again and taken a biography. They also told me about patient's forums to influence policy which is interesting, not sure how much I would get involved now, but have conveyed thoughts about my voice (not) being heard and the nurses in the clinic. Apparently I'm not the only one but others are silenced by the narrative of 'aren't they all great' for some reason. It seems we don't like to detract from any stories of how great those people are. Also had a chat about the battle motif which is so pervasive, not many people with cancer do like it, but hard to get it out of the narrative apparently. 

Anyway I go on social media in Jan and Cancer Research have done a good job with my words. Featured is the reason I wanted a wig, you can see what they write when they do, but this is what I told them about hair loss. "The wig and the eyebrows are mainly about what I wanted to share with the world because hair loss is a very visible indicator that you are the poorly person with cancer (people make that assumption about women with alopecia). I didn’t want to be setting off that signal, I wanted to be able to go out into the world with an element of ‘normal’ so my stuff didn’t interrupt whatever else was going on, it is about self protection and protecting my privacy. The wig and (tattooed) eyebrows are about the way I manage other people’s perceptions of me during treatment and they are an attempt to avoid being ambushed by both uninvited comment and pity. I choose who I talk to about my cancer and when." A bit like being pregnant or advice on childcare, people seem to be very inhibited about making unsolicited comment, so it is all about control really. I have no problem with admitting to trying to control the elements of my world that I can. 

Monday 28 November 2016

Round 4 Ding Ding

I've probably said before I don't update the blog when I'm in the middle of a bad time, whether that means physically or emotionally, the former because I don't really have the power of either communication or concentration, the latter because I'm too miserable. I  also suspect some of what I write is a difficult read anyway, well I know it is because people have told me, and I'm not in the business of scaring anyone. The gaps between blogs are generally the 9 days post chemo when being upright would be an achievement, I understand it is a breeze for some, that triathlons are run. In this house directions are taken from my bed and being up and about, as I am on the 10th day (today) is cause for much excitement. 
So I am up to having had cycle (as they are called) four of chemo.  FEC-T is three cycles of FEC and one of T, so I'm up to the first T. I knew what the side effects could be but it is impossible to tell what one might get, the list is endless, but it is so different for everyone. The headlines were less nausea, flu like aching, weight gain. I knew I could also start getting mouth problems such as ulcers, nail issues such as them falling off, and pins and needles.I was hoping mainly for less nausea. What they don't tell you is that this drug can cause permanent hair loss. People in America are suing the drug co. I've emailed Phillip Kingsley for hair loss reversal type advice post chemo. 

I can say nothing but that today is fine and the last 9 days have been anything but. I still had nausea although it was slightly less debilitating so I could sit up in bed, but I was sick more often. The impact on my stomach and digestion may result in a chart at some point, having become slightly obsessed. The aches and pains are more like being run over than flu like symptoms and all of that mean dehydration headaches. It was all very painful pretty much everywhere and the pins and needles were astonishing. Sleep was over challenging with that much pain and the worst of it is that some of the side effects don't go away post treatment. Now I am back to 'normal,' up and about quickly shakes off the previous week. Back at my desk doing some work and not quite fit and active, but enough near normal to feel happy about it. 


In other news, Cancer Research are using the film of my wig fitting so they came to see me pre chemo to show me mine and the other films. they are all really good, mine is funny. I pull a lot of faces saying no to a lot of wigs, I can see why children find me funny now, my face is like plasticine. You don't see that when you look in the mirror now do you. Will post link when it is up, no idea when that is. At least I know now which charity it is for now, I said yes to the Macmillan man at the hospital because he is so nice, didn't register that bit. Oops. #CANCERRIGHTNOW

Sunday 13 November 2016

Up Close and Personal

Its a long time since my last post because although this last week has been mostly fine, there were a good 10 post chemo days that weren’t fine at all. I don’t post when I am not okay because not being ok mainly means lying down trying not to move my head because that make me feel ill. There was a lot of sleep because sleep is a very good way to not feel ill. There were also some dark thoughts not helped by the afternoons being darker. I’ve not done a lot of why me’s since I was diagnosed, I always thought why not me, given cancer stats are up to about 1 in 2 (breast cancer is 1 in 7 or 8 depending on what your read). Last week there were lots of feelings about why me, it’s not fair, and how grim this treatment is. I felt like giving up, in the knowledge I wouldn’t, but being halfway through felt like there was a long slog ahead. I also felt like I just wanted to know if this was going to work for me. I haven’t felt despair, dread or fear very often since my diagnosis; the practicalities of managing treatment sidelines emotions, but the last post chemo period was utterly miserable.


There are all sorts of horrible things that people can get, cancer is just one of them. Like other things, I am sure everyone with cancer fears it coming back, because secondary cancers are not curable. Ever. The knowledge that chemo doesn’t work for everyone just makes me want to know whether it has worked for me and I won’t know that. There are a couple of reasons that my chances of secondary cancer make me more likely to be in that 30% group that it happens to, much as I would prefer not to be in that club. Secondary cancer can be treated, and basically that means it can be held at bay, or not. In reality it means chemo after chemo, a pause to see if it is ‘working’ and switching to different drugs until you run out of drugs. The treatment gives you time. The quality of that time is another matter and cancer is not a good death. 


This week is better, I am not veering from thoughts of death to optimism, but getting on with life. That does mean I have been doing some work, which I was very grateful to for taking me out of my head. I can’t ignore the side effects completely but they are tolerable. All of my organs are involved in being poisoned and my body felt that. My veins feel like someone poured acid down them (which they did) and the pain from that has made me sleep funny so now I have one of those annoying muscle tension type things down my left side. I am hoping it will be ok to drive, because this is the week of all the oncology appointments and blood tests before the next chemo. It only feels like I have had 5 minutes since the last one. One day I might be grateful for the treatment but right now it feels like this is grim, the approaching surgery is brutal (and I already have pain from the surgery I've just had) and the radiation is just icing on the case of burn upon burn.  

Next Friday is at least a different chemo drug, my nails are likely to fall out, my mouth will get ulcers, and my limbs will ache as if I have flu, but there may be no nausea. You can see how hopes become quite small, just no nausea please. I was broken last week, I walked around like a very old person, and needed a 3 hour rest after a bath. I'm not broken today which is why I can write this, I am grateful for a character that means I am not frightened that often. But like this blog says, there is nothing good about this cancer, and any cancer diagnosis means death gets up close and personal.

Tuesday 1 November 2016

When Half Way Still Feels Like Uphill


The day of being half way through chemo felt good, for a day. Well not even that, by 4pm I was in bed. The session itself was enlivened by the only person I have met in the western world who thinks Trump will put America straight. She'd seemed such a lively, lovely, kind lady and luckily left the rest of us speechless. The alternative of the ward agreeing would have been depressing. One lady I also see in clinic finished her last session and there was a sense of just trucking on through it but that has come to blows with the struggle that is being able to do nothing. Now it feels like three more to go, of a different drug, so different and unknown side effects. For now I can do literally nothing. When standing up makes you feel sick you tend to stay prone and this is the first time I've been able to prop myself up to read or write. That's four days of lying down, trying to eat so I don't feel weak and feeble with hunger, because that feels ever so slightly worse. As this veers through it's disgusting path, the thought of surgery looms. Whilst you can only take one step at a time, feeling this battered and weak whilst more brutal surgery approaches feels like I'm trying to do a marathon without any training. People say you would have to have more chemo if you needed it, I am still not so sure. Today I feel like giving up on this round, of course I won't, but I really hope tomorrow is better. I have new meds, let's hope they make the next few days better, even if they don't make the immediate aftermath that much more tolerable. The cards I should credit

Friday 28 October 2016

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. 

Wednesday 26 October 2016

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. 

Monday 24 October 2016

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. 

Tuesday 18 October 2016

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.