Next Stop Surgery ...

It's been hard to write anything, partly because things were a bit up in the air there for a while with genetics, but also because I have only been well enough to do stuff the last couple of days. It's been a bit of a slog, recovering from that last chemo drug, mainly because the fatigue and nausea didn't pass for ages. The fatigue is the punishing kind which means I wake exhausted after night's sleep, even with extra hours of sleep I've stolen in the hope of catching up in some way. I had to lie down one day after sorting the laundry because the task had taken all of my strength and I sometimes take naps which really just involve me passing out unable to move a muscle. Eating has become a little more do-able, in so far as everything is beginning to taste of what it is, not just paper pulp but nausea puts me off eating. Exercise is supposed to be beneficial but feels like some kind of unattainable fantasy at the moment, going to try for a walk tomorrow if it is a nice day, and not too cold. 

I've been discharged from oncology (well the chemo bit, I guess it is all oncology really) and they described me in their letter as tolerating chemo admirably well. In oncology world that is probably true, I had no hospital admissions and no infections, but that doesn't even come close to the way I experienced the side effects or described them in clinic. For all the talk about not keeping quiet about the side effects, because they can do something about them, my nausea and pain were inadequately managed. I also have a really nasty burn on my hand, which started from the inside when some of the chemo drug leaked. It's been burnt since the 9th December, and still hurts, but when I told the nurse how much pain I was in at the time she did nothing except move my hand slightly. I don't really see the point in talking if nobody listens. Now that chemo is over, they can't tell me if it has worked. It feels absolutely bizarre that I would have such a toxic treatment and there is no scan, no test, no nothing to tell me if it was effective. 

Apart from that there has been a bit more too-ing and fro-ing with genetics, not terribly easy to manage when unwell, and I needed to go back to give more blood. There weren't enough white blood cells because of the chemo and there probably wasn't enough blood because it is so difficult to take from me now. They have been lovely and I just tried not to be anxious about getting the results back in time for surgery. Anyway they got enough blood eventually and tested me for the genes, results came back the morning I saw my surgeon and there is no significant mutation. I think that means negative. This is good, it means no double mastectomy, so at least I will have one position I can sleep in, and no delay to surgery. 

I also had to have more blood taken for my pre-op assessment which apparently wasn't quite the right kind of blood test because there was also more blood to be taken before surgery ... they bank some of my blood so they know my group if I need a transplant during surgery, which is very unlikely, but more likely post chemo. I don't really understand any of this because they have my blood group already, but the nurse just kept saying it is different, and once someone has said that three times you know that is all you are getting. I wouldn't mind all the blood taking usually but my veins have hardened, so taking blood is not only difficult, but also painful. My arm hurts constantly and I do wonder if that will ever wear off. 

So next it is surgery next week; a mastectomy, lymph node removal, and immediate reconstruction which involves an implant. Having got my head somewhat around having an alien thing on my chest, I know the reconstruction doesn't always work, so hoping it does. The op is only the affected breast now, it was going to be both so they matched, but apparently they are more likely to be a good match if I let the first surgery calm down first. So I go back later for that if I want it and, depending on how everything turns out, I may not. I also don't have to have an expander thing in to stretch the skin before the implant, I won't go into all of that in case you are squeamish, but it is straight to implant. Although I may have to go back for a second surgery on the other breast, at this stage it means one less surgery, which is also good. 

It is good that there is no genetic link and surgery is a bit simpler than it might have been. I still have fear and anxiety about the surgery, the pain, the outcome etc. but guess that is all normal. I have fears about recovering from all of this because it has quite broken me, I can't imagine ever being the same again, and ever being free of fear that it will come back. I have absolutely no confidence in this conveyor belt of treatment where nobody listens to me, they just throw the kitchen sink at you. My main fear is secondary cancers, but they can only tell me what my risks are of the cancer returning in the next 5 or 10 years. There is a risk analysis model which applies to all the people with my risk factors and tells me nothing about me or my response to treatment. As far as I can tell, detection will rely on me identifying symptoms, so I can only hope that it doesn't return, and if it does that there is a very obvious lump in a place I can find it like there was this time and not like the other four cancers that were lurking somewhere I couldn't and didn't find them. 

Cancer Sucks

Christmas came and went and it was all quite quiet and cosy. It is a bit sad quite how quiet and cosy it was but one can only do what one can do. You’ve gathered by now I’m not running a triathlon in a pink t-shirt grinning like a poster girl I expect.

The only minor excitement came after everyone had gone back to work because I’d rung genetics to find out if my results were back. They then discovered my bloods had not reached the lab, which have a lead-time of 3 months. That would have been just in time for surgery. The lovely professor found another lab who can do the BRCA1 and BRCA2 test in 3 weeks. This is very tight for time and I didn’t pick up the messages from the lovely professor for a couple of days because I’d just had chemo and was abed with the poorliness. One of the messages said the lovely professor was having trouble contacting me and maybe I was away, chance would be a fine thing I thought. 

I was too poorly to get to the hospital for another blood test, so someone from genetics came out to me, they were at a local clinic. This would have been great except that I could tell in 2 seconds she would not be able to get blood out of my chemo hardened veins. My confidence wasn’t helped by finding out that she was an hour late because she had got lost and had just kept driving around instead of calling me as I had suggested when the appointment was arranged. It was painful and I was a pincushion who was being asked by this person what had happened to my previous test (really as if I would know) and who told me how difficult I was as she failed to take blood. I reminded her it was my veins which were difficult as she asked me what to do during he second unsuccessful and painful attempt. 

I was ill, ill enough to not have got out of pyjamas, and I’ve had to keep myself awake during all that getting lost time. It was time to take charge, so I just told her to stop and I would get myself to the hospital the next day where one of the phlebotomists would be able to take blood. More flapping took place because she wanted me in first thing but the timing of this was governed by OH being able to take me and prop me up, he not surprisingly had some work commitments. Genetics person rang her manager, I spoke to manager, 10.30am was fine. At this point I am reminded that everyone involved in this dialogue wanted to know why I was on my own at home and where my husband was, I did point out that one of us needed to work because I couldn't. How do people think you keep your house when you have cancer I wonder? 

Even the phlebotomist struggled, but bloods were taken, leaving me in pain. They were handed over to another genetics person and I went to bed once home. Results should come back the Friday before my Wednesday surgery and will affect what the surgery is. I’ve written to my surgeon to say I trust the date for surgery will not alter, and I don't think it will, because the chances of the test results being positive are low. It will though be a right pain if we don’t have the results and they come back positive because that would mean more surgery. I think they should just do a double mastectomy regardless, but they don't like removing healthy tissue, and without the genetic link it doesn't lower the risks. I don't understand that but all the research says so. 

The only other thing going on is that the effects of chemo are cumulative (probably said that before) so it is taking me longer to get over the last one. That makes it harder to be glad that the last one is over and done with, as are the injections I self-administer to raise my white blood count and which I hate doing. Today is 10 days post chemo and I still had to lie down after doing one thing due to nausea and dizziness. I also have weird tingling in my fingers and feet, which I know some people have a lot longer and worse than I do, but still hoping it goes away as the side effects wear off. If that and the skin peeling goes away, the only thing I have really lost is hair. That said; never again with the chemo thing. I shall take my chances and the risks of whatever else is doable. Having spent at least half of the past 4 months unable to function and in pain, quality of life wouldn’t be worth a repeat visit.

I’m now getting scared about surgery, which whatever it is, will be big surgery. Some people wear their scars with pride, you’ll probably have gathered by now I don’t. I’m scared of going under the knife, of the pain, and the outcomes. All of which is why I don’t want that surgery date moved. It needs to be done and over so I can get on with the next scary thing. Least this feel all doom and gloom, I do get on with things and stay positive, but cancer sucks. There isn’t a way around that. I'm lucky that I don't have anyone around me who expects me to be somebody I'm not. 

Cancer Research Film of my Wig Fitting

“In this video, I’m trying to choose a wig to wear after chemotherapy. In the end I found a wig that is

 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 Dec 28, 2016 at 8:38am PST

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. 

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. 

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

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.

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. 

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.