2 Weeks Ago

I wrote this 2 weeks ago, but had some gremlins that wouldn’t let me post it, & then I went back to work… more about that later. 

The final part of my treatment was radiation. It was in all a bizarre experience but much easier to manage than chemo, the side effects have been quite marked fatigue and feeling sore, experienced alongside the drudge of going to the hospital daily. My 15 days of radiation stretched out over 4 weeks, due to the bank holidays. Extending time of treatment is never welcome but it was a relief not to have to go in on those days I didn’t. Hospital time is not like real time, the board that says they are running on time is running to someone else’s time, and generally that person is not early for anything, they are late. The waiting room was thought mostly a cheery place, even the moans were cheery, we were all making the best of it. I also saw a lot of people a great deal worse of than me, one of the  depressing things about going to a hospital regularly is that they are full of people who are very poorly.

This is the day before I go back to work. Going back to normal isn’t on the cards, the physical and psychological impact of cancer prevents that, and I am still in pain/discomfort most of the time. I am looking forward to it though, the anxiety and depression which were eroding that have taken a back seat, hopefully never to return. There were some very miserable times back there in that land. But the universal experience of humans is to forget pain once it has passed and even the horror that was chemo is back in its box. I can’t remember how I did what I did in my job but hoping that will come back and the work I have done from home whilst in treatment gives me some confidence that it will, as does all the online engagement I’ve had with others involved in my profession. I have a great manager and a plan to manage me back into work, not rushing anything, but hoping it won’t be too long before I can do my actual job. Meanwhile OH is in France for work, and whilst I wasn’t looking forward to being on my own at this time, it does at least mean I can collapse into bed at the end of a working day, with beans on toast if I need to! The fear that has been a constant companion during treatment has retreated into what is probably denial. I am sure it will resurrect itself if any of the symptoms of secondary cancer arise, they can be symptoms of other matters of course, but the wait for the outcomes of scans will never be anything other than anxiety inducing. 

I have not been a ‘good’ cancer patient. I have been truculent and difficult at times, although never (hopefully) unreasonable with anyone trying to help me. From the outside breast cancer world is pink ribbon waving and running 5k. From the inside it is a conveyor belt of treatment and world of pain, which various professionals say they will help you manage, but which is unmanageable in my experience. Don’t get me wrong, if it has saved my life, and the cancer doesn’t come back, I will be grateful. I am not ungrateful if it doesn’t. It has also been a world which has refused to discuss the notion of the cancer coming back. I remain deeply disappointed that the conversation with professionals is a narrative framed by ‘don’t think about that’ or ‘think positive’. I don’t want to dwell on the return of the cancer, that way lies death which is never easy to think about, not least when a cancer death doesn’t equal anyone’s idea of a good death. I just would have liked a rational conversation about whether that might happen for me, what that would mean for me, and how it might be managed. I can hear those who tell me to cross that bridge when I come to it, which is fine for those who care about me who don’t want to think about death either, but it wasn’t what I needed to hear from my doctors. As someone who routinely has difficult conversations with people, hopefully managed with kindness and humanity, the avoidance has been perplexing. My treatment has been governed by targets and guidelines, it appears to me that some find their comfort zone in that kind of scaffolding around their profession. I think that is shameful because it negates the experience of the patient. We are supposed to just do what we are told and dialogue which has a less clear cut framework disappears into the ether. Having said that, I know there are some people for whom their medical team have been able to confront their fears with them, and who have not lost sight of their patient. I also suspect that the most down to earth person I have met, who was the professor of oncology, would not avoid my fears or questions. I just only met her once and didn’t ask about that stuff. I might next time I see her, but I saw a different registrar each time.

For now we just have to have hope. Easier said than done as most things are. 

The Low Down

I haven’t updated the blog for while because it has all been a bit miserable. On a positive note I have been feeling more physically able. I have some pain from surgery still and am adjusting to having a numb underarm from the lymph node removal. I do have most of my mobility I just also have an arm that feels like it has been thrashed with stinging nettles on the underside from underarm to elbow. I am hoping this is nerve damage, which might fade. I also still have some side effects from chemo, mainly in my toes and fingers, and my nails are terrible. On a more positive note, I have been able to be much more adventurous with the walks and can now do the hour long walk which is a circular walk through the next village and back again. Mentally thought it has been a different matter. 

One is warned to expect depression and anxiety as the result of a cancer diagnosis, but apart from some low moods on some days and one meltdown per chemo cycle, I was just getting on with it. Then it struck. I have good support from my GP, as well as a supportive husband, and friends. But, (I like starting sentences with prepositions) whatever your support is like, you are on your own with anxiety. Anxiety is colouring my days, interrupting my sleep, and making me feel overwhelmed by things I don't normally feel overwhelmed by. Fear of the cancer is the antecedent to my anxiety but anxiety is like a butterfly looking for somewhere to land, as soon as you soothe your mind of one fear, anxiety finds another to land on. For me this isn’t just the trauma of the treatment but also the fear of secondary cancer (the terminal kind) and the knowledge that I am responsible for identifying those symptoms. My cancer was in my lymph nodes so it could have travelled already, as well as being able to travel via my bloodstream, but nobody is going to be scanning me. There is probably a very good medical explanation, after all any scan is just a snapshot of a moment in time, so can only tell you whether you do or don’t have cancer on those days. 

I knew to expect depression/anxiety at the end of treatment. I’d anticipated this with a referral to psycho – oncology. What I really wanted was to talk to a therapist who understood cancer. They didn’t really offer that, various support groups were offered, but (I don’t know if I am right about this) I don’t really want to sit with a lot of people talking about cancer because I think that will scare me more. I have instead contacted a charity that offer a counselling service for cancer patients, it turned out today there is more of a waiting list than I’d originally been told. I suspect these emotions are with me now because I have a break in treatment and not having to focus on the physical problems that displace emotions. They have all come crowding in now and that this is all a normal reaction doesn’t really help.

None of this has been helped by some confusion over treatment at times. I have consultants in surgery, radiotherapy, and oncology and none of them prescribed Tamoxifen, which I knew I should be taking for 10 years from some point. To cut a very long story short, it wasn’t until I had a call from the clinic (about something completely different) that I knew to chase everyone and found out I should already have been taking it. I don’t have any idea if the delay is significant, it worried me, and it vexed me that it took me chasing all 3 departments to find out.

To update on where I am on my treatment. I hadn’t healed enough from surgery at my 1^st March appointment with radiotherapy. I was asked to come back in 2 weeks that turned out to be 3 because the Dr was away the week I was due back in. Radiation is very targeted so I’ve been tattooed and lined up on the bed I have to lie on to have it and it starts on the 5^th April. I thought it would start before that; it would have if the Dr hadn’t been away, so it all feels a bit of an arbitrary conveyor belt. The good news is that they do evening appointments, so husband can take me to all except the ones that needed to be earlier, which will be helpful, because it might hurt and radiation causes fatigue. Apparently daily trips to the hospital are responsible for part of the fatigue, they don’t fatigue me now, but maybe daily is different. 

Post Op Second Time Around

I think I have kind of put off writing this because, although medically speaking the surgery went well, things have been all kinds of difficult. I hadn’t realised that it was such a big op until the day of surgery, which is probably just as well because I was already scared, but that also meant I underestimated the aftermath. I was in hospital for a week, which was its own adventure involving a ward move and inedible food, and was I was mainly in pain, sick and tired for the duration. I did manage to stay awake for a friend’s visit but balked at asking anyone else to come along just because I was in such a state. Post op complications that were pretty minor for the medics didn’t really feel that way for me and my return home was characterised by numerous journeys back to hospital along with continuing pain, fatigue and nausea. I am just coming up to 4 weeks post op, so there is an element of my own impatience in here, but it was miserable. 

Most of the time I am just putting one foot in front of the other and getting on with what I can, rather than being miserable, but sometimes that isn't possible. It is difficult to still have pain, fatigue and nausea all on-going to some degree. I have been back to see the surgeon and everything is healing as it should be, the few on-going post op issues aren’t going away any time soon but nobody is particularly bothered about them except me. The histology from surgery is good, in so far as all the cancer has either been removed or zapped by chemo. I am still worried about the lymph node involvement, although it wasn’t many nodes, my cancer may have travelled. Nobody does anything to check this. Patients are left to find the symptoms of secondary cancers themselves which we all find scary. 

As ‘all is well’ we now go ahead with the radiation. I’ve been warned about side effects from radiation, guess what, pain, nausea and fatigue are in there! I will always be grateful to be someone who can be treated but that doesn’t make the treatment any less brutal or less of a conveyor belt. I am also grateful to the lovely friends and neighbours who have been so kind and supportive. There are times when I can hardly process this experience, let along face it head on, and having them there to face something quite this frightening with me has been priceless. 

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.