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.