One of the key components of the #fubc Shawl kits is the ‘Knocker Jotter’, a glossy journal containing the portraits of 16 remarkable women who have not only been through what the introduction describes as ‘the harrowing journey of cancer, the diagnosis, the treatment, the side effects and living with them all’, but who also wanted to put themselves ‘out there’ so that others in a similar situation would not feel alone. They show not only their post treatment portraits but also a short biography with diagnosis and treatment and a picture of themselves whilst they were undergoing treatment.
When Susan and I were discussing how to publicise the fundraising #fubc Shawl Kits we talked about how we could best share all, or at least some of what, the Knocker Jotter represented and decided that I would interview Susan and invite her fellow Scarlett, as the women in the jotter dubbed themselves, Victoria, to be interviewed too. Victoria, whose portrait was the inspiration picture for the Countess Ablaze colourway in the shawl kits agreed and we sat down in the barn at Monkley Ghyll, location of the photoshoot, for an informal chat. Albeit an informal chat that I recorded and transcribed so that Susan and Victoria’s voices would shape this post.
I started by asking how the idea for the Knocker Jotter came about and how Susan and Victoria heard about it:
Susan: I was approached by Andrea Partridge, the Communities Liaison Officer at CancerCare. She had set up the online Pheonix group, for people who used CancerCare services but were often not able to attend daytime meetings or classes. It gave them an opportunity to ‘meet’ fellow patients, sufferers, recoverers, whatever you want, in an online space and to be able to share pretty much anything.
I think from that Andrea realised that there was, in many ways a lack of understanding and a lack of opportunity to find out things about surgery, life after surgery, reconstruction, all the different ways reconstruction can happen etc. and in conversation with the other lady on the cover of the Knocker Jotter, Sarah, they came up with this idea of a series of pictures that could help people see the progress, the stages, the changes etc. and show some sort of body positivity within that, that although we’d all changed, we were all still human beings, still ‘normal’.
Victoria also explained how she’d heard about the Pheonix Group and how important it had been to her:
My breast cancer nurse, she said they’d started a new online Phoenix group. Again you can’t always make appointments and sometimes you just don’t feel like you want to face people, the public, you don’t want to go and sit in a group and say ‘Hi, I’m Vicky, I’m 38 and I’ve got breast cancer’, you don’t want to do that sometimes, you just want to sit at home and it’s nice that you can just drop a message in or say ‘hi’ to someone online or put something out there like, ’I’m having trouble sleeping, does anyone else have this on Herceptin?’ and somebody’ll pipe up and say ‘yeah, yeah I do’, so for me I found that bit quite useful because you’ve got family or you’re working, you haven’t got time to go to the scheduled 1-2pm every other Thursday.
It was from this Phoenix online group and the bonds formed within it, that the Knocker Jotter became a reality:
Victoria: I don’t whether I would have gone in for it the way that I did if it hadn’t been for the online group. It was interesting that although I think it was probably known about wider within CancerCare all the 16 ladies in the project were all part of the Phoenix Group, there was nobody who took part that wasn’t part of Phoenix so it was a unit really.
All of the photographs were taken at Monkley Ghyll, Susan and her husband Gavin’s farm, with some of the sheep even making it into Susan’s own portrait. Having a suitable location was important in enabling the Knocker Jotter to happen as Susan explains:
They were looking for somewhere to do it because they’re reasonably sensitive photographs they didn’t really want a studio set up, so I just said to Andrea, ‘Well, why don’t you come here?’ and that was really where it all started from, they had the germ of an idea and once they had somewhere to do it, then it turned into reality.
However, the location also provided a safe space where the online bonds could be developed further:
Susan: The photo shoot ended up taking 3 days and it was quite an amazing 3 days. People bonded, people shared things that they’d not said to anybody else. People who were embarrassed disappointed, even disgusted by their own bodies, suddenly realised that they weren’t the only person in that situation and all actually started to feel a bit more ‘normal’. There was one lady who was really, really upset because her nipple was out of synch after surgery and was going for an operation to have it put back in line, and was really upset that it had been put off and actually by the end of the day I think she felt that it had all been put into perspective and what she was worrying about wasn’t that big a thing. She no longer felt like a freak, we’re either all freaks or none of us are freaks basically aren’t we? and I think just realising that really helps you feel more ‘normal’.
The pictures are incredibly striking but I must admit I couldn’t help thinking how brave you’d have to be to do it, and while I’ve come to realise that anyone who’s been through cancer treatment re-defines bravery, I did want to ask Susan and Victoria how they felt about it when the idea was first presented. Victoria was pretty clear on this one…
I knew they’d always wanted to do something to make people aware of cancer in general and then obviously when they decided to do this Knocker Jotter I couldn’t wait to get my kit off, and you know (laughter) and have a go really because I just think that a lot of people think cancer is never going to happen to them, me being the same, and you look so poorly during it, that it’s nice to see what you look like before, during and after, that you know you can get through this journey.
However, I did wonder if initial enthusiasm gave way to misgivings at any point:
Victoria: No, not really, for me I’ve just felt like it had taken away, you know it takes away your hair, it takes away part of your breast, it takes a lot of your time and your energy and it’s almost like you want to break that barrier and say ‘yes, I’ve been through this’, and ‘here are the scars’ and it’s kind of like I needed to do it to finally put a lid on it and say I’m done now, you’ve had that bit of my life. Yes, I will always remember it, it will always be part of me, but I can move forward and that’s how I felt it was for me.
I wanted to be able to put that message out there you can still look attractive afterwards, with or without your breast, you know, with or without the nipple, you know and the idea of me doing one [breast] in and one [breast] out was that you can still look ok on the outside and underneath.
In some ways its moving forward from it because. you know. I don’t want to live in that cancer bubble forever.
Susan: Actually I’m very very proud of the photograph, very very proud of being involved in the project and incredibly proud to be able to support it and to share it.
My photograph, I felt, was one of the most beautiful things I’d ever seen, and it was really interesting when I shared it online that I got no negative comments. In that social media world of nastiness there was not one negative comment and so many people saying they didn’t even notice that there were no breasts in the picture. All they saw was the happiness radiating out of my face and I think that’s what the whole weekend was about.
It just elevated people, people who’d been scared about exposing themselves, people who’d been scared of sharing it with family, people who had hidden it from friends, what had happened to them, suddenly they felt liberated. They felt able to be fully honest about who they had become.
I think that’s one of the problems with cancer. I think you feel you need to get back to who you were before and that, to be honest, is almost impossible and because of that there’s a sort of a reluctance to take the step to become who you have become, and I think once you take that step it is liberating, it is uplifting, it is life changing and I don’t think you ever go back to being the person you were before, but you also stop hiding from the fact that you have got to move on.
Victoria: For me it’s something I don’t think I’ll ever forget, you know, you have key moments in your life, like the birth of your children and, that was definitely one I felt, yeah I actually felt like I was free after I done it, yeah, definitely, for me anyway. I know some of the people may have had a bit of a struggle doing it, but for me I felt like I was free, like something had just lifted from me.
The Knocker Jotter was also launched at the farm with the barn becoming a gallery and the women seeing their portraits for the first time when they were revealed to an invited audience. I asked how that was:
Victoria: It was little bit nerve wracking because you just don’t know. We didn’t actually know that the finished product was going to be ourselves until we were actually there, so I think I was more nervous about whether I came across OK and whether the picture was me. Do you know what I mean? Because I didn’t want it to be something that wasn’t me. I do have lots of emotions and I am quite tearful but I’m also very strong and you know ‘I will fight this, and ‘I haven’t got time to die’, you know ‘I’m too busy with three children’ and yeah, I did like my picture, that did stand out and that’s probably why I chose the colour red because it stands out and it’s very bright and quite fierce looking and you know, so yeah…
I have to say that I think Victoria is right, this picture does capture her strength and her defiance.
The launch was a shared emotional experience that also served to cement the bonds developed among the women who took part:
Victoria: It was emotional as well, watching everybody else’s. You know their story and you could kind of feel their journey at the same time and it was almost weird but it was that look that everybody was giving each other across the room, ‘it’s your turn now, we’re all with you, we’re all standing together’ and that’s what I’ve always said, I had one picture but there was 16 of us, all standing together that day, fighting back. I think that really showed when we were there that night, I just thought, ‘yeah, we’ve got that togetherness’, that you know, you’ll see them in 10 years and it’ll be like you just saw them yesterday, because you’ve shared that. Everybody can see the breast picture but the process before, and during it, and afterwards, we all shared that. I think that was nice to share that one the night and it was definitely very emotional, you know there were tears, but not tears of upset, it was tears of togetherness and tears of ‘yes we’ve done this, we’re going to make a difference to people, we can get through cancer, you can come out the other end’.
Whilst the pictures are undoubtedly very personal what came through to me in our discussions was the key message of the Knocker Jotter; that by speaking out and sharing their experience others needn’t feel alone with their diagnosis. I asked Susan and Victoria what was the key message they wanted people to take away from the Jotter and their involvement:
Victoria: Some people think perhaps you’re doing it for attention, or ‘milking it’ as some people have said. Well, hell yeah. If I can get one person to think well, do you know what, ‘I’m going to start checking’, or you know, ‘I’ve got something that’s not quite right with my body, I’m going to go’.
Just check, don’t be embarrassed, don’t be frightened and don’t take ‘no’ for an answer because I was told there was nothing there and I just knew something wasn’t right, know your body and if it doesn’t feel right, shout out. Don’t be frightened, because the thing that you’re frightened of is dying, and that’s perhaps what’s going to happen if you don’t go. That’s what I always say to people.
Susan: I think for me it’s also, how do I put it, if you do find yourself in the position where you have cancer it no longer has to be the end, it isn’t the end. Also, it tries to beat you in other ways as well as the disease itself, it tries to make you feel less than whole, it tries to make you feel less than a woman, it tries to stigmatise you. Really there’s something about cancer that tries to get you in so so many ways beyond the disease itself and I don’t feel that those changes in us are necessarily, I can’t say it properly now but you don’t have to let it beat you in those ways. Those scars you can wear with pride because you’ve beaten the disease rather than it’s beaten you, and just because you’ve got a scar that you have to look at every day, look at it, own it and say, ‘that scar is part of what saved my life’.
Victoria: It’s a good scar, it’s a battle scar
Susan: Yeah, it’s a sign that you’ve won and it’s gone and you’re still beautiful whatever it tries to do you.
As the conversation progressed it became clear that the completion of treatment is by no means the end of the journey:
Susan: What you have done to you is absolutely enormous, physically and mentally, and it is exhausting in every way and you come out of it, not looking the same person you were before, and no matter how much of a feminist you are or how much you try and convince yourself that the physicality is not the important thing, and there’s the ‘just be glad you’re alive’ as you get told again and again and again.
Victoria: What are you upset for, you’re still here.
Susan: You are still looking in the mirror and you’re not the person you were before, and that is such a shock to the system. To cope with not just the other changes, but to actually look and not recognise the person in the mirror is like a living embodiment every single day of the journey you’ve been on and the struggle that you’ve had just to stay alive, so you’re constantly being reminded of it and that’s why a lot of people are uncomfortable with the scars because it’s the reminder. If you try to put yourself back together like a jigsaw puzzle to how you were before, you can try and pretend it never happened, but that doesn’t help the overall situation in some ways and it doesn’t help the next person who gets cancer deal with it, and I think somewhere along the way some of us have to share it to help the other people who find it harder to do so.
Victoria: I don’t think it hits you really because you’re so busy getting through the chemotherapy, the radiotherapy and you’re throwing everything into getting to sleep and getting up that you don’t really have time to think and then all of a sudden you’re coming out of the other side of it and you find yourself, like me, driving into Lancaster and it’s ‘I can’t do it’, I’ve driven all over the country, but I pulled over in floods of tears, ‘I can’t drive’, I had a complete meltdown. I went to the doctors and said, ‘what’s wrong with me’, and he said, ‘it’s just that you’ve had such a change in your hormones and everything else, you don’t have time to look at what cancer’s done to you and you’ve got all these emotions and all these other issues going on. It’s a big toll to take on your body and you’re so busy fighting physically that you don’t really have time to sit back and look and think. Then you’re, ‘wow, I’ve just had this, this, this, it was stage 3, it was in my lymph nodes, and then I can’t drive into Lancaster, and I’m having palpitations and sitting there thinking someone is going to have to come and get me because I’m struck at the back of Our Ladies [school] and I can’t drive anymore. It took me a long time to just stop getting panicky about going into certain situations and I don’t know why but I did for a very long time.
This relationship between the physical and emotional toll is a complex one with the physical impact the emotional and the emotional impacting the physical as Susan explained:
Certainly I found, as you know bodily I’m now having to have physio and things like that. One of the things that I have been doing without almost even knowing I’ve been doing it, is that I have been hunching my shoulders and closing up my chest area without even knowing that I’m doing that. Part of that has been protection from the physical wounds and worrying about them being knocked or bashed or whatever and some it is probably also the psychological hurt that you’re feeling that you’ve had all this physical pain directed at your body and you are sort of shrinking into it. But interestingly, Andrea had mentioned to me that most women who’ve had surgery, after surgery wrap scarves and shawls around their upper body, even if they didn’t do it before. There’s this sort of almost instinctive urge to cocoon yourself and protect yourself and those extra layers give you that confidence almost to go out into the outside world without feeling exposed. Even though nobody can see those scars I think they are so raw in your head, yes, you need another layer of physical clothing almost to provide you with psychological support.
Throughout their journey through treatment and into recovery Susan and Victoria have valued the support and services that CancerCare it offers noting that it helps to fill really important gaps:
Victoria: It is a fabulous service because once you finish your treatment you go and your check up is in 6 months and that’s it, so you come out and it’s like ‘wow’, you’ve had an appointment, 2 or 3 appointments every week for nearly a year and now everything is over and done and you don’t see anybody and that’s I think when the anxiety kicks in, so they do the counselling and hypnotherapy and all sorts of different groups and therapies.
Susan: What I’ve had is above and beyond, even with my lymphodema I had 6 weeks treatment with the NHS, next week that ends and I can go to CancerCare and have exactly the same treatment and that can carry on for as long as I need it, and all of those services are free, that’s the thing to really to get clear – we and nobody else involved who benefit from it, pay anything for it.
Victoria: It’s amazing really, it fills that big gap that the NHS obviously don’t have the money to fund, and I think without CancerCare I think you would have people at crisis point.
Susan: We’re very lucky, not lucky to get ill, but I’ve said I’m so glad that if I was going to get ill it was here.
CancerCare provides support for all those affected by all types of cancer, children, partners, parents, carers etc. It is an independent Charity which brings together a network of professional, qualified and experienced staff and volunteers with a range of skills, experience and insight.
From people like Andrea and Sarah who have been through their own cancer journeys and recognise what support is needed and set about making it happen, to the volunteer drivers to take clients to their many appointments, to the professional staff who provide clinical treatments and alternative therapies, to the group leaders who facilitate the needlework and woodworking groups and foster mutual support, and to the wider community who fundraise and support the work, CancerCare is at the centre of our healing community and means that nobody needs to feel alone.
Perhaps key to all of this, and the one thing I’ve seen clearly as I have witnessed Susan’s journey, is summed up by Victoria;
I think it opens the door of friendship as well
For those who walked through that door and who took part in the Knocker Jotter to raise funds for this immensely valuable support in our community, that bond of friendship will endure:
It was such a positive experience. Like Susan said, the bond there, I felt like I’d known them for 20 years. We all sat in there and there wasn’t any awkward pauses or moments, or there wasn’t a point where you’d felt like you’d upset anybody, it’s kind of like we all have this common thing and you know how to talk to each other, you know I remember Sarah’s mum saying she’d been out and she stood here [outside the main barn door] and we were all in there and she said she could just hear laughter, just women enjoying it and laughing
You can find out more about the amazing work CancerCare do on their website.