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Awareness Week – How Do We Judge its impact

11178357_969014386494888_5110183109259306255_nSo two weeks have passed since our second ‘Cancer and Pregnancy’ awareness week and there has been a lot for us to take stock of.

We held our first ever conference, we received some excellent media coverage both in television, on radio and in paper/online form, many of our mums shared their own very powerful stories of what they have been through and we also received some great support from many of the bigger, much longer established cancer charities out there such as Beating Bowel Cancer, Sarcoma UK, Macmillan, Lymphoma and Leukemia Research and many more.

As the week progressed, we as a team flowed on a stream of adrenaline, rushing round from place to place, planning, putting final pieces in place, organising events and much more but the question I have is how do you judge the impact of an awareness week?

There are a few ways of looking at this, and this is part of the challenge as to where to plough our energies next. For a small charity like ours, resources are limited in terms of time therefore we need to maintain a focus and follow up on what we reasonable can.

For us, with the awareness week, there were three main aims:

  • Increase knowledge of the charity and with it the number of women who access our support/the number of women referred to us;
  • Increase knowledge of the charity amongst medical professionals, but more importantly how some of the signs of cancers can be hidden by pregnancy;
  • Make people aware, both medical and public, that cancer can and does get diagnosed during pregnancy or shortly after a new birth.

With the first point, this is a year round aim but yes we do see a spike in the number of women finding out about us because of the awareness week which is great because it means for those women they now have a go to point that they didn’t know existed previously. We strive for this constantly so that, if we can do nothing else for a woman in this situation, we can at the very least reduce her feeling of isolation.

The third point is about seeking ongoing acceptance of the reality that this situation presents. I think people are deeply uncomfortable with the concept of pregnancy and cancer taking place within the same timespace. I think part of our psyche is set at a default doesn’t want to accept that this most precious of times can in reality be interupted by a cancer diagnosis. I’m not suggesting for one moment that it is wrong to do this. In fact is it quite understandable but it happens nonetheless and is something that we need to keep reminding people of. Not that it is commonplace, or that we want every pregnant lady to have it in her mind. Far from it, Just the acceptance that it does affect some women and that when it does its presents huge emotional and logistical challenges for a family.

Back to the second point and that is about educating medical professionals about cancer in pregnancy. It sounds wrong to phrase it like that because I am not medical nor are many of those involved with the charity as trustees save three, so who are we to tell a medical professional what they should know. No!

It is about heightening an awareness amongst medical professionals that this does happen. In reality the majority of those working in midwifery, oncology, obstetrics and other will never come across a woman in this situation, however for those few who will, we hope we can make them aware of how those women can be helped emotionally, the little things that can make a huge difference to their pregnancy experience and how in our limited experience they can help to ensure that a pregnant woman with cancer remains a pregnant woman above all else.

There was an issue that we did set out to unpick by this years awareness week and that was the missed diagnosis of cancer because a woman is pregnant. The fact that some cancers can quite reasonably be masked by the pregnancy or the immediate post birth body changes. In this respect we heard from several of our mums either in television interview or via their shared stories on this blog about how they complained numerous times about symptoms that turned out to be due to a growing cancer, but who were time and time again, told that they were fine, or that it was just part of the pregnancy, or that they had just had a baby so what did they expect.

Part of the issue here is balance. On the one hand there an issue of compassion and 11252455_969011673161826_1162364134301534270_nrespect towards the pregnant mum who knows herself and her body, who should be listened to with an open mind when she complains of a pain or issue and in this the GP or professional they present to should surely be going through a tick list to rule out the possibilities within reasonable grounds. When I say reasonable, no we are not suggesting that every mum who presents with a tummy pain should be immediately rushed through scan after scan to rule out cancer. We know that is not realistic.

But there is a fine line between what I have said above and then seeing a pregnant woman complaining of a repeated pain, or issue and responding to her as if she is automatically neurotic because she is pregnant. The reality is that, unless absolutely necessary in her mind, no pregnant woman, early stages or otherwise, particularly relishes a visit to the GP or hospital unless she is genuinely concerned about something. Give pregnant woman a lot more credit please.

In the context of the awareness week, I think we did, with the help of others, achieve what we had set out to with the above point.

It felt at one point in the week, probably the day of the conference, that we walked up to the next huge milestone, climbed up to the top of it and people suddenly saw little ol’ us, Mummy’s Star, waving frantically, shouting “listen to the woman who is sat in front of you” “Pay attention to what she is saying”. It felt like people genuinely stopped and started to think “What if one of these women came into my surgery tomorrow?” “What if one of these mums was referred to me about her options in childbirth because she was now on chemo” or “How can I make sure this woman enjoys this pregnancy?”

That’s what we wanted to get people saying and thinking and I think/hope we achieved that.

This year too, the other big difference, is that people got the hear more about why senior figures in the medical professional back us and have become involved with us. Our patron Dr Jacque Gerrard, Caroline De Bie from the Pregnancy and Medicine initiative in Belgium with whom we have forged very strong links and our advisor Dr Richard Simcock. In addition to their own tailored input from the field they operate in, there was a big sense of the ever growing team that makes up Mummy’s Star. In his television interview Dr Simcock talked about “the work we have been doing today with Mummy’s Star in educating midwives…..” WE! Thats the word that stuck with me.

Mummy’s Star is now much more more than those of us who originally came together in Mair’s memory. As many of our mums said during the week, its become “our Mummy’s Star family” “our community” That kind of feeling fosters such a strong sense of trust. One of our mums summed it up when she said “I felt so heart warmingly content when I left yesterday, actually feeling so cared for!! #proud

We approach the awareness week with a sense of excitement at Mummy’s Star, not in the traditional sense, but in the part that this is our chance, our little opportunity to make a big noise in a huge an ever growing sector. Excited in the relief that by the end of it we might be able to support more mums and hear that sense of a virtual hug that they gain from our forum, Butterflies at the prospect of hearing a big, established charity saying “we support them” and in that, we know that we are being taken seriously by those who know much more about cancer than us.

And this is the point where our sense of perspective is vital. We have not set out to change the cancer sector or even a part of it. We have set out to ensure that no one diagnosed in this situation feels like they are lost in the mire or that they are a number or that they are no longer pregnant and are now a cancer patient. We are not aiming to find cures, or fund medicine etc. There are those much much much more knowledgable in these fields doing an extraordinary job, against a backdrop of increasing cynicism and queuing critics.

DSC_080501No! Personally we set out to try ensure that no woman diagnosed with cancer in pregnancy or within 12 months of a birth ever feels as alone and isolated as Mair did or those trustees of ours Dawn, Nicolette and Clare,  when they received her diagnosis.

We’re are getting there. We’re chipping away at a big block that has only just been dug up after years of being covered, but we are getting there and that I believe, after only 2 years, is cause for just celebration.

Pete

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