We asked people if they had any messages to pass on to others. These covered various aspects of dealing with a health condition including the importance of knowledge and support as well as more practical suggestions.
Some people said that it was important to take control of your treatment and “stand up for yourself”. Several also said that it was best to get things checked out sooner rather than later. In relation to genetic testing, one woman suggested that people should be positively ready to hear what they don’t want to hear because that is “better than being oblivious” to the situation.
Harriet is a management consultant and is married. Ethnic background/nationality' Jewish/Russian/Polish
I think the best piece of advice or information I’ve ever been given is that you really have to be your own advocate at every stage of your process and don’t just take it as given. Always understand and push and be sure that you’re happy with what you’re getting and that the quality of your care is what you expect and deserve. Even in a place like the [hospital] which is brilliant and in the private patients’ day unit where you would expect it to be incredibly brilliant, there are systemic problems and there are process problems. My experience as a recipient sometimes has been more stressful than I believe it ever should have been. There are some who agree with me and I had to complain on one occasion, well I was asked to complain by the nurses, and it got taken very seriously. I’ve noticed since then there are improvements.
You really have to stand up for yourself and to make sure that what you’re getting is right for you, and that you’re treated with dignity and respect and low levels of stress because you don’t need any more stress than you’ve already got when you have cancer. So that’s a big piece of information. I don’t know where I picked that up but I certainly have held on to it and it’s stood me in very good stead.
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Hayley a teacher, is married and has three children. Ethnic background/nationality: Jewish
Do you have a message for anyone who might be thinking about being tested or is just about to be tested? Is there anything you would say to people?
I would say, absolutely do it, sort of get control. You know, absolutely do it, without a shadow of a doubt, because you’re best off to know. I mean you don’t want sort of die of ignorance. With breasts at least they can check out, and you can detect something relatively early, as long as you don’t ignore it but ovaries you haven’t got a hope because just by your monthly cycle you bloat. You don’t know, whether it’s you, it’s them, you know, if it’s a cancer rather. So I would say don’t be ignorant, go for it. Knowledge, I do believe knowledge is great. And then you can have control, and yes, I mean, yes, it does blight you from here on in.
I mean if there’s a room of five people, five women, I have got one in five chance of breast cancer. It crosses my mind every time. If someone’s going to get cancer in this room, it’s going to be me … but then other times I don’t think about it, you know. You do think it’s there. I think it’s there for every woman to be honest Every woman has to check herself, every woman is told, be aware, be aware of this, that and the other. So, particularly, I think when you hit your forties, I think it becomes even more relevant. So… go for it.
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Sylvia is a retired social worker. She is a widow and has had two children. Ethnic background/nationality: White British
Yes, that Crohn’s is… can be extremely inconvenient. It can be painful, but don’t ignore it. It is important that you see your doctors, have the tests, and be aware. And also think of yourself. If you’re feeling rough with it, then, you know, I know it’s hard to say, but at least try and rest up. Give yourself a bit of space because if you don’t, no one else is going to. So accept that you have this, and take care of yourself as much as possible, because you’re the important one.
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Michelle is a tutor and housewife. She is married and has 3 children. Ethnic background/nationality: Jewish
Message? Well I I don’t know if I’ve got a message for them, but I say I totally understand if they’re feeling shocked and stunned and they’ve got some choices to make, but when they’re ready to make those choices, they can take control back. And actually, you know, it’s very raw for me still, very raw, you know, but the ovaries are separate but my boobs, great. It’s not, it’s not fantastic, you know, of course I’d rather not have that, but life go… it’s fine. It’s fine. Having a mastectomy. I would, the message I would give to somebody is “You want to see what my boobs look like? Because they’re great. See my boobs and you know what, it’s okay. But you’ll be here and that’s what matters.” That’s kind of where I’m at, but you’ve got to get there yourself. You won’t get there by people telling you that, you’ve got to go through everything and come where you’re going to be at the end emotionally, because everyone’s just, you know, different. I actually probably took longer to get there than most, and I think most of the people, “Oh my God I’ve got that. Take it out. Get my boobs off.” You know, but I wasn’t like that. I fought tooth and nail to keep my body intact. But BRCA won and I had to listen to the doctors and it’s not a good place to be having that gene.
Other messages focused on the importance of talking to others or joining support groups. As Karen said' “Talk about it because it’s not going to go away - but you realise you are not alone, there are a lot of people out there.” Stewart highlighted the importance of talking about Factor X1 Deficiency because it is a little known condition which can be controlled.
Caroline is married and has 3 children. Ethnic background/nationality' White British (Jewish)
I just want people to know there are plenty of us out here, and the best thing for me has been talking to other people who are carriers. It can be the most isolating thing in the world to think you have this mutation and you don’t know anybody else. Just try and find other people. Look online, go to support groups if you can find any, but talk to other people, because it is really, really frightening and I’ve seen a lot of people who look like they’re falling to pieces because their partners don’t understand what’s going on inside their head. So just make sure you talk to people and talk about it because it’s not nearly as scary as you think when you talk to someone else.
Other practical tips included making sure doctors know that you have a particular condition and letting them look at you properly.
Deborah is a retired secretary/foreign correspondent and translator. She is married with two children. Ethnic background/nationality: Jewish English
Would you have a message to anybody about your experiences, who might have found out they’ve got Factor XI deficiency.
Well I would just tell them to be aware, and it’s a good idea to, well they would only be aware that they had that deficiency if they had been to haematology. They would have found out through blood checks. But always if you’re having any surgery or any procedures done, always tell the surgeon that you have this problem. I know that there are certain little procedures that could be done, and when they hear about it, sometimes the surgeons are scared to go ahead with something, because they think, oh she’s going to bleed, it’s going to affect the... I might get sued or something like that, so it doesn’t happen that way, it there’s always a remedy, a very easy remedy now.
And I know my son said, “Having fresh frozen plasma injected into you”, he said, “It’s like having a transplant,” [laughs]. You know, your blood is going into your veins and everything. But if you have a blood transfusion and you bleed it’s the same thing, that’s going into your veins, just the same. So there’s no danger with it really. It’s just the case, it’s a nuisance. But you have to be aware and to tell whoever you’re going to visit that this is going to happen.
I think, also I was told that even if you have a dental extraction, or some gum surgery, or something like that, you should always tell the dentist to be aware, just in case. It’s very rarely anything happens with small type of procedures like that, but you have to be aware, just in case.
Some people, particularly those with Crohn’s disease, stressed the importance of rest and of “learning to listen to what your body is telling you”.
I would just say learn your own body and what you can and can’t eat don’t let anybody tell you what you can and can’t eat because it doesn’t work like that. It doesn’t work like that, you have to, you know best. You have to try and, and see. If you can’t eat that particular type of food, you’ll know very, very quickly that you can’t, this doesn’t agree with you, and it’s probably not going to change. It’s not like allergies that can come and go.
Because also I went to try some homeopathic treatments and naturopathy, you know, and they told me, oh you have to eat this, that and the other. I said “I can’t eat that. This is grain, this is going to destroy my bowels. “Oh no, it’s fantastic. It’s healthy. You have to eat it”. The fact is that I can’t, and it doesn’t matter how someone believes that I can. You have to see and learn for yourself. It’s the only way.
Some people stressed the importance of a positive attitude and of putting things in perspective. As one woman with glaucoma said' “If anything happens with your eyes, don’t despair, a lot of things can be done”. Another, with breast cancer, advised;
“It’s a very long road - take it step by step. I was always trying to jump ahead in my mind to the next treatment. Just take one treatment at a time and you will get through. You know, there is definitely life after breast cancer.”
Karen is a barber. She is divorced and has 2 grown up children. Ethnic background/nationality: White Caucasian
Well, if you’re thinking about getting tested, be prepared for not hearing what you don’t want to hear, but treat it that it’s good to know, rather than being oblivious. For someone that’s been diagnosed, I was given by someone who’s been in and out of remission with ovarian cancer, who’s a friend of, a friend of mine. When I saw her, literally just as I found out, she said to me, “Treat the disease with the contempt it deserves.” And that’s exactly what I did. I did. And even though I was lying there and I could feel… because it goes, the chemo, to your nerve endings, and you get these shooting pains and you feel like rubbish. I laid there and I thought bring it on. The more I hurt, the more ill I feel, even though I didn’t walk around like I was that ill, the better it was. I just thought ‘good, get it’. And that’s it. Just stay positive. It is really the key. Do not let it think for one minute; this disease, treat it like it’s your enemy and do not, for once let it see that you’re weak and that you’re going to let it get you. Because it will, if you, it will. It might not. But it certainly has more of a chance. You really have to be positively mental, you know, ahead of it. And that’s all I can say really because that’s all that I did and still here. Thank God. Yes.
Stewart and Marilyn are married and have two grown up children.
Stewart worked as a taxi driver and Marilyn is a care worker. Ethnic background/
Is there any message you’d give to somebody who’d just found out that they’d go it?
Marilyn: I think we would have two different types of messages.
Stewart: What? A message to somebody who’s found out they’ve got the factor 11 deficiency? I would assume that, the hospital and your GP know about it. And allow the doctors to look after you as best as they can and take whatever advice they want to give you. Like simple things as not having aspirin because you mustn’t thin your blood because it’s thin enough without being helped by medication. If you have to take cold or flu treatments, make sure you take the advice and keep to the advice that the doctors give you. Because at the end of it all it cannot be cured, it can only be controlled.
Marilyn: I think my messages for this, from the person looking on, is to cheer, actually to say, “Well you know, this isn’t going to kill me outright, it can be controlled”. I have just got to be careful, everybody’s got to be aware if they, if I’m in accident we act on it promptly, but I think you cheer; It’s not a death sentence as such. You know, and I think you have to remember that because if it comes along with another illness as it has done in this instance, that could have been a death sentence. But I would say go out get your family checked. Spread the word. It’s important. We need to spread the word about factor XI because it’s not discussed. That’s why we are doing this today.
Some people’s messages were for health professionals. Simone, for example, stressed how much she valued the support of her breast cancer nurse and thought that all women with breast cancer should have help from a specialised nurse.
Is there anything you’d say to health professionals?
To be a little bit more open-minded, you know, and listen. Listen to your patients, because as I said I’m really lucky with my consultant because he does listen. But I’ve been under doctors that are not interested in what the patient has got to say. They are just not, they look at you like a sample of something and if you’ve got a, b, and c then it must be x and no, there’s no place for any input from the, from the patient, and the patient, you know, even if they’re not the most clever person in the world, they still know their own body and they can feel what’s happening with them. And I know that if people will listen more, things will be easier for both sides.
Also, because there are different consultants for different issues, and it’s only the patient that can see the whole picture. You know, if there’s any ENT consultant that looks at one thing, and the pain consultant looks at something else, and then internal medicine looks at one thing, and sometimes if you bring everything together and look at it as a whole, it’s one person after all. It’s not divided into bits. And things are a lot easier to cope with and I suppose to diagnose as well.
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Caroline is married and has 3 children. Ethnic background/nationality' White British (Jewish)
I think health professionals need to encourage patients to meet other people, they need to know more about where they can find support groups because you go along to your GP and they sort of talk to you and get excited about your mutation and it makes you feel there is something seriously wrong with you. And they need to say, there are support groups for this. There are places you can go to talk to other people. I think that is the most important thing, that they put people in contact with other people and just explaining things clearly. Not just throwing a bunch of numbers at people saying you’ve got a chance of this, this, this, this, this because that’s terrifying. I think more counselling and an approach that’s the same all around the country because I come across people who have a totally different experience to me. So it would be nice if all the PCT’s did the same thing because otherwise some people are having a really good experience and other people are having a really horrible experience. And also just to be aware that when people go into surgery for risk reducing surgeries, people are going to feel very like frauds going into cancer wards. And just be aware of that, not necessarily do anything. Because we feel that we are taking up precious resources or time when we’re not ill.
I mean you look at people on the ward who have lost their hair or who are really, really ill and you think ‘I’m fine, there is nothing wrong with me and I’m being treated as well as they are. I’m getting the same level of care and there is nothing wrong with me’. And you feel horribly guilty that they may not make it and you are being given this amazing chance and the nurses are coming round and being lovely to you and the doctors are being nice and you think ‘I don’t deserve this, there’s nothing wrong with me’. And you feel like shouting ‘There’s nothing wrong with me, don’t be nice to me. I feel bad because the woman in the next bed is really ill’ and I just feel awful.
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