Vanessa
After having lymphoma, Vanessa was diagnosed with breast cancer. She was approached by a nurse recruiting for the 100,000 Genomes Project whilst waiting to have premedication before surgery.
Vanessa is married, and has been a house wife since retiring. She is white British.
More about me...
Vanessa was diagnosed with lymphoma in 2011 and after several stages of chemotherapy and stem cell replacement, she went into remission for about three years. Shortly after, she discovered an indentation on her breast followed by a lump. Her doctor referred her immediately for treatment and a mastectomy. She says that her treatment for breast cancer has been “absolutely amazing” and feels the NHS “have always been there for me”.
While waiting for her premedication before her surgery, Vanessa was approached by a nurse recruiting participants for the 100,000 Genomes Project. Vanessa was eager to take part when she realised that it would only involve an extra blood sample being taken during other procedures she was undergoing. The nurse didn’t have much time to explain the full extent of the project because she approached Vanessa in the waiting room before an appointment. However, she was given an information pack explaining the study in greater detail. Vanessa felt that she would have liked to have been able to spend more time talking to the nurse about it, but acknowledges that this wasn’t possible at the time. Vanessa trusts that the information she has given will be used for good causes even if it is passed on to pharmaceutical companies.
Vanessa very much encourages and supports medical research because she thinks it is important to understand the causes of illness, and finding ways to prevent disease. Her message for others thinking of taking part in medical research is to just “go for it” and take part. She would like to see more adverts, leaflets and literature about the 100,000 Genomes Project in hospital waiting rooms and GP surgeries so that more people could learn about the project. She is hoping that genomic research will improve our understanding of the genetic causes of illness and help “conquer” diseases like cancer.
Vanessa hopes for some communication from Genomics England about results, and would like them to contact her if they plan on using her data for anything further.
Vanessa was invited to take part by a nurse when she was waiting for an appointment. She only wanted to know if participating would involve taking any trial drugs. The nurse explained that it wouldn’t.
Vanessa was invited to take part by a nurse when she was waiting for an appointment. She only wanted to know if participating would involve taking any trial drugs. The nurse explained that it wouldn’t.
While I was waiting to go and have my pre-meds tests, I had a nurse come up to me and ask me if I would be interested in the genome project. Not knowing what it entailed, I said that - you know - I didn't want to go through any trial drugs, and she assured me that no, there wouldn't any of that, it was purely - you know - to have some bloods taken, and experiences of, of treatments, really. And so I said yes, I would. If it helps someone else along the line, that's what we have to do.
Did she explain to you what the project was about?
Very little. As I say, she didn't have a lot of time, no. Because I was literally going through… she called me. And then within a very short time, the nurse came out to call me to go and have my ECG and other, other checks – ready for the operation. So, it was very much a - She, she did it very quietly, because obviously there were other patients in the waiting room. The waiting room was very small, but adequate for our needs. And we literally stood round the corner, like a couple of spies, really. You know, talking - talking quietly to each other. And she just said that there was an information pack, she said it was a research project. And as soon as I heard that, there was no treatments involved, I was quite happy to, to help you.
Vanessa has cancer and says she has benefited from medical research and now it’s her turn to help others.
Vanessa has cancer and says she has benefited from medical research and now it’s her turn to help others.
So really, your reason for taking part was sort of to help other people, to -
Oh, indeed.
Yeah.
Indeed, yes. I mean, all of us, I'm sure, that have suffered one form of cancer or another, would want to help anyone.
Mmm.
Going through it. Because it is a very traumatic time. Both for yourself, being told the news. And also for your loved ones.
Mmm.
Because they feel, they feel so helpless. And I know that we have to go through - I mean, there's some people that choose not to take the treatment, but I've always been advised by my consultants, and I've always taken the treatments that they've offered me. So therefore, I have to be strong. I have to do as they say. And I have no choice. But the choice I do have, is to help others that are experiencing, or about to experience, similar problems that I've gone through.
Mmm. Yeah.
And, that's what we're here for. To help. In any way.
Yeah, it's a really noble thing that you're doing.
Yeah. I don't know that it's noble. I think it's - Other people were there to help me, when I needed them. So it's only fair that [wipes tears] I continue that line of, helping others. Because there's so many people. And until you go for treatment, you just do not realise how many people are caught up with cancer of some form. Be they small, middle-aged, old-aged, you know? It has no boundaries whatsoever. And it is - it just needs to be conquered.
Mmm.
And only by research will this happen. You know?
Vanessa supports genomic medicine to advance medical knowledge for illness but she does not agree with it being used by parents to choose the gender of their baby.
Vanessa supports genomic medicine to advance medical knowledge for illness but she does not agree with it being used by parents to choose the gender of their baby.
Sex selection, yes.
Can you tell me a bit about your views on that? Or, what do you mean?
Well, I'm very old-fashioned. And I feel that we're given this wonderful way of having children. There's no mould. But the majority of the time, there is a perfect child given to the parents [struggling against tears]. And if genetics start to mix with the amount of boys, the amount of girls - because somebody's got two boys and they want a girl desperately - I don't agree with that. I don't agree with that. Because I feel we're given what we should have. And I feel this also about my illness [struggling against tears]. Because I am a very, very strong person. And I believe that these things are only given to people that can cope with them. Yes, a lot of us need help along the way. But the bottom line is, it's you yourself. But as far as genetically modifying babies, or anything like that, no. I think genetics in that respect should be left alone, and leave it to nature. But as far as genetical work towards illnesses, I'm one hundred percent behind you. Yes.
Vanessa was invited to take part in the project while she was waiting for premedication for her breast cancer surgery. Although she was happy to participate the nurse didn’t have much time to explain before signing the consent form.
Vanessa was invited to take part in the project while she was waiting for premedication for her breast cancer surgery. Although she was happy to participate the nurse didn’t have much time to explain before signing the consent form.
Did she explain to you what the project was about?
Very little. As I say, she didn't have a lot of time, no. Because I was literally going through - She called me. And then within a very short time, the nurse came out to call me to go and have my ECG and other, other checks - ready for the operation. So, it was very much a - She, she did it very quietly, because obviously there were other patients in the waiting room. The waiting room was very small, but adequate for our needs. And we literally stood round the corner, like a couple of spies, really. You know, talking - talking quietly to each other. And she just said that there was an information pack, she said it was a research project. And as soon as I heard that, there was no treatments involved, I was quite happy to help you.
Do you feel like you were fully informed by the nurse about what was happening there?
Not really, no. As I say, I don't feel that that was a fault on her part. I feel that it was a fault on the fact that there were other pressing things that needed to be done from other medical people at that time. For my pre-meds to be done. So unfortunately, although I agreed to it, she did give me an information pack, which - I digress - I didn't go through as perhaps I should have done. But my operation and everything happened so, so quickly. And of course, you're not always feeling up to reading things. And I had so much reading matter anyway, to do with breast cancer and the procedures, and what would happen, and so on and so forth, that it just - I just got, you know, taken in by it. If you know what I mean. And, no. Time, time crept up on me.
Vanessa suggests having a little card, like the one used for kidney donations, on the project in waiting rooms.
Vanessa suggests having a little card, like the one used for kidney donations, on the project in waiting rooms.
How I feel you could better things, is maybe in the waiting areas have a board, or some literature that could be read while people are waiting. Because we have to wait for some considerable time on occasions. And that would possibly be a good thing. To have in the hospitals. And even in doctor's surgeries. Because that is your first port of call when you have a problem like this. So, get them early, that's my thing.
Mmm.
You know? I know it costs money to print these leaflets and such, but - you know - even if it was just a small card that someone could pick up, like we used to for kidney donations and things like that, you know? That people could then go onto your website and find out a little bit more about what you're actually doing.