Interview 61

Age at interview: 37

Age at diagnosis: 32

Brief Outline:

Diagnosed with cervical cancer in 1997. Colposcopy and laser treatment given initially. From Cone Biopsy initial diagnosis stage 1A1. Six months after treatment, test results re-examined which showed stage of tumour more developed than first thought. Wertheim's hysterectomy. Ovaries not removed.

Background:

Housewife; married, 1 child.

More about me...

She had felt something was wrong when she experienced bleeding in-between periods. She had assumed that the bleeding had been caused by the contraceptive coil she had recently had fitted. She made a number of attempts to arrange her routine cervical smear, but found this difficult due to the continuous bleeding. She eventually got an appointment when the bleeding died down. Her GP wasn’t happy with the way her cervix was looking and referred her to the hospital for a second opinion. Her GP thought she might be suffering from an infection but wanted to wait for the results of the smear test before confirming. Unfortunately she had to wait 4 weeks for an appointment at the hospital, which made her feel anxious. She tried to see if she could speed up the process by going privately. She explained that through the whole process she found waiting the hardest thing. By the time her appointment came around she knew that the results weren’t going to be good. She was diagnosed with CIN3, the later stage of pre-cancer. 

 

She underwent a small biopsy. She explained that she had felt scared by the word ‘biopsy’ as it was closely linked in her mind to cancer. She then had electrocoagulation to the affected area, which she explained took a long time and was very unpleasant. She felt upset but found reassurance with the hospital staff who were happy to answer her questions. A few days later she felt less anxious and relieved to get that part out of the way. The hospital staff had explained that one side effect may be bleeding. After experiencing an awful pain followed by persistent bleeding she went back to her GP who advised a course of antibiotics and contacted the hospital to see if a visit was required. She was later readmitted to hospital. She tried to remain calm but knew something was wrong as when she was on her way to the hospital she started to haemorrhage. She was taken for an emergency cone biopsy. She explained that this was her lowest moment, as when she came round she was told that the CIN3 had progressed to cancer. She explained that she wasn’t surprised when they told her. She found waking up after her diagnosis hard, as she would forget for a night but have to remember it again in the morning. She felt like everything had been turned upside down, and disconnected and isolated from those around her. She found it difficult waiting but went to see her consultant 10 days later to discuss the cone biopsy results. She said that she would have appreciated advice on what questions to ask as she felt that she had very little time with the consultant. She explained that there were questions that would crop up afterwards that she did not feel strong enough to ask, such as clarifying what the consultant had meant and the terms that they had used. She felt that it was important to remain composed and objective in consultations as she wanted to be treated like she understood and have a full picture but felt that this meant that she missed out on information regarding things she didn’t fully understand. She felt ecstatic to find out the cancer was in its early stages and surprised given her symptoms. The results gave her faith that things would be OK. However, her doctors weren’t happy with the original cone biopsy and sent the material to be reviewed at another hospital. She said it felt like her anxieties and fears were being reopened. Her consultant apologised for any confusion and reassured her that everything was on track.

 

She then underwent a Wertheim’s hysterectomy. She found the procedure straightforward and not as painful as she had expected it to be, although she experienced severe sickness from the anaesthetic until 6 hours after the surgery. She had a quick recovery and was out of hospital within 5 days. She wished that she had given herself a bit more time to recover physically. She wasn’t able to lift things at first, which made weekly tasks like food shopping difficult. As she had moved to a new area she felt that she could not ask her neighbours for assistance but had help from friends. Initially, she also found it difficult to recognise when she needed to go to the toilet but soon developed a system that worked for her. At the time she did not mind the hysterectomy as she was more concerned with staying alive for her daughter than having another child. Two years after her operation she found it very difficult to believe that she would not be able to have more children. She also found it frustrating having a new consultant at every check-up and would feel extremely anxious beforehand. She said that she would have preferred to have one person that had the whole picture. She decided to photocopy her notes so that she could feel reassured. She believes it is important for consultants to create a warm environment so as not to discourage people from asking questions. After the 5 year mark she felt like she had better chances. 

 

She described feeling embarrassed by the connotations that came with the diagnosis of cervical cancer. She explained that one of the causes of cervical cancer was having numerous sexual partners. She felt that she wanted to counteract it by clarifying that she had been in a monogamous relationship since the age of 19 and that it can happen to anybody. Eventually she didn’t feel the need to justify it and was able to talk to her friends and family about her anxieties, although it had initially caused minor tension between her and her husband. She never felt she was unable to say what type of cancer she had. She obtained most of her information from books. Although she had found the information useful she explained that books could only provide fact and figures, and that you miss out on the two way dialogue you can get from speaking to a health professional. She believes it is important to seek answers and support otherwise you can end up feeling isolated. 

 

She had invaluable support from family and friends but said that she had made it difficult on herself by not telling them sooner. Although they offered support she felt that she had to be strong as she did not want people to worry or put her concerns on their shoulders. She discovered Cancerbackup (now merged with Macmillan Cancer Support) and found them to be a great support as they were a completely dispassionate source that she could ask questions of. She felt that her diagnosis was hard on her husband and appreciated all his efforts and his company at appointments. Her GP had put her in touch with another woman going through a similar experience. She explained that they were able to share experiences and attend check-up consultation appointments together. As they would feel anxious before appointments they would make sure they had something to look forward to afterwards. She would find it hard going to the hospital and seeing how other people were suffering. She said that she felt guilty for doing so well and although it had been scary she realised how lucky she had been. She appreciated having someone to go with.

 

She explained that at the very beginning she didn’t see how anything positive could have come from this experience but it ended up changing her life for the better and put things into perspective. It helped her understand the important things in life a lot sooner than she would have done and that she was able to gain a very happy 5 years of spending time with her daughter. She believes it is important for people to hang onto the positives. She feels strongly that smear tests should be carried out on a more frequent basis. She explained that she had been due to have a check-up 6 weeks after her daughter’s birth but that as she had experienced complications during birth they decided to wait till her next smear test which wa

Nerve damage from a hysterectomy for cervical cancer left her unable to feel when she needs to urinate, so she reminds herself to go when her stomach feels full.

So it was only that, it was the numbness and just having to remember, I had to remind myself to go to the toilet, which is very bizarre, very bizarre thing. But again, you know, I sort of go round it, my daughter was being toilet trained when I got home, and so I just used to, when she went I used to go too.

 

So you didn't have the feeling that you needed to go?

 

No, and I still don't fully. I've replaced it with other things, I've realised I've replaced it with other feelings. When I know my stomach feels full, that's when I go, so I've sort of replaced it with a different way round. And I think it's unlikely that people have that, I think they said it doesn’t normally happen that it never comes back, I think it's normally just temporary but for some reason it can't have reconnected somewhere down there. I think it's where they cut the urethra, it’s just whether that re-forms, the nerves for some reason didn't sort of, don't sort of reconnect for me.

When having a hysterectomy for her cervical cancer she felt that losing her fertility was not an issue, but 5 years later knowing that she cannot have a 2nd child is the hardest thing to cope with.

I was only 32 so, and I'd only had one child. And at that stage I can honestly say I was quite happy with one child. Okay it upset me, I didn't, I really, really didn't want the operation but I was more concerned that I stayed alive for the daughter I did have than, you know, any sort of concerns of having another one. That didn't hit me till quite a lot later.

 

How later was that?

 

I think 2 years after, when I thought that I should stop worrying about am I going to live or aren't I going to live, I thought I would feel a lot more confident at 2 years, and I didn't. So I think I probably had quite a big dip at 2 years. And it's probably been only since I've had a 5 year clear that I've been incredibly broody, I would love to have another child, and it has hit hard. 

 

I think it's been the fertility side that I think has been the hardest thing since. I think because I, you know, hopefully I've not completely stopped worrying about my health, but I do feel that it is over and done with as far as I can tell. So it's been harder sort of not, knowing, you know, knowing that I can't complete my family, the sort of image of the family that I wanted, I wanted two children. And so that's been the toughest part. And going back and reading my notes, and I remember saying quite clearly it wasn't an issue at the time. And it wasn't, it wasn't an issue, but I think 5 years on it is an issue for me.

 

And how do you cope with those types of feelings, how do you find ways to cope?

 

I suppose that ever since I've had the illness, because we'd just moved house I focussed on my daughter very much and just on having things to enjoy. I've made sure I've, you know, treated myself to holidays and I've done all sorts of things that I know I wouldn't have done otherwise. Then two years on we decided to move house again, and it was the Friday before she started school on the Monday, so very, very good timing, because I was aware that there was going to be a void. And I guess that void will come again in September when, you know, I've finished the house and I know I want to move on and do something else, and it's making that I focus on another project to give me that satisfaction that I can't get from having another child. I guess that's probably the way I've looked at it.

She says her friendships and family relationships have strengthened because of the support she received during her cervical cancer; she now invests more time in those special relationships.

And has it had an effect on your relationships?

 

Certainly the ones with my friends it's made an awful lot stronger. I think it's helped me put more into the relationships, I know how important they are to me. I have an amazing network of friends that I appreciate and I will, you know, make sure that I wouldn't lose. I probably invest more time into them because I just know how important they are. And I think I always knew they were very special to me, but I think it's not until, again, something like that happens that you just realise that at the end of the day they are the most important things, certainly with my daughter, certainly with my husband and my immediate family. And then I think I've got a wonderful web of very close friends around me. So yeah, I think it has, it's deepened them. I can have conversations now that I wouldn't have probably had with them before.

Talking to someone who had been through cervical cancer before her had been the most important thing that happened to her; she has since helped other women with cervical abnormalities.

Is there anything else that you would say to other women who are going through this, you know how to…?

 

I think personally being in contact with somebody else that had gone through it was a huge help to me. Particularly finding somebody so young that it wasn't something that was that rare. I've since found, and lots of people have spoken to me when they've had abnormal smears, and some people, two people I know have had cone biopsies, and it's been great to be able to provide that support to them. I think it's just being able to have a conversation. Books and information, it was helpful, but at the same time it was also quite scary because you couldn't have that two way dialogue, it was all about how it could be, and the danger for me certainly was that I could take myself too far beyond it. And I think, yes, the most important thing that happened to me was being in contact with somebody who'd had a similar experience. 

Surviving cervical cancer meant that this woman made more time for her family, which she feels was a positive thing.

I used to try and do full-time work and look after my daughter and I realised that I actually didn't want to do that, that I wanted to make sure I just spent as much time as I could with my daughter. And I have had, you know, five very happy years, five and a half very happy years since, and I know that I wouldn't have had those five happy years had I not had the illness. I would've been very much more focused on my work and trying to keep my CV looking good, and I think it just helps you put things into perspective. You hear people say it but it's probably not till it really happens that, and it is that complete taking the rug from underneath your feet feel, that is horrible at the time but a huge wonderful life learning, and I think if people can hang on to the fact that it will have huge positive sides to it and keep that in mind, that they'll actually probably be pleased they've had it, it will help them with the down days really.