It’s everyone’s nightmare to fall seriously ill whilst away from home. But this is exactly what happened to Jane. In conversation with Headway, Jane talks about how she came to emerge from a life threatening experience, survived neurosurgery and rebuilt her life one step at a time.
Headway (HW): You were on holiday in Greece, is that right?
Jane: That’s right. I was on holiday on a small island in Greece, and I just started having white spots in front of my eyes and I had this horrendous headache, like someone had just hit me on the head with a lump hammer and severe pain going down the back of my neck. And my sight was beginning to blur.
So, we got a taxi to the local GP who was a very young, very nice lady with very little English, who more or less told me that I had too much sun and she gave me a prescription and gave me a note to go to the mainland and have test bloods done. The headache subsided, and I went back to the hotel and I started on the medication.
As the days progressed, every time I tried to stand up I had this ferocious headache. I wasn’t eating. I couldn’t go out in the sun. I wasn’t sleeping because the headache was there all the time – the excruciating pain was gone but I couldn’t stand up or sit down without it shooting through me.
I was very frightened.
It kind of subsided after a few days, but I still wasn’t eating so on the Friday, my husband suggesting changing flights. I said I’d prefer to try to stick it out until we were due to fly back. I knew I didn’t want to go back to the doctor as I knew she’d send me to hospital and I really didn’t want to go to hospital there in Athens.
So… I was really risking everything.
And that night at 3 o’clock I woke with another lump hammer headache, and it was much worse. I was screaming at my husband, “Do something” and he didn’t know what to do, he was walking up and down. That was a really bad headache, I don’t remember how long that lasted…
The next day, I had medication with me. We got the hydrofoil to Athens and my husband had arranged taxi to bring us straight to the airport and we waited there for a couple of hours, got on the flight. Came home, got in home at midnight.
At this point I thought, I just want to get into my own bed. I was wondering was this a real headache? So… I made my husband go to work the next morning!
I walked down to my GP. As soon as she saw me, she lifted the phone. She said, do you want to go Beaumont or the Beacon? I said I’ll go to the Beacon. I got to there, had all sorts of CT scans, MRIs. And then at this point, I .…gave into it.
HW: What did you give into?
I was fighting it. First of all, to get home. Then once I got into the Beacon I just thought, they’re going to look after me now. I was just so exhausted.
HW: It sounds like it took you while to accept that there was something seriously wrong.
Yes. I was in denial until I got the Beacon. When they started talking about lumbar punctures and doing these scans, I knew then it was something very serious.
The neurologist came up and showed me the scan and there was a little aneurysm the size of a pea. And he told me basically that I was going to die and that there were only two centres of excellence in Ireland, one in Beaumont and one in Cork. I got a bed in Beaumont and I was transferred by ambulance at 2am and they did an angioplasty the next morning. Then they told me about the coiling operation, and thankfully they were able to do the intervention, and that was it.
HW: Can you remember what it was like to wake up and to come around to the idea that you were still here?
Yes. I think I was in shock, it was just a weird, peculiar feeling. I felt that I had come back. That I had really come back. One of the nights in Greece, when I felt really bad, I had felt a hand on my shoulder and then… it let go.
And that has stayed with me.
It’s not that I’m religious but I did feel that there was something that night… that I thought my number was up but that I was getting a second chance.
It was very eerie, I know it was the middle of the night and I know I was very ill, it could have been my mind playing games with me. Then when I did come through I felt, that yes…
…I was very emotional.
HW: How long did it take you to get home?
10 days. Then 10 days later, I went for a walk. I went to top of my road. You can see the sea. And one of my neighbours came across, put his arms around me, said. “It’s so great to see you”, and I remember I burst out crying. And I got to the top of the road, and I was still crying, and I said, “I thought I’d never see this view again”. I really thought I’d never see the sea again. That was the first significant thing I did, and I was so thankful that maybe this was the beginning of things getting back to normal.
HW: What was the physical impact of having the operation?
Fatigue. Extreme fatigue. Even getting up in the morning. I used to get up at 6:30 and I would be on the train at ten past 7 into town. Getting out of the bed, just the normal bathroom, shower, it just took me so long. Fatigue was the big thing, I had headaches, and still do, but nothing compared to that. Fatigue was the biggest thing. Even now, I still get tired.
The first day that I came into town, it was coming up to Christmas, my son came with me. And I was scared. Yes, of getting on the train, of the crowds. Something that had been second nature all my life. That was a major thing. Being in a crowd. Being with a group of people, that I just felt that I’m not part of this conversation. Feeling afraid of contributing to a conversation.
HW: Your confidence was knocked?
HW: You mentioned being more emotional, was that something you continued to experience?
Yes, for quite a long time, and even now I would be more emotional now than in the past. Which is probably isn’t a bad thing. I appreciate people much more – I don’t’ appreciate material things so much.
HW: It sounds like it’s given you a heightened sensitivity?
Yes, that would be it. And awareness. Yes.
HW: What brought you to the point where you felt you needed to contact our helpline?
Well it was in the early days, I think it might have been in the first 8 to 10 weeks, when I was at home, in the middle of dark winter, with headaches. Very tired, and just basically wondering, would I ever be right again, would I ever be back to the person I was beforehand?
My memory was very bad also, I wasn’t retaining anything. Though I have a good memory, what I find, is that my short-term memory isn’t great.
HW: That would be typical
And these were the things why I contacted Headway. I was having headaches. The fatigue wasn’t going away quickly enough. Things like, I’m not able to stand for long. That’s what I was worried about and that’s what I got reassurance for from the helpline.
HW: Did that call help you to put your experience into context?
Absolutely. At the time, I hadn’t read anything about “subarachnoid haemorrhage” and then the lady that I spoke to sent me out literature. In the mornings, I would stay in bed with the laptop and my breakfast and I would start researching and going into different sites and learning more about it. And that did help me because there were other people putting their experience online.
HW: And how have you navigated those challenges? What’s helped you to get through that darker period?
…. Yes, I was determined.
HW: You knew you could…
Yes. I set myself little goals all the time. Walking, that was my big thing. Every day I got out for a walk. And I walked a little bit further every day. And I still walk every day, but that was a huge thing. Exercise is good from any aspect, but that helped me physically get back up and then mentally, and going out and meeting people …
HW: Gradually reconnecting to the world.
Yes, I even had people coming up to me and say “Do you knit”? and I could never knit, but thinking, you know I’ll try it again and prove that I can’t knit! I went through a phase of baking which I’m quite fond of doing anyway. I did that for a few months.
I moved on through trying different things. And they were all good at the time. All the stuff helped me. But the walking is the one thing. I still walk every day. Very important.
HW: Is there anything you can’t do? Do you still have a list of things you want to tick off?
I don’t think I’ll be doing a parachute jump. That was on my list, and I don’t think I’ll be doing that!
Physically the one thing that that I can’t do, which is a bit weird, is that I can’t look up for long. I get dizzy. If you were to say to me, look up there, I get a peculiar dizziness feeling, but physically that’s the only thing I can’t do.
I love travelling. I have two sons who live abroad. Well one just went a few months after I had this, and he was worried about whether he should go to Canada or not and I went: “Yes, go because I ‘ll be coming to visit!”
It happened in September, and I flew on my own in the January over to Cardiff to a friend of mine. She was more nervous than I was! But I did it. And once I did that, that was it.
I still have the bucket list and I still will be doing that, I just probably wouldn’t go on a roller coaster.
HW: You mentioned how the experience has given you a heightened sensitivity, and not a bad thing. What’s your own view on how you’ve changed as a person?
I used to get very stressed over the small things. I have been practising mindfulness. So, I’ve changed in that sense. I did used to get stressed over silly things whereas now I don’t do that anymore. If it happens it happens and that’s fine. I’m a planner and an organiser, but I’m very laid back. If someone was arranging some event and they were all stressed out about it (through my work I did quite a lot of event management) I would be now saying, look if that doesn’t work its fine, we’ll work around it.
HW: Don’t sweat the small stuff
Definitely. Whereas before I would have just said “don’t sweat the small stuff” Now I really don’t
HW: If you had any thoughts for someone going through recovery from neurosurgery, what would be your main piece of advice to them?
I think, just give it time. The time to me was the best thing ever. I suppose I feel I’ve got this second chance and I’ve had this time. But there was no hurrying my recovery.
I thought that at that first Christmas after it happened in September, I was absolutely marvellous. But then the following Christmas, I looked back, and I thought, My God, I was so ill!
And it really has taken the five years.
I found this summer, from about June, I started thinking of the five-year anniversary.
If I was talking to people about such and such that happened, I would always say, either that was before I got sick, or that was after I got sick. Then about 8 or 10 months ago, I said to myself, that is just ridiculous, you can’t have that defining your life. Before and after you were sick.
So, I consciously stopped saying it. But coming up to the five-year anniversary I got this thing in my head that I was just going to get five years and that would be it. And I was dreading the anniversary, I thought I would just go through the build-up, the whole lot again.
HW: And was it like that?
It was on my mind all the time and I wanted closure. I felt if I marked the event in some way it would help. I knew I wouldn’t be able to verbalize my feelings and gratitude for everything those closest to me had done for me so I decided to send cards/emails to them. I also spoke with my friends about my ‘5 year anniversary’. I just said this is it now, thank you for everything. I think for me, it was a letting go.
And yes, since September I am just so much more out there now.
HW: It sounds really encouraging that you don’t have to think about that event as the defining part of your history. You have now accumulated enough experience as you are now to have it in an appropriate “box” and that seems like the best kind of outcome.
I probably should have had counselling along the way.
HW: You were well motivated with a very clear vision of what you needed to achieve, and you were able to get the support you needed to do what you were able to do.
I suppose I was always an independent person. Yes, I am. Maybe that was just it. I just got on with it.
HW: And you did.
Yes, I did get on with it!
HW: You have followed instinctively the advice we often give people.
Yes, I have little goals every day. And achieving them, no matter how small it was it was an achievement. Because when I was out of hospital, I could do nothing. I was in bed all the time. I couldn’t do anything.
Considering how weak I was, it didn’t take a long time in one way.