Diary of a Cancer Patient

A fifth operation and permanent menopause

noreply@blogger.com (Em) — Tue, 24 Feb 2015 14:07:00 +0000

Number of days since surgery: 13
Pain level: manageable
Mood: relieved!

It's been quite a while since I last wrote but, as usual, plenty has happened! I've been put into chemical menopause, taken out of chemical menopause, put back into chemical menopause again and now I'm recovering from yet more major surgery. And I'm finally in permanent menopause.

Last April, as an attempt to control the high level of pain I was having, my oncology surgeon put me on a course of Prostap injections (you can read more about this in my previous blog post). His thinking was that by temporarily shutting down my remaining ovary he could see whether or not it was that causing all the pain. I had a course of six injections, which were given one every 28 days, and boy did they come with some hideous side effects. I was all prepared for the hot flushes (although let me say that night sweats in the middle of summer are particularly grim) but I wasn't as prepared for the migraines, exhaustion and flu symptoms that also came with it. Fortunately, these improved massively after three months, which is a good job because I'd really had enough and was practically at the point of stopping the injections by then. The really good part though was that by the fourth injection my pain levels started to hugely improve. I started feeling human again and got my energy levels back, running around with my gorgeous girls and feeling, well, normal.

At the end of the six months I went back to see my oncology surgeon, who said that to be absolutely certain the pain was stemming from my ovary I needed to come off the Prostap injections and see what happened. Although I understood his thinking, the thought of going back to being in pain again didn't exactly thrill me. I tried to hope that somehow the injections would have sorted everything but I knew how ridiculously unlikely that was. And sure enough, within six weeks the pain returned. I wasn't due to go back for a follow up appointment with my surgeon for four months but after ten weeks off the injections I knew I wouldn't be able to carry on that long, and after speaking to my oncology nurse I went back to see him. The outcome was predictable: the only course of action left was to operate to remove my remaining ovary.

Now, for as long as I've been dealing with ovarian cancer and its side effects, I've known this day was coming. The day when they would strip everything out and put me into permanent menopause. It almost happened 18 months ago when I had an emergency hysterectomy, but the surgeon then chose to leave my left ovary and fallopian tube in place so that I didn't go through the menopause at too young an age (I was 33 at the time of the surgery). This time I'd reached the end of the road in terms of my options. My oncology surgeon recommended I went back on the Prostap injections immediately, along with a very low level of Climaval HRT tablets to control the menopausal symptoms. Then at the start of this year I had an MRI scan to check for abnormalities (which thankfully came back clear) before going into surgery on 11th February - almost exactly nine years to the day that I was first diagnosed with ovarian cancer.

Before going into theatre I was warned the surgery was likely to be complex because it was my fifth major abdominal surgery. I drifted off into an anaesthetic-induced sleep not quite sure of what I was going to wake up to. When I came round I found the operation had been successful and not quite as complicated as my surgeon was fearing. It turned out the ovary had become trapped between the main artery running into your leg and my kidney, hence all the pain I'd been experiencing. Happily, they were able to remove it, along with the remaining fallopian tube, some adhesions and some endometriosis. I spent five days in hospital, during which time I had bleeding from the wound and had to be openly stitched on the ward with two nurses holding up a blanket so I couldn't see what the surgeon was doing - not a very nice experience! But now I'm home and have finally had all the staples and stitches removed. I've got a long up-down incision this time, from belly button to pubic bone, which means I now sport three large scars (my other two are horizontal lower abdominal incisions). My abdomen is slowly turning into a patchwork quilt!

Aside from feeling menopausal (of which I've only had the occasional hot flush so far), I've been surprised by how I've felt after this surgery: battered about - yes; exhausted - yes; sore - yes; but overwhelmingly I've felt relieved. I've realised today that I feel FREE! I'm finally rid of the very thing I've been fearing might be the cause of another cancer recurrence, and I've had all the gynae organs that it's possible to remove taken out. I feel like I'm done. At this moment I'm really hopeful that I can get back to living a healthy, pain-free life for the first time in nearly ten years. TEN YEARS!!! That's how long it's almost been since I first became ill with the symptoms of ovarian cancer. Hopefully this surgery, finally, is going to draw a line under everything. Cancer and its effects have claimed almost a third of my life. It's time for me to take over now.

Em

Pain management and a chemical menopause

noreply@blogger.com (Em) — Tue, 01 Apr 2014 11:12:00 +0000

Current CA125 level: 11
Current pain level: high
Mood: weary and uncertain

Things have been on a bit of a roller coaster since I last wrote. Everything had been starting to get better since the hysterectomy last July and I was starting to feel physically stronger. Then a few months ago the pain came back and it's been getting worse ever since.

I've always had some residual abdominal pain since the hysterectomy but day-to-day things had started to become a bit easier, like walking Molly to school and carrying Tess around. I got to Christmas feeling positive about the future and hopeful that hospital admissions were finally behind me. Then in January I noticed the pain getting worse. It started becoming more frequent and sharper. And after a few weeks I started to feel bloated and uncomfortable, and was finding eating meals difficult. After a month things hadn't improved, and with pain, bloating and feeling full all symptoms of ovarian cancer I phoned my oncology nurse at the hospital. She immediately got me an appointment and a couple of days later, at the start of March, I went to see my oncologist.

By the time I went to the appointment I was in a lot of pain. My oncologist took one look at me when I walked, or rather slowly shuffled into his room and said I needed to be admitted into hospital. I'd been expecting him to send me for a scan so it was a shock to be admitted on the spot. I was totally unprepared for being back in hospital and hated that, for the second time, the girls would have to cope with me disappearing into hospital without warning. I was also really worried the cancer may have come back or that I might have another pelvic infection, and I was convinced I was going to end up having surgery again.

Thankfully, a CT scan and an ultrasound scan the next day showed there were no abnormalities, and my CA125 blood test came back at 11, well within the normal range. (CA125 is the chemical in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer. The upper range of normal is 35.) It was such a relief - no cancer and no surgery! But with the reason for the pain still unknown, it was decided I should be referred to a specialist oncology surgeon for further investigation. Eventually, after five days of pain management, I was discharged and got to come home - it was so good to be back with the girls!

A week after coming home I got a surprise call from the hospital asking me to go for an MRI scan the following day. It was one of those sickening moments when you get an unexpected hospital call and are left panicking about what it means. But my oncology nurse phoned later that day and explained the new oncology surgeon wanted me to have one so he could look at what was going on. Panic over!

I had my appointment and finally got to meet him yesterday. He was very nice, although greeted me by saying I was famous and that he'd been hearing about me since my surgery last year - not really what you want to hear! In medical land it's sometimes better if they don't know about you - if they talk about you it's because there's problems or because you're an unusual case, something I've been told many times! Anyway, he said at the moment there's no clear reason for all the pain but that, given where it is, he would expect it to be caused by either the bowel, bladder or remaining ovary. He said looking at my notes he'd considered malignancy, bladder or kidney stones, or infection. But there's no clear evidence of any of those from my scans. So, rather than proceeding straight to surgery he wants to put me in a chemically-induced menopause for 3-4 months. If that alleviates the pain then the problem is more likely to be coming from my ovary than anywhere else. Being put into the menopause will also stop the flare up of any endometriosis, which could be adding to the pain.

In the next week or so my GP will start giving me a monthly injection of Prostap-SR. Because it prevents the production of oestrogen and effectively shuts down your ovaries (or ovary in my case), it's likely to bring all the typical symptoms of menopause: hot flushes, night sweats, headaches etc. Not exactly a lot of fun and I can't say I'm particularly looking forward to it. But on the positive side it might reduce or even get rid of the pain, and as I'm writing this with a hot water bottle practically strapped to me to try and ease the pain, that's got to be worth it. In 3-4 months I'll go back to see my surgeon again and, based on how the injections have been, the decision will be made about whether or not to operate.

Looking ahead I feel pretty weary at what's to come. Not only am I facing a chemical menopause, but on the other side of that there's the prospect of more major surgery. And in the meantime there's no guarantee the injections will even stop the pain. Trying to carry on day-to-day with chronic pain is utterly exhausting, and having the hospital back in my life so regularly is hard to accept in many ways. I'm 8.5 years on from first getting ill with the symptoms of ovarian cancer and still it's a dominant feature in my life. But then I know how lucky that makes me - many people diagnosed with ovarian cancer don't get to go on and do 8.5 years of living.

Em

Reaching A Post-Cancer Milestone

noreply@blogger.com (Em) — Mon, 18 Nov 2013 12:22:00 +0000

Number of years cancer-free: 5
Current CA125 level: 14
How I feel: very proud

It's been four months since I had my emergency hysterectomy and, thanks to getting a couple of infections, it's been a long recovery process. But I'm finally out the other side now and apart from some soreness if I attempt to do too much, I feel much more like myself. Just in time to celebrate a big personal milestone.

After I finished chemotherapy for the second time I wasn't sure how long I'd have before the cancer came back - after all, the cancer came back just six months after I finished my first course of chemo. So, making plans for the future was something I deliberately didn't do. But when we had our first miraculous little girl I gave myself a secret aim: to be around long enough to see her go to school.

I was never completely convinced I would really get to see it, but six weeks ago Molly started school. Getting her dressed in her uniform and taking her into the classroom would've been emotional anyway, but it had such added significance for me that I felt quite overwhelmed. I had reached a milestone I was never sure I would get to. I felt so proud watching her settle in, and every day when I take her to school now it almost feels like a bonus. Like I'm being given time with her that I never thought or dared hope I would have.

But, and here's the bit you have to keep to yourself, I've now got my next secret milestone: seeing Tess go to school. It's still three years away, and the thought of looking that far ahead is ridiculously scary, particularly after my cancer scare over the summer. But I'm going to keep it right at the very back of my head, and every day I'm going to take a tiny step closer to it.

After having the hysterectomy I initially felt quite upset that I couldn't chose whether or not to have any more children. We hadn't planned any more, but to have that decision taken out of your hands is very different. But the more time that passes the more I feel so complete with my two girls. I'm unbelievably lucky to have them, and not a single day goes by when I don't stop and remember that. So now I'm just going to concentrate on getting to my next milestone, and enjoy every day that gets me there.

Em

Five Years Clear - And An Emergency Hysterectomy

noreply@blogger.com (Em) — Mon, 05 Aug 2013 12:48:00 +0000

Number of years clear from cancer: 5!
Current physical state: rather sore, in post-op recovery mode
Current emotional state: relieved and cautiously happy

I know it's been a long time since I updated this blog. In fact, I can't quite believe how long - a whole ten months. Not really the done thing for a blog, which should be far more regular. But there is a reason for the big gap, which turned into a much bigger gap than I intended, and it all hangs around reaching the five-year clear milestone and then having a very unexpected and very nerve-wracking health blip.

At the start of this year, when my five-year clear milestone was approaching (a marker that cancer patients aspire to reaching because it's when you move from being 'in remission', to being 'all clear') I started to feel a bit nervous and, in an almost superstitious way, that I would be tempting fate if I talked about reaching it before it happened. I didn't dare blog about it coming around in case the cancer threw up a nasty surprise and came back after four years and 11 months or something. And, scarily enough, that ended up almost being what happened.

In June I had my regular six-month oncology check up, the one I was going to use to signify reaching five-years clear. But I had been feeling more tired than usual in the run up to it (even taking into consideration running around after two small children), and had had some abdominal tenderness and occasional bloating too (all of which can be symptoms of ovarian cancer). My oncologist didn't think it was too much to worry about (my CA125 level was 14 and the upper limit of normal is 35), but ordered an ultrasound scan anyway, which I had two days later. Aside from a cyst on my left ovary, which the sonographer said was a simple hormonal cyst and not caused by cancer, everything looked fine on the scan and I relaxed thinking I wouldn't have to go back again until my next oncology check up in six months time.

So imagine my (extremely nervous) surprise when a letter dropped onto the doormat calling me back to see my oncologist. I could only guess that maybe he had decided it was time to discuss having full surgery (something he had wanted to wait to do until I was a bit older so that I wouldn't go through the menopause too young), but felt sick at the thought that maybe the sonographer had reviewed my scan again later and decided actually there was something questionable on it after all. The appointment was for two weeks after the letter came through, but what I didn't know at the time was that I would never get to go to the appointment. Instead I would be in hospital recovering from major surgery.

The whole thing seemed to start out of the blue, although when I put together the tiredness, abdominal discomfort and bloating, I can see things were probably not quite right for a while. On a Thursday afternoon (11th July) I started getting some pain from my left ovary. Although it was sharp, I put it down to ovulation and hoped a good night's sleep would shake it off. The next morning the pain was more vague but had moved over to the right-hand side of my lower abdomen and, for some reason I couldn't put my finger on, I just didn't feel well. There was no headache, stomach ache, sickness or temperature, nothing I could attribute it to. I just didn't feel right. (Scarily enough, it's the same feeling I had for a couple of months leading up to when I very first got ill way back in September 2005.) Then, over the course of the day, the pain got worse. Bad enough for me to phone my oncologist's secretary in the early afternoon to ask what I should do. But as I was supposed to be seeing my oncologist for the call back appointment a few days later on the following Monday, the advice was to phone my GP for painkillers, which I duly did.

Nothing touched the pain though and by the early evening I knew I needed to go to hospital - something felt very badly wrong. So, a trip to A&E and a few hours later I was being given large amounts of morphine (by that time I was shaking so hard from the pain I could barely lie still to be examined), sent for x-rays and then finally moved to a ward in the early hours of the morning with the theory that it was probably my appendix. I don't remember large chunks of the next two days. I know on the Saturday (when I was vaguely coherent) I was taken for an ultrasound scan where they discovered I had fluid in my abdomen and an 'unknown vascular mass', but that my appendix looked ok. Things were starting to look and feel pretty ominous. Then by the time Sunday came I was far more ill - excruciating pain, temperature and sickness. I know a number of different surgeons came to see me to decide what should be done and by who (the gynae surgeon wanted to operate with an oncology surgeon present but there wasn't one on duty, so a general surgeon was called only for him to decide that with my history I really needed to be under a gynae surgeon). In the end I was so ill that exploratory surgery by a gynae surgeon to find out what on earth was causing it all was really the only option, and just before 6pm I was taken in to have a laparoscopy.

Four hours later I was wheeled out of theatre after having major surgery. It turned out they couldn't get the laparoscope in properly because my bowel was stuck to the front wall of my abdomen, so they had to do a laparotomy (abdominal surgery) instead. It revealed my bowel was stuck to both the front and back wall of my abdomen, that I was full of infection and that my womb looked infected and unstable. So, after cutting away and releasing my bowel, they had to give me a total hysterectomy, which included removing my cervix and right fallopian tube (which I'd been told had been removed in the surgery I had to remove the recurrent tumour around my womb in 2007, but seemingly it must've only been partially removed). The cyst on my left ovary (still there from the original ultrasound scan back in June) was also removed, along with a tiny bit of the left ovary, and the infection was washed out with three litres of fluid. The majority of my left ovary and my left fallopian tube were left in place to prevent me from immediately going through the menopause.

Waking up properly from the surgery the next day it both was and wasn't a surprise to find out I'd had a hysterectomy. I'd known before the operation that something felt very wrong, and the possibility of needing to give me a hysterectomy was something the surgeon had briefly mentioned. But the reality of having it, and of instantly forgoing my fertility, was something very different. But I'll save that for another blog entry because this one is getting very long...

My recovery in hospital after the surgery was quite lengthy. I ended up staying for nine days in total after being hideously sick after the surgery, something no amount of different anti-emetic (anti-sickness) drugs was able to control. Eventually, the doctors agreed to stop the strong doses of antibiotics I was on because they seemed the likeliest cause of the sickness. However, my biggest concern was whether the histology reports and tumour markers would come back showing it had all been caused by a cancer recurrence. At that point, after over a week of not eating or drinking, the thought of going through chemo for a third time was almost too exhausting to bear. It felt pretty futile to fight hard to get well after the surgery if I was just going to be knocked straight back down again by chemo. The only things that made me determined to get well and get home as quickly as possible were my girls, Molly and Tess. It was so hard being separated from them for so long when all I wanted was to give them a big cuddle and make everything feel normal again.

The wait to find out if it was cancer was horrible, as waiting for results always is. It's one of the worst parts of cancer treatment and check ups - the gap when your imagination is left to run wild and flit over what feels like a million different (often horrible) scenarios. Then, three days after I finally came home my oncology nurse called to say all the tumour markers had come back normal and the histology showed everything was benign. It turned out it was all caused by an infection that had probably started in either my womb or right fallopian tube (the one I didn't even think I had!). The 'unknown vascular mass' was actually my right fallopian tube, which was just very badly infected. I could've jumped for joy, if I hadn't been incapacitated by major surgery. Such a beautiful word 'benign'. Benign, benign, BENIGN!

So, finally, I'm able to write this blog entry. I'm three weeks post-surgery and not able to do much (I can't drive or lift anything heavier than a litre for 6-8 weeks). But I can say that I've reached five years clear, which is something that at times over the last five years, and particularly over the last month or two, I've doubted I would get to say. It seems to have taken so many hurdles to get here that I'm going to write it again, just because I can: FIVE YEARS CLEAR!

Em

A Positive Cancer Scar

noreply@blogger.com (Em) — Sat, 06 Oct 2012 14:18:00 +0000

Number of years since finishing chemo: 4 & 1/2
Current CA125 level: 17
How I feel: in control

There's a lot of things about being diagnosed with cancer that make you feel like you have no control: you can't carry on with your 'normal' life, you can't control the side effects of the treatment drugs, you can't erase the physical surgical scars, and you can't stop your body failing you. But, once your treatment is over and you start trying to put the experience behind you (as much as you ever can do with something like having cancer), there are things you can do to take back control.

I'm 4 & 1/2 years out of my second course of chemo for recurrent ovarian cancer, and I'm still finding ways to take back control and prove to my rotty cancer that I'm the one in charge now. Last month I decided I'd had enough of only having a horrible scar to show for everything I've been through. I wanted something more positive than a scar, something I'd chosen to have, rather than something that had been done to me. So, I got a tattoo.

I'd been thinking about getting a tattoo for the last couple of years, but with the girls coming along it wasn't the right time - I didn't want to get a tattoo only for it to be covered in stretch marks! But now we've got our two gorgeous girls, the time seemed right. I didn't want any old design you can pick from a book though, it had to be something with real meaning to it. So I designed my own, using four stars to represent our little family of four - me, Justin, Molly and Tess. They also represent the four babies I've been pregnant with - Molly, Tess, and Arthur and Martha, the twins I miscarried just after starting my second course of chemo.

To make the tattoo symbolic of ovarian cancer, one of the stars is filled in teal. And I've had it done right over the top of where my right ovary should've been. It's my tribute to myself for surviving ovarian cancer, and it's finally given me a positive 'scar'.

Genetic Testing Results - And A New Baby

noreply@blogger.com (Em) — Thu, 19 Apr 2012 12:42:00 +0000

Genetic testing results: all good
Relief level: high!

At the end of last month I finally had my genetic testing results back. And to my huge relief they show I don't carry a faulty BRCA1 or BRCA2 gene. So now I can relax knowing I'm no more likely to develop breast cancer than anyone else. And more importantly, I know I haven't passed a higher risk of developing either breast or ovarian cancer onto my daughters.

And yes, I did say daughters! On 31st January I gave birth to my second little miraculous bundle, Tess. She arrived pretty speedily, just over an hour after we got to the hospital, and is completely perfect. Everything went really well, although I was very ill after the birth with severe sepsis, which was pretty scary. The night I got discharged from hospital with Tess I developed a high temperature and couldn't stop shivering. The next day, the midwife came to visit and sent me straight back into hospital. By the time I got there my temperature was 40.7C and my heart rate was 150 bpm. Fortunately, the infection responded quickly to intravenous antibiotics and a few days later, after being well looked after by the intensive care team, I was much better.

Such drama shouldn't be surprising really. When I look back over the past 6 & 1/2 years since I first became ill, all the way back in September 2005, I simply can't believe what's happened! I also can't believe how ridiculously lucky I've been. And yes, despite having had recurrent ovarian cancer I truly do see myself as lucky. Why? Because:

I had very aggressive ovarian cancer, but because it was so aggressive it caused ovarian cysts, and the pain from these led to the cancer being found while it was still stage I - lucky.

My cancer recurred, but it didn't spread far and the tumour was removed without me needing a hysterectomy - very lucky.

I miscarried twins during my second course of chemotherapy, which gave me hope I might not be left infertile by the treatment - a difficult but ultimately positive experience.

I got pregnant nine months after finishing chemo and had a gorgeous baby girl - stupidly lucky.

My genetic testing results came back negative for a BRCA1 and BRCA2 gene mutation - fantastic.

I had a second baby girl four years after finishing chemo - luckiest person in the world!

When I was going through both courses of chemo, my dream was always to have children. As I wrote in my post The Past, The Present And The Future (Part III), after continuing to be healthy, having a family was my biggest hope for the future. And now, years later, it's come true.

I sit and look at them both sometimes - Molly running around playing and Tess lying in her cot - and I wonder why I have been one of the lucky ones. Why have I got to live so long when others don't? Why have I got to have a family when others are left infertile? I really don't know the answers, but what I do know is that I cannot afford to waste a single precious minute. So I make sure I look around and remember just how lucky I am every single day. I have a wonderful husband, two gorgeous girls and I'm well - life doesn't get any better.

Em

Genetic Testing

noreply@blogger.com (Em) — Tue, 10 Jan 2012 11:32:00 +0000

Making the choice to have genetic testing: easy
The effect of choosing to have genetic testing for other people: a lot more difficult

At the end of last year I finally had an appointment with a genetic consultant to discuss the likelihood that I carry either a faulty BRCA1 or BRCA2 gene. A mutation in one of these genes would make me much more likely to develop breast as well as ovarian cancer. And the results could have quite an impact - not only on me, but also my extended family.

A couple of months before the appointment I was asked to complete a detailed family history listing anyone in my extended family who'd ever had cancer. Going back through my family tree showed the only people who'd had ovarian cancer were very distant relations, and none of them developed it at an early age, unlike me. So I felt fairly confident the consultant would say there wasn't a very high risk I carry a faulty gene, and leave it at that. (Apparently they don't go any further with genetic testing than an initial chat unless there's a strong indicator that you're likely to have a genetic mutation.) But to my surprise he seemed to think that because I was only 25 years when I was diagnosed, there was a good chance a faulty gene could be the reason.

He offered to carry out the blood tests then and there so they could start the DNA sequencing process to check for changes to the BRCA1 and BRCA2 genes. He asked if I wanted more time to think about it first, but it seemed such an easy decision. After all, surely it's much better to know if your health is at risk than to bury your head in the sand and carry on thinking things are fine? That's how it seemed to me when he asked anyway.

I want to know if I'm more likely to develop breast cancer because then I can have regular check ups and monitoring. (I obviously know I'm more likely to have ovarian cancer!) And I can also think about whether it's worth having my breasts removed to reduce that risk and make it more likely I'm going to be here for a long time to come. Which, after all, is what's really important - I want to be around for many years to come to see Molly, and my soon-to-be-born second child, grow up.

But the results of the testing have a much wider impact. A positive result would affect all the women in my extended family - Mum, aunts, cousins. And not all of those people want to know whether they're at risk. Some would rather live in ignorance and not have the shadow of cancer cast over them. And I can completely understand that - who wants to think they could develop cancer at any time? But I have to be selfish and think about my life and how to make sure I do everything I can to keep myself healthy. And that means going ahead with the genetic testing. I feel awful that it's causing others worry and anxiety but I have to protect myself and my children, and testing seems like the best way to do that.

So I agreed to have the testing while I was there, and had what seemed like endless tubes of blood taken ready to be sent off to the lab. It will take a couple of months for the results to come back, so I'm not expecting to hear anything until February or March. And I'll only have another appointment with the consultant if the testing does show something.

Of course, it's still far more likely that getting ovarian cancer was just one of those things. And at the moment I still think that's probably what it was - something in my body just went a bit wrong and I developed cancer. After all, that's what happens for the majority of people. Having a genetic predisposition is actually much less common. So I'm trying not to think or worry about it too much now. And anyway, I can't change the results so worrying would be pretty pointless. Besides, I've got far more important things to concentrate on. The baby is due on 29th January, so I've not got long to go now. Soon I'll be a mum to two gorgeous children - I can't wait!

Em

Having A Family After Cancer

noreply@blogger.com (Em) — Sun, 28 Aug 2011 19:19:00 +0000

How much I hate ovarian cancer: very bloody much (to be polite about it)

I have lost a lot of friends and great women to ovarian cancer this year. Women who have fought long and hard, with courage, dignity and grace. These women are someone's mother, wife, partner, daughter, sister. They leave taking a huge piece of people's lives and happiness with them. And they leave the world a better, but far emptier place for having been in it.

Currently I know a couple of really wonderful women who are fighting very hard. A fight it seems they're unlikely to win. They are mothers to young girls, and all I can think about is how awful it must be for those girls to watch their Mum suffering so much. I keep imagining how much it would affect your entire life to see your Mum become a shell of the person you love and look up to, to see her in pain and struggling to hold onto life.

It has really made me question whether bringing children into the world, when I may end up suffering the same fate, is actually an incredibly selfish thing to do. I'm having a family because it's what I really want. But that's just it, it's what I want. My daughter, and soon my second child, haven't asked to be born - and they certainly haven't asked to potentially cope with a sick and dying Mum.

Of course, I know you can't live life thinking like that, waiting for the cancer to come back. After all, I could get hit by a bus tomorrow. You can't live life on a 'what if'. But when I see this horrible disease taking really fantastic women, I really do start to wonder whether my choice to have a family has been selfish.

I guess at the end of the day all I can do is hope my cancer doesn't come back. Or hope that it doesn't come back for a very long time. Or hope that it is treatable. Just hope.

Em

Pregnant Again Three Years After Finishing Chemo!

noreply@blogger.com (Em) — Tue, 02 Aug 2011 13:16:00 +0000

Number of years since finishing chemo: 3 & 1/2
Number of months pregnant: 3
Feeling at finding out I was pregnant for the second time: SO excited!!

In contrast to the cancer scare I had earlier in the year, a couple of months ago I had some rather different news. Early one morning in May a blue line on a pregnancy test confirmed it: I'm pregnant again!

I really can't believe how lucky I am to be having a second child. It's something that was just a pipe dream when I was going through chemo - something I desperately wanted to happen but never really believed would. Not that things have been completely straightforward since finding out I was pregnant. A week after doing the test I had really strong cramps which didn't feel right at all. So I went to the doctor who sent me straight to the hospital. They immediately thought it was an ectopic pregnancy and admitted me in preparation for possible surgery.

Happily, an ultrasound scan later that afternoon showed the pain was being caused by two non-cancerous cysts on my left ovary. It also showed the pregnancy was in the right place, although being so early they couldn't see any sign of a baby, just a yolk sac. Cue two weeks of torturous waiting until I could have another scan to see if the pregnancy was progressing. Thankfully the rescan showed a tiny little blob with a flickering heartbeat - the best sight in the whole world!

I'm now 14 weeks pregnant and still suffering with bad morning sickness. But who can complain about that? It's just great to be sick for a good reason, rather than because of chemo! I'm slowly expanding out of my clothes too, and don't think getting a noticeable bump is far away. It'll be really nice when that happens though - then the whole world will know little baby McArthur exists.

Outside of the pregnancy I haven't had the genetic testing done yet that I agreed to in my last oncology check up. But I have started the process, and I'm just waiting to get an appointment with a genetic consultant at the hospital. In the meantime I'm concentrating on the excitement that sometime around the end of January next year, there will be a new little life in the world!

Em

A Very Big Scare

noreply@blogger.com (Em) — Tue, 12 Apr 2011 17:56:00 +0000

Number of years since finishing chemo: 3
Panic that the cancer had returned: reasonable
Relief that it hadn't: immense!

The start of this year marked three years since finishing my second course of chemotherapy to treat recurrent ovarian cancer. It also marked the start of a worrying few months when it looked like the cancer might have come back.

It all started just after Christmas, when I developed a stitch-type pain on my lower left side, around my bladder/womb area. I've always had lots of aches and pains since finishing my treatment, and some of them can be pretty sharp. But this one was unusual, and not something I'd ever experienced before. So after a couple of months of trying to ignore it, the pain got worse and Justin finally convinced me to contact the hospital.

When I phoned up, my gynae-oncology nurse was lovely, and immediately took my concerns seriously. They decided to send me for a CT scan to check whether or not it was another recurrent tumour. Thankfully the appointment came through within a week, so I didn't have to wait long. The scan itself took ages though. You have to be there an hour before your actual scan so you can drink a litre of squash that has contrast dye in it. Then, once you're changed into a gown, a cannula is put in your arm so they can inject more dye into you partway through the scan. Everything went smoothly up until this point. But my veins are really narrow, and after all the needles that have been jabbed into them for blood tests and chemo, they're pretty rubbish. So when they started to push the dye into my vein to finish the scan, it collapsed and the dye leaked into the surrounding tissue in my arm. I came out of the scan with what looked like a golf ball just above my inner elbow - it was so painful! Luckily it didn't stop them completing the scan though.

I was due to see my new oncologist a week after the scan for my routine check up, so I didn't have to wait long for the results. In the meantime I had a period, and the pain eased off a bit, so I was starting to think that may be it was endometriosis. It was still nerve-wracking sitting in the waiting room before being called in to see my oncologist though, especially as I'd never met him before. He actually turned out to be really nice - and even better, he told me the CT scan showed no evidence of cancer! My CA125 level (the protein in your blood that's sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) had gone up slightly to 16, but as the upper limit of normal is 35, it's no cause for concern. In fact, before it dropped to around 10 a couple of years ago, it was always about 16-17, so it certainly didn't bother me that it had risen.

My oncologist wanted to investigate the pain I was having further though, and suggested I had an ultrasound scan to see if it showed anything. An ultrasound scan can actually show up some womb and ovary problems more clearly than a CT scan, so he thought it would help to give a definitive answer. So, a week later I was back at the hospital having yet another scan. The internal ultrasound was very uncomfortable on my left side where the pain had been, and after jabbing at it particularly hard to prove it was a sore spot (totally unnecessary if you ask me!), the doctor confirmed it was endometriosis. It was a huge relief to know that it definitely wasn't cancer - although endometriosis can cause it's own problems, particularly with fertility. Still, it's not life-threatening which is all that matters to me!

Because of the concern that I might've been ill again, my oncologist has decided to return me to 6 month check ups, rather than annual appointments. In some ways it's a bit of a relief - going from 3-monthly to annual check ups always felt like a bit of a jump. In the meantime I'm going to go for genetic testing, just to make sure I don't have a BRCA gene that predisposes me to ovarian and breast cancer. With no close relatives having got ill from either cancers, I think it's pretty unlikely. But now we've got Molly I want to make sure she's not at any increased risk.

All in all, it's been a worrying, but eventually positive few months. And now I can push it all into the background again until my next check up in September. In the meantime I just have to get used to the new pain from the endometriosis, and learn to manage it along with all my other niggles and aches. But that's just something you have to accept and deal with as a cancer survivor. And I'm certainly not complaining - it's a small price to pay for being here and being healthy.

Em

Can You Ever Move On From Having Cancer?

noreply@blogger.com (Em) — Thu, 16 Sep 2010 10:20:00 +0000

Number of years since finishing chemo: 2 & 1/2
Level of 'normality' to my life now: 9/10
Number of times I think about cancer a week: too many to count

It's been 2 & 1/2 years since I finished my second course of chemotherapy now, and I'm continuing to feel more like my 'pre-cancer' self every day. Recently though, I have been unable to stop thinking about the experience of being ill: remembering the day the doctor delivered my diagnosis, the nerves before having my first ever chemo treatment (and every treatment following it), the post-surgery and post-chemo recoveries, and all the countless blood tests and hospital appointments.

I don't mean that I've been wallowing in it all, or getting depressed about having cancer. It's more that I feel unable to let it go and allow it to slip into my past. I think being given a whole year until my next oncology check up has made me somehow feel insecure. Not that the cancer is going to come back anytime soon - at least I really hope not! It's more that I'm so used to having the hospital my life, it feels like there's a hole that nothing else can ever fill. It's how I felt after finishing all my treatment, and my weekly trips to the hospital suddenly stopped and became 3-monthly check ups, just to a lesser extent.

It's a very difficult thing to explain, how you can feel desperate to never have to see oncologists and hospital wards and cancer centres ever again, and yet at the same time miss the fact you're not. I think perhaps it's just impossible to ever put an experience like having recurrent cancer completely behind you. After all, cancer is everywhere - in the media, on the television screen and worst of all in the lives of your friends and family. In the UK ovarian cancer is still the fourth most common cancer in women (see the Ovacome website for more information), and with one in three people developing cancer at some point in their lives, the chances are you're going to meet or know someone that has or is affected by the disease. However it should be said, while ovarian cancer is more common and less survivable than it should be, there are plenty of ovarian cancer warriors out there who are beating the disease every single day.

As I said before, I'm not sitting writing this feeling low or depressed. On the contrary, I love my life and feel incredibly lucky with the way it has turned out. It's 5 years now since I first became ill (which at 30 years old is really quite a sizeable proportion of my life). But my life today consists of other things - I have an amazing family, fantastic friends, and I really couldn't ask for any more. May be it's the case that you don't move on from cancer, you just have to find a way to incorporate it into your everyday life as comfortably as you can.

Em

1 Year Celebrations All Round!

noreply@blogger.com (Em) — Wed, 07 Jul 2010 09:38:00 +0000

Number of years since finishing chemo: 2
Current CA125 level: 11
Next oncology check up: March 2011!

In my last entry I was happily celebrating not having to go back to the hospital for a check up for 4 months - getting one extra month off to normal seemed like a really big step forwards. Well I now have even better news than that: in my latest check up it was decided that I don't have to go back again for a whole year!!!

My check up was slightly different to normal this time around as my usual oncologist has stopped doing a clinic at my local hospital, so I ended up seeing my surgical consultant instead. He is always a bit more laid back about things than my oncologist, and after looking at how long I've been going to the hospital and how low my CA125 level is, he decided I only need to be seen once a year now!

It seemed crazy to be told that I could have such a big leap in time between check ups so suddenly. My oncology nurse was lovely and reassuring though, and immediately said that I could call anytime if I had any concerns and that they'd fit me in for a quicker check up straight away. I'm not convinced that my oncologist would have left such a big gap if I'd have seen him rather than my surgical consultant, although I was hoping to be given 6 months between appointments this time around. However, I'm just really pleased that he thinks I'm well enough now to go away and live a very normal life again.

I did initially worry when the decision was made that not having an appointment for a year could mean that if the cancer came back then it could potentially go unchecked for quite a long time. However it has been 2 years since finishing chemo, my CA125 level (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) has continued to stay low, and I have had no symptoms of ovarian cancer. There is absolutely no indication therefore that the cancer is about to return, so what is the need to have 4 check ups a year, especially when those appointments would be far better being given to someone who has just been diagnosed or is going through treatment? Plus it means that I can leave the hospital far behind and get on with my life again. It has already been almost 5 years to the day since I first became ill with an ovarian cyst that was later found to have been caused by cancer, so I think it's high time I stopped having my life dominated by the hospital!

My celebrations at not having to go back to the hospital for a year were closely followed by even more joyful ones - 3 weeks ago Molly turned 1! I really can't believe that a whole year has somehow flown past and suddenly I don't have a little baby anymore, I have a mini toddler! We had a brilliant time celebrating her birthday with friends and family, and just kept pinching ourselves to think of the struggle we'd had to get to that point, and now suddenly there we were with a 1 year old. When I started this blog it used to be that my days, weeks and years were a blur of hospital appointments, tests and treatments, and now I can look back at the last year and see it was a blur of nappies, feeds and sleep deprivation. It's so brilliant!!

We would really love to have a brother or sister for Molly at some point, and so the hospital isn't completely out of my life. I've got to go back to have some fertility tests over the next month to see how low my egg reserves are as a result of all the chemotherapy. One of the tests is a scan of my remaining ovary to see if it looks healthy, which I've just had done and can happily report that it looks absolutely fine - go the left ovary! As well as this I will also have to do blood tests in the coming weeks to measure the oestradiol, FSH and lutenising hormone levels in my blood. To put this into plain English, the results of these levels will give an approximate indication of how low my egg reserves are, and therefore not only how long I may have left to conceive another baby, but also when I could potentially start to go through the menopause. Only having one ovary, and having blasted that with 2 courses of chemotherapy, means that I will go through the menopause earlier than the average age of 52. Indeeed, in my check up prior to this last one my oncologist said that I should start looking out for the symptoms of it now. Great!

Anyway, I'm certainly not going to worry about the menopause just yet, or even whether or not we'll get to have another baby. I'm just going to concentrate on the beautiful little girl I've already got, and revel in both of our 1 year celebrations just a little bit longer.

Em

2 Years Cancer Free!

noreply@blogger.com (Em) — Sun, 21 Feb 2010 16:22:00 +0000

Number of months since finishing chemo: 25
Current CA125 level: 9
Feelings about the future: Hopeful and excited

Yes I can't quite believe it but it's been 2 years since I had my final chemotherapy treatment! And, as if reaching the 2 year clear mark wasn't cause enough for celebration, in my oncology check up just before Christmas I found out that my CA125 level has dropped to 9 - the lowest it's EVER been!!

It's crazy to think that it's now been 2 years since I was at hospital sitting hooked up to an IV line and getting those horrendous chemo drugs flooded into my system. In many ways it doesn't feel like it was that long ago at all. I remember so clearly the sinking feeling of walking into the Cancer Centre, of sitting down in a big comfy chair, holding my breath while a nurse worked to get a vein up to cannulate, and then watching as over about 6 hours the colourless, harmless looking meds were dripped into my body. And all the time it is happening you are powerless to stop what you know is inevitably coming: the sickness, the exhaustion, the aching muscles and painful joints, the bone pain, the headaches and all the other numerous side effects that wrack your body over the following weeks.

And yet, whilst all that is still so clear in my mind, it is also so far removed from my life as it is now. I feel so lucky to be able to say that too. Having been through treatment for the initial diagnosis of my ovarian cancer, and then again for the recurrence, I know without question how lucky I am not to have the hospital as a dominant presence in my life any longer. After having had a spell of minor illnesses over the last 3 months - colds, stomach bugs, a chest infection and the flu - I developed tonsillitis just over a week ago, and wasn't been able to get out of bed for a week (not helped by getting a stomach bug at the same time!) It is the biggest spell of illness I've had since finishing chemotherapy, and being stuck in bed feeling ill and weak over the last week (obviously not in the same way as after being blasted by a dose of chemo) really took me back to those awful days.

It has made me think about how I would manage if, and I am touching a big piece of wood and keeping all my fingers and toes crossed as I write this, the cancer was to come back. I know statistics all decree that it will at some point, it's just a matter of when (although statisics are just mathematical versions of rules that are there to be broken if you ask me!) The thought of having to find the energy to get through surgery and chemo again is not a pleasant one, and yet I know from experience that if it happens then you just do get through it somehow because you have to.

Still, I can happily say all that is just a contemplation and not something that looks set to happen anytime soon. For now I just have to go back to the hospital every 3 months for check ups, which, when they're like my last one and I find out my CA125 is so low, are a joyful reassurance rather than worrying intrusion. In fact, for 'good behaviour' my oncologist said I don't have to go back for 4 months this time around which means 4 months of a lovely, hospital-free, "normal" life.

Now that I am getting more and more time away from the hospital I'm trying to make the most of it by doing work to help raise awareness of ovarian cancer, and by taking part in research projects so that my experience can be used to improve the service provision for anyone else who finds themselves being diagnosed in the future. After all what could be better and luckier than getting the luxury of time to turn the awful experience of being diagnosed with cancer into something positive and useful?

Em

From Cancer Patient To Mum

noreply@blogger.com (Em) — Sun, 16 Aug 2009 16:35:00 +0000

Number of months since finishing chemo: 19
Current CA125 level: 17
Number of weeks I have been a Mum: 8
Mood: Ridiculously happy, if a little tired!

It has been a long time since I last wrote, but to be honest I had contemplated not adding anymore entries to this blog and just leaving it as a completed experience of me going through treatment for recurrent ovarian cancer. Then I thought about it and realised not only is that unrealistic because the experience is never over, but also that the start of the new chapter in my life has really come with the birth of my beautiful baby girl, Molly.

Yes, on 15th June I become a Mum! I had a gorgeous little girl who was worth every single last minute of the operations, chemotherapy, scans, tests and appointments that it took for me to be well enough to have her. Considering everything my body has been through, the remainder of the pregnancy since my last entry went pretty well. The cyst on my left ovary that was causing problems dissipated on its own so I didn't need to get it drained, and I had no more bleeds which was another big relief. Other than that I just had the typical side effects of pregnancy: morning sickness, nosebleeds, dizziness, tiredness etc. The last trimester was pretty hard going though having not that long finished a second course of chemo, and I became quite drained and exhausted. I also developed symphysis pubis dysfunction (see the Baby Centre website for a more detailed explanation of what SPD is), which was incredibly painful and meant that I couldn't walk for the last few weeks before the birth, but it was all so so worth it. After 3 days in slow labour, and then 18 hours in established labour I finally gave birth to a tiny baby girl who couldn't have been more perfect.

The last 8 weeks have been exhausting with all the sleep deprivation and incessant feeding and nappy changes, but it is just so brilliant to be exhausted for a really good reason for once! Of course while the operations and chemotherapy are finally behind me, the check ups are going to be a part of my life for a long time to come. My last check up was in May, just a few weeks before Molly was born, and thankfully everything was still looking good. My CA125 level (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) was 17, which seeing as the upper range of normal is 35 I was really pleased with. My next oncology appointment is in a few weeks time, and hopefully things will have carried on in a similarly good manner in the last 3 months, and will continue to do so for years and years to come.

Becoming a Mum has given me a new 'label' so people don't look at me and foremost see a cancer patient, but it has also provided me with new concerns. Now I fear what would happen if the cancer came back, and how it would affect Molly. I want to make sure I'm around to see her grow up and lead what I've no doubt is going to be a fantastic life, so the thought of the cancer coming back is even more worrying. I also wonder whether my having had ovarian cancer is going to put her more at risk of developing it too. The thought of her ever having to go through what I have is just unbearable.

Still, hopefully all those worries are just academic - I am going to stay well now, and Molly is going to lead a long, happy life too. I just hope that she grows up to have the same amazing support network around her that I've got. I have fantastic friends and an even more amazing husband with whom I now have an incredible daughter. I may have been diagnosed with cancer at 25 but I would like to think that I haven't let it control my life, it's just that I have ended up following a different path to the one I anticipated. And, while I may have got to this point the hard way, I'm now healthy and have my own family - you can't get better than that.

Em

Pregnant After Cancer!

noreply@blogger.com (Em) — Tue, 30 Dec 2008 20:08:00 +0000

Number of months since finishing chemo: 12
Number of months after finishing chemo that I got pregnant: 9
Level of surprise at getting pregnant so quickly: high!
Feeling at discovering I was pregnant: ecstatic!!

3 months ago I posted an entry about what the future might hold now that all my cancer treatment is finished, and in it I said that I hoped it might contain children. Then, just a few weeks after writing I found out I was pregnant - how amazing is that?!

I can't believe that I could be so lucky to have gone through everything I have over the last few years, and to come out the other side of it still able to have a baby. Looking at the positive result on the pregnancy test just felt like I was holding a miracle. The whole time I was going through all of the operations, tests and doses of chemotherapy I desperately tried to hold on to the dream that I might still come out the other side of it and have my own baby. But, when the cancer came back 6 months after finishing my first course of chemo I just felt like that possibility was slipping away. And now, I'm 3 months pregnant and around 20th June next year will actually be holding my own little bundle. It still just doesn't feel real!!

Of course, typically for me it hasn't all been plain sailing since finding out I was pregnant. An early scan when I was just 4 weeks pregnant revealed two cysts on my left ovary, and as the cancer in my right ovary presented initially as cysts both us and the hospital were pretty concerned about it. Fortunately further ultrasound scans have showed that they are just simple cysts, and one of them has now dissipated on its own and gone. The remaining one is causing a bit of a problem though - it's 4.5cm, which isn't massive, but it is big enough to feel uncomfortable. The real problem with it is that if it twists, which it's possible it could do, then I will lose the ovary. Seeing as that is the only one I've got left, that would be a very bad thing! It means that if the cyst doesn't go on it's own in the next few weeks then I'll probably have it drained to make sure that can't happen. Apparently there is a slight risk to the baby in getting it drained, because they could accidentally insert the needle into the womb rather than the cyst. However, if the cyst is left in place and it twists then not only would I lose my ovary, but it could put the baby at risk too. It's all so complicated, but then I'm never a straightforward case!

On top of the problems caused by the cyst, I also had a heavy bleed when I was 7 weeks pregnant and thought that I was going to lose the baby. It was really scary, but amazingly the baby hung on in there (it must have inherited its Mum's determined genes!) and since then there have been no signs of any bleeding, thank goodness.

So, it has been 12 months pretty much to the day since I had my last dose of chemotherapy, and the difference in my life one year on is huge. I have hair for starters, which I'm very grateful for in this cold weather! And now I'm pregnant too, and can look forward to 2009 being a life-changing year for all the right reasons, rather than all the wrong reasons of the last few years. It's amazing what a difference 12 months can make. I feel like this baby is the line that ends the part of my life where I was a cancer patient, and starts my life as me again. From June next year I will be a Mum! I can't think of a better way to wave goodbye to 2008 - the cancer is banished and in its place is a beautiful baby. I really am the luckiest person in the world.

Em

The Past, The Present And The Future (Part III)

noreply@blogger.com (Em) — Mon, 29 Sep 2008 18:46:00 +0000

The Future

My last two entries have been about what has happened to me in the past 3 years and how that has affected me in the present, but now I have to consider what might happen in the future which is far harder to do.

At the end of the last entry I wrote about how coming to terms with having cancer is something that I am going to have to do in the future. Because for now, while I can think logically about all the things I've been through, I can't get my head around the fact that all those things have happened to me because I've got ovarian cancer. Even writing those words, I've got ovarian cancer, feels very disconnected from me as a person. And yet I am going to have to find a way to accept it and move on. I think I have got to this point by disassociating myself with the whole thing - getting ill and having all that treatment happened to another version of me, and now I'm looking to revert back to the person that existed before September 2005. Except that I know I can't do that, I have to somehow merge the two to create a new me almost. I am hoping that this will happen seamlessly in the future; that as I get better and feel stronger, and as more and more time passes without the cancer recurring, then I will gain increased perspective on the whole thing and be able to accept what has happened.

Of course, accepting you have had cancer and moving on is always going to be difficult when the threat of it coming back is always lurking. I have no idea whether or not I will get to declare that I am in remission (something you can only do after you have been clear for 5 years), but it is certainly what I'm going to aim for. I cannot predict what might happen - after all I would never have predicted that I would get cancer at 25 - I can only accept that it might come back, and hope that it doesn't. In the meantime of course, to see if there are any signs that the cancer has returned, I will continue to have check-ups and blood tests and scans. These will be every 3 months for the time being, but I will gradually move to having them every 6 months, and then finally to just one a year if all remains unchanged and healthy.

To look into the future and see the possibility of the cancer recurring is frightening, but there are other, much brighter things in the future too: being able to live a life with great friends and family, and to have a wonderful marriage with Justin. And maybe, just maybe to have a family of our own. And that is really my big hope for the future, alongside continuing to be healthy. If I stay cancer free then there really is a chance we could have children, and that would be the most amazing and brilliant thing.

So I guess that while the past 3 years have been pretty awful, and the present continues to be a bit of a struggle, the future has the potential to be really rather good!

Em

The Past, The Present And The Future (Part II)

noreply@blogger.com (Em) — Wed, 17 Sep 2008 18:03:00 +0000

The Present

As I talked about in Part I of this entry, so much has taken place over the past 3 years that it is hardly surprising to find the present so affected by it. It has been 7 months since I finished my treatment, and 1 & 1/2 months since I was told there is no sign of the cancer, and yet my life is still heavily dominated by the effects of it all.

The most obvious effect is the tiredness and lack of energy that are a direct result of having had chemotherapy. It is often overlooked and not mentioned by the hospital when you start a course of treatment, but you can actually continue to feel more tired and less energetic for years following chemotherapy. This causes huge amounts of frustration when your treatment is over and you have been told there is no sign of the cancer because you feel like you should be "normal", and being "normal" somehow means being able to go to work, have a social life, do exercise, do housework, shopping etc etc. When you find yourself being unable to do all of those things you get incredibly frustrated with yourself, especially as you are so desperate to do them and prove to yourself that you're completely well and don't have cancer any more. The whole situation can be made even more difficult because, while a lot of people accept that you are going to be pretty exhausted while you're actually going through chemo, many don't realise how long the fatigue goes on for once your treatment has finished, and so can seem surprised when you are unable to keep up with everything they are doing.

For me, the tiredness is something that frustrates me beyond belief. I feel like I have spent so many years of my life being ill and being tied to the hospital that now I have been told I'm clear of the cancer I am determined to get back to normal as quickly as possible. Of course, after being battered about for 3 years with barely any respite my body doesn't have quite the same idea and is steadfastly refusing to cooperate! I am trying to remain patient: I have returned to work, but on a part-time basis; I try to put rest days in after any big activity I do; and I'm trying not to book up too many weekends in a row socialising and catching up on the 3 years of social life I've missed out on. But, despite this, I still feel tired a lot of the time, I struggle to concentrate on things, and I don't always have the energy I need to do everything I've got planned for the day. I know that in the future this is something that will improve, it's just a matter of time and of course patience!

The other very obvious effect of the chemotherapy treatment is my hair, or rather my lack of it! Whilst it is definitely growing back, and at a faster rate than I had imagined it would, I still have very short hair, and a hair style that, while to others may not look like I've had cancer, to me screams it out everytime I look in the mirror. I had short hair many years ago, way before becoming ill, and so the length of my hair is not so much what bothers me, it's more that I know I haven't chosen to cut my hair this short, it has been imposed upon me. It is a small, yet very big difference, and it certainly affects how you feel about yourself. In fact getting your self-confidence back after being ill is another big challenge. For me I have days when I feel ok, and others when I feel I'd like to shrink into a corner never to be seen by anyone again. It's difficult sometimes to get up and force myself to go out, but I know nothing is going to come of sitting around. And besides, I've spent far too much of my time indoors over the last 3 years that I'm not about to start doing it voluntarily!

It is hard when your treatment has changed your physical appareance, like mine has with my surgery scar and my hair loss, to feel "normal" and confident though. It is also incredibly hard when you have spent so long being defined as a cancer patient to try to shake off the label. And that is just in your own mind, let alone how other people can view you. For me I have to say that everyone I know has been fantastic, and managed to strike that hugely difficult balance between treating me as normal so that I don't still feel like a cancer patient, and yet still being considerate of how tired and run-down I may be feeling. In my own head it is going to be somewhat more of a battle though, and one that is only now starting to form: how to accept that I am a cancer patient, that I have had cancer, that having cancer is a part of who I am? I honestly have no answers for this at the moment. I have only just started to reach the point after treatment where the events of the last 3 years are sinking in enough that I can begin to contemplate them, let alone work out how to accept them. That is definitely something the future holds...

The Past, The Present And The Future (Part I)

noreply@blogger.com (Em) — Mon, 25 Aug 2008 20:17:00 +0000

Number of years since I got ill: 3
Number of months since I finally finished treatment: 7
Number of months since I was told there was no sign of the cancer: 1 & 1/2
Number of months/years I will remain cancer free: unknown

Now that the news of being pronounced cancer free has finally started to sink in, I am finding myself thinking more and more about everything that has happened to me over the past 3 years: what I have been through in that time, how having cancer is affecting my life now, and what influence it might have on my future.

The Past

It has been 3 years to the day this weekend since I first became ill and over that time so much has happened, as this timeline shows:

Aug 05 - developed chronic lower abdominal pain, which lead to several spells at hospital for diagnosis
Sep 05 - had an ultra-sound scan which showed a 10cm cyst on my right ovary, and then emergency surgery 2 hours later to remove it
Nov 05 - went back to the hospital after increasing pain following the surgery
Dec 05 - had an ultra-sound scan which showed another large cyst on my right ovary
Jan 06 - had surgery to remove the cyst and my right ovary
Feb 06 - was called in by the hospital and told I had ovarian cancer
Mar 06 - had a CT scan to check for cancer spread
Apr 06 - was told the cancer was in the early stages and hadn't obviously spread, but was aggressive so I needed chemotherapy treatment. Started a course of IVF treatment to freeze embryos in case the chemotherapy made me infertile
May 06 - completed the course of IVF, and had a laparoscopy to make absolutely certain the cancer hadn't spread
Jun 06 - started a 6 treatment cycle of Carboplatin chemotherapy
Oct 06 - finished chemotherapy
Nov 06 - had my first check-up: everything looked clear
Feb 07 - had my second check-up, plus a CT scan: everything looked clear
Apr 07 - had my third check-up: CA125 levels had started to rise
May 07 - repeated my CA125 blood test: levels had risen even more
Jun 07 - had an ultra-sound scan which showed a 5cm tumour had grown around my womb, followed by a pelvic MRI scan to check for further spread
Jul 07 - was told there were no further visible tumours and had surgery to remove the tumour around my womb, which was thankfully done without needing a hysterectomy
Aug 07 - started a 6 treatment cycle of Taxol-Carboplatin chemotherapy
Sep 07 - discovered I was pregnant with twins but that the pregnancy wasn't viable, and subsequently had a forced miscarriage
Jan 08 - finished chemotherapy
Feb 08 - had head and pelvic MRI scans to check for signs of the cancer. Saw my oncologist for the results and was told there were signs the cancer may have spread to my bowel
Jun 08 - had a repeat pelvic MRI scan to confirm whether or not the cancer had spread
Jul 08 - it was confirmed that the bowel spots were endometriosis, not cancer

Phew! Although it looks a lot, I feel quite flippant writing about the last 3 years of my life like that - it seems too easy just to list everything down in comparison to the struggle it took to actually get through it all. Perhaps a couple of facts would help to set it in context:

I have:
- spent at least 12 hours under anaesthetic having operations to remove nasty bits of cancer, and to scope out any places it might be lurking
- had around 20 lots of imaging (MRI scans, CT scans, ultra-sounds and x-rays), which is a lot of radiation!
- spent more than 50 hours having chemotherapy administered - that's over 2 days solid
- had over 130 appointments at the hospital, which is one everyday for over 4 months
- spent over 80 hours in waiting rooms, which is an estimated average as waiting times for appointments ranged from 15 minutes to 8 hours!
- spent around £1000 on car parking charges
- missed 17 & 1/2 months of wages through being off work sick

I think that really shows just how much the hospital has dominated my life for the past 3 years. It has been an all-consuming battle that is continuing even now...

Being Pronounced Cancer Free: Priceless

noreply@blogger.com (Em) — Sun, 06 Jul 2008 12:11:00 +0000

News from the hospital: all good
Level of relief: immeasurable!!

After months and months of holding my breath waiting to find out whether or not the cancer had returned and spread since finishing chemotherapy 6 months ago, finally the day came on Friday to find out.

Sitting in the waiting room at the hospital waiting to hear my name called out to go in and see my oncologist and hear the news was one of the most tense experiences of my life. It didn’t help that the clinic was running half an hour late so I had to wait even longer, but then that’s pretty normal for hospitals really. Finally, I was called through into one of the examination rooms to wait for him to finish with his previous patient. At that point it felt so near, but still so far from finding out. Within minutes he came in though and immediately said that it was all good news, so I could stop worrying. The relief!! He then sat down and explained that the MRI scan had shown no spots on my bowel at all this time which, because it was done in at a different point in my menstrual cycle, indicated almost without doubt that what they had seen in the first MRI scan 4 months ago was endometriosis. (See the NHS Direct website for a more detailed explanation of what endometriosis is). Plus, the blood tests I did last week showed that my CA125 level is 12, which is pretty much the lowest it’s ever been in the whole of the 3 years I’ve been ill for (35 is the upper range of normal).

It was just the most amazing news to get, and yet I almost felt like I was in a fog while he was talking. When we left and came home both Justin and I sat there completely shell-shocked. I think we had both been so tense beforehand that, although we were both ecstatically happy with the news, neither of us could quite process it. 2 days on and I still feel a bit weird about it to be honest. I feel like I should be jumping for joy and running around shouting and laughing about it, but I just feel a bit numb. I think that after 3 years of setbacks and bad news it’s just hard to comprehend that something has finally turned out the way it should. Mind you, I think after that amount of time I was certainly due to have my luck turn!

I know it’s just going to take a bit of time to sink in, and for the tension of the last 4 months or so to dissipate. When I think about the fact that (at the moment) the cancer appears to have gone, the amazement and relief I feel is indescribable, and yet in a tiny corner of my mind is the thought ‘is it going to come back at some point, and if so when will that point be?’ It’s a pretty natural reaction to have after going through much and I know that with time, even though it will never go completely, it’s something that will slip further and further to the back of my mind. For the moment though it all looks really good, and there’s no reason to suspect the chemotherapy hasn’t killed the cancer off this time.

In practical terms it all means that I can now move to having check-ups at the hospital every 3 months, which will involve having blood tests done and being examined to keep monitoring for signs of the cancer. Every so often I’ll also have another scan just to be certain. It seems amazing to have finally reached the point where I only go back to the hospital for check-ups! It’s quite a milestone to reach. I’ve certainly reached another milestone too: 6 months after the first course of chemotherapy they found that the cancer had come back. Now I’m back at the 6 month mark after my second course of chemo, only this time there is no sign of it. Long may that continue!

Em

The Penultimate Day Of Waiting

noreply@blogger.com (Em) — Thu, 03 Jul 2008 14:40:00 +0000

Number of days until I find out whether or not the cancer has come back: 1
Mood: apprehensive to say the least!

Finally the months have ticked down and the mammouth wait is almost at an end. This time tomorrow I will be less than an hour away from finding out whether or not the cancer really has spread to my bowel. To say I am worried and nervous about the appointment would be a vast understatement! Still, it will just be so good to know what’s going on, one way or another.

Last week, in preparation for tomorrow’s appointment with my oncologist, I had a pelvic and abdominal MRI scan. This is so that the doctors can compare it to the one I had 4 months ago and look to see whether or not the spots they saw on my bowel the first time around have grown, multiplied etc. I also had blood tests to check my CA125 levels (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) to see if they have changed. The blood test didn’t go too smoothly however, because they let a trainee loose on me - perhaps not the best idea when my veins are pretty shot from so many blood tests and all the chemo! So the poor woman poked repeatedly at the only vein she could find for ages, but to no avail - not one drop of blood would leak out. So, after apologising profusely, she had to ask one of the other nurses to take over, who on her second attempt finally managed to get a whole tube of blood out. Of course after being poked about so much I developed a rather impressive bruise, the problem being that it’s right on the inside of my elbow so whenever anyone I don’t know sees it I swear they think I’m a drug addict!

Thankfully after all that the MRI scan was a breeze. I forget between each scan just how claustrophobic they are though: you lie down on a bed which slides into a tunnel, the roof of which feels literally inches from your nose, and are injected with a contrast dye so that they can see everything better. Then a prop is placed under your legs to raise them, and you have metal plates placed over your abdomen. Once that is done you are strapped down tightly onto the bed so you can’t move. You are given a bell in the fingertips of one hand in case you start to panic and need to come out, or start feeling ill, but your fingertips are literally the only things you are capable of moving. It’s also incredibly noisy once the machine starts, so much so that even with the industrial headphones you are given to wear you still feel like you’re being deafened. Still, after about 25-30 minutes the claustrophobic noisiness was all over, and I got to go home with the knowledge that in a matter of hours some radiographer somewhere could know my fate.

The wait over the last week for the appointment with my oncologist to come around has in some ways been harder than the whole of the last few months for that very reason: because all I can think about is that the doctors have already seen my scan and so already know what is going on, but I don’t. I still have no idea whether or not everything is going to be ok. For the first couple of months after getting the results from my last MRI scan and finding out the cancer may have spread to my bowel I really swayed between thinking it was going to be ok, and thinking it wasn’t. But for the last couple of weeks I haven’t felt hugely confident about the outcome. They always say to trust your intuition, and so far over the last 3 years since I became ill mine has always been spot on. However now I’m not sure whether it’s intuition that is telling me things aren’t completely right, or whether it’s just nerves and anxiety that are driving me to think it. Plus my track record doesn’t exactly stand me in good stead for positive outcomes, which could be making me wrongly think the worst. So, all in all I guess there is just no telling how things are going to go. But, now I’ve had some time to get over the chemo, I feel strong enough that if there is more treatment up ahead then I know I can get through it and fight it all the way. I just really really hope I’m not going to have to…

Em

A (Tentative) Return To Work

noreply@blogger.com (Em) — Thu, 19 Jun 2008 14:32:00 +0000

Number of days until I go back to work: 6
Number of days until my MRI scan: 6
Number of days until I find out whether or not the cancer has come back: 15

Well it’s been about 5 & 1/2 months since I had my final chemo treatment, and finally I am preparing to go back to work. After being off for a whole year, this time next week I will have returned to the ranks of normal working people. It is hard to believe that it’s been a whole year since I finished work to have surgery to remove my recurrent ovarian tumour, and even harder to believe that yet another year of my life has been so easily swallowed up by hospitals and cancer. While I was having chemotherapy time seemed to go really slowly, and yet looking back the last year as a whole has slipped away with no clear definining moments other than illness really. It sounds pretty depressing when you write it down and put it like that, but I don’t feel depressed about it, just determined to put it all behind me as quickly as possible.

Of course, being able to put the last few years behind me is really going to be dependent on what happens with my repeat MRI scan and subsequent appointment with my oncologist. Unbelievably my scan date has come through for the same day that I’m going back to work, but luckily for late in the afternoon so it doesn’t affect anything. So, on Wed 25th June I will be both returning to some normality by going back to work, and heading off to the hospital for an MRI scan that could potentially show I’ve still got some nasty cancer lurking on my bowel. It’s pretty hard to make things seem normal when that’s going on!

I did get a good phone call from the hospital the other day though: I was due to be seeing my oncologist on 11th July, but he is now going to be away so my appointment has been brought forward to 4th July at a different hospital. A whole week less to wait is great - a week less of being in limbo! I have to admit the last couple of months of waiting have been pretty torturous: not wanting to convince myself it’s going to be bad news, but also not daring to trust it’s going to be good. Just thinking about walking into that appointment on 4th July makes my stomach flip and my pulse start to race, but whatever the outcome is there’s absolutely nothing I can do to influence it. The cancer is either lurking inside of me or it isn’t, I can’t stop or change it either way.

Going back to work next week should help to distract me from thinking about it too much. I’m planning to go back to work on a phased return, so I’ll start by working a couple of mornings a week, and then build up from there until I’m back working full-time. When I went back to work after my first course of chemotherapy it took me 6 months until I was capably managing 5 mornings a week, so I’m not expecting to be back doing full working week anytime soon! The difficult thing at the moment is: a) not knowing how tired going back to work is going to make me, and therefore how much I’ll be capable of working; and b) not knowing whether I’m going to have to go off for more treatment almost as soon as I do go back. If my oncologist tells me when I see him that the MRI scan has definitely showed up something, then I’m going to end up going off for surgery not too long afterwards. It makes it quite hard to plan a return to work with that possibility looming over me. Still, I’ve only got 2 more weeks of waiting until I know one way or the other. Until then I’m going to head back to work next week and try to enjoy having a semblance of normality in my life, for the time being at least.

Em

Post Chemo Hair Loss (and Regrowth)

noreply@blogger.com (Em) — Mon, 02 Jun 2008 11:57:00 +0000

Number of months since finishing chemo: 5
Amount of hair growing back: enough to need it cut
Amount of hair falling out: enough to wonder what on earth is going on?!

It's been a while since I've written, mainly because I've been spending my time hanging around in this ever-continuing limbo and have no real developments to talk of. However, about a week ago something rather unexpected started to occur, and I thought that with no warning having been given to me about it by the hospital, it was well worth letting everyone know about this very delayed effect from the chemo:

As you all know I had the chemo and in the process lost all my hair, eyebrows, eyelashes etc. Then within 3 months of finishing the treatment they had grown back and I already had quite a reasonable covering of hair. Well, it's now 5 months since I finished chemo and my eyebrows and eyelashes are falling out all over again! At first when a few of each fell out I hoped it was just some freaky coincidence and that would be the end of it. However it's now a week later, and they are both still coming out in large numbers. No-one at the hospital ever warned me that this could happen, so I've been pretty surprised to say the least! Fortunately (at the moment anyway) it doesn't seem to be affecting my hair, which is still tightly fixed in - I have even pulled at it to double check, which was a nervous moment because for all I knew a big clump could have come away in my hands!

So, having had no indication from the hospital that the chemo could cause this reaction months after finishing treatment, I turned to the internet to see if anyone else out there has experienced a similar thing. And yes, it turns out that this can be a side-effect, and that for several years after chemotherapy your eyelashes and eyebrows can continue to fall out cyclically. I couldn't believe it! I had absolutely no idea that could happen, or that the chemo nurses and doctors could have failed to warn me and prepare me for it possible happening. I knew that the chemo could damage your hair follicles, which is why your hair can grow back a different colour and texture to how it was before you had chemo (for many their hair grows back curly, and although mine is pretty much still straight it definitely does have slightly more of a wave to it), but I just never translated this into it affecting your eyebrows and eyelashes too. Of course when you think about it logically it seems obvious that it could, but sometimes unless someone sits you down and tells you these things they just don't occur to you. I really never imagined having lost my eyebrows and eyelashes once from the chemo, that when it was over it could still keep happening. Even more scarily it seems from everything I have read that it can keep happening for several years, so I could be in a perpetual cycle of having my eyebrows and eyelashes grow and fall out again for quite a while to come! Let this be a warning for anyone who has treatment, or knows someone who is - eyelashes and eyebrows may not be as permanent as you expect when they grow back through after finishing chemotherapy!

The only good thing at the moment is that despite it feeling like so many eyelashes and eyebrow hairs have fallen out there can't be any left, in actual fact they just look a lot thinner, and to anyone who didn't know it would probably just look like I've decided to have really thin eyebrows. I'm actually not sure what is worse though, people knowing I've had chemo because my eyebrows have half thinned out, or them thinking I've chosen to pluck my eyebrows to within an inch of their lives because I think it looks good?! With my eyelashes I can already see new growth coming through, so I don't think it's going to be very noticeable to anyone that they are falling out, unless huge clumps start disappearing. However, I'm prepared now that anything new that grows through may well be falling out again in just a few months time...

Bizarrely, in complete contrast, my hair has now grown back sufficiently enough that I actually had to have it cut last Friday! It was my first haircut in almost a year, and it felt very strange to be walking into a hairdressers again. It also felt great, like another step towards getting back to doing normal things. I haven't exactly got long flowing locks yet, but it was starting to get a bit unruly around my ears and neck, so I got it neatened up a bit and thinned out slightly through the top. My hair has grown back very similarly to how it was before I had the chemo, except that strangely it seems to be thicker over the top. I don't know whether or not that's just because it's still so short, but my hairdresser was telling me another client of hers has had chemo, and her hair came back thicker on top too. Maybe it's another hair follicle anomaly that they don't warn you about?!

Em

The Waiting Game

noreply@blogger.com (Em) — Mon, 28 Apr 2008 13:33:00 +0000

Outcome of the latest hospital appointment: as positive as it could be
Movement towards finding out whether or not the cancer has come back: barely perceptible

Finally on Friday I had the long awaited appointment with my oncologist to talk further about whether the spots on my bowel that they found on the MRI scan 2 months ago are the cancer returning and spreading or not. Since finding out I wasn’t going to have a repeat scan before the appointment I hadn’t been so worried about going to it, just more keen to get it out of the way so that I could have a firmer plan as to what’s going to happen next. And thankfully that was exactly what I got.

Despite not having a repeat MRI scan before the appointment, I did have blood tests and so I at least got the results of those to give me some small indication of what’s going on. The blood tests were to measure my CA125 levels (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) to check and see whether or not they’ve started to rise since I finished chemotherapy nearly 4 months ago. If they’d gone up then it would’ve signalled that in all likelihood the spots on my bowel are indeed cancer. Fortunately the reverse actually happened and my levels have dropped! I hadn’t even considered them dropping as a possibility because they’ve been constantly at the same level since last September, just after I started chemotherapy. So, I imagined that I would find out that they’d either not changed, or that they’d started to rise. I couldn’t believe my ears when my oncologist said they’d fallen! Admittedly not by that much, but as any ovarian cancer patient will tell you, even a small drop is hugely welcome!

Although it was a fantastic outcome, it unfortunately still doesn’t hold a whole lot of meaning. In the appointment I sat with my oncologist and gynae-oncology nurse and went back through all my case history, which seeing as I’ve been ill since September 2005 took quite a while! What came out of it was that when the cancer returned last year, straight after finishing my first course of chemotherapy, it took until about 6 months later for my CA125 levels to start rising. So, what that basically means is that in order to be completely sure that the spots on my bowel either are or aren’t cancerous, then I need to wait until 6 months after finishing my chemo until a repeat MRI scan and blood tests can provide a definitive answer, which takes me to June.

After establishing this my oncologist laid out the plan of what he wants to do next: I will have my repeat MRI scan and blood tests in June, and then see him on 11th July to discuss the results. If the MRI scan shows that the spots on my bowel haven’t changed, either in number or in size, and my CA125 levels haven’t increased from their current level, then they will rule the spots out as benign and I can move into having normal regular check-ups roughly every 3 months, and we can also start to think about having a family (there is a big smile across my face to think about that possibility!) However, if the scan shows that the spots have increased in number, or changed in size, and/or my CA125 levels have gone up, then that’ll pretty much be a certain indication that it is the cancer. If that happens then they will either decide on the treatment immediately, or else do a laparoscopy first to have a closer look, and then take things from there depending on how the spots look on closer examination.

The last senario obviously doesn’t bear thinking about too much, but at least now I have a firm plan of action for what will happen next in either case, and that makes me feel a lot better. Like I said in my last entry, it is always so much easier to have a plan and to know what is coming next than to be in some awful limbo position. Mind you, I think sitting in the waiting room before going into that appointment on 11th July is going to be one of the hardest waits I’ll have ever had since this all started back in 2005. It feels like so much is at stake this time: my fertility and the ability to have a my own family, and the chances of them being able to continually keep the cancer away. So, it’s not over-dramatic to say that the outcome of that appointment could literally change the direction of my life. And I thought this appointment seemed to take forever to come around - the last 2 months of waiting are going to have been a breeze compared to the next 2!

Em

The Speed of Change

noreply@blogger.com (Em) — Wed, 02 Apr 2008 14:40:00 +0000

What it takes to change the direction of your life: just one phone call

2 days ago I wrote an entry about my fears over the MRI scan I was due to have at the end of the month, and about what impact the potential results could have on my life. But how quickly things can change! Yesterday, I had a phone call from the hospital and was told that they’re not going to scan me before my appointment with my oncologist on 25th April after all. Instead I just have to repeat my CA125 blood test (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) a week before the appointment to check that my levels are still within the nomal range, as they have been for the last 6 months. Then when I see my oncologist I’ll find out those results, and discuss repeating the scan with him. So it’s not exactly going to produce the grand resolution I was hoping for!

It’s all just a complete change to what I thought was going to happen. Instead of going into the appointment in 4 weeks time to find out one way or another whether these illusive spots on my bowel are cancer or not, I’m now just going to be to discussing it still further. I don’t mind that in some ways, I mean I understand that even if it is cancer then waiting 2 months to re-scan wouldn’t really be enough time for it show much change, so repeating it so soon might not be very helpful in providing an answer. I just wish that I’d known that from the start because then I wouldn’t have spent the last 5 weeks worrying about it! I feel slightly more relaxed now I know I’m not going into the appointment with my oncologist to potentially hear something awful, but at the same time I now have the prospect of being in this limbo situation for even longer.

It is definitely one of the most difficult aspects of being ill, and one of the hardest to try to describe, just waiting. The whole time you know what you’re facing, even if it’s something really hard like having to have chemotherapy, then you can focus on it and mentally prepare yourself for it. When you don’t know what’s coming though you are in a kind of no man’s land - I don’t want to assume it’s going to be the worst case senario because if it isn’t then I’ve stressed myself out and wasted 2 months worrying over nothing. However, if I believe it’s all going to be fine I could be setting myself up to fall even harder if it turns out not to be. So instead I have to try and walk the fine line between the two: accepting that it could be bad news but not allowing myself to be so preoccupied with the idea that I stop living my life properly in the meantime. To be having to spend 2 months in this limbo was bad enough, but now it seems it’s going to go on even longer.

So, with just one phone call what I have been trying to prepare myself for over the last 5 weeks has been completely turned on its head. It seems there are no answers up ahead for me after all, just a lot more waiting.

Em

Hair Regrowth

noreply@blogger.com (Em) — Mon, 31 Mar 2008 16:16:00 +0000

Number of weeks until I find out whether the cancer is back: 4
Fear levels about that appointment: high
Positives in the meantime: more and more hair growing back everyday!

It’s been about a month since I last wrote, and I have spent the majority of that time pretty much unable to get the thought that the cancer may have come back out of my head. The days seem to be crawling by at an excruciatingly slow pace while I wait for the date of my second scan and the review appointment following it to come around. I’m going back to see my oncologist on 25th April, and I am really not looking forward to having to step through that door and hear what he has to say. Of course if it’s good news then all this worry will have been in vain, and I just have my fingers tightly crossed that will be the case.

It’s not so much the worry about whether or not the spots on my bowel are cancer in some ways, more what course of action they will want to take if they are. From the moment I was diagnosed with ovarian cancer my main preoccupation has always been retaining my fertility. I know that might sound crazy, I mean most people would think being cancer-free and healthy would be the main concern, but I so desperately want children that the possiblity it might never happen has always seemed worse somehow. Fortunately, so far all the surgery I have had has been relatively conservative, and I have got away with only losing one of my ovaries. But now, with the possibility that the cancer has not only not been killed off by the chemo but has also spread, then I wonder whether the chance of having a baby is really fading into the distance. Every time the cancer has come back, and with every treatment I have the worry is always there: is this going to be the time I lose my fertility? So far I’ve managed to get through 3 pretty major operations and 2 courses of chemotherapy without losing it, but maybe now is the time my luck will finally start to run out. If the cancer has come back, and spread, then I can just imagine walking into that review appointment and hearing them say the dreaded words ‘full surgery’, which involves a hysterectomy plus a few other bits for good measure. I think I need to go back to crossing my fingers…

Anyway, seeing as all of that is still weeks away I thought it was time I wrote about something else that has been happening since my chemo finished: my hair is growing back! Oh yes, I am now sporting a full set of eyelashes, eyebrows, and a reasonable covering of hair. Not bad considering it’s less than 3 months since I had my final chemo treatment.

In fact my hair started growing back about 5-6 weeks after I finished chemo. The first things to come back through were my eyebrows and eyelashes, which quite surprised me because they were the last things to fall out, so I thought they might take the longest to come back. While I was having treatment the thought of my eyelashes growing back always puzzled me a bit - would it itch or be scratchy, would it look ridiculous to have really short eyelashes while they were coming through, would they come back patchy? None of those things happened though. I couldn’t even feel them come through, and once they started growing they came through really quickly, so the worry about having to walk around with stumpy lashes never materialised. Now they are already back to the length they were before they fell out, and I’ve even tried out mascara on them which was a very strange experience after not having worn eye makeup for so long!

The same thing happened with my eyebrows in that thay didn’t itch when they started growing through. Unlike my eyelashes though they did go through a strange phase where they were more stubble than actual hairs. Fortunately I had some hats that came down quite low, so I just wore those for the week or so that it took for them to grow longer and look a bit more normal!

In contrast to both my eyebrows and eyelashes my hair seems to be growing back much more slowly, although even that has come back through much quicker than I thought it would. Again it hasn’t been patchy either, or itchy. In fact it has been really soft and lovely, and felt so nice and soft when it first started coming through that I frequently found myself sitting on the sofa, watching tv and absentmindedly stroking it! In the last couple of weeks though it has got a bit longer and thicker, and isn’t quite so strokable. It’s actually got to the point now where it’s long enough to start looking messy when I wake up in the morning, which is a downside to having hair that I’d completely forgotten about! I didn’t realise how used I got to just being able to roll out of bed, sling on a hat and be done. Now I actually have to make a slight effort if I leave the house!

Along with that downside to my hair growing back is another very annoying one - the need to have to shave my legs again. I spent a blissful 6 months waking up every morning with smooth legs, and now it’s back to using a razor again! Mind you, I’m certainly not going to moan about it - it’s just so nice to be getting my hair back. It feels like a visible sign that the nasty chemotherapy drugs are working their way out of my system, and I’m getting healthier again. Now I just have to keep my fingers crossed the MRI scan shows the same thing…

Em