Diary of a Cancer Patient

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, and 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

Has The Cancer Already Come Back?

noreply@blogger.com (Em) — Mon, 25 Feb 2008 14:01:00 +0000

Level of surprise at the latest turn of hospital events: 7/10
Level of anxiety over the latest turn of hospital events: 8/10

Well I’m sorry to have to report that after seeing my oncologist on Friday, it seems the worry and nervousness I had about my pelvic MRI scan may turn out to have been well-founded.

The scan itself went fine. It was very much like the one I described in more detail a couple of entries ago, but just scanning my pelvic area this time rather than my head - there was deafening noise, vibration and the slight claustrophobia inevitably comes from lying in a small tunnel for about 30 minutes. That was last Wednesday, and despite saying that it was unlikely I would get the results in the appointment with my oncologist just 2 days later, that’s exactly what happened. Justin and I were sat on Friday afternoon waiting to see him, and for about 15 minutes before I was called in, no other patients were in there, which immediately seemed a bad sign - it means they’re probably talking about you before they call you in, and they wouldn’t do that unless there was something to discuss! So when I was finally called, and I walked in to see both my oncologist and my surgical consultant looking at me with serious expressions on their faces, I knew that things weren’t right.

It turns out that whilst the scan showed that my remaining ovary, womb, and majority of my pelvic area and stomach cavity look good, there are some undiagnosable spots on my bowel, an area that has never been a problem before. Now on the positive side there is a possibility that these spots could simply be endometriosis, which is a common gynaecological condition that many women suffer from. Indeed, it’s something that I already know I have on my womb, and so it’s plausible that it could simply have spread to my bowel. (See the NHS Direct website for a more detailed explanation of what endometriosis is). On the other hand, with my cancer history it’s also possible that it could be the cancer, which is a pretty terrifying thought, particularly as I’ve only just finished chemotherapy.

Because the spots are only 1/2cm in size, then neither the radiographer nor the doctors can tell for certain what they are at the moment. So, they want me to wait for 2 months and then have another MRI scan to see if there has been any change. If there haven’t been any changes after that time then it is more likely that the spots are indeed endometriosis. However, if I go back for a re-scan in 2 months and there has been any sign of growth, then that would be seriously bad news. I’ve also got to have blood tests in a couple of months time 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 whether or not they have gone up from their current (normal) level. If they have then that may be another indicator that the spots are indeed cancer, although because CA125 levels can rise for other non-cancerous gynaecological conditions such as endometriosis, it doesn’t make it a very reliable test in this particular situation.

So, all in all it’s going to be a fairly tense couple of months, and I don’t mind saying that I’m pretty scared about the potential outcome. Having said that though, there is at least the possibility that it could be something relatively straightforward, and I’m really lucky that possibility exists. It’s a hope that I have to hold onto for the next couple of months…

Em

A Testing Week Ahead

noreply@blogger.com (Em) — Tue, 19 Feb 2008 15:05:00 +0000

Number of initial tests left to complete: 2
Feeling at potentially being close to having less hospital appointments in my life: I CAN'T WAIT!!!

After having a blissful hospital-free week last week, I am making up for it by having to go back twice this week. My first appointment is tomorrow for a pelvic MRI scan, which is probably the most daunting for me of all these intial check-ups. This is the one that is to see whether or not there are any signs that the cancer is still lurking in my body. While the MRI itself doesn't bother me - I've had a pelvic MRI before, last year, and of course the head MRI just 2 weeks ago - getting the results will certainly be one of those hold-your-breath moments. Having said that, this should really be the clearest MRI I ever have, because I've had surgery to remove the tumour, plus chemotherapy to kill off any remaining cancer cells, so there shouldn't be anything much still there at all. It's as I get further down the line that the scans will get really scary. Still, I need to get through this one before I start worrying about all the ones to come!

As well as having the pelvic MRI tomorrow, I have got an appointment to see my oncologist on Friday. The results of my MRI won't have been reviewed by then, so I know I won't find those out, but I will be having 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 make sure they are still well within the normal range, as they have been for the last few months. Again, I won't know the results of those in the appointment, but the one good thing is that by about 5pm on Friday I should have had all the initial post-chemo tests. I am hoping that after Friday's appointment I won't have to go back to the hospital for another few months, and that I can get back to having the quarterly check-ups I'd just started having when the cancer recurred last year.

Whilst there is still some uncertainty surrounding the test results and how frequently I'm going to have to go back to the hospital for check-ups in the future, one certain thing right now is that my hair is starting to grow back! I have fledgling eyebrows and eyelashes, as well as pretty much an all-over covering on my head. It's a thin covering, but its definitely there. It was quite strange to see myself with eyebrows again at first, I didn't realise how used I got to seeing myself without them! Now they're coming back so much that it's not going to be long until I need to get my tweezers back out!

My hair re-growth definitely makes it feel like there is some normality finally creeping back into my life, albeit very slowly. Once I get this week out of the way I'm hoping I can start to live a life that I'm in control of, rather than the hospital.

Em

It's Official: My Brain Remains Unpolluted By Cancer!

noreply@blogger.com (Em) — Thu, 07 Feb 2008 14:55:00 +0000

Pace the hospital can move at when it needs to: very fast
Feeling when it does: nervous!

I ended my last entry by talking about how quickly I was being swept from having chemotherapy into the post-chemo routine of check-ups and tests. Well, to prove the speed at which I meant, it is now exactly 1 week on from writing that and I have already been for an MRI scan of my head, and had the results!

Last Wednesday I saw my oncologist and he said he wanted me to have a CT scan of my head, just to check whether there was a sinister reason for the constant dizziness I’ve had since my last chemotherapy treatment. He told me I should get an appointment through for the scan in 2-3 weeks, so I figured I could forget about it for a few weeks and get a very welcome couple of weeks off from the hospital, something I haven’t had for nearly 6 months! However, on Tuesday I got a call from the hospital to say that the doctors had talked, and had decided that I should have an MRI scan instead of a CT, and could I come in for it the following morning. I found it slightly unnerving that they were rushing me in so quickly, but I guess once you’ve had recurrent cancer, and especially when it’s come back so quickly, then you can’t afford to leave anything that seems a bit out of the ordinary to chance.

So, yesterday morning I went in for an MRI scan. Now I know most people have never had an MRI, so I’ll try and explain what it was like so you can get a picture of it: This time around, because I was having a scan of my head, I didn’t have to change into a hospital gown, which was quite a relief seeing as it is a mobile scanner and therefore in a truck parked next to the hospital x-ray department - not exactly the warmest environment in this weather! Anyway, after taking off my coat and hat I was lead into the scanner room and had to lie facing head first into the scanner on a bed. A big block was placed under my legs to raise them, which was pretty uncomfortable. Then, because I was having a scan of my head, a cage was placed over my head and face to keep it fixed in position. Finally, large headphones were placed over my ears and music was played through them to try to help cut out the immense noise of the scanner once it started. When all this was done the bed was slid into the tunnel of the scanner, and I had to lie very still for about 15 minutes while it took cross-sectional images of my head. It’s pretty claustrophobic as you can probably imagine, but they had an angled mirror just above my head that reflected out of the tunnel so I could look up and see out, which helped to give an impression of space. The only problem was that I had to look at it through the bars of the cage over my head, which was only sitting about 2 inches from my face!

Anyway, after 15 minutes of very noisy whirring, mixed in with the sound of Radio 1 in the headphones, I was slid out of the scanner and a needle was inserted into a vein in my arm. A contrast dye was then injected to allow particular areas to be seen more clearly. Once that had been done I was slid back into the scanner for about a further 5 minutes while more images were taken. Finally, after around 20 minutes, it was all over and I was slid out, the cage was taken off and, blissfully, my head was released! Apart from the claustrophobia and having to lie rigidly still an MRI isn’t really too bad. The worst thing about it, and other types of scan too, is that while you’re lying there it’s hard to think of anything else but the reason you’re there, and the implications it could have. I mean, if I didn’t have cancer and there wasn’t a risk that it had spread, then I wouldn’t be having the scan, and so while you’re having it you can’t think of much else but having cancer if that makes sense.

After the scan had been completed I went home, expecting to have to wait until when I see my oncologist in a couple of weeks time to get the results. However late yesterday afternoon my oncology nurse phoned me to say that the doctors had reviewed my case in a meeting that afternoon, and they thought I’d want to know that my MRI scan had showed that everything was normal. What a relief! I was about 98% sure that it was going to be - I mean my cancer was localised when it came back, so for it to have suddenly spread to my brain would’ve been quite a shock, but then you just never know. It’s so great to know that my brain is all healthy and fine, and that the dizziness I’m experiencing is just because my body is so utterly spent after having had chemotherapy on and off for the last 18 months. Now I just have to hope that my abdomen is clear too, and that the pesky cancer never decides to come back again. In the meantime I think I’ve earned a mini celebration, and I’m also going to massively enjoy having a whole week without a single hospital visit next week!

Em

They Think It's All Over - It Is Now!

noreply@blogger.com (Em) — Thu, 31 Jan 2008 16:53:00 +0000

Number of chemo treatments left: 0!!!
Level of surprise at the sudden end to my treatment: high
Level of relief at the sudden end to my treatment: even higher!

I know, I can’t believe it, I’ve managed to finish my chemotherapy with no sign of needles, drugs, anti-sickness tablets or recovery time! How? Well on Friday, just a few hours after I posted my last blog entry, my oncologist phoned to say that considering my low blood cell counts and how ill I still feel after my 5th dose, he didn’t think it was a good idea to push me through any more chemotherapy cycles.

My first reaction to him suggesting that was actually quite negative and anxious, which may sound crazy - I mean why wasn’t I immediately thrilled by the thought not having to have any more chemo - but chemotherapy is given to you as a course of treatment, and so consequently you feel you should complete the whole course in order for it to work. Obviously in reality that’s not at all the case, and within 1/2 hr of the phone conversation I realised how nonsensical that idea was. The actual reality of my situation is that my cell counts are very low and I’m still really dizzy, weak and exhausted from the last dose, so my body would really struggle to cope with another dose. As my oncologist pointed out too, having a ‘stand-alone’ dose of chemo so far apart from all the others would make it less effective, and therefore on balance between how much good it would do, and how ill it would make me, it probably becomes more harmful then helpful. On top of that, my CA125 levels (a protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) are now well within the normal range, and haven’t changed since last September after about my second dose of chemo, so one further treatment would be unlikely to alter it any further. Plus, my oncologist would hardly suggest dropping my final cycle unless he really thought I shouldn’t have it.

Once I’d thought about all those things logically it didn’t take me long to start to feel overwhelming relief at not having to go through the whole process again. Like I said, I still feel so ill from the last one that I had been really worried about how I would physically cope with another dose anyway, and had actually already thought there was probably a good chance I would end up in hospital after it. Amid the sense of relief though there came quite a large anticlimax. I know that may sound ridiculous, but as much as I was dreading the final dose I was mentally prepared to have it, and the suddeness of the decision to cancel it came as quite a shock. I know from my first course of chemotherapy that when you have your final treatment it’s so nice to sit there thinking ‘it’s the last time they’ll ever have to find a vein, the last time I have to sit in one of these chairs’ etc. You get to say goodbye to all the nurses and to thank them, and most of all you get to walk out of the Cancer Centre telling yourself you’ll never have to go back. Psychologically it’s a definite process of detachment, and a means of drawing a line not under the cancer itself, but certainly under the chemotherapy, helping to give you a starting point for moving forwards.

To hear that I wasn’t going to get that came as quite a surprise, and left me not really knowing what to do with myself. Still, I had to wait until my clinic appointment with my oncologist yesterday before it was definitely confirmed. When I saw him though he said as he had over the phone, that he didn’t think I could physically manage another dose. Having just struggled to walk down the corridor of the hospital to the clinic I could hardly disagree with him! One thing that helped to dispel the anticlimax of missing the final dose was not just knowing that I couldn’t physically get through any more, but also that I coincidentally saw a nurse from the Chemo Suite while I was waiting, and got to chat to her and say thank you and goodbye. It helped to draw a line under the chemotherapy in some small way. On top of that, after doing some balance tests because of my dizziness, my oncologist said he wants me to have a head CT, just to be on the safe side and to get me thoroughly checked out. So, without time to pause for breath, I am already being swept along into the post-chemo stages of check-ups and scans. Because of course nothing ever really ends with cancer, it just progresses onto the next stage…

Em

No New-trophils Anywhere In Sight

noreply@blogger.com (Em) — Fri, 25 Jan 2008 12:48:00 +0000

Number of days since last chemo: 28
Number of days until next chemo: 10 (cell counts permitting)
Number of chemo treatments left: still 1
Level of tiredness: sky high

Yep that's right, it's yet another delay! The nurse came out yesterday morning to take my pre-chemo bloods, and I was really hopeful that my neutrophil count would have gone up sufficiently after an extra week. But the Chemo Suite phoned me in the afternoon to say it had actually gone down! It's now 0.9, so that magic 1.5 target seems a long way off. Mind you, I say I was hopeful that it would have gone up, but I haven't felt any better this week so it's probably not that surprising. I did wonder whether it might have only gone up a little bit, but I certainly didn't expect it to fall. It seems those GCSF injections really were a complete waste of time!

Because I still feel really dizzy and weak the added delay is a relief in many ways. It means that by the time I have my final treatment though, I'll have had at least 2 months of delays over the course of the chemo, which is quite a lot really. Having said that, when I first started the chemo I predicted that it would finish in February, and it looks like I'm going to be right! My first course of chemo took 5 & 1/2 months to complete, and this one is on track to be about 6 months, which is what I imagined. Blimey, 6 months - writing it down as a figure really brings it home just how long I've been having chemo for. When I think back to that first session it does seem like a lifetime ago though - it was summer, with warm, light evenings and the trees all still had leaves on them, a bit of a contrast to the grey, miserable day that I can see out of the window now!

By the time I start to get stronger again after the chemo finishes it'll be coming back into summer which will be bizarre, it's like a whole year will have been wiped out. From experience when I had my first course of chemo I know that when it finishes it feels like you've been in some sort of time warp. It makes it quite hard to adjust because, while you feel like you've gone back to where you were before it all started, everyone else's lives have of course moved on. It can make it difficult to try and fit back in with things again, especially when you feel pressure that everyone expects you to be ecstatically happy that you're getting back to normal again, and you just feel out of place in the "normal" world. Because there is no getting away from it, having cancer, especially when you're young and don't really know anyone else your age who has been ill too, does make you feel segregated. The cancer charity Macmillan Cancer Support actually has a great section on 'Life after Cancer' on it's website which explains really well the kind of feelings you can get once your treatment is over. I have to say I didn't have the really depressed, angry emotions that it describes the first time around though, and I certainly hope I won't have them this time either.

Still, to be thinking about life after chemo is jumping the gun slighty considering my final dose is still a way off yet. Right now I need to concentrate on resting lots, and keeping my fingers crossed that my neutrophils and white cells get multiplying over the next 10 days so I don't get any further delays...

Em

More Delays Than Network Rail

noreply@blogger.com (Em) — Fri, 18 Jan 2008 15:41:00 +0000

Number of days since last chemo: 21
Number of days until next chemo: 7 (cell counts permitting)
Number of chemo treatments left: 1

As today was due to be the day of my final treatment I’m sure you can guess what’s happened - I’ve been delayed because of low neutrophil counts again. The Chemo Suite phoned me yesterday afternoon to confirm that my neutrophil count is only 1 (when it should be 1.5), which is the lowest it has ever been. It seems that in spite of a lower dose of Carboplatin, and a course of GCSF injections, those white cells are just refusing to mutiply!

I can’t say I was particularly surprised. It has been a rough couple of weeks since I last wrote. I have been really dizzy and exhausted, and was worried that it was symptomatic of a low red blood count, which would mean having to have a blood transfusion. But, after blood tests at the start of last week, I saw my oncologist last Wednesday and he confirmed that my haemoglobin count was high enough for me not to need one, which was a relief. Instead he prescribed tablets to try to help the dizziness. On Tuesday, after feeling no improvement at all, my gynae-oncology nurse spoke to my oncologist again and he advised that we call out the GP for me to be checked over. So, a very nice doctor came out the next day and prescribed some new tablets, which are yet to do anything, although I’m still holding out a very faint hope it’s just because it’s taking a few days for them to build up in my system before I feel a difference.

Because I’ve been so wobbly on my pins I didn’t go to hospital for my usual pre-chemo blood tests yesterday, a nurse came out to me instead. At the moment I am struggling to do much more than get up and down the stairs, but the chemo nurse who phoned me yesterday about my blood test results warned me to be extra careful about mixing with anyone who might have any bugs or germs because my white cells are so low, so it doesn’t really matter that I’m not capable of going out I suppose!

The fact that my counts are even lower than normal, despite measures to try to boost them, just goes to show how worn out my body is. And I have really felt it this time - there was no way I felt able to get through another dose at the moment, final one or not. It has made me realise too just how long it’s going to take after the chemo has finished for me to start feeling well enough to go out even for a cup of coffee, let alone do anything ‘normal’ like walk around town or go back to work. Still, that is way too far in the future to think about. This next week is all about trying to get lots of sleep and rest, and getting myself ready to go through one final treatment. I really can’t wait to have the luxury of time to get myself better after having the last one, and not be under the usual three week time frame that the chemo regime imposes. And I think from the way I have felt after this dose, getting myself better once the chemo is finished is going to take a very long time.

Em