Chemo no 6

It’s all over now. My last chemo, thankfully, was a couple of weeks ago. It’s probably not the final one ever but it’s the last one for a while. Maybe for months. Hopefully for years. I’m so happy to be at the end of this current course of treatment. I’ve now had 35 chemo cocktails in total, I think, most of them over the last two years. To not have to face the prospect of that evil stuff, like that above, dripping into my veins is wonderful.

I hope the break is long enough to get some hair. It’s still a shock to see my bald head. I really miss not being able to tie it back. Yes I could do that with some of my wigs but it’s not the same. Anyway I’m not really into wigs at the moment. Wearing a wig takes up precious energy. Instead most days I wear a soft hat. It’s much more comfortable and doesn’t seem out of place at this time of year.

But to celebrate chemo no 6 I wore my favourite wig to hospital. It’s the one you see me wear when I’m occasionally on television. I now have an impressive collection of them however my work wig is the one that I love wearing the most. Despite this it still has no name!

I always like to try and look smart when I go for treatment or consultations. It gives me back a tiny portion of control, knowing that I’m not too ill to wear make-up and a dress. If I look well, I feel better. I feel worse when I don’t make an effort. Cancer forces you to give up so much of your identity that you have to cling onto what you can.

Chemo 6 was totally unremarkable. I saw my consultant, The Professor. It was the best kind of appointment as there were no test results to be told about. We ran through all the side effects of the past few weeks but there was nothing alarmingly awful. Just standard awful.

For this treatment, mum and my aunt Rose came along. To keep them entertained I sent them out on missions. First to the pharmacy, now thats always it’s an adventure which tends to take ages – finding the place and then waiting in the inevitably long queue. After picking up my prescription I asked them to go in search of a jacket potato with melted cheese. They were successful on both counts.

I then slept for a few hours. Probably the most interesting thing was eating a baked potato in bed in the afternoon. It was the first time I’d had eaten something hot while having chemo. The day really was that dull.

The nurses stayed late to ensure that my treatment got finished. I ended up being the last patient to leave the ward. Parts of it were already in darkness and the cleaner had started his evenings work. As I walked out my spirits lifted. I had a dizzy, drunk, fuzzy feeling. The potent cocktail of super strength drugs and steroids was acting like the rocket fuel, giving me the boost I needed to get home.

I felt so wired and that we started our journey by bus. It took us through streets that have become so familiar to me. Past the school where I used to play netball matches for the BBC team and then along a road to the sports centre where we used to train. The outdoor court we used was next to a row of football pitches. It had a concrete canopy as it was just below a busy fly-over. With such a stark, urban setting, it always felt like the set for a trainer advert.

The bus stopped near the training ground and a sporty looking woman got on. She was dressed in the kind of kit that I used to wear for netball. As we travelled further away from the hospital I smiled to myself. I realised that this was a tantalising glimpse of what my life after chemo could be like.

Super special tights

No matter how hot the weather you’re now going to find me wearing thick black tights. Even sat outside in the blazing bank holiday sun at a country show.

These are no ordinary tights. They’re very special. They’re going to make me feel a lot less exhausted. I’ve recently been told that I have lymphedema and these tights will help ease the symptoms. This condition makes your legs ache and – surprise, surprise – it also causes severe tiredness.

Ever since my last lot of chemo my feet and ankles have been very swollen. It got to the point where most of my shoes didn’t fit. I thought it was just water retention, a side effect of the killer chemicals.

But it turns I have lymphedema. It’s caused by the massive operation I had almost a year and a half ago. At least one of my lymph nodes was removed. It may have been more, I can’t remember. Your network of lymph nodes act as a waste disposal system. They help to transport toxic fluid out of the body. If the stuff isn’t properly pumped through lymphatic system then it builds up and leads to swelling.

After the surgery I was told that my lymphatic system may not work normally, but what with all the nightmare of that time, I completely forgot all about it.

That was until The Professor reminded me and diagnosed the lymphedema. By that point it wasn’t just my feet and ankles but also my legs and hands were swollen.

Since then I’ve been having medical massages which have really helped although afterwards I feel totally wiped out. It didn’t take long for it to work its magic. I also need to do daily exercises. I’ve watched as the swelling has gone down.

Now I can see my ankles again and I can’t help admiring them. Lymphedema is something which you can treat but never cure. It means that I will have to keep on wearing the special black tights. For ever. So I’m really looking forward to winter!

Back for good

These are the words I never ever wanted to write again. I have cancer AGAIN.

When I first started this blog last March I wrote something very similar. Back then there was hope. I went on to have so much horrendous treatment. I really thought that I’d killed the cancer. Now it turns out that the cancer will kill me.

This is the third time I’ve been diagnosed with the disease. I have advanced cancer, the kind you can never get rid of. All I can now is try to destroy each tumour every time I get one. I’m not terminally ill but I will die a lot sooner than I ever imagined.

The crazy thing is that I feel so well and yet I might be dead by the summer.

The worst case scenario is that I have six months to live. So little time. I’ve been told that it’s a good idea to ‘get my affairs in order’. That’s such a hateful phrase. I’ve started to write my will and think about my funeral. You may be finding this hard to read, I’m finding it almost impossible to comprehend that this is actually happening. It’s unbelievable. This is the most difficult thing I’ve ever had to deal with.

Can it really be months?? I’m an optimistic person and I just don’t think so. I reckon it’s better to believe that I have ages left to live and be proved wrong, than think I don’t have long and be proved right.

Even so, I have to be realistic. I probably only have a few years left to live. Most likely I can expect five years. Maybe ten or more if I’m very lucky.

As you can imagine I’m utterly devastated. I feel upset, angry, emotional, sad…..it’s just so unfair. I cry so often especially when I break the news to someone. It’s all so traumatic. At times it seems like my head is going to explode as I have so many thoughts swirling around. Right now, the world seems pretty meaningless and irrelevant. Nothing really matters.

It was all so different a few weeks ago. I celebrated my D Day. It was 11 years since the first time I was diagnosed. A big happy cancer-versary to me. To be honest, I didn’t really celebrate too much as the next day I had a check-up with my consultant, The Professor. It was a scheduled appointment, three months after my last one.

“Any symptoms, any pain?” The Professor asked as I sat down in the bare white room.

“Well, some. A little pain near my scars from the operations,” I casually replied not sure whether it was serious enough to mention it.

“Right, you need a scan straight away.” He didn’t need to tell me anything else. The way he looked at me said it all.

And that was it. The moment my life changed forever.

It was at that very second I realised the stupid cancer had returned. I desperately wanted to take my words back. I tried to persuade The Professor that the pain wasn’t really that bad. I’d only had it occasionally at night for a couple of weeks.

“No matter what you say, you need a scan, you won’t convince me otherwise,” the consultant told me firmly.

Of course I had that scan. As I waited for the results, I was overwhelmed by worry. I’ve never been more frightened.

A few days later it was Christmas Eve and I was back at the hospital for the results. The nursing sister brought round a plate of homemade mince pies but it just made the grim atmosphere seem even worse. Only the urgent cases were being seen. Why else have an appointment on this day of the year?

Just as I feared the cancer had come back. Or maybe it never really went away. The tumour is tiny. Just 9mm. It’s so small, I could barely see it when I was shown the scan. Precisely 11 years and 1 day after being told I first had cancer, I have it again in exactly the same spot.

What I felt was likely to have been the tumour growing inside me. With ovarian cancer you normally don’t get any obvious symptoms. That’s why most women die from the disease. It’s incredible that for the third time in a row, my body had told me about a tumour.

This shocking news is still just sinking in. I’ve had a few weeks to start to come to terms with it but it doesn’t seem real. Next Tuesday though the reality will hit me. I start another round of chemotherapy.

My hair will fall out; I’ll get sick and be so incredibly tired. But my time is limited. I can’t afford to put on my life on hold any longer. I want to carry on as normal as much as I can. I’m still going to work, and plan to drink the odd cheeky vodka and flirt with unsuitable men. Maybe not all at the same time!

When I had cancer the first time I came up with my List for Living. It was a five year plan of things I always wanted to do. Thanks to the list I became a BBC foreign correspondent and had the most amazing adventure abroad. Now that the cancer is back for good I’m so glad that I followed my dreams.

I’ve been writing a book about my List for Living. I want to get the book published so doing that will be going on my new list. Every day I have more Ideas about what else I want to do before I die. Some people have asked me if there is anything they can do. Once I’ve come up with my new list, you could always help me with something on that.

I want to have fun and enjoy my last few months/years. Especially as chemo will now be a part of my life forever. It will keep me alive. The aim is to shrink the tumour and all its friends that follow. I will have an evil chemo cocktail every week for 18 weeks in the very same hospital as before.

It’s a case of here we go again. It’s so frustrating after all I’ve been through. With this stage of cancer my treatment options are limited. There are only a few types of drugs that can help me. This is terrible, terrible news but it could be worse. I could be terminally ill.

I know how I’m probably going to die and roughly when it’ll happen. It’s weird having a likely expiration date. I really hope my Best Before is at least 2023. But you know it’s not the years in your life that matter; it’s the life in your years.

Once I have my affairs in order I’m not going to dwell on the dying, I will soon have a new list and a whole lot more living to do.

Soldiering on

I thought I had it all sorted.

I have the chemo; James Bond kills the remaining cancer cells. I’m slowly poisoned as I imagine my own personal army of special agents blasting away at the enemy inside me. I try to carry on as much as normal while I visualise the 007s carrying out this covert operation for me.

But it turns out that I’m at war too.

Following my scary setback last week I had to see The Professor. Despite being totally exhausted, it wasn’t quite as awful as I felt during my emergency stay in hospital. With the infection launching a full on assault, my immune system dropped so low it was almost non-existent. Even he had to admit that it was impressively bad.

As I chatted to my consultant in a small clinical looking room I could hardly think straight. I was so shattered. It was such an effort just to sit on the plastic chair. Really I wanted to have a nice lie down on the medical couch that I could see behind a flimsy curtain. It was so inviting.

I had the appointment with The Professor at my usual hospital yesterday as I’m due to have chemo today. I had to convince him that I was ready to take the battering that you get from the drip of dangerous drugs.

Luckily the blood tests confimed that I was well enough. I’m so glad that it’ll continue as planned even though I still feel shockingly ill.

This will be my fifth session of chemo. After today, I’ll have just one more to go before it’s all over. The Professor reassured me that what I’m going is awful but nothing out of the ordinary. I’m not sure why but having someone else acknowledge just how horrendous things are somehow makes you feel a bit better. It was a welcome boost.

It’s not that I’ve been feeling down. It’s just that I have little energy to do much more than focus on finishing my cancer treatment.

It’s incredibly traumatic, it’s as if I’m in a warzone, my consultant explained to me. For six months now I’ve been under attack both physically and mentally. There’s the pain, the fatigue and the fear. You’re not sure if you’ll make it out alive. The last time I was anywhere near a warzone as a BBC foreign correspondent it was pretty stressful and I was only there for a week or so.

It makes sense – this is a fight for my very survival. While I think of myself as battling this killer disease, I’ve never seen myself as an actual soldier on the frontline. I’ve left that part to my gun-toting troop of James Bonds.

To be honest the fog of tiredness has meant I’ve considered myself to be more like a zombie but I must change that.

It’s much more positive to imagine myself as a solider and a successful one at that. The Professor took great delight in telling me that according to the very latest test results I’m still clear of cancer. So I’m already winning the war!

Can’t breathe easy yet

Hospital gown and tights – a fetching combination

 

Reluctantly I’ve been back in a hospital gown again. I sat in a cold examination room with its blue blinds firmly closed and waited for yet more tests.

As if it’s not bad enough dealing with cancer, there’s now something else which could be extremely serious.

I’ve mentioned my breathlessness before. I end up gasping after just a tiny amount of activity. Doing something like walking and talking is almost impossible.

After my operation I had a bit of a problem with this. I thought it was because a lump of cancer had to be removed from my diaphragm and that I was short of breath as it healed.

Since starting chemo it’s got a whole lot worse. I find it hard to breathe after just walking a few metres. According to The Professor this probably isn’t connected with the chemo. So I’m having a series of tests.

I was wired up in the examination room. As several electrodes were stuck on my skin I looked away and focused on the walls which were painted baby blue. The last time this happened I’d stopped breathing altogether. Luckily I woke up before they had to be used.

A young doctor in a sky blue medical gown prodded me with something that resembled a small plastic bottle of deodorant. The end was covered in cold clear gel. She pushed it hard into my chest. With her other hand she tapped a key board to take images of my heart.

The computer beeped as pictures of my very vital organ were captured from all possible angles. On the monitor my heart pumped away in black and white glory.

After being so focused on having something deadly in my body, it’s a fantastic feeling to watch something that looks so healthy inside me.

The doctor turned on a loud speaker and recorded the sound of my heart beating. To my ears it was loud and strong, almost like a parade of marching soldiers. It made me think about my James Bond army. They’ve certainly been doing a brilliant job. I wonder what mission I’ll send them on next if there’s a problem with my heart. Or lungs. Or something else.

Hopefully it won’t come to that.

I could be breathless all the time as I’m now so unfit. That’s a really scary thought. But at least the cure will just involve plenty of exercise rather than anything which involves me wearing another of these hospital gowns.

A more senior doctor came into the blue room to check the images. Wow he looked like someone out of ER. Think George Clooney but younger and Australian.

Anyway back to the small screen. George was very happy. It was just his initial impression but it seems that everything appears very healthy. After my cancer nightmare it’s lovely to hear positive results. I got him to repeat the news. He reassured me that I had a good heart.

Diary of a chemo girl

I’m still so deliciously happy at properly getting rid of the cancer.

Yesterday I had more chemo as it was back to the business of keeping it beaten. Today I’m feeling oh so incredibly sick. I still have a few more months of treatment to go but at least I’m now officially half way through!

To celebrate here’s a blow by blow account of what I go through every three weeks. There’s much more to it than having a bunch of nasty drugs…

Tuesday 19th June – Preparing for chemo

9am: Wash my hair in tepid water so that it’s ready for the frozen hat on chemo day. Depressingly loads of it comes out.

10am: Start drinking.

Sadly it’s only non-alcoholic. I need to make sure I’m not dehydrated. Apparently it’s good to drink milk. What’s better than milk? Chocolate milk.

11am: Hypnotherapy at hospital. Once again I go to my imaginary tropical island and somehow it appears to work. The bad but bearable leg pain that I constantly get seems to go.

Lunchtime: Rest at Maggie’s Centre. It’s a beautifully modern building in the grounds of the hospital. Run by a charity, it’s for people dealing with cancer. I curl up on the big sofa in the living room.

2pm: Get a taxi to a different hospital in another part of London. We drive past BBC TV centre. I really want to stop the cab and go to work. I could be starting a late shift rather than another round of medical appointments.

2.30pm: At the chemo unit I get given a pink laminated card and wait for blood tests. It’s like a speedy boarding pass and means I can jump the queue. The tests will determine if I’m well enough for the horrible treatment.

The man taking the blood tells me I have chemo veins. They’ve gone into hiding but he manages to hit one first time. I accidentally watch as he wiggles the needle and then plunges it deeper into my arm to make the blood pour out. It’s pretty gruesome but I don’t actually feel anything.

3pm: Appointment with my lovely consultant, the Professor. As I wrote in my last post, he gives me all sorts of brilliant news, a big hug and sends me on my way.

4pm: My friend, Chantal the flower girl gives me a lift home in her big flower van.

On the way to my flat she has to make an emergency delivery.

5pm: Ring the hospital. Happily the results of the blood tests are good so chemo will go ahead. Rest on my own sofa.

10pm: Start the steroids. I have to take ten of these tiny tablets. They stop me from being sick but they make me feel wired.

Midnight: Still awake. The steroids also make me eat peanut butter on toast and ice cream.

Wednesday 20^th June – Chemo day

7am: More steroids. Another ten tablets and I’m wide awake despite only having about three hours sleep

10am: Back at the hospital, this is where I have to sit. All day. I share the room with five others.

10.30am: I cover my hair in conditioner and the chilly hat goes on. My hair has to freeze before the chemo can begins. It hurts like hell.

A nurse puts a needle into a vein on my left hand. I’m attached to a drip that will deliver the anti-cancer drugs. First though I’m given even more steroids and other clear liquids to stop nausea, pain and any allergic reactions.

These make my face feel funny, like I’ve drunk too much vodka. As the dizzying drugs race around my body, I start to get a puffy face.

11.20am: The chemo finally starts. It’s so toxic that my nurse use gloves to handle the clear plastic pouches. I have two types of chemo, this first one takes a few hours to slip into my veins.

I have to wear two wrist bands. White to say who I am. Red to make it clear that I have a drug allergy. That’ll be the drug that almost killed me after surgery.

11.30am: Listen to my chemo mix tape and attempt to sleep in my chair under a white hospital blanket. I feel so tired and cold.

2pm: A friend comes over for a chemo coffee. She brings a big bag of sweets. I’ve eaten so much cake, chocolate and sweets since I started this treatment. Opps!

2.30pm: I get the second type of chemo; this is the most dangerous one. It makes your hair fall out among other awful things.

3pm: Sleep. As I drift off I try to dream of Daniel Craig and his army of James Bond cancer killers. But instead I keep thinking of the fantastic things I’m going to do when all this is over.

4pm: The last drugs pouch is empty and all the evil of chemo cocktail is now in my body. I’m unhooked from the drip. My hair is frozen to the cold cap so it has to stay on for a bit to allow it to warm up.

4.30pm: I have to go for a chest x-ray. Walking just a few metres makes me breathless so The Professor wants to make sure it’s nothing serious.

5pm: The flower girl picks me up and I start the long journey back to the house where I grew up. My hair is still defrosting. You don’t have to look too hard to see one of my bald patches.

I don’t feel too bad considering but the side effects of the chemo are like a time bomb and you never know when they’ll go off.

8.30pm: Still feeling kinda normal as I arrive at my parents’ home in the countryside.

I know that I may not lose my hair.

But I don’t quite believe it so again I’ve packed Barbarella just in case.

Beaten cancer, definitely

It has to be the best day I’ve had since this whole horrendous cancer nightmare began.

Yesterday was pretty perfect. I should have written about it last night but fatigue and a certain England football match, not necessarily in that order, got the better of me.

I have my third session of chemo today which will take me to the halfway point of my treatment so I saw my consultant yesterday afternoon. Let’s call him The Professor. Now he isn’t any ordinary consultant. He’s very senior and not only that he’s also one of the leading experts in the country on my kind of cancer. To me basically he’s God.

And he was able to tell me that I really am going to live!

We already knew that every bit of the cancer which could be seen by the surgeon was removed from my body. The pea and all his uninvited friends are long gone. After starting chemo a few weeks ago I had a very important blood test. It was to establish if any cancer was still lurking inside my body. Or more worryingly if it had come back since the big operation.

The Professor beamed at me as he delivered the incredibly wonderful news. The killer disease has been successfully treated!!! This is offically the second time that I’ve beaten cancer. You could say it’s Me 2 – 0 Cancer. I now need to think about changing the name of this blog.

For anyone interested, my CA 125 is now 10, well within the normal range and way down compared to when I was diagnosed.

A wave of relief and joy and surprise swept over me. I’ve been totally focused on the chemo and I’d forgotten that I was due the result of this test. It was an amazing moment. This confirms that I definitely no longer have cancer.

After some very happy swearing I opened my notebook and started to go through a list of questions I wanted to ask about the chemo. It’s the kind of pad that I’d normally use for work. Now I use it for this job.

We spent ages taking about the terrible side effects – mostly the pain and the tiredness. There’s not a lot that can be done about the exhaustion apart from resting.

But The Professor who speaks with a slight Scottish accent did have some more good news. This time I don’t need to have the dreaded post-chemo injection to boost my immune system as it’s still quite strong The jab gives me the worst pain. Ever. Without it I’ll be able to cope much better with all the other stuff.

There was one last question.

“What about my hair?” I asked The Professor. “Shouldn’t it have fallen out by now?”

“I was going to say the same thing. How come you still have so much?” He replied with a smile.

I ran my fingers over my scalp and a few hairs came out but not many. He thinks that I could be one of the lucky few to not lose all my hair thanks to the freezing cold hat that I wear during treatment. If it doesn’t all disappear by next week, then I really might not go bald.

On the way out The Professor gave me a massive hug. It was a great day at the office for both of us.