The Big Fat Baby Conundrum

This is a hard one for me to write about. Pre-cancer me was definitely not ready for babies. I had only just finished university and had only been married for 4 months when we were given the diagnosis. But the "Big C" kinda throws your whole life into disarray and I guess the one good thing is it really brings everything into perspective. After all, in the end it's not money or a career that's going to be holding your hand, it's your family.

Based on the scan results, my doctors wanted me to have radiotherapy and chemo before having surgery. They had hoped this would shrink down the tumour and potentially I could have had less invasive surgery and potentially avoided having a stoma. However, radiotherapy to my pelvis would have put me into menopause and fibrosed my uterus, so even if we managed to freeze some eggs, I would never have been able to carry a pregnancy and the only way of ever having children would be to find a surrogate (a medico-legal grey area in the UK and I don't have a sister) or adoption.

Well, to be told this at 25 is nothing short of devastating. To this day, eight months after diagnosis, brings on the waterworks.

The alternative was to have surgery first, hope that the surgeons were able to reconnect my bowel and then if necessary, have further treatment afterwards. What an impossible decision. I wanted to go for this option as there was a chance after surgery, I would be cured. My husband wanted me to have the radiotherapy and chemotherapy first; he just wanted me to have the best chance of beating this thing, he didn't want to be a widow at 25.

We were in complete turmoil. Luckily, we saw an oncologist who encouraged us to have the surgery first. Then if I needed chemotherapy / radiotherapy, it would be based on results from the pathology lab rather than just images on the screen (the radiologists were never completely convinced the nodes were positive, apparently they argued a lot over it).

I had my surgery on 17th December 2014, the tumour was about 4 cm across in diameter and two lymph nodes in the immediate tissue surrounding that part of the bowel were also positive for cancer cells. However, crucially, there was a clear margin of normal tissue around the tumour and lymph nodes. This meant that although I would need chemotherapy to make sure there were no tiny spread of the cancer elsewhere in my body, I would not need radiotherapy. I will never forget the day my surgeon came rushing into my room to tell me the news. I think he was as pleased as I was. The relief was overwhelming.

Unfortunately, that is not the end of my fertility woes. The issue you see, Oxaliplatin is really only used in bowel cancer and most bowel cancer patients are much older than me and therefore have already had children or completed their families. Because of this, there is very little data on how Oxaliplatin affects female fertility. I have searched high and low on the internet - from scientific journals to bowel cancer forums and thus far, I have only found one woman, I think in Australia who got pregnant naturally after completion of her treatment. My oncologist reckons Oxaliplatin has a moderate to low risk of gonadotoxicity (poisoning my lady bits so I become infertile). Well, the uncertainty is killing me.

Before starting treatment we did go through one cycle of IVF in order to freeze some embryos as a back up. We managed to freeze one embryo. I know one is better than none, but given the low success rates of IVF, I'm not holding much hope if I'm honest.

Unfortunately, I'm also at that age where everyone is either getting married or having babies. Whilst I am delighted for all my friends, all the baby pictures on facebook always makes me cry.

I guess at this stage, the more important thing for me is to focus on getting to the end of chemo and then to get myself fit and well again before even thinking about babies. But it's hard, so incredibly hard. Everytime I have another round of chemo I try to think positively and not think of any potential effects on my fertility.

Ah and here come the waterworks. I'm starting to cry now, so best to log off and think happy thoughts instead!

The Joys of Chemo Part 3

A bit quiet on the blogging front recently - not because I didn't want to, in all honesty it's because I've had nothing to talk about and I didn't want to write lots of posts with essentially the same content. That would just be a little bit boring for everybody involved.

The thing no one told me about going through chemo is how utterly bored I would get. Some days, the only person I speak to all day is my husband. Thank goodness I have Alfie (the dog) otherwise I'd probably be half way to LaLa Land by now. Most of my friends work the normal 9 - 5 (cue Dolly Parton now singing in my head) and Helen the BFF who works shifts and actually could spend time with me mid-week, lives all the way in London.

I really should have used my time off a little more productively and studied for some professional exams - but rather unsurprisingly my motivation is at an all time low. Instead, I've watched the entire back catalogue of Gordon Ramsay's Kitchen Nightmares (UK and USA), as well as all his cooking videos. I also started watching Hell's Kitchen - but the bitchiness and fighting got a bit tedious, although I did manage two entire seasons of that as well. I'm currently working my way through the myriad of beauty tutorials on YouTube.

More worryingly, I seem to have memorised E4's daytime schedule and know exactly when my favourite programmes are on and when to tune in...I think that signals I am well and truly a part of the daytime TV army! At least I haven't resorted to Jeremy Kyle yet...at least not on a regular basis.

Another problem with all this spare time on my hands is all the thinking and ruminating I seem to do. I feel like chemo has drastically changed my appearance, perhaps I'm worrying too much about it because I have nothing else to do. I wouldn't describe myself as vain, but I liked to look after myself and admittedly, I always feel much more confident when I'm well dressed and make up done. Pre-cancer me ate well and went to the gym 3 - 4 times per week as well as walking the dog everyday. Since my operation in December, I have basically eaten nothing but junk food and done nothing but sit on my bum,which has widened considerably. Thanks to modern anti-emetics (anti-sickness medication), I still manage to eat even during the first few days after chemo when I'm feeling the sickest. My sense of taste and the sensation of my tongue is greatly altered in that I can't really taste anything and my tongue is pretty much numb, so all I crave is sugary and salty foods, which definitely doesn't help the waistline!

I've put on roughly 7kg since my operation and I'm now the heaviest I've ever been and I'm quite uncomfortable with that. None of my clothes fit and I don't have the funds to buy new clothes!

Well, onwards and upwards I suppose, cycle 9 is due this week; fingers crossed my bloods are all in order so it goes ahead as planned!!

Chemo: Round 7 of FOLFOX

So my neutrophils came back up, they were a bit borderline at 1.42 (they normally like neutrophils to be at 1.5 before giving chemo). But seeing as I'd already been deferred a week and was free of any signs of infection, my oncologist decided to go ahead with my infusion.

After a lot of soul searching, and quite a lot of tears from my mother, I've decided to carry on with my chemo. I guess the biggest question was the "What if". If I didn't carry on with my chemo and the nasty ended up coming back in a few years, would I look back to now and kick myself for not giving myself the best chance? Probably. Apparently I'm easily guilt-tripped by my family.

Overall, not feeling too terrible this cycle. The peripheral neuropathy is pretty intense in my fingers and toes. Nausea and acid reflux ever present, but I find the more I sleep in the first few days after my infusion, the quicker I seem to recover.

Roll on mid week when my bestie comes to visit!

Neutropenic but not Septic

So I was due Cycle 7 of chemo this week, but unfortunately my bloods showed that I am neutropenic. This means that my white blood cells which fight infection are low and I'm currently at high risk of infections. As a result of this, they have decided to defer my chemo until next week.

So I'm currently living in my own little bubble, I'm avoiding going out and about unnecessarily in order to try and avoid catching anything.

I don't feel much different, perhaps a bit more tired, but thankfully I seem to be pretty much symptom free. To be honest, I'm kind of relieved my doctors wanted to defer my chemo. I'm finding it really quite hard and this means I get another week of feeling well.

To be honest, I'm seriously considering refusing further chemotherapy. My oncologist said there was a trial of bowel cancer patients only receiving three months worth of chemotherapy rather than six months (so six cycles rather than 12 of FOLFOX chemotherapy). Unfortunately, this trial is still too early to change protocols or to make any difference to my treatment, therefore the plan was for me to get the full six months of treatment.

I'm not stopping fighting, I am just really fed up of chemo. The thought of not having any more brings tears of relief to be quite honest. My husband thinks I'm mad and would like me to have the full 12 cycles. but I'm not sure I'm strong enough to make it. Every round makes me feel more poorly and weaker. I really admire the people who make it to the full 12 cycles. My surgery was classed as "curative" and I have now had a full three months (or six cycles) of chemotherapy. Honestly, I don't know. My loved ones obviously want me to have the full 12 cycles, but I am really hesitant to have any more. I'm just fed up.

My biggest fear in not having further rounds of chemo is for the cancer to come back in the future. Then I'd really regret this decision and I'd be kicking myself, so to speak. The fact that the cancer was also in my lymph nodes is the worry, it had already started spreading and what if there was a cell that managed to make it to my liver or lungs? What if? That awful question.

The problem with cancer, it isn't like other diseases where you take the treatment and it goes away. It leaves you with a fear forever. Most days I push that fear away, some days it's quite close to the surface. I'd like to go "meet my maker" in my 60s or 70s, preferably in my sleep, of course...I don't want to go in my 30s because I made a stupid decision not to have more chemotherapy.

The Joys of Chemo Part 2

The thing is with chemo, it doesn't matter what the doctors tell you, it doesn't matter what I write here, no one can ever tell you how it will feel. Sure, the doctors can tell you to expect nausea, fatigue...tired. But what do those words actually mean? As someone who was reasonably fit and healthy before all this, all I can say is, the doctors have made me feel crappy. The logical side of me knows that this is all temporary and it's for the best, but that doesn't get me through the horrendous heart burn, being too tired and weak to even get myself a cup of tea or the feeling of being completely and utterly useless.

You see, as someone who has worked hard all my life to get to where I wanted to be, to suddenly feel useless takes some getting used to. I'm sure my loved ones will tell me I'm being ridiculous, but I feel pathetic. I want to get up and go for a run (one of my most loathed hobbies, might I add), I want to cook dinner, I want to have the appetite to eat my dinner. Really, I'm just feeling rather sorry for myself at the moment and that does not sit particularly easily for me. I know it's preposterous, but I feel like I'm letting my loved ones down, but more than that, I feel like I'm letting myself down.

Never in my life have I let an obstacle get in my way, each set of exams or hardships in my life was just another conundrum to be figured out and worked around. Except now, now I feel like I'm languishing in a sort of "no man's land". My career is adrift for the next few months, my life plans are at the mercy of my doctors and I feel like I'm just wishing away the next year or so of my life. I wish I could say this diagnosis has made me a better person or more positive. Perhaps in time, it might and teach me to live life to the full. But if I said that now, I'd be lying. In the deepest recesses of my mind, if I allow my mind to wander too much then there's fear, an overwhelming, crippling kind of fear that paralyses me and makes me weep. I fear for my future, my health, but most of all I fear for my loved ones. Dying is easy. It's the ones left behind that have to pick up the pieces and carry on. I worry for my husband, I worry how my parents would cope. Of course, I am not terminal and I know I'm in a far, far better position than most. But still, if I allow it, the fear creeps in.

When I was first diagnosed, my husband (still feels weird saying "husband". James and I have been together 7 years now, but only tied the knot July 2014) and I were referred to a psychologist. One of the issues identified is the worrier in me. I worried about everyone. I worried about James going on the motorway to work - even though this a journey I took myself, almost on a daily basis. But I worried about him getting into an accident, but I never once thought of myself being hurt. I worry incessantly about everyone I care about. Yet, it was me to get sick. It was me that would cause everyone to worry. Anyway, from this my psychologist wanted me to explore "mindfulness". Essentially, a way of pushing away my dark thoughts. After all, just because my mind goes to dark places, does not mean it will happen.  Funnily enough, I recently saw an article in the daily mail about the "mindfulness diet". Something about being aware of what you're putting in your mouth and never having to diet again. Not sure what my psychologist would say about that really.

So here it is, if you got to the end of my rather long winded, waffly and let's face it self indulgent post; thank you. Maybe I'll even give this whole mindfulness thing a go and see if I never need to diet again - I mean change my way of thinking so I don't worry so much anymore.

Incidentally, today is Monday Cry-day. It's my first day off steroids after my FOLFOX infusion and I always find something silly to have a weep over - last week it was because the steroids were making my face puffy, this week I let the dark thoughts tumble out in a cacophony of tears and rather attractive snorting over the telephone to my poor mother. So let's the this post with a little bit of positivity, here's a rather nice car selfie, taken on my way to a genetics appointment (more on that later) and one of my beloved pooch Alfie.

My husband hates all my selfies, he thinks they're attention seeking and he seems to think I'm too social on social media. Stuff him I say! When you're feeling rubbish, a girl should capture when she looks good! 

The Joys of Chemo

Cycle 5 Chemo Selfie

So, my surgery went really well and they got clear margins around the cancer, so I'm having chemo to make sure no sneaky cancer cells made their way into my lungs and liver. There was nothing to suggest this on my scans, but sometimes the cells are too small to pick up on scans.

My doctors have me on the FOLFOX regimen which is three different drugs, every fortnight I go to the chemo unit and have an infusion which lasts 2 hours and then I go home with a pump full of Fluorouracil which lasts a further 36 hours.

36 hour Fluorouracil Infusion

I just had Cycle 5 yesterday and I'm feeling pretty sleepy. First few days after chemo is pretty hard work. I'm very tired, sickly and generally a bit miserable. Luckily, this only lasts a couple of days and I get roughly a week of feeling myself and I can get out and about before the next round. I suffer quite a bit with peripheral neuropathy, basically any cold stimulus to my hands or feet sets of intense pins and needles and I can't drink any cold drinks because it causes my throat to go into spasm. Cold air tends to do the same with my throat. 

You know the worse thing? When you're told you can't have something you just want it so much more! So here I am craving orange juice! Roll on August (last round of chemo is due July 23rd) when I can have ice cream!!