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The loss of a womb- the loss of a chapter to my story

Saturday marked a year since I underwent my hysterectomy. The date that marks the start and the end. The start of my treatment and the end of a chapter of my life that I hadn’t even got to yet. A year of treatment. A year of loss. A year of love. I have so many mixed emotions about this day that I don’t even know where to start. The first thing that pops into my head is simply to shake my head at myself. My tenacity to not let my diagnosis overwhelm me for even a moment was well and truly imbedded a year ago today. I opted to have my hysterectomy whilst awake with the minimum pain relief. This was not because I was hardcore as most people seem to assume; it’s because I was scared. So scared I can’t even begin to explain it. That was the overriding emotion for the vast majority of this year – fear that if I stopped for even one second and admitted how awful I felt or how afraid I was I would simply stop. I walked myself in and out of that hospital, begging my partner and sister to just let me do it my way. I can appreciate this must have been so unbelievably tough for them but I just couldn’t do it any other way. This insistence to handle appointments and procedures myself stayed with me throughout this whole year and I am truly sorry to those I love for the agony and despair I know this caused them at times. I honestly wasn’t trying to be deliberately difficult; I was trying to survive.

I’ve been thinking a lot this past few days about how infertility or not having the opportunity to have a family for whatever reason affects so many people in so many different ways. I have friends who are struggling through IVF, who just “simply” haven’t ever found the right person to start a family with or who have had babies and lost them and each of these stories is unique isn’t it. If I’m honest I am not sure I have quite accepted it’s a done deal just yet; I sometimes feel like I might wake up and this will all have been a dream and I’ll get up and go to work like “normal”. Whilst undergoing treatment the focus is so on getting through, each appointment to the next, more often than not one hour to the next when things are really bad. I used to count down how many hours it had been since the super strength chemo because I knew it reached a peak after a certain time and then dropped off and if I could just make it to the peak I could get through. A clear focus. Now I have stumbled out of it, this week I have been able to get out and do some of the things I have been missing for all these months in relative health. And suddenly the prams are out.

I know I am far from alone in this. Women (and men) everywhere are struggling with not having the family they always dreamt of, facing all those baby adverts on a daily basis. A personal favourite is when you are watching YouTube clips and that bloody Pampers advert comes on, you know the one you can’t skip… 20 seconds of babies gurgling and laughing. I want to tear out what hair I’ve got! I’m not even sure the people who are buying Pampers want to listen to that. And the of course there are the obligatory lovely comments: “Just think of what you can do if you are never tied down with children”, says the mother cradling her beautiful baby. I tell you what give little Arthur here then eh and I’ll have him… No I didn’t think so… I do appreciate the sentiment behind such statements, I really do and they are right. It’s a ticket to live a “free” and selfish life. But, I’m not sure how I feel about humans being “meant” to live selfishly; surely innately we are designed to care for each other and to nurture? It feels like it sits at odds with that somehow. And yet that is the card we are dealt isn’t it. I am very lucky that I have amazing relationships with my nieces and nephews; they are the absolute light of my life and to be honest they make the pill a hell of a lot easier to swallow on an almost daily basis. And my little Bear dog too – he is my glue that holds me together when the going gets tough. Obviously they aren’t my children, I am very clear on that,  but oh my how I adore.

The other issue that comes up a lot is alternative methods of having a baby. As a gay woman I am well aware that there are plenty of ways to become a mother. However, let’s stop and think for a second. Imagine you are facing a terminal diagnosis, you are very clearly told by the doctors that you will die from this disease earlier than your peers. Would you be willing to bring a child into that, to risk putting them through witnessing all the nasties you’ve witnessed this past year. No, not really the best plan is it. Don’t get me wrong, I’m not walking around all day every day wishing I’d not had the treatment because the pain of what I have lost is too much to bear. Its more subtle than that. It’s like when you walk through the house in the dark and suddenly get a feeling something is there but you look and it isn’t, there are just empty rooms. So, you shake your head and move on through the house, no doubt to the fridge. Let’s face it why else would you get up in the night if not for Nigella-esque moment of gluttony. Or a cup of tea. They are the only two options.

I wanted to write this particular post, as a statement of my own personal battle with how my new life is going to shape up, or not more to the point. But also, more importantly perhaps to stretch a hand out there to anyone who is struggling with fertility, loss of it, or life having not offered up what you once thought it would. You are not alone, you walk this path with thousands of other men and women. Each of our stories are slightly different, we each have our own crosses to bear. But we can be the kind eyes, in a sea of pampers adverts, saying “it’s okay, you got this”.

JJ x

 

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Starting to find my way back

It’s been just over a week now since my last chemo session. In that time I have been utterly amazed to be honest at how well I have done. As usual the first few days following chemo were pretty horrendous: nausea, fatigue, muscle cramps, headaches and this strange feeling like all your molecules are shaking and moving around in ways you are pretty sure they have no business doing, ruled the roost. But then… on Thursday it was as if a thunder cloud lifted and suddenly I could think a bit more clearly, I could hold myself upright and I was off! I’m not sure if it was the blood transfusion I also had last Monday (which I had been desperately needing for a number of weeks but the infection risk of actually having one was preventing my team from allowing me to have one) or the sheer relief that this was the last time, hopefully for a long time, that I had to go through it – but I am feeling well. Really well. Better than I have felt since November! Don’t get me wrong, I’m not running any marathons just yet but yesterday I stood and properly baked for the first time in months (using my new super duper Kitchenaid cake mixer that my beautiful partner and family bought me for my birthday last month and is now my pride and joy!) which in itself is a massive thing for me.  As you would guess from the title of my blog I am an avid baker and one of the things that I have found most difficult this year is that I have been for the vast majority of the time been stripped of a lot of the things that kept me well mentally for the years that came before my cancer diagnosis. And then today the momentous occasion came… I went out for the first time since December to actual real life shops! Not a quick pop into a pharmacy to pick up yet another prescription or dragging myself to the hospital or the GP. Nope, real shops with actual items to purchase! And purchase I did… eek! What feels like my new body is taking me a bit of getting used to. Whilst those around me assure me I don’t look that different, I feel very different. Both physically and mentally I am changed.

Physically the good bit is I have lost a bit of weight and this is most welcome I have to say, not necesssily the diet I would recommend if I’m completely honest but you know, you’ve got to take the wins where you can haven’t you.  But the other, more cruel it sometimes feels like, side is that as I have been undergoing chemotherapy and radiation and all that other loveliness (not!) I have also been going through the menopause and so to me it feels like my body has changed a lot physically. It’s just not as pert as it was shall we say. I’ve never been a woman with a love of having her body out but this year in a lot of ways that has really been put to the test;  watching your body change in ways that, as a woman, you always knew were inevitable but didn’t think you’d have to consider before the age of 30 has been a bit of a toughie. I don’t mean to come across vain – anyone that knows me I’m pretty sure would vouch for the fact that I am not. But for anyone, watching your boobs shrink and your cellulite multiply faster than it felt like those pesky cancer cells were,  is sometimes going to be just a bit much; yet another strange reminder of what has been going on and the perceived lack of control it feels like you have over your own body.

But, one of the massive advantages of having “the cancer” (as my lovely, if a little too forthright sometimes, window  cleaner calls it) is that it forces you to face yourself at your very worst. Unless you are going to cover every mirror in sight are you are going to see yourself looking at your very very worst, and not only that but you are going to go out looking like that too! I remember before my hair fell out for the second time more recently being utterly obsessed with trying to figure out what I was going to do about my eyebrows. I felt okay about my hair going, after all I’d already faced that unexpectantly earlier in the year – going from long-ish thick curly hair to nothing within a matter of days – but the idea of not having eyebrows was mortifying. I so wish I could go back and tell myself that I really wouldn’t care, that by the time they fell out my focus would be on simply holding my head up and getting through; that it really wouldn’t matter and that it certainly wouldn’t matter to those around me who love me. Don’t get me wrong, for some people it remains a very big deal and there are all sorts of things you can do to help, but for me if I’m honest I just felt so poorly that I really didn’t have it in me to get a shower most days never mind faffing around with makeup of any description! And so the good thing about going through all that is that you realise actually you weren’t that bad at the start. And with that comes a new sense of confidence that I for one am actually quite pleased with. If I can go out looking how I did when I was really poorly, then I sure can go out now with a smile on my face and a spring (albeit maybe a teeny spring at the moment still) in my step. I can’t help but think back to the last day I went out before I got put on house arrest – I literally had to stop every 2 or 3 steps to take a breath because I couldn’t breathe and walk at the same time, I looked like a yellow ghost and had a funny waxy texture to my skin that I have to admit was rather disconcerting. People were staring at me with concerned faces as I forced my way around Sainsburys.  It was probably one of the single most mortifying moments of my life; the moment I realised that actually I really was quite poorly and perhaps the doctors were right that maybe I needed to just lie down for a few weeks and let myself be ill.

But now, today, I have put makeup on for the first time in months, and strangely instinctively I put sooo much less on than I ever would have done before (and did have a slight moment of horror thinking I looked orange when I first applied it!). I  was one of those women before who wouldn’t even pop to the corner shop without at least some makeup on. Today I didn’t feel I needed it. I wanted to put it on, I wanted that bit of me back, and what a wonderful, liberating feeling that was. Don’t get me wrong, my hair has only just starting growing back (although I do have freakish hair that the medics can’t quite fathom that literally springs back the moment I stop taking the drugs and seems to grow at a rate of knots) and I’m still looking far from my best but compared to those awful days I look positively great! No complaints here! So off I went out, rocking my newly growing hair.  No hiding under a hat here, I am proud of my head and of all that it represents now. I have worked bloody hard to keep this head and I bought the pinafore dress I’ve long longed for but didn’t think I could pull off before – so what if I can’t, I want to wear it.  And you know what, at the risk of sounding evangelical (which is my number one fear writing these blog posts I’ll be honest!), that is what we should all be doing. Embracing ourselves for who we are; all that we are. Whatever that means to you. Do it! Live like no-one is judging and we can’t really go wrong can we.

JJ x

I’ve been hiding and a little bit mad…

I’ve not written to you all for a few days now. I’ll be honest, I got a bit scared. Firstly, I genuinely thought about 5 people would read my blog not the nearly 1000 of you that have done so far! What on earth is going on there ‘eh?? Don’t get me wrong, I’m absolutely thrilled that I’ve not been laughed out of town (yet) and that the messages from people in similar situations to my own are just flooding in. I have received messages of support, love, thanks – it’s been incredible. But in a way, it has been a stark reminder of just how serious my story is. That it doesn’t matter how many jokes I weave in to my journey, the fact remains the same: I climbed the fence and peered over at what’s on the other side of life and only by sheer luck (and more than a touch of stubbornness) did I somehow manage to start to find my way back down.

I also chose to launch the blog on with hindsight, a bit of a crazy day! Just after I set these words free to the world I set off to the hospital for my “end of treatment 2” review with my oncologist. As my friends and family say, I never do things by halves! And I sat there waiting to see him watching the numbers of people who had viewed my blog rise up and up,  and I felt the panic set in. What on earth had I done? Who did I think I was actually going to help with my strange mix of heartfelt and quirky humour? And then I saw the doctor and life seems to have changed its course again…

One of the first things I said to you all was that I wouldn’t get the happy day of “the all clear”. Well, that remains true. When I saw my lovely but very pragmatic (if there was ever a patient/doctor match made in heaven it’s probably us two!) he got straight to the point. “I’m really happy with the response we have had to this treatment, BUT, we are far from done with you missy”. I don’t really know what I expected; I’m the one that has been reminding everyone to not expect a grand finale. And yet, something about him saying that just broke me a bit.

So the news I did get was, as is usually the case with these things, partly really good and partly not what I’d hoped for at all. The good news is that, for now at least, we have finally managed to contain the cancer it seems. My body scans show that there are no further tumours and the ones that were in my kidneys have shrunk to pretty much nothing. Utterly amazing!! But, the doctor took great pains to stress that his view is that as soon as I stop treatment the beastie will be back to its old tricks, the bar will re-open and the drinks will be flowing!

The wise doctor’s recommendation is that at this point I move on to long term oral chemotherapy. Again, I know, I know, that compared to the alternative, in so many ways this is an excellent result. It should mean that I get a reasonable length of time before I require intensive treatment again; however, it does mean that life will continue to be restricted. He immediately advised me to not to even attempt to return to work full-time, that I would need to ensure I didn’t push myself too far. I would need plenty of rest, there would probably be some of the changes that had happened this year that wouldn’t return to “normal” such as my taste and other senses. It is fantastic that this is even an option and yet it feels like yet another card I’m being dealt that I have to just accept and make the best of. These aren’t things I am going to need to do for a set period of time; this is forever we are talking about now. I feel a bit like I’ve spent a year compromising and shifting my expectations down in life.

In the days that have followed I have felt genuinely angry for the first time in this whole process. Even my beautiful puppy dog, Bear, who has been my saviour throughout this year in sooo many ways, seems a bit concerned that at any moment he is going to get turfed out of his comfy bed! In fact, I did actually shut him downstairs for the first time in months the other day because I just felt like I wanted to be completely alone with my hurt and my rage. His little cry was too much for this softy to bear – I lasted all of 5 minutes before I longed for that cheesy wotsit paw smell to be snuggled up next to me! It’s completely normal for people facing any life changing situation to feel anger, of course it is. I am the first to say this to everyone else. And yet when it comes to me it appears I am not very good at taking my own advice… Having viewed the whole process as a journey and tried to suck up as much learning as I could from it, it seems to have come as a bit of a surprise to me that on Tuesday evening when I sat making my calls to family and friends as they said reassuring things about the news being good,  all I wanted to do was scream at them that it wasn’t good, this wasn’t my life, I wanted to get off…

I’ve gone from a 28 year old woman who was full of plans for a future not yet lived to someone who has to live completely in the moment to not fall apart. I could definitely give mindfulness coaches a run for their money now! You’d be amazed how long I can stare at a crack in a wall for…Believe me, I could win an award for wasting time.

So, here I am today. I am sat in my hospital bed, the last of my intensive IV chemotherapy treatments has just started its journey through my veins! Shortly I will feel drunk-I’ll try not to keep writing at this point but I’m one of those chatty drunks so if you read this and the end doesn’t link to the start at all – soz I’m just high on the delightful cocktail of anti-histamines, steroids and alcohol that prepares my body to receive the chemotherapy. I’ll be here all day today. There will be moments where I will wince in pain; most chemo doesn’t hurt when you receive it but this one is a nasty bugger and stings (another “little” understatement there – for those of you who have ever received high dosage treatment or supported someone who has, you’ll know what I mean) as it courses through you. Then, I’ll sleep, that kind of heavy drug sleep that leaves you completely confused about what year it is and who you are. And then I will leave. I will walk out of here and (all being well, barring me not doing my usual trick of getting some completely obscure side effect) be free from the weekly trips to the hospital for the next 4-6 weeks whilst my body heals enough to start my next journey.

And I don’t know what I’ll do or how I’ll feel but one thing is for sure: today, I have decided to use all that anger and hurt and sadness and amazement I feel. To harness it and build something better; for myself, but also for all of us. The response I have received so far assures me to the core that this is exactly what I should be doing. Sat here writing this is where I should be. I am the “proper” cancer patient I was so scared of becoming. Sometimes I falter, sometimes I feel like I’ve had enough and I can’t cope but I will never give up, I’ll never be ready to say goodbye. I’ll go stubbornly into this next phase of my life with my head held high and a new sense of joy in the small things in life. I’m not saying I’ll never moan about my hair again (oh I’m actually longing for that day at the moment – I’m staring waaaay too much at women with long dark curly hair like mine used to be) or that the kitchen roll has been left in the “wrong” place (admission of OCD tendencies there for you all). Jeez, I’m not a saint! But I am strong. I know that now. They’ve removed my womb but they’ve not removed those muscles after all…

JJ x

Trials, treatment and yet more treatment

I  was unsure about writing a post completely dedicated to my treatment journey. The main reason for this is that my treatment has not gone to plan… at all! In fact that is probably the understatement of the century. Think Donald Trump being elected president of the most powerful country in the world… oh, wait, that actually did happen. 2016 really was a shitter wasn’t it! But also, I am acutely aware that, unfortunately, many of you reading this will be touched by cancer in one way or another over the years and I don’t want you to look back and go oh shit that JJ girl who wrote that weird blog said this was going to be awful. But, as my wise little sister said “No-one is going to go ‘oh JJ said it wasn’t nice, nah, I’m not going to bother’. Hate admitting she’s right but good point there G! But I think without talking about this, a significant part of the journey is missing so I am going to take the plunge and just say it. Cancer treatment is brutal!!  Like the worst thing you could ever imagine. And you are willingly offering yourself up to this. You value your life so much you are prepared to be dragged through life-altering treatment just for the chance to survive. That’s some serious commitment to staying in the world, believe me!

I think the first thing for me to say is that the world of cancer treatment is a minefield of medical jargon! Suddenly you are thrust into an unfamiliar and quite frankly bewildering world of blood counts you never even knew existed, ridiculously long drug names that I’m convinced they just play lucky dip in a bag of letters to come up with and there are so many different combinations of treatment that quite often you might meet someone with exactly the same diagnosis as you but on a completely different treatment plan. What most people don’t realise, myself included before I myself was thrust into this strange other world is that quite often you are given a combination of different drugs either at the same time or one after the other to achieve the best chance of success.

You are also actively encouraged and (to be honest in my opinion wrongly sometimes) expected to be actively involved in decisions about your treatment. Something which I myself found incredibly hard to deal with when a) I had no idea what they were talking about and b) I could hardly remember my own name never mind making the final call on decisions about my life! I remember on so many occasions practically begging my medical team to make the decision for me; I just couldn’t face being “responsible” for any more. I already felt like it was my responsibility to make sure the treatment worked and I genuinely got to the point just recently where I just didn’t care anymore about being asked what I wanted. I just wanted to be passive; to lie there and let them do whatever they felt they  needed to do. This was both a blessing and a curse -for me it was a relief if I’m honest but for those around me I think they found it hard to watch. I have always been staunchly independent and if I’m totally honest a bit of a know it all sometimes and here I was just nodding along and not even asking too many questions about what the doctors were suggesting. They worried I was giving up but to me I was just going into survival mode.

The following is the story of my journey through the first treatment I received during this year…

After my hysterectomy when the doctors gave me the unexpected diagnosis of locally advanced stage 3 cervical cancer, they then shone a beacon of hope for me to be able to live a relatively normal life whilst undergoing treatment. You have no idea how happy I was to hear this; the last thing I wanted to be a “proper” cancer patient. I wanted to still work, I wanted to not let this get in the way of all the plans I’d made. I was far too busy being JJ big boots for cancer treatment.  There was a trial that was half way through its 5 year plan. With an amazing success rate! It involved oral chemotherapy and a radiation implant rather than the traditional (and I have to say rather barbaric) radiotherapy and chemotherapy treatment. The plan was that for 8 cycles of 6 weeks each, you took the oral chemotherapy every day for 3  weeks and then you had a lovely, glorious 3 weeks off where you felt well. You also had a radioactive implant attached to your pelvic bone for 6 months that gradually released the radiation you needed to blast those pesky cells. The combo of these two types of treatment was supposed to be equivalent to 5 doses of high dose chemotherapy and 20 radiation treatments, the NICE recommended treatment for my cancer. None of the nasty side effects such as your hair falling out, changes to vaginal walls making them fibrous and painful, no extreme fatigue – the list went on.

I was in!!

So, 2 weeks after my hysterectomy, off I trotted to get this magic implant fitted. They simply went in through my belly button, drilled a very small hole in my pelvis and attached the implant on a loop, “don’t want it floating around your body do we” they joked as I heard them drilling through my bone.

It’s so weird writing this now because at the time it felt like all this took months, but actually by this time we were talking less than 7 weeks since I had been to the doctor and here I was already well on my way into the world of cancer treatment.

The doctors assured me it would take a good couple of months for me to notice any side effects from the implant, by which time I would have side effects from the chemo anyway. My partner picked me up from that appointment and I felt so well I asked to go out for a drive. We had a lovely day in my favourite little town, eating and me blabbering on as usual about all the things I was going to do; her nodding along at me – standard.

Within 6 hours I was writhing around in agony, my skin was burning, I felt so sick, I couldn’t stop shaking. I was scared, I was confused, I felt like I had no control over my own body… but I thought maybe this was how it was supposed to feel when it first went in, so I waited it out and then rang my trial nurse the next day. She was concerned about my symptoms but agreed perhaps my body was just getting used to it, people can have all sorts of reactions to things is what she said; I agreed. We scheduled for me to have my blood taken in a couple of days. During that time I’ll be honest I was in a lot of pain and distress. I didn’t want to admit how scared I was because my family were already so worried but wow when I look back I’m still not actually sure how I got through that time!

I shudder even now when I think of those first few weeks. Long and short of it is I got radiation poisoning . Your radiation levels were never meant to go above about 6 on this scale they used; mine went to 9 within 1 week of having the implant in and stayed like that pretty much for about 4 months. During this time I carried on going to work just as soon as I could – I was still determined. People kept saying why didn’t I have the implant out.  I couldn’t; if I did that I wouldn’t be able to continue with the rest of the trial and have to have “normal” treatment which I knew meant going off work completely. I wasn’t ready to admit defeat yet. I could do this!

The hair that they said wouldn’t fall out, fell out within 2 weeks of the implant being fitted, before I had even started my chemotherapy! I looked seriously ill (in fact I was looking just now at pictures of myself from that time and I don’t look much worse now, and I’ve now had a year of treatment and some seriously strong chemo in the past few months). My choices were carry on and have a blood transfusion in the hope that would help my body to process some of the radiation, or come off the trial and have the implant out. Now, I have (had I probably should say, I look forward to receiving it now- oh the relief of transfusion day is unbelievable! How things change!) a serious phobia of blood so the idea of a blood transfusion seriously freaked me out. On the day I had my first one my best friend was messaging me as I was there in the hospital hooked up to all the machines: “I’m sprinkling some unicorn dust on the blood. It’s not blood anymore, you’re fine”. Little messages like that were what I held on to during those first few months when everything was so new and scary. I couldn’t admit how petrified I was – if I did I would crumble.

During my time on the trial my cancer spread. First they discovered it was in lymph nodes much further away from my original site and I had half the amount of lymph nodes you have in your body removed (you have waaay more than we realise by the way). At this point the doctors were still quite confident that the treatment would work and, although I no longer fit the trials  guidelines to be included in their data, they suggested I continue because they couldn’t recommend better treatment at the time. I was happy for these couple of months. We went on the holiday we had booked the previous year, pictures of me in cool headscarves on the beach uploaded to facebook. Although it had spread I was convinced it had been in those lymph nodes all along and had simply only shown itself now. I was having regular blood transfusions to keep the radiation under control. Don’t get me wrong I was exhausted all the time and pushing myself to the limits of my abilities. But I was still working for 4 out of the 6 weeks in each cycle, although at reduced hours and temporarily leaving the job I had just moved into before my diagnosis to help things be more manageable for me. My hair grew back during that time as well as my radiation levels were kept under control and I sported a funky short do. Work were amazing; my friends and family were so supportive. We’d got into a routine – we all knew 1 week of the 6 I was in bed, I could hardly lift a cup and needed constant help, then I would pick up again and tell them all to bugger off. I had this!

And then came the big blow. Suddenly I got really poorly out the blue. One day I was okay, I was managing, the next my blood pressure plummeted to 60/40 , I could hardly hold myself up, I felt like my body was racing yet all I could do was lie there. I had no temperature control. I lay there in bed breathing fire breath onto my sisters arm yet I was shivering I felt so cold. My wonderful nurse said she wasn’t happy and did a full blood count. My cortisol level, which is responsible for all your adrenal responses in your body was through the roof. Why?

Turns out I was “treatment resistant” to the drugs I had been on for all those months and whilst myself and my doctors had been working hard to keep me well my cancer had been having a little party in there! When they scanned me my kidneys and adrenal glands lit up with tumours; the cheeky bugger had made itself well at home in there. My friends and family were devastated. All I felt was guilt. To be perfectly frank I couldn’t even look any of them in the eye I felt so ashamed. Why hadn’t I been able to stop it growing? Why didn’t I just have the traditional treatment from the start? Why was I so stupid to not notice my kidney function declining to that point?  I have to say, I’ve still not quite come to terms with this part of my story and I don’t think I’ll ever be quite okay with accepting that it is just one of those things, no matter how much I beg my family and friends to believe that. I’ll always feel that in some way it is my fault and feel awful that I am putting the people I love most through this next stage in my life. That’s the thing isn’t it whenever anything horrendous happens… you question it and it takes time to come to terms with;  it’s completely normal,  I know this, and yet there are times when I still question why on earth I am putting myself and the people I love through this.

So, I sat there in a meeting with about 6 medical professionals and little old exhausted me discussing what they felt they could do for me next. “It’s time to bring out the big guns” they said…

It was time for some serious cake to get us all through!

JJ x

We are going to have to trust our instincts

It’s probably worth taking a moment at this point in the proceedings to talk about symptoms and looking after yourself. Now, I’m going to focus on Cervical Cancer here because that is obviously my area of expertise shall we say now…

However, the title of this post relates to anyone with any niggle about their health, be that their physical or mental. If you don’t feel “right”,  if something is niggling you or you catch yourself thinking about it more than you feel you should: Go to the doctors, talk to a friend, get it out there. Just do it! 9 times out of 10 they are going to look at you and say you are fine; that’s great. My doctor once said to me recently on one of his lovely weekly calls to me to check in (I have to take a moment here to stress how lucky I have been with my medical teams both at my local GP surgery who are the ones that call me every week and at the hospital I am treated at. Good relationships with your doctors make all the difference when you are scared and facing such massive decisions about your life. So moral of that story – be lovely to your GPs people!!) that the best bits of his day are actually when people DO waste his time. If he gets to say to someone “nope, actually you’re fine”, far from being annoying, it’s a relief he said. When you think about it, if it were you, surely you would much rather tell someone they are fine than they are not any day!

So, on to my little expertise…

First thing I hope is somewhat obvious- don’t miss your smear.  That is not cool ladies, you are dicing with the Cancer Devil and believe me it is just not worth it!! Yes it is slightly uncomfortable but to be perfectly honest the main part of that is that we tense up and you have some seriously strong muscles down there. You know how people say women are strong; I reckon it comes from deep inside us in the muscles of our vaginas!

Also, you would surely much prefer one lovely nurse (who, by the way, has probably already looked at about 5 or 6 vaginas that day and is so bored of looking at them that unless you’ve got a unicorn up there doing the hoola is just going to take your swab and go on her merry way) to take a look than a whole team of doctors gathered around your lady bits surely?! There was a time back in March 2016 where I joked that if a medical professional walked into a room I now just dropped my pants!

My second point (rant maybe, soz about that I didn’t realise I had so much to say on this topic!) is quite simply to trust your instincts;  if something doesn’t feel right it’s probably because it’s not!! I’m hoping you all know the typical symptoms: bleeding between periods or after sex in particular, change in vaginal discharge, changes to periods but… for me it wasn’t really those things. After having surgery previously I had always had some discomfort; weird bleeds they were just “me”. What I hadn’t had previously was this pressure (it felt like my sister and other friends I’ve got have described they felt when pregnant, and their beautiful babies were having a little party on their bladders). This pressure I later found out was because the tumours that were growing were pressing on my bladder and my womb was actually stuck to it. A delightful sensation as I’m sure you can imagine!

The other thing was I just generally felt unwell a lot of the time. I’ve always been cautious to tell people this for fear of creating mass hysteria, especially as my diagnosis came in the thick of winter when everyone around me had constant coughs and colds. I can’t really describe what the “unwell” was, I just generally was getting very run down, catching everything that was going and had a number of strange illnesses like this crazy rib cage inflammation that before this year was THE worst pain I had ever experienced – urgh if you’ve had it you’ll know what I mean. I now know that that was because my body was already fighting pretty hard. That’s the thing, your body isn’t passive to cancer.  From the moment it starts your body goes “woah now buddy what ya doin'” and it starts trying to get rid of this beastie on its own – usually it fails.

Moral of the story: trust your instincts. Go to see that doctor about the mole you were a bit worried about but never got round to checking; talk to your friend about how down you’ve been feeling; don’t “forget” to have your smear or your mammogram or any other number of the tests that our health service offer us.

I’m sure some of you are thinking well, she is saying this but she obviously went too late because look at how much treatment she had to have. But, that my friends is my point. If I hadn’t gone when I did I would be dead now, no question about it! My cancer was particularly aggressive and considering the rave it had whilst I was on treatment this year,  without it I would certainly have been gone by now. And that is a scary, scary thought. A quick trip to the docs- not so much!

Anyway back to the main story I go (I did warn you about the tangents)…

JJ  x 

We are going to need to run some tests

How the journey began….

I’m going to start the first in hopefully what will be a series of blogs a lot further along the line than the start of my story. I’m going to rip the plaster off and tell you the worst first. My diagnosis is now of Stage 4 Metastic Cervical Cancer. I will not get the happy day of “the all clear”; this disease will inevitably take my life at some point in the future; my chances of making it for the next few years are incredibly slim. But, I have survived my first year of treatment, I am stronger mentally than I have ever been before, I love harder than I have ever loved before, I laugh with more joy than I ever have before and I live with more passion than I ever thought possible.

So here goes, this is my story…

Just a few days into January 2016 I was sitting in the waiting room of my GP surgery waiting for the doctor to come back to get me. I’d gone in because I just didn’t feel “right” and had pressure “down there” aaallll the time.

Having had a diagnosis of early stage Cervical Cancer 4 years previously I wasn’t taking any chances and thought I was being oh so sensible going to the doctor early. Thank the universe that I did! The doctor took one look inside of me and said “We are going to need to run some tests immediately. Can you go and wait in the waiting room, I don’t want you to leave until I’ve arranged an ultrasound scan and blood tests at the very least for you for asap”. That sentence was the start of my journey.

Within a week I had had the ultrasound scan, noticing a red mark on my file when I went in to have it done, not daring to look at the screen. I remember being sat in that waiting room surrounded by beautiful pregnant ladies thinking I just knew deep down I was never going to be like them. I was called by GP within a couple of days – the results had been fast tracked and the news wasn’t good, there were significant growths over my cervix as well as fallopian tubes, ovaries and down into my womb itself. He had made me an appointment with the gynaecologist for a week’s time.

The morning of the appointment I stood there staring at my knicker drawer trying to decide what pants to wear for this man who was going to be spending a significant amount of time with my most intimate parts over the coming weeks and months! Texting my best friend and my sister saying what did they think would be best. Their replies both the same: “I really don’t think he is going to be interested in your knickers”. My response: “well maybe I might cheer his day up”. This ‘let’s try and see the bright side of this’ has always been my signature style for getting through the worst times and so it made sense that now would be no different. Facing such a life changing situation some people cry, some scream, some go for a run, I make jokes!

3 weeks after having that initial scan I was admitted to have a radical hysterectomy. Within 12 hours I would be infertile and entering into the menopause; I was 28.

“I’m afraid the cancer was more invasive than we initially thought. Upon removing your lymph nodes we found cancerous cells in every one; you are going to need a lot more treatment than we had initially hoped”. I had been told prior to my operation that they were hopeful the hysterectomy and some radiation would do the trick. Now I knew I was in for the long haul…

At this point the doctors staged my cancer as Stage 3 due to the spread to my lymph nodes – big jump from the 2A we’d been expecting – bringing with it a whole host of emotional and physical stresses we hadn’t really prepared ourselves for. I sat in the appointment nodding. I left being positive to my friends and family: this wasn’t going to beat me, we were going to “just” get me some treatment and I’d be back to my old self before they all knew it. I went back into work the next day saying I still wanted to stay in work – I was desperate not to go off sick. All the time inside I was barely breathing, holding on to the reassuring smiles and arms of my loved ones, not daring to give in to my emotions for even a second for fear I’d never come back.

“You are so brave” people said when I told them. What choice did I have; what choice do any of us have when faced with such adversity? We pull our big girl britches up and we get on, that’s what we do! We find that strength we never even knew we had and we fight. And eat cake…

JJ x