So where am I now in the grand scheme of things?
A lot has happened in my journey and I haven’t written for ages. Writing this blog is hard work. It’s emotionally draining. It requires me to put myself back in the mindset of where I was a year ago… and most days, in all honesty, I’m not quite up to that.
At the moment I am fucking fed up. I am in quite a lot of pain. I don’t let on much to people because, well it’s not the easiest thing to talk about.
I started having pain in June/July 2018. I started to feel quite strong/severe pains in my pelvis. The pain would sometimes spread down my legs and across my lower back. It was pretty uncomfortable. I had been told by my doctor that I should get in touch if I started to have pain in my lower back. It was something to watch out for. I booked an appointment with the doctor but it was a week away and well after having cancer you don’t really want to take any chances so I emailed my Key Worker. She rang me back and talked to me about the pain. She assured me that it wasn’t cancer as I’d had a smear not that long before and suggested the pain was muscular (which I knew it wasn’t) and would go away in a few days.
From that conversation and the fact I didn’t feel I could take time off work I cancelled my doctors appointment. At the time, I was working in a department store, standing all day serving customers, stocking shelves, cleaning… basically getting up and down all the time which began to KILL! I started to get dizzy and felt crap! I was sooooo uncomfortable. After I finished work one Friday night my Dad drove me to the doctor on call. I waited and waited and when I talked to them about my symptoms they said there was nothing they could do for me and if I was really worried I should just go to A&E. My parents picked me up. I was in a lot of pain. I told them what had been said and they drove me to A&E. Now the last two times and ONLY other times I have ever been to A&E I was bleeding profusely, I’d just had surgery to be treated for cervical cancer and I had a terrible infection. Things were pretty bad. I am not the type of person to rock up to A&E for no reason. When I got there I was put through triage reasonably quickly, they took some blood and after quite a long wait I spoke with a doctor who said they couldn’t do anything. It was a Friday night, they didn’t want to admit me, there were no beds and there was no way I’d manage to see a gynaecologist before the following morning. They loaded me up with painkillers and sent me on my way, making me feel rather foolish.
I had a weekend of being miserable, I even went to work the next day and was a complete mess. On the Tuesday or Wednesday I ended up going to the doctors and they had a look at me. So once again I’m lying on my back in the doctors with my legs apart. By this point I was really inflamed and tender as well as having the really bad pelvic pain, which more often than not spread across my back as well. I was told I had a severe thrush and that a course of pessaries would solve the problem, but they also wanted me to get checked out by my gynaecologist because they didn’t want to miss anything in case it was cancerous. I was told that it would be quicker for me to approach my own specialist than to be referred to someone else.
So I give it a week or two… nothing much changed apart from not being inflammed. The pain was still really bad. I ended up having to take time off work so once again I called my key worker and she made me an appointment with the gynaecologist… it wasn’t until the beginning of October. She also arranged an appointment for me to talk to her as a hand over since she was now my key worker. This would be late September. The medication wasn’t working so I went back to the doctor who gave me more medication… once again for thrush and also painkillers. Now painkillers don’t seem to touch whatever this is but at this point I’d try anything if I thought it’d help.
I was still in a lot of pain… during all of this I was applying for new jobs and finally got one… hooray! So I managed to hand my notice in, tag along on a holiday to Ibiza with my parents, move house and start a new job in Belfast. I wasn’t fit for much on the holiday. I couldn’t walk far. I was in pain pretty much constantly.
When I got home I discovered that I had an appointment at Antrim hospital, I hadn’t asked for this appointment, I just assumed that maybe the doctor had referred me.
I had my phone call with my key worker. She was aware that I was going to see a doctor in Antrim hospital and told me not to both and to wait to see my doctor in Belfast. I at this stage was in a LOT of pain and so I wanted to see someone ASAP, also I knew I had to reschedule my Belfast doctor’s appointment because of work commitments and I didn’t know how long that would take.
On the phone my key worker asked how I was. I explained I was still in pain. She said “Yes but how are you apart from that? How are you coping? Are you managing emotionally? Are you able to do the things you want to do physically?”
NO! I’m not. HELLLLLOOOOOOO! Aren’t you listening?! You’re asking me how I’m doing after having surgery from a cancer diagnosis over 6 months ago and being pretty good to suddenly then feeling constant pain in and around the problem area and you want me to separate it? For all I know the pain I’m currently experiencing could be caused by the surgery and you want me to separate it? Its not like me saying I have a sore elbow.
“I’m having severe pelvic pain love and it’s effecting my every day life, no, today I’m not doing OK, can you not hear through my sobs?!” – is what I wish I’d said. I remained polite. I still cried. She didn’t seem to think I needed psychological help. What she did think I needed was to be posted a sheet informing me about exercising my pelvic floor and help getting back into exercise with local cancer support centres.
I can’t do any exercise because it fucking hurts! It’s not the kind of pain that it feels right to “work” through, or I would be! I am so ready to be doing exercise again, I want to be out dancing every night… not lying on my bed thinking I’ve been staying really still for the last 30 mins and it still fucking hurts!
I HATE FEELING LIKE I’M NOT BEING LISTENED TO. I also hate being passed from pillar to post with no one taking me seriously and no one giving me any answers.
When I go to Antrim the following day I discovered that it was with my favourite doctor of all time… if you don’t remember him look back a few blog entries, he’s the imbecile that told me I was a ticking time bomb and that I should’ve had a hysterectomy.
He was pleasant enough. He told me he wanted to do a smear and a test for HPV, for his own curiosity and he’d been reading up on conservative treatments like mine. Personally I don’t feel like my treatment was conservative at all. I had a LLETZ followed by a double whammy of a joint cone biopsy and 20 of my pelvic lymph nodes removed. It took me ages to recover, especially since I managed to get a really bad infection when healing from the cone biopsy, and that’s only physically. It took a very long time for me to heal emotionally, I’m still on that journey and I probably will be for a long time to come. so he can shove his “conservative” treatments where the sun don’t shine. He said that everything looked and felt fine down there – yes I had to let that man inspect me again, urgh, I don’t even want to talk about how violated I felt and how obviously desperate I was to even let him in the same room as me again after the last time.
I told him that I was in pain. I tried very hard to explain it. It’s difficult. I’m articulate enough at the best of times but when it comes to describing pain I’m experiencing I find it so difficult. I don’t have the words to explain how it feels, I haven’t even got the vocabulary to explain where the pain is.
When I think about it now I basically have a constant throbbing pain. The only other way I can’t think of likening it to is having really bad period pain, REALLY bad period pain but not being on your period. I’d say it’s somewhere around my cervix because well I’ve become a bit more acquainted with that area over this past year, however it doesn’t feel like the same pain that I had after my surgery. This pain can travel. It is exacerbated when I move. If I bend over it is excruciating. I physically can’t just bend down anymore, it takes all my concentration and effort putting my socks on in the morning. Tidying up is a nightmare. Hoovering is a bitch. Driving is uncomfortable. I drove to Derry the other day and spent half the journey there in tears. Leaning forward to press something on my sat nat felt like someone had kicked me in the stomach. The pain also travels down my legs, deep down into my thighs. It can be sharp and it can also be a deep throb. I can be woken in the night by how sore it is… let’s just say it’s not pleasant. I am so fed up and exhausted, physically and mentally.
So when talking to Dr. Knobhead, as he shall now be known, I tried to explain my pain and told him I’d been told it was thrush. He told me that I should soak a tampon in yoghurt and insert it.
Insert eye roll here.
For a start… mister… have you ever tried soaking a tampon in anything and inserting it? No, you haven’t, because that is not the point of a tampon you cretin!
Secondly, you seriously want me to wonder around all day with yoghurt in my vagina. That is so impractical. It would be hella messy and don’t even start me on the smell! I’m almost crying laughing sitting here thinking about it. Yeah, that would go down really well in my new job, rocking up with a big white patch on my crotch, smelling faintly of yoghurt and smelling stronger as I curdled throughout the day… Fuck me, it’s absurd!
I get it as an old wives tale… and yes it probably would be soothing if you were sore and inflamed but really?! I’m coming to you for professional expert medical advice and that’s what you tell me? FML!
I also asked about how to manage the pain. He said there was nothing he could do or give me for that. Just keep taking paracetamol and ibuprofen (even my GP for thrush gave me stronger stuff than that).
So after that pointless and traumatic trip to the consultant I had a good cry on the way home. I contacted my GP again and spoke with her on the phone and explained that the medication wasn’t working and I was still really in pain. She then prescribes more treatment for thrush (but this point I’m pretty sure thrush is not what my problem is, but who am I to be listened to? It’s only my body after all).
The weeks dragged on.
I even went online and tried to find experts to get me some answers. No one was able to give me any insight. I was even told that I was probably imagining the pain. At this point I was feeling extremely hopeless, lonely and helpless.
My rescheduled appointment with the Belfast consultant was at the end of November. By this point I’d long run out of stronger painkillers and the thrush prescription I had been given that was meant to last me until the middle of January, I’d finished by the middle of November.
I went to my appointment with the Belfast consultant. I told him I was in pain and explained about the thrush. He said he’d take a look, have a feel, do an ultrasound and we’d go from there.
We did all of those things. He said it all seemed fine and he didn’t think it was cancerous.
Now, I don’t mean to sounds trite, but at this point in time I honestly couldn’t give a fuck if it was cancerous, a parasite, a virus or an actual alien growing inside me, it hurts, really badly, ALL the time. I’d just like to know what is wrong and why I’m hurting so it can hopefully be fixed. He was ready to send me out the door.
I said “But what about the pain?”
“We can’t really do anything about the pain.”
“But what is it? I can’t keep going like this.”
“What would you like me to do?”
“I don’t know! That’s why I’m here. Something else!”
He then said that he would schedule me in for a CT scan. He didn’t think it would show anything up. What the pain could be is scar tissue from my surgery. I could have a syndrome where the cervix is tightening and if that’s the case they could give me surgery to widen it.
So I once again left the hospital in huge amounts of pain, feeling like I hadn’t been taken seriously.
I went for my CT on Monday. I drank lots of lovely chalky tasting water and was given contrast. A fun Monday out… it’s a good job I don’t mind needles.
I spoke to women there who had been clear of cancer for years, I spoke to a woman who had been diagnosed 8 years ago, had been given the all clear and two years later she was back in and told that it was stage 4. She’d been managing it every since but wasn’t expecting good news from her scan.
Once again I am in this land on inbetween. It’s not cancer – which IS amazing, don’t get me wrong. I’m thrilled. Super super super thrilled! However I am still in pain and there doesn’t seem to be any light at the end of the tunnel. With this pain it feels like my chances of conceiving, if I ever want to, are circling the drain at a rapid rate. It’s hindering me from living the life I want to live. It’s stopping me from being quite the happy bubbly go getting Steph I want to be. The last 6 months have been amazing! I love my life at the moment. I love my job and living in Belfast and everything is great… but it would be so much better if I could enjoy it all without being in tonnes of pain.
I don’t know when I’ll get my CT results back, I’ll ring them for an update tomorrow but I don’t imagine they will provide much insight.
Oh so tired and fed up… but still going.