Walking with the Beast!

cervical-cancerThat seems to be a good name for it. After all, what do you call a story about cancer? Although I can’t take the credit for the title, it was actually from a wonderful blog I read along the way. It’s amazing how much you read and research when you get that diagnosis. Trawling through the net for hours at a time, and I don’t mean sat in a boat with 30lbs of fresh cod across my lap, trawling the internet I mean.

When was your last smear?  

Simple enough question, especially coming from a gyni nurse, may have been strange if it was on the check-out at Asda, halfway through scanning a pack of four scotch eggs!  I have to admit to being one of those silly, embarrassed and naive women who threw every smear letter in the bin and thought each time I hit the basket my name was miraculously removed from a database somewhere. I was momentarily stumped. After spending all morning looking for that missing football sock (why can’t boys sort their own PE kit out) I’d somehow lost the ability to think on my feet and had to admit to never having had a smear. So quick as a flash before I had time to come up with some lame but obviously very viable reason why not, the doctor suggested they did one there and then. It took all of twenty seconds and I remember thinking why on earth I had been so worried. I also thanked the stars above that I didn’t have my support knickers on (best £24.99 ever spent on QVC).

Congratulations you’ve passed; your HGV Licence is in the post.

That’s the sort of result you want, not “can you come back to clinic for further testing” So back I go. Still without the support pants, just in case. This time was for a colposcopy, a more in-depth check of the cervix. They use a die; it smells like vinegar and stings a little, but helps to see the affected cells. Apparently abnormal cells show up very white. You even get to watch it all on the telly, but I was never a fan of Sigourney Weaver in Aliens so I declined their very kind offer and instead chatted to the nurse about whether Stacey Slater should stay away from Max in Eastenders. Just as we were getting to the nitty gritty analysis of sleeping with your boyfriend’s dad, we were rudely interrupted. The doctor said she could see the abnormal cells and was pretty sure they were CIN111, 1 being the lowest 111 the highest. Ok, not good I thought. Well actually I thought “shit” but was being polite. She said she would do a biopsy just to be on the safe side but not to worry. Why is it when someone says “don’t worry”, it’s the only thing you CAN do like saying “don’t look round” and some invisible string attached to your left ear pulls your head in that direction.

Why is the phone ringing at 7 am on a Tuesday morning?

You know when you’re not fully awake and you’re trying to turn the alarm onto snooze. Your arm keeps reaching out, but the noise keeps coming, keeps getting louder and louder until you suddenly realise it’s not the alarm but the phone. Then panic sets in, who’s been burgled, who’s been rushed to hospital, do I want to answer it!!!!!  But of course you answer it. The call was from a nurse specialist (cover name for a Macmillan nurse, I was later to discover, trained by the SAS for covert telephone missions at 7 in the morning). “We have your biopsy results and the doctor would like to talk to you, can you come in on Thurs” ehm “yes” best to keep things short I thought. Now I don’t know about waiting times where you are, but being given 2 days’ notice for an appointment with a consultant spells trouble, actually  t   r   o   u   b   l   e  spells trouble but you know what I mean.  When a letter came the next day saying bring someone, it started to SHOUT trouble never mind spell it. My wonderful, always trying to be positive hubby, kept saying it would be all right. I knew what was coming, I knew what would be said, it’s that strange swirling in the pit of your stomach, that weird intuition you get when you know exactly what’s going to happen next. Why do you never get it on a Saturday night watching your six carefully chosen numbers, you know the ones; Mums birthday, 1st house number, how many legs the dog has?

Meeting the Beast                                      

So bright and early. Carefully scrubbed. Legs shaved. With more than the normal amount of daytime make up on, off we drive for the appointment. I was on the promise of a slap up lunch afterwards. Think that was one of those childhood bribes similar to “if you behave at Aunty Rita’s I’ll get you a new toy”. I remember saying to my husband “if it’s cancer then I’m having a pudding” ever the optimist, (food always was my toy).  We were taken into a small office and greeted by a very cheerful lady, all smiles and pleasant handshake. I remember feeling very warm, unusually so, and asking if I could take my coat off. So there we sat as the doctor walked in, a small man; well dressed, with an agreeable smile, who suddenly and relatively quickly introduced to the beast. “I’m afraid its Apple-Crumble_advice_in_recipecancer” I remember thinking, “ok, thought so”. Turning to look at hubby his eyes had suddenly misted over as a few small tears started to prick at the corners. I remember stroking his leg in that instinctive way we do when we’re trying to reassure someone that it’s going to be ok. Within seconds the technical stuff started; pre op tests today and an MRI next week to check on the size and placement of the cancer. Ready for a cone biopsy in 2 weeks when they would hopefully be able to cut away the cancer. It all sounded so matter of fact, so normal and run of the mill, and all I could think of was, Cancer, Cancer, Cancer. Needless to say I had apple crumble and custard for pudding!

Better sort out my cupboards

The realisation sets in pretty quick. This is serious, not the usual taking to your bed with a humungous cold or spraining your ankle after too many glasses of wine. This was different and set off thousands of little light bulbs in my head. Do I have life insurance? Whose name is the car loan in? Does Hubby know its white socks for indoor PE and black for outdoor, does he know Connor never eats cabbage and Jacobs crammed when he’s tired? What will they do without me? Should I write a letter for each milestone I could miss, 18th, passing their driving test, their wedding day, damn this is hard. Why do I always look on the black side? Maybe I’m subconsciously preparing myself or do I think the worst so that anything better is a bonus? As for my wardrobe, god that needs clearing out, what if I’m bedridden and the door suddenly opens spilling onto the floor enough rubbish to bury four small children and a trio of pygmy ponies.

Buried alive with “Now 68”

I’m sat in the hospital waiting room, dressed or should I say undressed in the most unflattering pale green gown. A convertible version, you know the type open topped although in this case open backed. My dignity only slightly helped by a starched blue wrapNow_68_UK_Cover_Art around, three sizes too small that only appears to meet at my nipples rather than across the front, ohh the humiliation! The radiologist comes out and asks for any special requests, music wise, I was waiting for her to hand out a card saying “Donna’s Disco’s, weddings a speciality”. The music apparently is to help with the noise generated by the MRI, so after a couple of recommendations settled on “Now 68” I like a bit of variety. Let’s just say the machine wasn’t built for the larger bust. I lie on the bed with my arms and legs secured with belts as I’m pushed towards the machine. All I can think is “that gap ain’t big enough” and after a bit of less than graceful cajoling, squeezing and definitely not gentle manovering I’m in. Only my head is covered by the oversized headphones, which are slightly off centre. Britney Spears suddenly rings out in my ears and so it begins.  A full box set later, it felt like 2 hrs worth of ‘inside the Doncaster pit’. The noise of the machine was so bad no amount of music would have covered it. It was over, of course they don’t tell you anything there and then, but me being me, when she said “Good Luck” immediately thought, that’s it the Beast has invaded, it’s everywhere!!!!  A phone call a few days later told me the cancer was confined and was exactly where they thought, so the ‘Good Luck’ was actually just ‘Good Luck’ I’d never make it as a translator!

Not you’re usual Sleepover

So here I am 7.00am on a wet, windy November morning. Still feeling the juggernaut of emotions from last night when I said goodbye to the boys. They were packed off to sleep at the grandparents’ so they could go to school as normal. I remember thinking just one more kiss, just one more cuddle as I smothered that beautiful soft cheek skin with all the ferocity of a mad woman. Which is in fact what they called me as they wiped their faces with their sleeves, kisses are not cool when you’re a 12yr old boy, especially from your mum.

The bed is one of four in a bay, I was the first one there so picked a corner bed, near the window (don’t ask me why) and it’s just me and hubby for a few minutes. We’re not saying much, just the usual nervous small talk you get when you’re too afraid to really say anything out loud. Then one by one my other room-mates start to arrive. There’s that polite hello or acknowledging smile as each of our partners are asked to leave.  The initial “it’s cold this morning”, “should we get changed then” through to the name swapping and obligatory “what are you in for?”  I think it’s a typical female thing that you instantly build up an affinity with complete strangers, who are laid in bed in their finest specially bought matching sleep wear.

Nervous tension seems to build into manic humorous stories, Lena’s saying not to make her laugh as she’s in for a Prolapse op, Jane’s cursing her new slippers as her hubby who bought them thought she was 2 sizes smaller and Esther’s deaf in one ear but is laughing anyway just to feel part of it. We’re all visited one by one by our Consultants. Without thinking you automatically adjust yourself, neatly straighten out the sheets around you and smile politely as they stand at your bed flanked by juniors. It resembles a scene from TV, like a royal visit when the 2 flankers are actually body guards and I was in two minds whether to get out of bed and curtsy.  Four hours later and the nerves are reaching fever pitch, the anaesthetist has been round, tried but failed, to reassure me that I’d wake up and now the porters here to take me to theatre.  Esther’s been back an hour and is still out for the count, Jane’s still missing and Lena shouts “good luck” as I’m wheeled out of the bay,” If I’m not back by 6, call out the mountain rescue” I shout back.

Who hit me?

I come round from the anaesthetic in the recovery room. Overjoyed to be still alive. Suddenly I’m gripped by a sudden feeling of acute cold, my teeth were chattering so much it actually hurt.  I had a thumping headache and felt like I’d done ten rounds with Frank Bruno. I was assured this was normal and that everything had gone really well. Later that evening the consultant came again, saying how well it all went. Although I wasn’t sure he recognised me from this angle! I listened intently as he said he had cut out a large cone shaped part of my cervix and thought he had removed all the cancer. He said he had also found the sky remote and 3 Polish Dentists but couldn’t be sure until the test results came back. He didn’t mean about them being Polish but if they had all the Cancer!  It felt like a very long night from then on, nurses coming to check obs every hour, checking how much blood I was losing, levels on the catheter bag, god send for someone as lazy as me. It’s amazing how liberating peeing at will is. They seemed a bit concerned that my bleeding wasn’t stopping and continued the checks the following day. As lovely as the staff are it’s quite disconcerting having someone check your bits at regular intervals. I remember thinking “it’s my lady garden, not a public park”.

Handkerchief-knotMy overnight stay turned into 3 days as my bleeding finally slowed down. They removed the padding from inside and I swear it was Debbie Mcgee stood in front of me as she carefully started pulling bit by bit. It seemed to go on forever, like one of those magic tricks, as 245 silk flags finally fell to the floor.    I said my goodbyes as hubby picked me up, and hesitantly walked my way to the waiting press, sorry got carried away there, I meant the car. I felt exhausted and very very sore but glad to finally be rid of the beast. I just hoped he hadn’t left any nasty footprints to bite me again further down the line.  I recuperated at home and nervously waited the results of the tests. That’s the problem with Cancer, the waiting. Every procedure means another follow up call to tell you what was found, each gap spent thinking the worst, so many what ifs.  The call came a few days later from the Macmillan nurse. “Good news, we’ve got it all and your margins look clear” (the surrounding area has to be a certain percentage of clear cells). I felt a bit numb. Unsure how to react. Yet this was the best news possible.  She did mention that my treatment team would be meeting again to discuss the results but didn’t think I would need any further treatment, “thank god” I thought as I joyously thanked her for ringing and continued to watch Under the Hammer on BBC1.

Why more?

A week later, Jane my trusty Macmillan nurse, called to say the team had met and discussed my results. They felt that statistically, because of the size of my tumour, it should have spread and to be on the safe side, ‘a belts and braces procedure’ she called it, they wanted to do a Hysterectomy. They would also remove some lymph nodes to check there was nothing sinister seeping its way through my blood stream. I felt as if the rug had been pulled from under me. I thought that was it. I could enjoy Christmas now the beast had gone but here I was back into limbo and once more fear started to build. I knew I was lucky that I already had 2 children, easy to forget the many mornings screaming for them to get out of bed or the countless times I’d banished them to their rooms for whatever their latest stunt had been. The sudden realisation that I would never have another suddenly seemed unfair, then reality hit as Connor stood on Jacob’s hand starting world war 3 and that feeling suddenly vanished!

I read up and researched as much as I could and frightened myself to death with information overload but knew it was for the best.  This was my only hope of being completely clear. I was to have the surgery at St James’s in Leeds, a specialised Cancer Centre. An appointment was made for me to meet the surgeon the following week.  We drove to the hospital armed with a route planner, street map of Leeds and a big bag of fruit pastilles. Suffice to say we got lost and had to stop 3 times to ask for directions.  When we finally arrived and made our way to the ward I was suddenly gripped by the realisation of what was happening and felt very clammy and nauseous, either that or I hadn’t checked the sell by date on the fruit pastilles. I met the doctor who was in-fact a Mr., (Mr stands for very important man) He was very well groomed and spoke in a gentle southern tone, obviously not from Burnley. He explained the procedure and about what was found at my last surgery, he never mentioned the Polish dentists thankfully. I then went for the mandatory pre op checks before leaving with a date set for early in the New Year. At least I would be here for Christmas. That feeling of “but will I be here next Christmas” started to rise again, quick I thought, get in the car.

P.S. only had a Macdonalds this time, Hubby obviously immune to bad news now.

The end is nigh, surgery I mean.

The hospital is awful, nothing like the lovely local one I had been used to. The staff although nice were in short supply and extremely busy, the ward was full.  I suddenly felt very alone and very scared. This was major surgery and my Dawn French figure, the one I have been telling people was in fact a body suit, just might not cope this time round. I nervously awaited the anaesthetist. I studied his face, was he as nervous as me? Was he going to say he couldn’t do it?  Halleluiah, apparently they carry out gastric bypass surgeries here and I’m more like twiggy to him. I love this man and if I wasn’t having a hysterectomy I would have had his babies.

The atmosphere on the ward was different here, lots of side rooms, 24 woman all with cancer, hardly party central. Although it’s amazing how easily we carry on and cope with whatever treatments thrown at us, all fighting to keep going and trying to make light of it all. Coming round from this surgery was different to last time and for the next few hours remember slipping in and out of sleep, or what counts for sleep, heavily sedated and being monitored on an hourly basis.

The following morning I felt like the surgeon must have been kneeling on my shoulders during the op; the images of how and why heDan1 would be doing that were really not nice. however I was reliably informed this was in-fact trapped wind and is very common after abdomen surgery. I have never in my life felt pain like it and was told the only way to ease it was to keep moving, easier said than done. That first morning I was gently lifted out of bed and taken for a bath, ohh the indignity of it all. I’m stripped completely and coaxed into a bath chair then lowered slowly into a warm frothy pool. Water gently cloaked my agonisingly sore body.  The nurse bathed me, and I mean all of me, although it’s amazing how at the time it seemed completely natural and not at all embarrassing to be washed down by a complete stranger. I was then lifted out and towel dried by a Brazilian exchange student called Paulo, bronzed and with an exquisitely toned body after his 6 mth training with Leeds Rhinos. Actually I think that was the last of the anaesthetic wearing off because it was in fact a 59yr old auxiliary nurse called Gloria. Who then insisted I walk unaided back to my bed, re-clothed I must add. I took small cautious steps, feeling the agonising wind pain with each faltering step and eventually collapsed onto the side of my bed. Gloria came to help me back in. She pulled the curtains round the bed as she was called away. I was left stranded on the bed, squirming in pain, with the tears rolling down my face.  I couldn’t reach the locker to ring for help, which would have been pointless anyway even if I could reach, the buzzer on mine didn’t work.

I opened my mouth to shout for help but the pain seemed to swallow my voice and I could make no sound, nothing that carried anyway. So there I laid for what seemed like hours. It was probably only about 20 mins really, until Gloria cheerfully arrived back saying “are you not in bed yet?” Suffice to say I forced myself to walk as much as I could, I had a circuit around the ward, and carried my stomach as if it was a bag from one end to the other, anything to get me out of there as soon as possible. Hubby made the 80 mile round trip on a daily basis bringing friends or family with him so I was never short on visitors but was desperate to get home. They said my wound was healing well and my continual walks were paying off as seven days after surgery I was allowed home

The final slog

Three days after leaving hospital the District Nurse came to take out my metal clips.  I lay there flinching as she carefully removed 61 staple like clips, bet Kate Moss would have only had 30. She thought the wound looked good but would come to check in a few days just to see how I was doing.  It felt so good to have them out, they had started to feel very tight and uncomfortable. I was able to move about now, somewhat slower and more delicately than usual but still I was on the mend. That same afternoon I made my way upstairs. Step by step, pausing for a breath until I reached the bedroom. As I sat on the bed I glanced down and slowly saw my scar ripping open before my eyes. It was just near the top and only about an inch long but enough to make me scream with fear. We immediately rang the District Nurse who landed back within the hour.

The Nurse, whom I’m convinced would make a great assistant for Dr Who, as nothing fazed her, calmed me down and said this can sometimes happen and not to worry. There’s that “don’t worry” thing again, don’t you just hate it. She dressed the wound and said she’d be back the next day. I then spent the rest of the evening held in the same position so I didn’t open it anymore. I woke the next morning and without thinking put my hand on my stomach and then tensed suddenly as I realised my nightie was wet through.  My wound had opened further and a blood-infused substance had been oozing overnight. Luckily the District Nurse was due at 9.00. As we waited for her to arrive panic was rising. I imagined my whole stomach slowing opening, what if my insides came out? could I put them back? What does your small intestine look like? I ended up needing a draining pouch as the fluid was infection built up within the internal walls. This had to be emptied on a daily basis, another job for hubby, who complained he didn’t remember this being mentioned in the wedding vows.

This went on for 3 weeks with the nurse visiting daily. During which time I was slowly gaining strength. The nurse and I put the world to rights over our daily chats with coffee and Jaffa cakes. It was within all this I had my last and by far best call from the Macmillan Nurse. The Cancer hadn’t spread and I would need no further treatment. The Journey was over and I had come through.  Slowly but surely I regained my strength and my youthful figure, I made the last bit up but I can dream can’t I and 3 months after Surgery I returned to work and the resurrection of my boring, normal, ordinary, everyday life. Feeling blessed to have met and beaten the beast.

And if the bugger returns, I’ll beat it again otherwise my names not Claudia Schiffer!!!!!!!  Jo_Trust_logo

15 thoughts on “Walking with the Beast!

  1. Pingback: About |Welcome to a new friend: helen midgley | Hey Sweetheart, Get Me Rewrite!

  2. Oh Helen I loved this! It brought back memories of my own journey but without the hysterectomy. Well done to you! You sense of humour was wonderful! Thank you for sharing your journey 🙂 xxx

  3. You are exactly right Helen and your humour is really a credit to you.
    4 years on and I am ‘cured’ they say lol
    I have issues to deal with from my treatment but Im still here and thats more important.
    I hope too things are good for you now.
    Again, thank yuo for sharing xx

  4. Fab read. Well done. Brings memories back for us who have walked with the beast but, as others have said, hopefully it will be read by others who see the need to go for that overdue smear… X

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