I've not been feeling up to blogging every day do thought that I would do a round up of the week. It has been a busy week, full of surprises. Compared to this time last week I can't believe how things have moved on. So here goes....
On Monday surgeon C came to see me. She specialises in pelvic floors and botoxing (if that's the right term). She had 2 other doctors with her, one was obviously a junior as she was scribbling away in the notes and didn't speak.
She said the Surgeon B had asked her to come and take a look and she didn't ask many questions. It was straight down to the 'business end' and her finger was in before I knew it!
She examined me very slowly and carefully went around my back passage saying that she wanted to see if we could locate the exact spot where the pain was coming from.
Millimetre by millimetre she went until "aaaarrrrrgggghhhhh, that's the spot, that's the spot" I screamed. "What here?" Surgeon C asked. "Yes, yes, yes, yes" I gasped "that's it, that's it". To anyone walking past they would be wondering what on earth was happening behind the curtain as it all sounded a bit dodgy!
She asked her if the other doctor with her could have a feel. So many doctors have had their finger up my arse at some point over the last year that one more doesn't matter so in he went. Surgeon C guided him, "it's just by 2o'clock" I remember her saying and soon I was writhing around on the bed, shouting "that's the spot" over and over again until he stopped and I lay curled up on the bed in agony.
Surgeon C said she had felt a lump and that she wasn't sure what it was and wouldn't know until she got me down to theatre. She said she would confer with Surgeon B and see whose list I could be squeezed onto, and with that she left.
A lump? A lump of what? I thought. Could it be cancer? Surely not. If it was cancer then something would show up in my blood tests. But what was it? And how could a CT, MRI and an Anal Ultrasound scan fail to see this lump? And Surgeon B didn't feel a lump on Friday. Or maybe she did and she just didn't say.
But whatever this lump is means that there's something there, something that can be fixed, something they can sort out. Something is surely better than nothing?
I couldn't dwell too long on the lump as I had another battle to face. The Benefits office. I have been trying to apply for ESA over the last few weeks and it is a complete nightmare. I rang them last week and one person said I was entitled to it, another that I wasn't and the whole thing was doing my head in.
I decided to ring again and was told that they had confirmed with my GP that I had certificates to cover the whole period (which I already knew but because they kept losing my certificates they kept questioning it). Now they were questioning whether I had paid enough national insurance to qualify.
Although I've been very unwell I have worked for the last 3 years, nearly full time so I couldn't understand why I hadn't paid enough NI. How much did you need to pay in? And how do people get benefits when they've never worked a day in their life? But anyway, don't let me get started otherwise I will go off at a tangent about benefits and the government and politics and the sorry state our country is in.
Feeling defeated I hung up and looked at the form that I needed to complete. It was another form from the benefits people designed to be so difficult you give up and don't bother to claim. I had been filling it out for days, little by little, each time it sucked a little bit more life out me. I managed a few more pages before giving up. I decided to finish cross stitching a card for a friends engagement. She had only gotten engaged a few weeks ago so it's not like the card was late or anything! So here it is, the finished article.
I was worried though about this bloody form as I had to get it returned by Thursday otherwise it would hamper my benefits claim. I was starting to get seriously stressed out.
I set my alarm for 6am on Tuesday morning. I figured this would be the best time to complete the form as all my night time meds would have worn off and I didn't get the daytime ones until 6.30/7am so I would be at my most alert.
I sat and I wrote and I wrote. I gave them all the information they had previously asked for; all the details of my illnesses, my medications, my hospital visits (too many to list I wrote!) etc, etc. After nearly 2 hours I completed the form plus 4 additional A4 sheets where my answers didn't fit in the stupid, tiny boxes.
I had done it! I was so proud of myself. I was worried though that it could go missing at the benefits office so asked the Charge Nurse if I could photocopy it before posting it. A friend came to visit me and to be honest I was exhausted from battling the benefits system and from the pain and wasn't very good company.
She didn't seem to mind and we just chatted about this and that and everything and nothing. She put me in a wheelchair to go and photocopy the form and to get a birthday card and gift voucher for someone's birthday. Even in hospital I hate to miss birthdays. I think I've only missed one and I feel really bad about it.
My friend said she would post the benefits form by recorded delivery do that we could prove that they received it in time so she took it with her, along with the birthday card. Fingers crossed they both arrived ok.
After she left I decided to give in to the exhaustion and fell asleep on the bed for the rest of the afternoon.
On Wednesday Dr10 came to see me. He specialises in anaesthetics and pain management. Dr7 had asked him to see me to discuss ways of managing the pain. We discussed the pain, it's history and how it was now and what was relieving it. He suggested trying another painkiller that works on nerves and so prescribed what he calls a 'moderate' dose. I had used this medication in the past and thought it was quite a large dose and was worried that I would be zombified and licking windows but he doesn't think that I will be. Lets see.
He had come to consent me for the investigation under general anaesthetic (IUA) which was going to take place on Friday. Surgeon B and Surgeon C were both going to be present and have a look at my 'front and back passage' he told me. Is never heard it referred to as a front passage before and it made me smile. Don't know why, it just did. Maybe this place is sending me mad! But it was going to take place on Friday so things were definitely happening.
I decided I would ring the Benefits office again to see whether they had decided that I had paid enough NI or whether they had lost another document. I could not believe it when they said that my claim had been approved, that 2 weeks had already been paid to me and that the remaining 14 weeks would be paid within the next 3 days.
I nearly fell off my chair. Not only had I found out that morning that I was going to theatre at the end of the week but my battle with the DWP had paid off. Literally!! Could the day get any better? Well it did.
I was sat comforting the patient opposite me. She was a young girl who was very ill and had a turbulent lifestyle, no family in the country and no support networks around her. She would get so worked up by things I would often sit with her, striking her hair, calming her down, sometimes rocking her like I do Big Girl when she's upset. Anyway, as I was sat stroking her hair and wiping her tears away I looked around and who did I see sitting by my bed? My parents!!
I couldn't believe it. They hadn't told me they were coming (although I had a feeling I would be seeing them soon and had little gifts in my locker to give to them to say thank you for all their help). I smiled and mouthed 'give me 5 minutes' so that I could finish calming down my friend.
When I saw that she was asleep I went over and hugged them both. It was great to see them. They had bought a card and a gift from my Nan (lovely perfume) and a bingo game. I want to try and do a bingo/quiz night in the dayroom with the patients. You know me- always organising something or other!
They were there when Dr7 did his ward round and it was all very 'pleasant'. I told him about Dr10 coming to see me and Surgeon D and about the lump. Dr7 smiled and nodded and still, after all these other surgeons had said there was definitely something there, something they thought was causing the pain, he went on about seeing the physiatrist and exploring other ways to deal with the pain.
I know he has to go on about it otherwise he would completely lose face because if there is something there, a real cause for the pain, then it's not in my head and that would mean that he was wrong. Totally wrong. So I just agreed and grit my teeth. It's not worth the fight. I know I'm right and it's not in my head and so does Dr7, he just can't admit it.
Anyway, my parents were down so I took advantage of having my Daddy's strong arm to lean on and we went for a walk. I was quite worn out and in a lot of pain but I wanted to get some fresh air. I also wanted to see what they were selling at the back of Costa!
It was clothes and I got some lovely thermal socks that are a fiver a pair in Tesco for only £1. I also got something for Kitty but I have decided to send that to Santa! So I can't say what it is.
It was soon time for them to go and collect the kids but first they were stopping off at morrisons to do some shopping as I think the cupboards were bare at my house. I requested some custard pots and some fruit pouches as well as my usual pasta mug shots. My eating is getting better every day. As long as I only eat small amounts then I am tolerating most things and don't have much pain. Surgeon B said that she thinks that I have an irritable bowel and tummy and that it will always be a bit grumpy and need TLC.
Because my parents were at my house and looking after the kids it meant that Hubby could come up to the hospital in the evening after work. We very rarely have any time together so I asked the Ward Manager if it would be ok to go out for an hour or so? Or course, she said so I got dressed in real clothes and went out on a date night with my Hubby.
So where did we go on our date night? The first place I wanted to go to was Harrow on the Hill. I had been looking at it from the dayroom for weeks and wondering what it was like up there. That's where the big posh school is and all the fancy expensive houses are. So we drove through the little streets, past the church whose spire dominates the landscape, past the school outfitters where the uniform is something along the lines of Eton (or Harry Potter) and past all the huge houses. I was so excited to finally see up close what I had only seen from a distance in the hospital that I think my Hubby thought I was a bit mad.
We decided to really go to town and grab a bite to eat at, wait for it, the Harvester. No fancy Italian bistro, or little gastro pub- the harvester. For a couple of reasons- some of the other patients had been there on their day release so I knew it was nearby, they had said the food was good and it was going to be quick and cheap. So it ticked all the right boxes.
And to be honest I didn't care where I went. I was out of the hospital, having a date night with my hubby and it all felt great. Like we were a normal couple out for the night together. Never mind that under my cardigan sleeve were 2 hospital wristbands (1 has all my allergies, that's why I have 2). Never mind that I had to be back in time for the bedtime drug round. I was out and I felt free and I could pretend for an hour that these last 4 weeks were just a bad dream.
But all good things come to an end and after a few chips and one or two cheeky sips of shandy it was time to go back. I didn't want to be late and face the wrath of the Ward Sister!!
I was do tired though that I was falling asleep in the car and so Hubby took me up to the ward, helped me to change into my pjs and then he gently put me to bed and tucked me in. I don't remember him leaving because I must have fallen asleep the minute my head touched the pillow. I was completely exhausted from the day. But it had been a great day.
Thursday I think I had an 'energy hangover' as Kitty calls it. She was due to visit that afternoon to take me to Hobbycraft but I text her to say I was too worn out to go and that I was just going to rest. My parents came to visit again while the kids were at school and even though I knew I might not see them again for ages I asked them to leave early so that I could go to sleep.
I was just so tired. Tired to the bone. I think that all the battling with Dr7 and the benefits people had just taken it out of me and my body was worn out. I'm starting to listen to my body more and if I'm tired I lay down rather than try to keep going. It's only taken me 5 years to learn that lesson!!
I did have an episode on Thursday afternoon but it wasn't as severe as previous ones and the gas and air sent me to sleep. I woke up clutching my mouth piece but it had been disconnected from the canister, obviously by a nurse while I slept.
I was told that I would be the first on the list for theatre on Friday so it meant that could go down as early as 8am. Having been so tired I hadn't showered on Thursday so I set my alarm for 6.30am to give me time to get up and have a shower before being called. I didn't want the Surgeons prodding and pocking 'down there' if it wasn't clean and tidy!
So that's my round up of the week. I'm sure there are bits that I've missed out which is why I try to blog daily as my memory is shocking at the moment. I'm sure it's all the pills I'm on. I will do another post detailing what happened on Friday as I think this one is long enough!
NB x
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