Thursday, 23 July 2015

Post operation check-up

This week I had my post-op check-up. This should be my last trip to Brighton to see Mr Thomas. Although if any issues do arise then I can return as an outpatient.

With all the issues I’ve had I wasn’t sure what the outcome of the trip would be. Would I need to go back in at some point for further surgery, would Mr Thomas be able to figure out what the “hole” issue was?

Although I’d been hoping to see Mr Yelland as well no appointment had been made and when I rang in the morning none were available. Arrangements had been made for Liz, the specialist nurse, to examine my breasts and report back but when I went in for my appointment she wasn’t around. If I feel I need Mr Yelland to inspect his handiwork then I can make an appointment, I haven’t decide if I will or not yet.

If you want the simpler description of the trip to Brighton jump down the page to the short version.

The Long Version of the Trip There
My appointment was at 7:30 in the evening. Originally we’d planned a few days away staying in Portsmouth as my wife, son and I felt we were due a break. With my son in hospital recovering from surgery I had to cancel our hotel booking and make the trip on my own. It was going to be a long day.
I set off from Brighton just after 3:30pm, with a quick stop to fill up with petrol the SatNav told me that I would arrive at 6:40; plenty of time before my appointment.


Leaving the petrol station I immediately went wrong by getting in the wrong lane and ended up heading off into the depths of Bristol.

Noticing a sign for Bath and Chippenham I decided that I’d head in that direction and get onto the M4 a bit further along the route.

Not being familiar with that route I waited until the SatNav gave up telling me to turn around or head down roads that would take me back the way I’d come. Eventually I decided that it was taking me in the direction I wanted to go and so began following its instructions.


Before long I found myself back at the M32 motorway and about to join the M4 at the point I would have originally joined it.

Finally on the M4 I settled in for the miles and miles of motorway ahead of me.

Over an hour later the SatNav pointed me in the direction of a junction and I wondered which way it was taking me. Quickly I realised it was taking me towards the one place I’d hoped to avoid. London and the M25.

By the time I left the M4 my arrival time was just after 7pm, not a huge issue as it still left me 30 minutes until my appointment; then I hit Bracknell and my journey really began to slow down as I hit roadworks and lane closures and lots of slow moving traffic.

Leaving Bracknell behind I’d not lost a huge amount of time but I began to wonder just how much time I’d have to play with.

The M3 wasn’t really that busy but once again the odd bit of roadworks slowed me down. Eventually I reached that great and wonderful piece of road engineering called the M25 motorway that surrounds London. Heading towards Gatwick and the junction that would take me towards Brighton I soon had the delight of the variable speed limit system. With each mile I travelled my arrival time got later and later. By the time I’d left the M25 and was finally heading towards Brighton I was due to arrive at 7:20, not much time to spare.

The final part of the journey to Brighton went without incident and I finally arrived at the Nuffield with just under 10 minutes to spare. I had to wait while the receptionist dealt with another patient but finally I found myself sitting down to wait for Mr Thomas, who I passed as he collected another patient from the waiting area.

And so to my actual appointment.

The Short Version of the Trip There
Left Bristol just after 3:30pm, arrived Brighton 7:20pm for a 7:30 appointment. Took the scenic route to the M4 motorway, roadworks at Bracknell and on the M3, fun time driving around the M25 and then a much nicer drive from London to Brighton.

The Appointment
I’ve had a couple of examinations over the last few weeks including the one where I inserted a tiny speculum myself. This time all I had to do was lie on the couch with my legs apart and, with a nurse acting as chaperone, let Mr Thomas get on with it.

Glancing over at the metal table to my right I noted a number of sticks with swabs at the end, looking like some form of medical drumstick or medical match stick. I hoped that nobody would be beating a rhythm on me or lighting my fire.

Next to these had been placed a plastic bag which I knew held the speculum. Beside this were a number of tubes of Optilube, ready to make inserting the speculum easier.

I was handed a mirror so that I could see what Mr Thomas was doing. He inspected my neo-vagina and declared that he was happy with what he could see, noting the vaginal entrance and urethra as he had a look.

Then he turned to the table and picked up the speculum and took it out of its packet. I’m sure that I must have gone pale underneath my foundation at the sight of it.

It was ginormous, huge, massive, a skyscraper, the Empire State building. No way was that going to get inside me. I’d be split in two. There would just be a pile of innards sprawled over the couch. 

They’d be scooping me up in a bag.

As he reached between my legs I tried to relax while bracing myself for the shock of what was about to happen. Shock it was.

My eyes must have popped out of my head as he inserted the speculum inside me. I gasped at the sensation.

Then I grunted as the speculum went in further and pressure enough to crush the hull of a nuclear submarine was applied to my nether regions.

Words cannot express that moment. No, honestly, I was completely unable to speak. Although I’m not sure what I would have said even if I could.

Eventually the pressure eased. Mr Thomas noted that I had some granulation tissue but other than that everything looked fine.

“We can treat the granulation” he said, before turning to ask the nurse for some silver nitrate sticks. A brief search was required as there were none out at that point.

“This might sting a bit” I was informed before he began to treat the granulation. In fact it didn’t sting, at least not at that point. On the driver home I found myself experiencing a few twinges, which I’ve not had for quite a few weeks now.

Mr Thomas left me to get dressed and I had a brief chat with the nurse before I re-joined him in the other room.

When I’d first gone in to see him Mr Thomas had signed and then handed me the letters and records I would need when sending off for my Gender Recognition Certificate. It’s surprising that something that will make such a big change to your life contains so little detail. Confirmation that you’ve had irrevocable surgery and a hand written record of the procedure that was performed. About half a dozen pieces of paper.

Now as we again sat together he asked me how many times I was dilating and how much depth I was achieving.

In answer to the first question I explained about Rhys being in hospital and that although I’d reduced to twice a day I was sometimes only managing once a day.

“They are only guidelines, don’t get stressed by them” he told me, something that Liz had told me weeks before.

In response to the second question all I could do was give an indication of how much of the dilator I could get in. Mr Thomas proceeded to instruct me on a different way to insert my dilator, enter at a 30 degree angle until I feel resistance and then drop the dilator down and push upwards; tracing a semi-circular path as I put it in.

When creating my neo-vagina Mr Thomas had given me 5 inches of depth. The speculum that he had used had achieved 4 inches and so I should be able to get deeper than that with the stents I was informed. Hmm, only time will tell, and on my first attempt after getting home I measure that the stent had gone in about 4 inches.

The Journey Home
With my appointment at an end I made my way back to my car and with my stomach rumbling I started the journey home to Yeovil where I was going to stop overnight and check for post and that there were no problems with the house.

The journey back was a lot simpler as there was a lot less traffic. At Fleet motorway services on the M3 I stopped in order to get something to eat. Sat in the car with my goodies I enjoyed a portion of Harry Ramsden’s fishbites and chips. A welcome treat.

Around 11:30 I finally got home and after chilling out briefly with a drink I made my way to bed to end a tiring, but long awaited day.

Monday, 13 July 2015

Good God!!!

I think I've had my first proper case whereby my appearance caused a reaction in someone on the street.

Before we left Yeovil, yesterday, to come to Bristol I need to pay a visit to the little girls room. We'd been out for lunch and I decided that I wasn't going to use the facilities in Pizza Hut as the place was crowded and I didn't want to have to use what I know is small washroom. I also didn't want to go all the way back home before setting off again. The compromise was to stop off at one of the public conveniences in the town centre that is next to a car park.

A five minute drive saw us at the car park and Rhys and I made our way to the toilets. They are all individual with some being unisex, some being for disabled, some having baby changing facilities, some being women's and some men's.

I popped into one of the unisex toilets while Rhys disappeared into a men's.

Coming out I assumed that Rhys would have made his way back to the car and so started walking back.

As I was doing so I heard "Good God!". Turning I found a guy staring at me as he was heading to the toilets himself.

For some reason I'd shocked him, I can only assume that he'd realised that I was a transgender female and couldn't help vocalising his shock for anyone to hear. I couldn't be certain that was why of course and with needing to get back to the car so we could set off I didn't have the time to stop and ask if he'd been talking to me.

Of course his shock was probably as great as mine, there I was walking back to the car minding my own business when this scruffy guy with a beard and the appearance of a trainspotter (I apologise to any trainspotters reading this post) comes out with a comment that could only be addressed at me.

I have a feeling that this is the second time my appearance has caused a verbal reaction from someone but I can't be totally sure. This time though I'm sure.

Not the ...

So with another trip to Bristol underway for Rhys to have surgery we're having to deal with the who am I questions being asked by doctors and nurses.

Yesterday evening we were sitting by Rhys' bed and one of the hospital registrars came to talk to us. As usual we were asked who we were. Turning to me he asked "are you Mum?" Pointing towards my wife I shook my head "No, that's Mum".

"So you are?"

"I'm Not the Mum" I replied.

The registrar looked at me for a few seconds as he digested this piece of information and I could see the cogs whirring in his head.

"Oh, OK" was his reply, finally, as some sort of understanding occurred.

Later the nurse that was looking after Rhys came in to do some paperwork. My wife wasn't around at the time so when it came to names her's was already written down as Mum. We didn't bother explaining my exact relationship just gave my name and my mobile number.

I've lost count of the number of times that people that have seen my son and I together have referred to me as his mum. As much as I appreciate it, and I understand why people do it; there is no mistaking that he is my son as the resemblance between the two of us has been pointed out by people and I'm female, I am not his Mum, that's my wife. Still when I said to my wife that I should have a tee-shirt printed with Not the Mum on it she didn't argue against it, neither did she make any comment when I said that when people ask who I am we can use Not the Mum.

I might not persuade them to refer to me with some form of variant of Mum instead of Dad but Not the Mum is a good compromise.

Tuesday, 7 July 2015

Someone to Watch Over Me

Three weeks ago we went up to Bristol so that my son could have an operation to remove a meningioma. The operation was cancelled and we've been waiting to hear from the hospital about the rescheduled surgery.

The week before last Rhys had an appointment at our local hospital for an MRI scan. It was to check the area where he'd had a malignant peripheral nerve sheaf tumour removed last year and resulted in his spending a lot of his summer in Bristol having chemotherapy.

Last week I spoke with his consultant's secretary to see if the results were back. She arranged for his consultant to give me a ring which he duly did. The report from the radiologist had been sent to Bristol for the doctors there to take a look at and produce a final report. He promised that as soon as the report was back he would ring us.

Yesterday afternoon the phone rang and it was his secretary. Could we come into the hospital for 4pm to see Rhys' consultant? Of course we could.

Rhys wasn't around at that point. He's been helping out and the playgroup that he volunteered at during his childcare course at college. We would have to pick him up from there when he finished.

Coming off the phone both his Mum and I knew that we weren't going to be receiving good news. You don't get asked to go into hospital to see a consultant to receive good news. As much as we tried to be positive and come up with different reasons as to why his consultant would want to see us the reality was we knew that we were going to be told that there was something wrong. Whether it was to do with the tumour from last year or something else we didn't know.

After completely missing my son at the playgroup because he'd come out a different door and had a lift home we drove back to the house and collected him.

At the hospital we made our way up to the children's outpatients clinic. We actually went in separate lifts because I thought the one that Rhys and his Mum got in was going to go down a level first. In the end they got to the clinic before me. Rhys' consultant on seeing them asked where I was, another sign that the news wasn't going to be good.

After about half an hour waiting while some other patients were seen we went into the consultant's room along with the Sister that was on duty in the clinic at the time. Yet another indication that something wasn't right. You don't normally have a Sister or senior nurse in with you unless its to allow you to go over what you've been told afterwards once you've digested the news.

Sitting down his consultant broke the news to us. The scans showed a 1 inch tumour in the same location as the one that was removed last year. Surgery would be needed to remove it, and is in the process of being scheduled by Bristol. The operation to remove his meningioma has been postponed as that isn't as high a priority as removing this new one.

I'm not sure what reaction the consultant and Sister were expecting from us. I think after 15 years of dealing with leukemia, bone marrow transplant, tumours, surgery, chemotherapy, radiotherapy and not just for Rhys but also other family members the news wasn't that much of a surprise.  My wife shed a few tears at confirmation of what we already suspected. Rhys and I took the news very calmly.

We talked about what will be happening. Bristol will contact us once the surgery has been scheduled and we will head there so that Rhys can have the operation. After he's recovered from that then another course of radiotherapy will probably be the order of the day.

Last year there was a lot of concern about his kidneys. The surgery was extremely tricky and I suspect will be as tricky this time, although the tumour is smaller. Another dose of radiotherapy is not going to help his kidneys and there is the risk that one of them is going to pack in this time, not that we've discussed that with Rhys. It may even be that this time they really do remove one of his kidneys, something that was a possibility last year.

So once again we find ourselves in the delightful situation of my son undergoing surgery while my wife and I wait anxiously for him to come through it. At least this time we are a bit more prepared having been through it once already.

Rhys' consultant commented that there is something that he has to do with his life that he's not done yet. He's been through two relapses for acute lymphoblastic leukemia, a bone marrow transplant, the nerve sheaf tumour, still has a meningioma and now has to have another operation to remove a tumour. In addition to all that he has neurofibromatosis. We have seen children and adults go through far less and not make it. So for some reason he continues to go on.

As we sat there yesterday being told the news I couldn't help but realise something.

Three weeks ago we were waiting for him to have surgery for the meningioma. There were no beds available, a number of emergencies had come up that needed to be dealt with and there were patients in other hospitals waiting to come into the children's hospital for treatment. All of this meant that Rhys' operation was cancelled.

Two weeks after the operation was cancelled he had the MRI scan, something that would not have occurred if his surgery had gone ahead as planned. If the MRI had not happened then we wouldn't know about the tumour. By the time a MRI was then scheduled and the results came back the tumour would have been a lot bigger and considerably more difficult to remove. Its going to be bad enough and we hope that we get the right surgeon operating on him because that will ensure that the surgery does happen. The wrong surgeon may decide its too difficult and abandon the operation.

When I was thinking about all this I realised that somewhere, somehow, someone is looking out for him. Its too much of a coincidence that one operation is cancelled, a scan is then done for something else and that reveals that he needs more urgent surgery.

I don't know where, I don't know how, but I have a good inclining of who.

So somewhere Rhys' Nanny and Grampa are watching over him and keeping him safe.

Thank you Mum, thank you Phil for keeping my baby boy safe.