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23+4

15 Jun

Quick update from me. First, and most importantly, both of my teams have lost in the world cup this weekend! C’mon boys… I’ve got lots of time to watch sport at the moment and it’s no fun watching teams I don’t care about!

Since the last post I’ve been quite busy. Lots of doctors appointments of course, but also trying to squeeze in some work from time to time! I’ve had some visitors and thankfully took a trip to Ireland a few weeks ago which was wonderful. Great break and lovely to see all the kids, even including a quick trip to the beach. Few pictures below.

Nat History Museum 1

Day at the Natural History Museum

Nat History Museum 2

 

 

So, I’ve learned the pregnancy lingo and I’m now 23+4, which is 23 week and 4 days.¬†It’s lovely to be this far and although I’ve still not got a ‘proper’ belly I can feel the baby shifting around and giving me the odd kick. It’s lovely and reassuring. Of course it’s also the opposite because as soon as I go a day or so without a kick I can’t help worrying. However I do know that the baby doesn’t like any pressure on my tummy, so I’ll put pressure on until I get a complaining kick! Probably not in the parenting handbook, but works for me. ūüôā

Here is baby Martin at 20 weeks

20 week scan

(Edit: For those that don’t know, my surname is Martin! We are not telling the sex of the baby just yet.)

In slightly less good news, I’m really glad I went to Ireland as I’ve also had a bit of a setback medically and am stuck at home on bedrest for a while. boooooo…. The TAC doesn’t seem to be doing what it should and I am starting to ‘funnel’ through it. My short cervix is still holding closed, but the additional protection we’d hoped for from the TAC doesn’t seem to be working – which is a pity as it was a bit of a pain to get put in!! ¬†Obviously as the baby gets bigger the pressure will increase and so the general advice is to minimise the effects of gravity – basically feet up all the time, or as much as possible. I’m still allowed to walk around and shower etc for the moment, but not really leave the house. Once I hit 24 weeks, and if my cervix is still closed I may go back to work, but at the moment I’ve been told that this time is critical for the baby so to take no chances. To be honest I’m a bit scared to really get back to being active – it just feels safer for the baby with my feet up!

Sounds wonderful doesn’t it! But, I can tell you it gets boring very quickly. I’m working from home for the moment, and will keep that up as long as possible.¬†I’m allowed myself out to go to a painting course I’ve been doing for a while, so hopefully can keep that up until I can show you all my dodgy attempts at oil painting! I’m even thinking of finally making all those photobooks everyone always plans but never has time for. And crossstitching of course… I may have to broaden my craftyness at some stage. A baby can never have too many cheesy handycrafts surely ;).

But I’ve got some lovely things to look forward too, including hopefully seeing my little nephew and letting him ‘meet’ his cousin in early July. Oh and my brother’s coming too of course (but in truth we all know its all about the kids these days!). ¬† Mum and Susan I think are planning to come in August, and I have warned everyone that I may be VERY dull to hang out, but¬†will be fantastic to see some faces from home.

I’m happy enough though, and this will only go on for a few months and so is totally worth it. The longer the better of course!! I’m desperate to get to 28 weeks as I know the risks to the baby reduce significantly from that point.

p.s. I am going to set up another blog (two is never enough!) as I think all this happy pregnancy stuff doesn’t quite fit in here. Most hits I get are still mostly from people in the dark early days, and pregnancy stuff can be painful. I will let you know when I create it.

No news is good news

13 Mar

Hello all,

Sorry for so few updates, I feel like I have abandoned this blog a little! Not a lot is going on, and I am just spending time at home getting better.

I did get some positive news about my tests, but only via a muffled voicemail, so I am waiting until I speak to the professor on the 18th of March before I read too much into it. I have misinterpreted results before! So, I’ll update once we find out on Monday what the next steps are. But, signs are good at this stage.

In relation to recovery, I mostly feel fine. I feel close to 100% when I’m at home, but once I go out in the cold I still tend to get pretty tired, and the odd bit of twingy pain. I have also found that my drinking tolerance has dropped worryingly – I’ll have to put in some solid hours improving that! Tomorrow is a big adventure across London for an afternoon out on the Thames (in a nice boat) which will be my first departure from the Shepherds bush area in about 10 days. Oh – the excitement!! But, will be great to get out and about, and remind myself that there is a whole world out there I need to return to at some stage.

I will update when I hear from the Prof next week.

 

 

Hospital Week

6 Mar

Monday

So the week at hospital was educational. Easier in some ways (less pain), harder in that it was much longer.

We arrived at 7.30 on Monday, feeling much more comfortable after the trial run and full of knowledge as some people were wandering around trying to find the admissions area. The start was all pretty much the same, lots of basic questions to confirm I knew I was there for the right thing, checking of weight etc.

I was much calmer than last time, which I can tell for sure as I got my blood pressure done. Something normal like 117/70ish.

Straight into theatre this time, and again as I was calmer I wasn’t given a mild sedative while we waited for the surgeon to sweep in and say hello! So I had the standard small talk with the¬†anesthetists¬†and then next thing I am waking up in the recovery room. It was actually quite a stressful wake-up unusually. I was really nauseous, and so woke up feeling like I wanted to throw up, and in a fair bit of pain. I ended up in recovery for about 3 hours I think.

Annoyingly, the doctors AGAIN didn’t contact Susan and Eric. So they were sitting around from about 12 (when they expected a call) to about 3.30 getting more and more worried about me. While I was happily getting bored in recovery. Finally they were told that the nurse was coming down to get me, so at least they knew I was ok, and it still took an hour to come back up as there was a shortage of porters. I was getting a little frustrated by then, but I didn’t know they were sitting about worrying! The doctor I had been speaking to in the morning (who was assisting) made a point to get Erics number, and double check it was correct, but still didn’t call. Remember that Mum in Australia was sitting around at 3 in the morning at this stage!

Anyway, annoying – but not something to dwell on.

When I got back to the room, I was much better than I was the last time. Much more alert, and in less pain. The support team (Eric and Susan) commented immediately that I looked much better! And I felt better. Surgeon came to visit and said all went well, and that it looked like clear margins, but it would take 7-10 days to find out.

The rest of the evening was pretty calm. I had a light, and very slow, dinner, which included a short nap during dinner, as you do. When Eric and Susan left, so must have been quite late, I got quite nauseous and had to get the nurses in. They changed all my meds to drips as a result, which was good for nausea, but bad for sleeping.

However, the first night was ok. Slept a bit, despite the  normal constant monitoring and drip changes. I think I gave up at about 6am and turned on the TV.

Tuesday

(don’t worry – they won’t all be long!)

I stayed on the PCA (Patient controlled Analgesic) all Tuesday. That is kind of nice in that you can control your own level of fuzziness, but I probably could have done without it, and it tended to make me¬†nauseous¬† It’s Fentanyl on a drip directly into a canula on my right hand. When I woke up I had four canulas in – two in my right hand and one in the left, and one on the inside of my left arm on the artery. The arterial one is removed immediately.

I started to have problems with the canulas on day 2. Every time they wanted to use one they had to flush it through, and it was incredibly sore each time, as well as whenever they started a new type of drip. I’d had no problem with that in the past so I’m not sure why, but all three of them hurt. They stopped using the left one totally, and one on my right was devoted to the PCA – so they ended up with only one available choice which kept getting blocked, and clearing it was painful each time.

They seemed to initially try to do the arterial catheter on my right arm first, as there was a massive bruise covering my wrist inside wrist and down my arm, with a few needle holes in it. Mustn’t have worked, and I’m glad I wasn’t awake for the attempts! I had spectacular bruises down the inside of both arms from all the various injections and canulas.

I had the initial wound dressings removed on Tuesday as well. Odd, but painless. Lets leave that there!

Wednesday – Friday

So, not much more really happened from then on. They removed the PCA on Wednesday, and on Thursday they were happy to remove the canulas (yay!). I was running a temperature on Wednesday night I think, and consistent low blood pressure, so worth staying in to be monitored. I think they added some extra drips to try to up my pressure.

They also removed one of the catheters on Thursday, and gave me the option to go home on Thursday. I could have, but to be honest I wasn’t keen on managing the bladder catheter at home, and I would have had to come in on Saturday to have that removed and have the bladder function tests done.

I started to walk as soon as possible, from the Tuesday onwards. Starting with little walks down the corridor of the ward, and then on Thursday and Friday I went for a long (!) walk around the inside of the hospital. I felt quite like a real sick person then – I was wandering around carrying the catheter bag (nice!), very slowly in hospital blue booties. And when I was walking I was hanging onto Eric’s arm, which wasn’t just for show, I did need him to hang onto from time to time as I either lost my balance, or just got tired.

On Friday, when Eric finished his shift and went to work, he ran into Susan on the street (starting her shift) and they discussed that I was ready for an exciting visit to the outside world. The handover had become very efficient by that stage Рmuch like the nurses handover each shift! Susan had dropped my rings into a jeweler across the road to be replated, and I went with her to pick it up. Here is the walk:

Walk

So, I estimate something like 150m all in. The ward lift is right beside the exit, so no long walk in the hospital either. This was the walk that wore me out! I got back, had to take some pain killers, and basically dozed then for a couple of hours. I was completely shattered! Up to that point on Friday I had been fine and chatty sitting on the bed. It was a shock to realise how tired I could get!

Visitors:

Eric and Susan were there pretty much all day every day, which was fantastic. I discovered that hospital can be very boring, despite various computers and TV options. I wasn’t as distressed as I was after the last operation (where I was in more pain), but I was in for much longer, as so it was great to have people come and visit.

Jess dropped in on two morning, which was great to get me up (well, awake) and moving. And Michael and Josh came one evening to play Uno. I felt I had to shush them, as we were having far too much fun for a hospital ward!!

Things you learn about yourself with a weeks monitoring. 

  • I drink a LOT of water when it’s available. I got sort of sensitive about it, as someone had to empty the catheter from time to time!¬†
  • I have very low blood pressure when sleeping. Which may explain the odd dizziness in the mornings, something that’s sort of useful to know.
  • You can ‘play’ the observations. On Saturday I wanted to leave, so I knew I needed good blood pressure and Oxygen levels. So I sat up, woke myself up properly, and took a few big breaths. Makes a huge difference to the results!
  • Very small amounts of oxygen on those odd looking nose things has a big impact on blood oxygen levels. Took them to 99%, rather than the normal 94ish%

Also, weirdly, I didn’t see any other inpatients in the whole week I was there. I was in the private wing, so everyone had their own room, but even on my little walks I never say anyone. There were 8 rooms in my area, and I only got the odd glimpse in the room next door. Otherwise it was all oddly patient free. Last time I was next to a normal ward so there were a number of people just behind curtains. It’s not surprising in the area I was I suppose, but it felt slightly strange. My room was lovely and quiet – I didn’t hear all the beeps and things that I heard last time – apart from my own noisy machines.

Nursing staff

Nurses are wonderful people.

Without exception, for all my operations, they have been wonderful, and caring, and always patient and helpful. They have a difficult and sometimes intrusive job, but always done with good humour and can make the difference between a good and a bad time in hospital. It was very sweet when someone would come back on shift, and be genuinely pleased to see me looking so much better. So thank you to all the nurses!

Saturday

So, on Saturday I was woken at 6am to have the catheter removed, and so started the pee test! I never wanted to pass a test so much. ūüôā

I had to go to the loo, and then they would do a scan (with something like a sonar) on my bladder to ensure it was empty. Test 1 was fine, but I failed the second test – oh no! I think it was because it took them 10 minutes to do the second test, and the aforementioned excessive drinking meant I was refilling the bladder to fast.

So, that meant delays… the nurse had to get the registrar to see if they would let me go with one bad result. They decided to do one more test (the alternative was going home with a catheter) and I had called them to the room, then went to the bathroom, then back for an immediate test, and I passed easily! As Eric said, I’ve never been so keen to pee! ¬†We had already packed, so made a swift exit.

Took a cab home, and went to sleep again. Another three hours sleeping to recover from the excitement of the day!

So that’s all. Now we are just waiting for results, and taking it slowly at home to get better. Fingers crossed the results come back well, and then I can start to return to real life.

Marsden update

25 Feb

Hi all,

Just a quick update to say all went well today, and I’m back in good drugs land. No complications, and the Prof said the margins looked good, although we still have 10 days to wait for the final report.

Due to my nice trial run a month ago, I’m aware that I felt fine at this stage last time, so I’m prepared for the impact when the rest of the general wears off. As well as the local¬†anesthetic¬†injected directly in the operation site.

The only big difference is that I am quite nauseous, which is made slightly worse by the personal pain killer button, but I’m hoping that will clear away soon. I’m not giving up the pain meds!

Anyway, just a quick note, so that’s all for now – I’m going to go back to dozing and hopefully get a good nights sleep.

Radical vaginal trachelectomy

19 Feb

Ok – if you have made it past the title, then hold onto your hats and I will explain the excitement that awaits me next week!

I posted a while back about the potential treatments I may have, and one of them was the Radical Tracelectomy.

As a result of all the various tests, the surgeons are happy to do the Trachelectomy. That is what I had been hoping for, so it’s a good result, although still quite scary.

Extract from the earlier post

Name Treatment Intended Effect Side effect
Radical Trachelectomy Remove cervix and surrounding tissue. Remove area affected by the cancer. Can still carry a baby, but not give birth naturally. Very high risk of late miscarriage.
Lymphectomy Remove as many lymph nodes as they can find in the groin area Lymph nodes are normally the first areas impacted by spreading cancer. Best to get rid of them! Leg swelling. Not sure if that is forever.

As you know, I’ve had the lymphandectomy. It seems that in a lot of cases they do both these operations at the same time, but I have had it done¬†separately. I’m fine with them being done separately, as I believe it reduces the uncertainty with this next operation. They know at this stage that the lymph nodes look clear, so it is more likely that the trachelectomy would go ahead as planned without any surprises.

So, a bit more here about the Trachelectomy for those that want to know.

Trachelectomy:

The goal of this surgery is to remove all the cancer, as well as surrounding tissue to try to reduce the chance of¬†recurrence. The team keep reminding me that getting rid of the cancer should be the primary focus, and in the past, ¬†surgeons would just perform a full hysterectomy – ie the removal of pretty much everything from the cervix up – including ovaries, womb, cervix and the surrounding tissue to be sage. That’s a pretty intense operation in itself, and clearly it completely removes any chance of having children. Plus immediate menopause and other fun things.

So, being human beings, doctors looked to create a less extreme surgery, especially as cervical cancers are regularly found a lot earlier these days due to pap smears.

Radical Trachelectomy was developed (in part by my actual surgeon) to try and be a little more conservative for early stage cancers. It is becoming more common, and my surgeon has done the operation about 220 times, but he said there have only been about 1000 worldwide.

The image below is a summary of the operation. The cervix is a link between the womb and the vagina, so if the cervix is removed then those two elements have to be stitched together instead. The surgeon will make an assessment during the surgery as to how much cervix to remove. They will try to leave some cervix (at the upper end) if possible, as reduces the risk of early miscarriage.

Image3

Now, the NHS website says that no surgeon can promise that they won’t have to change and do a hysterectomy once they get started. However, one of the other surgeons said he had never heard of that happening… but he wasn’t a specialist. So I will ask the surgeon on Friday if possible. Maybe the fact that I have had the lymphandectomy reduces the risk of there being a change mid operation.

You can see from the image that there are blood vessels and things that need to be moved and re-routed where necessary.

Without a cervix (or only a partial cervix), the surgeons also have to put in a new ‘tie’ at the bottom of the womb. It’s called a¬†a cerclage – which is a permanent stitch. I believe that if I do get pregnant, I would have to have another small procedure to close up the stitch properly to try to, again, reduce the risk of miscarriage.

Image4

So, that’s it really. ¬†Remove a bit in the middle, and tie the remaining bits together! Easy. I don’t know how long it will take, maybe a couple of hours. There is no surgical scar – the whole thing is done via.. ahem.. the existing access point! I can’t understand how, and have decided not to investigate.

Sometimes they do the lymphandectomy at the same time, but I had mine done last week. So they KNOW that it hasn’t spread – I think therefore the risk of them widening the surgery is low, as they already know it hasn’t spread. Well.. that’s what I hope anyway.

The image above also highlights a few of the other risks. The white ‘blobs’ in front of and behind the cervix area are my bladder and bowels. These have to be moved out of the way. One of the reasons for a longer stay in hospital is that normally women have trouble with their bladders for a while, as it’s near impossible to avoid the nerves around the bladder.

There are other nerves that run in the area, specifically the nerves for upper legs. I have heard stories from women recently (via the Macmillan site) who have had quite bad upper leg pain from damaged nerves, either due to direct surgical damage, or from the position you are in for the operation. That is also something I would rather not know about. As far as I am concerned, I go to sleep on a nice trolley, and wake up on a bed. I don’t want to know how they manhandle me in between!

But, overall the complication rates for this surgery are much lower than for a hysterectomy, and the long term prognosis is good. I will continue to have 3 monthly checkups for the first year, then 4 monthly for a few years… etc until at 10 years they discharge you back to your GP. The only potential fly in the ointment is if they do further analysis on the tissue removed and decide the trachelectomy isn’t enough. I’m not fully sure what they are looking for, but so far most results have come back clean, so I’m hoping that will continue.

As I said, this should be the beginning of the end. I’m pretty healthy at the moment, so that will stand me in good stead for the operations. I’ll be in hospital for 3-5 nights, and I think the main reason is that I will have various tubes in me which will stop me moving – mainly related to the previously mentioned ‘blobs’ above!

After that – recovery is 4-6 weeks, and they say you tend to be weaker and more tired etc for up to 6 months.

I think that’s all… any questions?

Edited to ad: I think you can see the video now. I’m made it public. Nina… I apologise in advance!

Out of the fog…

13 Feb

Hi all,

There have been some complaints about lack of updates, so although not a lot is happening, I will update where I am at!

Today was my first day fully off the pain killers. I started to reduce on the weekend, and it was only then that I realised how much of a ‘fog’ I had been in all week. Very lethargic, and my brain was processing very slowly. I think that was why I was a little bit stressed, as I couldn’t quite work out why simple things seemed just that little bit harder than they should be. The concept of going back to work really worried me, as I simply couldn’t imagine what I would do – and trying to get my head around hedging and investment strategy sounds so terrifying.

But now I feel much clearer. There is still some residual pain, and annoyingly the anti-coagulation injections are giving me horrible bruises across my tummy and thighs, but it’s manageable, and it’s better than the mental fog. I’m still quite tired, and very ready to get home after a bit of wandering around when I do get out, but it’s mostly ok. ¬†I’m still avoiding my normal ‘killer sudokus’ as I suspect I will be worryingly terrible at them, but hopefully I can start to now think clearer, and maybe read the odd work related document!

As I’ve been quite housebound since the operation – this has only exacerbated my well known desire to never leave the Brook Green ‘triangle’. In particular I can’t really imagine taking the tube again, especially a rush hour tube. The idea terrifies me! But I assume as I feel better that will improve. I’ve¬†successfully¬†navigated a trip to Gloucester rd (on the bus) today, so things are looking up. ūüôā

The problem is, I’m not visibly unwell… so I can’t really throw people out of seats. And I far to scared on the pram brigade to even approach them to move!
p.s. This is not actually me! I’m not sure what this lady is doing…

In other news, I am still waiting for results from the lymph nodes. I will call tomorrow as I would like to know what the plan is before the surgeon goes on holiday next week. Assuming they are clear, then I will be going into hospital on the 24th (evening) for the operation on the 25th, and should be in hospital at least til Thursday, and possibly until Saturday. After last time, I am less inclined to rush out of hospital, and will take my time and stay as long as I want. In some ways this smaller operation has been a great trial run to let me know how to prepare for the larger operation. I have tried to do too much too soon, but I will know next time to take my time.

There was talk of doing the major operation on Monday this week (the 11th) but I’m really pleased I didn’t. I was not ready at all, and while the 18th would have been fine, the surgeon needs time to use the yachts I am funding! So 25th will most likely be the day, and fingers crossed the start of the end of this whole experience.

As a reminder, the next operation is a trachalectomy. I do another post on what that operation is once it is confirmed.

Also, sending lots of love to my cousin and her soon to be new husband, whose wedding I am sadly missing this weekend. Hope everything goes completely smoothly, and you know we are both sending our love!

Pain Management

7 Feb

When I last posted, I was under the influence of some lovely hospital drugs. Fentanyl on a self controlled drip – directly into my bloodstream. Good times!

When I left on Tuesday, I was feeling fine and when the nurse talked me through the masses of painkillers I was slightly bemused… I wouldn’t need all that! I was wrong, oh very, very wrong. I didn’t realise the reason I felt ok was because the hospital were nicely controlling what I was taking. Anyway, got home, and let things lapse. Then around came about 8pm, and suddenly I was in a lot of pain… sweating and had to walk about to try and distract myself. Took a lot of the painkillers, and took myself to bed for some very poor sleep.

So, since then, I have been rigidly following all the advice I was given. Eric went and got me a pill container and we have the weeks drugs all ready to go. Including some additional antibiotics I got from the GP for a horrible ulcer on my lip and a throat infection from the tubes, as well as drops for an ear infection. I am a bit of a mess at the moment! The GP has advised I can take my sleeping pills, so long as I don’t take too much codeine in the evening, so I am swapping them out to help me sleep – but that is getting much better each night.

Here is my current lovely multicoloured setup.

I even have my own sharps container!

I even have my own sharps container!

You will notice that Susan found out that chocolate contained potassium. So that is now part of the required medicine setup. ūüôā

I’d also note that this is my second sharps box. The first one is full from the IVF. I never thought I would have such a high need for sharps containers!

I’ve also had some other ‘potassium’ delivered, and the house is lovely and flowerly. Some pics.

Potassium delivery

Potassium Delivery!

These flowers have been here a few days, still looking beautiful.

Flowers

There are also some lovely hyaciths in the background of the medicine. They are amazingly scented, and I can smell them through the living room!

Thanks to everyone! And thanks for good wishes, including a whole kindy class who prayed for me on Monday. It really makes a difference knowing there are people out there thinking of me. ¬†Even if I don’t get around to responding to everyone’s messages I am reading them and appreciate every one.