Archive | February, 2013

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.

Getting ready for tomorrow

24 Feb

I’m at home tonight, getting around to packing for the hospital. It’s very easy to pack I must admit – select a variety of granny nighties and the dressing gown… throw a few toiletries in and it’s done!

I went for the pre-operation assessment on Friday, and all went fine. It was the normal set of blood tests, blood pressure, lung function, height weight etc. I’m very used to it all these days!  I asked to speak to the surgeon as I hadn’t spoken to anyone in weeks about anything. It’s been strange going from appointments virtually every day in the middle of January to long periods where I am just left alone these days. So I felt a little unprepared for the operation on Monday.

One of Prof Shepherds surgical fellows came, and she was much nicer than the one who spoke to me before the last operation – who gave the feeling like talking to me was a necessary evil! She actually listened, and went through all the potential complications, and took into account what I was worried about – even if they are minor things. She also said there was no chance this operation could change into a hysterectomy on the table as far as she was aware, and that she promised I would wake up with my uterus intact. Which was really good to hear.

The main risks are to do with moving the other things out of the way, as I mentioned in my last post.

Then she talked me through all the other potential complications. I’m not really sure why they go through the full list of complications. There isn’t anything I can do about them as I have to go ahead, and it is a little scary. They are low risk, like 1-4%, but I can’t help thinking that with Prof Shepherd having done 250 or so surgeries, that means between 3 and 10 real women have had each of these bad complications. As I’ve been on the wrong side of a few stats recently, it feels much more real. I know the risk is low… but if it is you – then it’s a 100% impact! But, I can’t worry about something I can’t really influence, so I’m trying not to.

With the tumor, they are really only looking at the margins to ensure it has clear margins, and perhaps to assess the aggressiveness  but she said the margins where the main thing to worry about.

The surgeon also said this operation should be less painful from a recovery point of view, as they are not cutting through the abdomen.  However, it is still 4-6 weeks… so I’m not sure what takes so long. I suppose I will find out! The other operation was 2-3 weeks, and it did take 2 weeks, so I can only assume they know what they are talking about.

So, fingers crossed please everyone! The support really does make a big difference to me and it’s great to know that people are thinking of me – wherever you are.  Lucy – I’m also thinking of you, and while I can’t see you before your trachelectomy on Wednesday, hopefully I can give some kind of update here before you go in, and let you know that it all went well.

One minor thing. While I do love pressies as much as the next girl, I think there are others who can make much better use of the funds! So, can I please request that from now could you please make a donation in my name to Cancer Research UK. I have relied a huge amount on their very helpful website, and this new surgery is only possible due to years of research.

Thanks! Donation Page

Cheers all. I will handover control of the Blog to Susan and Eric so they may update over the next few days.

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.

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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.

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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!

phone blogging

18 Feb

As I have a shiny new phone today, I thought I would access my inner nerd and use it to post!

Its been an up and down weekend. Was sorry to miss the wedding on Friday,but thanks to modern churches, we got to watch it on webcam! Certainly a relaxing way to go to a wedding. Feet up, and ceremony on the big telly.

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Then a great day on sat with Jess, Gary and Caitlin – who knows how to win me over. ‘Where do you want to sit Caitlin’. ‘Next to Auntie Kath!’. me? Wrapped around a little finger? Never!! 🙂

I saw my niece win a silver medal on Sunday in taekwondo also, so not a bad weekend.

Being honest though, there are still tough times. I hurt my stomach again in the weekend, and so back on the painkillers for a day or so. Plus I think stress will increase this week, so after a few bad nights I’m also back on the sleeping pills. What would I do without modern pharmacology!

I’ll tell you what I do do… I turn this on when I don’t feel great. You can’t help but smile!

And also here are some lovely cards and gifts I have received. Truth be told… There was more chocolate before. 🙂

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Lymph Nodes Clear

14 Feb

Hi,

Well I finally got a call from the Doctor this morning, and all the lymph nodes were clear. So that means the operation on the 25th is going ahead.

This is good news, and thank god as I really don’t think I was ready for any other news.

Somehow I don’t quite feel like cracking the champagne though. I think I’ve been really focused on that, and while it means I don’t to do chemo/rad, the surgical option isn’t fantastic either. But, the outcomes are better surgically, even if the treatment itself isn’t exactly easy.  In isolation being told you need a major operation is bad news, it’s a strange world where it’s actually good news!

The doctors exact words were ‘The nodes showed no signs of disease, which is reassuring’. I think that reminded me that there are no definitive answers, and there probably won’t ever be. I’d also forgotten that after the surgery they may still even then decide the risk is too much and make me do the chemo.

Anyway, maybe just having a bit of a down day! I also had a bit more pain today, so took some codeine, and I don’t think they are good for my mood. But hopefully now the 25th is the start of the end.

From a practical point of view, I should hear from the admissions department soon. I think I will go in on the 25th, and may be out on the 28th, but would have to go back in on the 30th to have various tubes and things removed. Or stay until the 30th, which I may do depending on how I feel. Then it’s “just” recovery.

I’ll do a post of the actual operation in the next few days.

 

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. 🙂

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. 🙂

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.