No evidence of recurrent disease

29 Oct

As promised, a quick update to say my delayed one year MRI has come back clear. Or in the language of cancer specialists ‘no evidence of recurrent disease’.

Great news!

I have a colposcopy coming up soon too but it is a relief to get through the MRI, as it was long delayed due to the pregnancy. Hopefully I’ll be able to report a clear result from the colposcopy soon.

Time to start a new journey.

2 Sep

This post will hopefully be the last one on this blog, apart from perhaps the odd confirmation that things continue to go well.

Our big news is that we were joined by our beautiful baby Elliott Lewis on 25 August 2014! Weighing 2.140kg and at 33 weeks 4 days gestation.

Luckily we had a little warning so were able to get some steroids in a week before he arrived and he was able to breathe unassisted from the start. His little tiny organs have done their job wonderfully and only a week later he is actually off all support and just sleeping in a warmed cot. He is still in hospital but after 7 nights he was moved from NICU and is now working his way down to special care. The last thing we need to do is get him to feed by himself as the instinct to suckle hasn’t quite developed yet.

But we feel so lucky! It’s a great gestation after an adventurous pregnancy and he is simply beautiful. Beyond beautiful.

 

 

First picture

 

 

IMG-20140829-WA0015

 

 

1622218_10152689383863210_3795710373421148138_n Last photo is 1 Week later.

But for me this is the end of a long road, and the start of a new one. I couldn’t have believed we would be in this place only 20 months ago when I was diagnosed, Elliott is surely a miracle baby, helped here by the hands and love of many many people. There were lots of hard days, frustrations and just the ongoing fear and stress that illness brings – but every single moment was worth it when we hold our son in our arms.

My only advice would be to keep pushing on, even when doctors might give up, or the options available seem years away and the problems look insurmountable. However, I am fully aware that luck has played the biggest part in us getting to this point, so we are simply grateful.

Hopefully I’ll still hear from people through this blog and that it gives hope to women facing scary times and tough decisions. There can be happy endings!

Kath and Elliott

6 Months.

4 Jul

For those that don’t know, pregnancy technically starts two weeks or so before conception based on the day your cycle started which I think reflects the fact that the egg starts its growth cycle from that point. So by the time you conceive, you are instantly 2 weeks pregnant.

Anyway, for me that date was 1/1/14, so it makes dating my pregnancy very easy! So as we tip over into July I am pleased to have hit 6 full months of pregnancy. Very exciting, and with bump kicking away it is also becoming very real.

Medically things are going pretty well. I had another scan at 24 weeks which showed my cervix had dropped another cm (from 2.5 to 1.5) and the doctors weren’t too upset, although it sounded bad to me! They said I should expect to see it drop from here on, and only to get more worried if it goes below 1cm. That doesn’t seem too far away!! Less than 1cm may mean I’m admitted to hospital, but I think they would also want to see other symptoms, such as pain, contractions or infection.

However this week (26) they scanned again and it was unchanged. Quite a relief and but I think they were pleasantly surprised that it things were stable. I was expecting worse news and had a hospital bag packed and ready to go! Eric was with me and we were both pretty relieved. Of course that doesn’t mean I get my freedom back – it means I have to keep doing what I’m doing, which is lying down as much as possible, not going out much (maybe once or twice a week) and working from home.  Sounds great I know! But it is hard losing your independence, and not being able to pop up to the shops for a mooch around, or a nice walk in the sunshine. I am not used to being so unable to do what I want! Maybe this is training for when I am tied to the moods of a baby. :)  I am also honing my internet shopping skills, a key skill I think we will all agree.

I feel very positive that this pregnancy will keep going for a good while yet. The doctors still seem to be saying we should hope for 34 weeks, but be ready anytime from now. I would be VERY happy to get to 34 weeks as the baby will be much stronger and well developed. Babies can survive from about 24 weeks (known as viability day) but have a much better chance of healthy survival from about 28-29 weeks. Personally I think we will all still be waiting around well into September!!  Even if the cervix continue to thin, or even opens, they can keep the pregnancy going in hospital so long as infection is controlled and waters don’t break. The TAC will stop the baby physically falling out – worst case scenario it will hold for the 24 hours required to get steroids in help the baby breathe. They don’t like to give the steroids until it looks like they are needed – ie when baby looks to be arriving imminently.

However, we are so close to the point where these concerns will start to fade away. In 12 days I will be at 28 weeks, and I can see my doctors already stepping back from battle stations! There are not a lot of people in my situation, so they don’t really know what is normal, but every day that passes the baby gets bigger and everyone relaxes more. Normally I would be discharged about now from the specialist prematurity clinic people, but thankfully they have decided to keep me on as I’m an ‘interesting’ case and there is still potential for a hospital admission. I’m very pleased by that as the doctors know me and have been great, whereas back the land of normal high-risk pregnancies I have found the doctors do not have much experience (or knowledge) of what is happening, and you get a different doctor each time.

Only 2 more weeks of work left, which is just about time as the little table I use for the laptop (when lying on the sofa) is starting to be too small for my increasing tummy size! Baby bump objects strongly to any pressure on my tummy, so I find myself trying to balance the laptop in every more uncomfortable ways otherwise the kicks are non-stop.

We have also started to get the confidence to properly start buying things. :) We have the pram, and cot and lots of tiny clothes beginning to litter the house. Still completely overwhelmed by the baby aisle in tesco – we look at the food and bottles and have no idea what we need! But I’m assuming that it will all magically become obvious at some stage (Optimism knows no bounds here!)

Looking forward to posting in a few more weeks to say that nothing has changed and I’m still cooking.

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. :)

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.

Locked and loaded

31 Mar

So I’m home after the TAC and the baby is locked and loaded. Very pleased!!

The operation went well, although the surgeon said it was more complex than expected due to a fibroid being right in place where the stitch  normally goes. Plus a tilted uterus and non-standard anatomy, but afterwards he said it was fine. I have 21 metal staples in my tummy now! Recovery was… honestly… pretty painful. I did take some morphine, but moved to codeine the second day and then just paracetamol.  Just home today after 3 nights in hospital.

The surgeon told me that he had a 100% success rate with patients like me!! However he did say that was statistically unreliable as there are so few examples, but he was really positive. He did give me lots of information about how much better it was to have the TAC done pre-pregnancy… not terribly helpful at this stage!

They scanned the baby before and after and said it was looking perfect, but the consultant who saw me on Sunday managed to get me into the closed EPU (Early Pregnancy Unit) and did a scan for reassurance so I got another look. I was bloated like a whale, and all swollen up from the surgery, but she persevered and found the baby and it was there with a lovely strong heartbeat. At this stage you don’t need to see the heartbeat though, you can tell it’s happy from all the bouncing around it’s doing!

I was nervous about the hospital experience as it was the first time I was going to be in a ward, but it was actually perfectly ok. A bit noisy, but they had a really strict visitor policy so only from 3-8.30 which meant the rest of the time was pretty quiet. There was a bell like in a pub at last drinks! Staff were lovely, and food was acceptable, but I barely touched it really. It was a gynae ward, so all women, but they brought in some female admissions from the emergency room late on Friday and Saturday nights. In both cases the patients were as considerate as possible, but you do hear everything and someone non-stop throwing up is slightly distracting! But I wasn’t sleeping that much really so it wasn’t too bad.

The operation has been a bit more of an ordeal than I was expecting to be honest. I have incredible RESPECT for women who do that and then go home to care for one or more kids!

I’m hoping that I’m not just pathetic, but that it will be easier next time when I can take proper pain killers and am not dealing with early-pregnancy fatigue and symptoms on top of it all. I’m pleased today to feel more pregnant rather than just post-op’y. Bit of nausea, tired and mild bloating (like I had all through the first 12 weeks) which somehow feels different to the intense nausea, fatigue and massive bloating after the operation.

And finally, to liven things up – a few pictures of baby Martin. :)

Baby2 Baby1 - fibroid

 

The fibroid is 3cm so looks huge on this scan, but it shouldn’t grow during the pregnancy so will quickly become less of an issue. Poor baby was having to dodge around it at the moment though.

Transabdominal cerclage

27 Mar

Just a quick post on the next operation, hopefully the last in a while.

What is the surgery:

When I had the trachelectomy the surgeon put in a vaginal cerclage. This is a stitch to give additional strength to the cervix and it is placed somewhere roughly where the cervix used to be. During last year when I had the additional operations they decided to remove it as it was causing me some trouble.

Once I was confirmed as pregnant, the doctors advised that I needed to get it put back in asap. However this new doctor is a big advocate of the more invasive, but much stronger version that is placed via the abdomen. I was a bit surprised at this but in another way pleased as the success rates seem much better. The doctors will cut down to the uterus, and then stitch in some surgical tape around the base of the uterus/top of the cervix.

This surgery is not very common, but has been done on a lot of women who have experienced cervical incompetence for a variety of reasons. It seems more popular in the US at the moment, and certainly more of them have been done than the other surgery I had. Sadly most ladies find out after multiple late term miscarriages, but I know of the risk in advance.

Cerclages

 

The surgery is done much like a C-Section, and will actually be my first open surgery. It can be done laproscopically, but not by my surgeon and the success rates are quite a bit lower (95% vs 75%). Plus this is on the NHS so my choices are more limited! However, I’m really happy to be getting this done, and I’m glad I didn’t have to try and fight for it. With this abdominal cerclage in place I should have a normal pregnancy, and with the weaker cerclage I would probably need extended periods of bedrest and still lower changes of making it to term.

Why do I need it:

Simply put my cervix isn’t strong enough to hang onto a baby long enough for it to survive. It’s been mostly removed and what is left isn’t visible enough to put the cerclage in vaginally. Once the baby starts to get bigger and put pressure on the cervix there is a good chance it would just give way, and I would suddenly find myself giving birth.

Cerclage2This type of cerclage is permanent and will remain for future pregnancies. This obviously means that my cervix can’t open naturally during labour, and so I will be having a c-section. That was always going to be the case as  I think my dodgy cervix couldn’t be trusted with the job anyway!

Interestingly today I had a scan showing that my cervical length is actually 2.3 cm, which is better than expected. It  may be that all the scar tissue that has caused me problems has actually helped by re-creating some of the old structures of the cervix. This makes me slightly wonder if this surgery is totally necessary, but the results are good and the extra security is worth it.

Surgery and Recovery:

I’m headed into Chelsea and Westminster hospital tomorrow (28 March) and will be there for 2-4 days, then back to recovery at home.  Under the care of Nick Wales. I’ve been advised to take 4 weeks off work, I think partially to recover from the surgery, but also then to give the cerclage a few extra weeks to 100% heal and gain strength before the baby gets bigger and puts pressure on it.

I have to say I am not in the slightest bit apprehensive about this surgery, other than the risks to the baby. The baby will get some of the anesthetic, but it will be proportionate to it’s body weight, as my body will spread everything equally to all the cells, and the baby obviously has less cells. They say the baby will just fall asleep, and will be monitored all through the surgery as well as after.  I’ll try not to go crazy on the painkillers after, which is a pity as I love a good opiate!

I just want to get this done and get to week 16 with a safe and secure baby, and then have a boring and uneventful pregnancy. The baby is due on our wedding anniversary 8/10/14, although it will probably come earlier. A lovely coincidence.

p.s  Sorry for all the postings! I’ve been holding back for a while!

Pregnancy and cancer

27 Mar

I’d like to add a little something here. I have listened to so many pregnancy announcements which for me were tinged with pain and sadness (and bitterness if I’m honest) as we have been through this process, so I know this news can be hard to hear. Especially for ladies who have been through cervical cancer and haven’t been as lucky as I have.

I’m not going to say ‘it’ll be fine’, or ‘just smile through it’, because sometimes you just want to punch someone who says that! Just know I’m thinking of so many of you, and I know this may be bittersweet.

 

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