Tag Archives: cervical cancer

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

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.

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.

 

The importance of Research

1 Apr

The other important thing is research.

Since Mr Papanicolaou first created a screening test for cervical cancer, a series of steps was being prepared to ensure I got through this whole thing as safely and healthily as possible – by an army of researches. Without that test, I wouldn’t have known I had cancer, I’d still have it now – but it would have doubled in size and would be preparing to properly kill me. My cancer was about 2-3cm in size, and doubles every 3 months or so – so it really was discovered just in time.

Without research into less invasive treatments, I would have had an instant full hysterectomy, as well as a good blast of chemo and radiation. Leaving me infertile, in menopause, missing key functions (like bladder and bowels), and a much shorter life expectancy.

Instead, I am happy and healthy now. With a good chance of still having kids, and a normal life.

I am SO grateful for everything that brought me here today.

I have said before, but in so many ways I feel incredibly lucky, lucky it was found, lucky I could get the best treatment, lucky I was referred to Prof Shepherd, and lucky the operations have all gone so well.  I could say I was unlucky to get cancer, but you can’t have it all!

Here is the link to the donation page for my fundraiser for cancerresearch

As I am the one who benefited most from both of these charities I will also match any donations between the two charities – up to £1000 – so please give generously!

As you can see, its for an Afternoon tea this weekend, and if you are in the West London area feel free to get in touch as all are welcome. Contact me on kmmr99@hotmail.com

The importance of Support

1 Apr

Hi all,

I’m doing a little fundraising in support of the two most important parts of cancer treatment (in my limited experience). So the next two posts are explaining why and how to help. I’m also doing an Afternoon Tea this Sunday, and will put up details of that from those who may be able to attend.

1. Support.

This ad started recently, and it reminded me so much of the whole experience.

My experience was very similar. The doctor started with ‘Ok – well, we have a problem. There is a tumor, lets get the word out’. And then gave lots of information, and suddenly I went from being fine, to fairly non-stop crying. The fear that hits you, and I think a form of grief. Sort of loss of a simple life that you used to have, and entering a world where you don’t know anything, and the doctors keep asking if you have any questions!  That sadness, not overwhelming terror or anguish, but a general sadness is what stays around all the time – like you’ve forgotten how to be happy. And it hits again and again.  I’ve sat on the tube, on buses, at work, at home, and regularly at night just not able to stop the tears.

The questions you want to know are, how bad is it, how long will it take, will I die from this, how bad are the side effects, can I ever had children, and will I come out of it with most of my body intact. But… they can’t answer that, and that is what is so scary.

The next step, having to tell friends and family is almost as hard – as you are bringing this horrible thing into their world. Finding the words was so difficult – telling your parents you have cancer isn’t a fun conversation. I remember sitting with the whole family in Australia when we arrived, and I literally couldn’t start the sentence, it was too unreal, too hard to tell them something that I knew would cause them pain, and that I couldn’t easily solve.  Telling friends was the same, I felt like I had the ‘fun-destroyer’ grenade to throw into every situation.

But, what made it possible was the support I had.

Eric was there from day 1 at every appointment, and there to help me ask the questions I needed to ask. And then to help me tell people, and to find the words when I couldn’t. And especially to just let me cry and be there in the long nights we both went through.

My family and friends were, and still are, very supportive, rarely a day goes by without a message, a whatsapp, or email, or blog post (or flowers!) or something. And of course, Susan, who delivered herself to us in January, and has been a massive help over the last few months – making sure I don’t wallow in self-pity, and keeping up a regular schedule of spa visits and afternoon teas!

And while I don’t always say it, I really appreciate it – every single time. Sometimes I don’t answer as I don’t have much good to say, but I do know that without everyone’s support this would have been a even scarier and lonelier experience.

Which brings me back to this MacMillan campaign. The Campaign is called ‘Not Alone’, and ensures that everyone who gets cancer has the support they need. So, although I didn’t actually didn’t need to make much use of their services (thankfully) I would like to raise a little money to ensure that no-one has to go through cancer alone.

Afternoon Tea Fundraising page

As I am the one who benefited most from both of these charities I will also match any donations between the two charities – up to £1000 – so please give generously!

(MacMillan, for reasons unknown, make it very hard to donate directly to them! So this is a ‘tribute’ fund technically, but don’t worry – I am alive and kicking! They have agreed to funnel the money to the Not Alone campaign for me)

That is the first charity, and I will put the details of the next one in the next post. Both are equally important in my opinion, so feel free to choose which one you would prefer to donate to.

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 – much 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. 🙂

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.