3 weeks post treatment

Hi, I'm 4 1/2 weeks post treatment and I had no skin anywhere underneath until a couple of weeks ago. The entrance to my vagina is still very sore. I tried using the dilator and that's what has started it up again. Just put your cream on every time you remember,before the loo and after especially before bed and I think if you're like me you are going to notice a big difference by next week. It seems that some women get more comfortable a bit quicker than others in those sensitive areas and it's a blinking nightmare isn't it. I'm still suffering terribly from nausea and fatigue whereas some are out and about. If you do get too worried and you need to have your mind put at rest have a word with your doctor. My Dr told me to give it a bit more time and not to worry. I hope that's helped a little. Xx Marie 

Beyond terrified  Hi Rosie, I’m with Mecca on this - it can be a blinking nightmare.  Trying not to giggle too much imagining you as John Wayne;)

I finished RT 22nd October & was out of pain by mid November, so about the same as where you are now.

We all heal in different ways so it’s a guessing game!  I used mantras like “it’s always darkest just before dawn” & “there is no pain” & “my tumour is shrinking every day” because it helped a little getting through each day.

To be honest, watching rubbish films on Netflix probably helped more, except I had to be careful to slightly change positions in bed enough to avoid serious bed sores.

To sleep I used to bunch up the duvet between my knees to keep legs apart because I couldn’t lie on my back.

Hang on in there!  You’ll get your horse back soon
xx  toni

Hi ladies, Beyond terrified & Mecca, 

Once we’re through treatment & have waited for the side effects to peak I think we’re all so eager to be well & get back into life again that we forget what our body’s have endured over the past 5-7 weeks. Effectively we’ve been poisoned day in day out for 28 days & that’s still going on inside with the radiation still doing it’s thing.

I for one expected it was a case of healing externally & once the new skin had formed then all would be much better, which don’t get me wrong it was, but internally was a different matter altogether as was the lady parts! I suffered intermittent bouts of inflammation internally both back & front for a while but these gradually got less & less with longer gaps in between until I suddenly realised I hadn’t had one of these episodes for a while. 

We all recover at different speeds, I was back to work part-time around 5 1/2-6 weeks post treatment but that doesn’t mean you should gauge your recovery against mine. Beyond terrified have you tried sleeping on your side with a pillow between your knees? I had to do this post surgery & treatment as I couldn’t bare anything touching! Mecca if you’re still suffering with fatigue my advice would be just go with it, unlike tiredness you can’t push through fatigue you just do more harm than good it really is your body screaming for rest. 

I really do hope that you’re both feeling a bit more like yourselves very soon. Sending lots of healing thoughts your way.

Nicola

Hi Mecca/Marie, Toni and Nikki

Thanks for your replies and words of encouragement.  Marie, it;'s the swelling now that is getting to me, rather than the skin, which mostly healed.  But the swelling has is what I can'[t sleep for, and is causing me not to be able to walk.  

Toni, netflix definitely helps, am currently watching friends 1=10 for the 2nd time, and line of duty.

Nikki I did try sleeping on my side with pillows once the front started swelling 3 and half weeks ago.  Then one morning I woke a few days later, I woke up unable to move my left leg.  It resolved after about 40 minutes, but I had various problems with my leg in the next week to ten days, ending up with being hospitalised 2 weekends ago.  The drs have said this is a trapped nerve, either due to the swelling from treatment, or positional, or possibly due to degenerative changes in my spine.  I am less convinced about the last option, due to the timing, I have tried lying on my side intermittently since, and noticed that this does exacerbate the pain from leg into my hip.  Oromorph/zomorph don't touch this pain, only when IV morphine that I was given when in hospital helped. Am on amitriptyline for this,  cose increased but so far to little effect.

I need the inflammation to settle then see if the leg settles.   I get that everyone is different,, and note that you mentioned the inflammation settling then re-starting.  My vulva went down a little, then is back being more swollen again, but so far, it has never shrunk to where i can close my legs or walk properly. 

Does anyone recall when they were able to walk normally, go outside, and sleep in any position, when the inflammation settled?  Even if it's a ballpark.  i thought, as you said Nikki, it would be around the time the skin healed, but that hasn't been the case.

And how long were you all on bed rest?  Rx

Hi, I too am suffering with the girly bits and OMG the swelling of the vulva is excruciating and should be against the law but that went down towards week 4 and now I can walk like a lady with my legs together. I'm still sore as hell at the entrance of my vagina so I'm back trying the Polymem and I think it's eased a little bit when I have a wee. My hips ache but I bought myself a memory foam mattress topper which helps a lot. I haven't been out of the house since my last day of treatment 4 1/2 weeks ago. I'm suffering from fatigue and nausea as I have said but I also need to get to the loo literally within seconds for a bm so I'm still trying to work that out. I'm still spending most of my time in bed but I'm starting to get about a bit more so that's something positive. I've bought myself some summer dresses and had a can of spray tan delivered in my shopping so I'm getting prepared for a William Wallace (FREEDOM)! Have you tried Polymem? Xxx Marie 

Ah Marie that tan and summer dresses sound like an excellent idea, I love that you are planning for your freedom

So I am going into week 4 now, so maybe by the end I will see a reduction in the swelling.  Am hoping that resolves the pain in my leg....  I am not actually sure that i have a vagina anymore.... even though the dr said it was out of the way of the targeted high dose radiation, but am not going to even think about that until after week 6, because that's when they told me to use the dilator.  I left the house to go to a face to face review a week gone Friday, after my admission to hospital.  When I got home I was much sorer,, and had developed 3 new swellings between my legs.  All but one of those are resolved now, and my next face to face review is around 6 weeks post treatment, on 24 May.  

I was given some polymem early on, but not sure how to use it?  How do you use it?  Rosie x

Well, I got the polymem from the nurse to put at the side of my groin... knicker elastic area at the side of your girly bits. When all my bits were inflamed, no skin on all of my undercarriage one of the wonderful ladies in our group told me to cut one in half (sorry it's a bit graphic) and put one half between the girly bits and the other between my bum cheeks as that area had no skin either. It's not the most comfortable thing but it helped a blinking lot. Mind you I had to wear knickers and I've had to go commando as it was like "pants on fire". The side with the squares is on the outside and plain touching the skin. If it's too painful at the moment leave it for a little while. I've just sprayed some of that false tan on my legs  I'll probably look like a vegan addicted to carrots and streaky but at least I got out of bed. P.s can't wait for tomorrow... line of Duty....H? Xxx Marie 

Thanks for that tip, also for the memory foam matrress topper, I might look into that.

But what will we watch after Sunday??

Do you have a theory on H?  i think Osbourne, do you think it will be somoone more shocking?  I am watching them all again from the beginning, because I had forgotten who Tommy Hunter was (a nasty piece of work as it turns out).

Rosie  xxx

Aww I know it's bitter sweet, we find out who's the baddie then we have to wait and hope for the next series. I was thinking Carmichael but that's probably a bit obvious.... Mattress topper best prices on Amazon also 3" thick is the best that's what I have and it's made a big difference. I bought my mam one too. She broke her hip a few years ago and had trouble sleeping as she likes sleeping on her side. She sleeps like a baby now xxx Marie 

Thanks for that Marie, I will check out the mattress toppers, and check in with you after tomorrow to talk about the last episodes surprises