Beautiful days in Hampshire, but now worried about....

[Janet235]

Got invited into next door's garden which was amazing - so here I am admiring and looking towards our son's house. Next pic is at Houghton Lodge in Stockbridge on the River Test. Visited Hillier gardens also - fantastic peonies everywhere. Finally we went back to the country house hotel where simon and Hannah got married and enjoyed tea and best scone ever...

So now we are back home but I still don't feel anywhere near back on track. A couple of days ago my mouth and lips felt slightly weirdly numb as if a dental injection was wearing off or that strange edgy mouth sensation you get when you have eaten a dish of rhubarb and want to brush your teeth

I am wondering now if it is part of the creeping neuropathy. Certainly I have had altered and slightly numb sensation on the skin of my legs and arms for some time.

Wonder if anyone else has experienced similar... and whether it might resolve at some point...or get even worse!

Janet 🌈

[lorraine71-Australia]

Hi Janet, Love the photo's looks like you have a lovely spring day we are coming into our winter here though our winters are never as cold as yours.

I watch a tv show on English country side and houses they are beautiful.

When I was on single Caelyx I had a numb sensation on my chin and around my moth it did stop arfter a while, some of my toe nails fell of and they were numb but were ok arfter treatment stop.

Has it stopped or is it permanent ?

Maybe you can mention it to your oncologist might be able to give you some advice also one of our ladies might help. ..Take care Lorraine xx

[Janet235 in reply to lorraine71-Australia]

See reply to Christine below.. at moment it feels like it is still progressing... but I think it's a matter of luck, chance, way we each are? as to whether it will stabilise, reverse or resolve...case of watch this space.

One of my closest friends lives in Norton Summit near Adelaide. I love to email with her at the turn of our seasons though as you say our idea of hot ( around 20') isn't a patch on yours... 🌞. Then she writes... ooo it's really cold today i.e. 15' , and I reply - want to try minus five??

X

[BeeWild]

Morning Janet what lovely photos!

And I’m envious of that scone!

Can’t help with your symptoms but maybe if your worrying and it’ll be a while til your next onc appointment ring the hotline at your hospital or the Ovacome advise line?? It may just be one of the unavoidable side effects whilst on treatment that will resolve or they may be able to advise something to help x

You look very well and beautiful in the sunshine though 😁

Bev x

[harpist_UK]

Lovely photos, Janet - what a magnificent month it has been! Can't answer your question about the neuropathy, but I guess the Rotterdam can be blamed for a lot!

[Janet235 in reply to harpist_UK]

Indeed...

I am now convinced that each chemo treatment just builds and adds onto the woe of symptoms we endure. Neuropathy really started to get worse when on taxol before Christmas and then doubled when on this latest regime... obviously it is still progressing but just hoping I've now reached zenith

Better bl***y have!!! 😣

[Kryssy]

Hi lovely. What a beautiful day in the sunshine and the photos are lovely. You are looking well and happy. I must say, being in UK for a few days has been a joy, weather-wise, but I'm feeling chilly all the time. Everyone is in T-shirts or even bare armed and I'm still bundled in my cardy. Vest won't come off for some time yet!! The countryside is so pretty and the thatched houses we see (including the one of our son's which we are staying in) make me realise how beautiful England is but I'm ready to go home. Unfortunately our flight is cancelled today due to French strikes so won't be off until Sunday. But I digress.

Only had one dose of the Caelyx with the carbo and got a couple of days of sickness and then the PN crept back. I was a little worried that I'd end up paralyzed again but after a week it started to go and is almost back to normality. I'm suffering badly with nose bleeds now. My mouth doesn't feel right either. Weird is the right word. No ulcers or anything but it feels as if it's sore and when I press my tongue up to the roof of my mouth it's a bit tender. Also feel that irritating little tickle in the mouth before a cold sets in. Nothing nasty happening with the skin thank goodness but it hasn't turned brown either. As I can't go in the sun I was hoping for a free tan. Apart from tiredness I feel ok. Have gained 5kg in weight though - but that's nothing to do with chemo. More to do with shoving fish and chips and copious amounts of alcohol down my throat. My clothes are getting tight now so super-gluing my mouth is the next option. I've tried to get the bicarb mouthwash here but no joy. I've gallons at home so first port of call will be the medicine cabinet. It was brilliant last year at keeping my mouth free from ulcers and other stuff.

I do hope you are feeling tickety-boo soon. It sucks that we both recurred so soon but I know you are a fighter like me so we'll do our best to march on the best we can. I'm having a CA test as soon as I get back as oncologist wants to see me before second chemo next week. I can't tell if it's working but the carbo did me well last year. Shame the avastin was a waste of time. I wish I had saved it for Lily-Ann.

Take care my friend. Big love xxxxxxx

[January-2016-UK in reply to Kryssy]

Hello Kryssy

Glad you're enjoying your stay in the UK. Head for a supermarket and buy a small tub of bicarb (should be with the baking stuff) and make your own bicarb mouth wash by mixing with water. V cheap.

All the best!

Helen

[Kryssy in reply to January-2016-UK]

Hi Helen. I did think of that but thought we were going home today so didn't bother. Think I will bother now. D-in-law has some as she bakes a lot. I hope you are as well as can be. Take care. xxxxx

[Janet235 in reply to Kryssy]

Great to hear from you... I knew you were in England, shame you didn't get to meet up with Lily Ann, but glad you enjoyed our just about perfect spring into summer weather days.

Like you, cold. I am bundled still in vests , ( lighter) jumpers and cardi to hand , whilst I noticed those swanning round gardens are in off the shoulder floaty numbers!

Glad you are putting on some weight... I think you were a bit under..? All my trousers now have at least two buttons on the waistband for thinner and fatter phases. At the moment I am midway at 55 kg and this afternoon hubby has booked a posh afternoon cream tea at a lovely new hotel in the park close to us with close friends for my birthday treat... yes I got to 71 😁

Hope you get back Ok - my son and daughter in law are both area air traffic controllers working at Swanick so know all about those pesky French strikers. We enjoyed our few days with them, but always glad to get back home.

Janet xx

[Eriksendi]

I finished my first line treatment at the end of November 2017 and have had neuropathy in my hands and feet and now also like you have a tingling down the side of my face, lips and tongue. I contacted my CNS who advised me to go to my GP. He says he can't see any signs of anything other than neuropathy? Took my bloods and ca125. All back ok and ca 125 holding steady at 11. Have oncology appointment next week so will talk to them about it. I did 'google it', I know I shouldn't but it does say you can get in your face as well. Hope yours gets sorted x x

[Janet235 in reply to Eriksendi]

Yes I am sure I have read a couple of other posts about spreading neuropathy... I will add to list of symptoms to mention on next visit soon but don't think there is anything which can be done about it - well apart from the obvious...stop any further treatment! So you have had it in your face and mouth since November? Do you feel it has now stabilised?

😬

[Eriksendi in reply to Janet235]

No I didn’t have it at first only in my hands and feet. Noticed it a couple of tones over Xmas but more noticeable in April 4 to 5 months after treatment stopped

[January-2016-UK]

Wonderful pictures Janet. I can see your hair has grown! And the scone......

I've still got a lot of numbness and tingling but only in my hands and feet. Maybe ask your CNS for advice. Let's hope it goes away.

All the best!

[Janet235 in reply to January-2016-UK]

Yes it grew back after the taxol and amazingly still intact, even though I was told I would lose it again... But now it has gone into upright shock and frizz, I keep trying to oil and flatten it down.... 😳

Yes let's hope numbness goes away.... x

[Kryssy in reply to Janet235]

Funny but my dead straight auburn hair is curly and black and white now. Hubby keeps saying he likes it and I should keep it that way but I'd like to grow it long again. Got more grey but hey! I'm nearly 70 so have done well so far. Even the wind goes through it now which feels a bit strange. Hasn't even thinned with the caelyx so I'm not in the 1% who lose it. Happy days. I've got hairier legs though, which isn't nice. I'm keeping Veet wax strips on red alert all the time. Hair on arms didn't come back and hair underarms disappeared 20 years ago and didn't return either. Ain't it strange what these cancer drugs do to the outside. No wonder they mess up the inside too.

xxxx

[Lyndy]

Just a thought Janet but did you touch any plants and then put your hand up to your mouth? There are plants which can give you a reaction. When I was on chemo I came up in a rash across my face having touched something and ended up in hospital with fever...let’s hope that’s not you but take care xx