Recently diagnosed

Good Morning,

Back from a fantastic two weeks away, I would recommend Corsica it is certainly a beautiful island. I love the fact that no one attempts to speak English and all the voices are Italian or French.

Well, I have tried to keep up with everyone whilst away but can't remember all details so hope you are all well. Cee, it's done hurray, hope you are recovering well. Cezza, keep trucking girl nearly there!

Tom, you went back to work very quickly after treatment ended it is probably unsurprising that it is hard to do full time, at previous pace, straight away. Hope you can sort something with your boss.

How are your INR (?) levels Phil, do they seem to be settling?

Well, these high dose steroids are a nightmare for sleep but have made me highly productive, been waking at about 5am and buzzing all day for the last 17 days! Also just weighed myself and have put 5lb on, well I did eat my own body weight in Corsican and French cheese. (It is bad when you know you've eaten a whole pack of one cheese to yourself cos the rest of your family didn't really like it lol).

I have done lots of swimming on holiday and some running and walking, my fitness is improving, I am on a mission this week to lose the 5lb before we go to Wales on Saturday. Fish, chicken, fruit and veg for 5 days, wish me luck.

Love to all

Jakki xxxx

Heya

Yeah it looked idyllic Jakki :)! well deserved... although I was very jealous. I think I'm going to go to Hong Kong once I am marked 'fit for travel'.

I love cheese too so I envy you! 

Sigh, I need a fitness drive. I was so tired on Friday that I went to bed early without any drinking, and on Saturday girlf and I went for crazy golf (highly inventive lol) but she was all headachey so we just slept on Saturday night. SO I feel a bit more rested today..of course that means I am straight back to the office to get knackered out again.

Hope all are well.

Tom

Morning all

I got my boy back from holidays yesterday so I'm feeling so much better - he really does brighten my life! 

Jaqui - your holiday looked amazing, I agree with Tom, you so deserve it! Where you going in Wales? Plus how long will you have to endure the steroids. 

Tom - Your're a trooper! I can't imagine going back to work that quick, let alone working through ABVD. Hong Kong sounds amazing. I lived there for a while and absolutely loved it! Glad things are good between you and your GF! 

How's everyone else doing? Mark, you've been quiet? Hope everyone else is good!

Before I go, I have a quick question. It's a bit delicate but got to ask. I literally feel like someone has put a red hot poker up my bum (sorry but that's the only way I can describe it), I'm now crying when I go to the toilet. It basically feels like the lining is very sore and burnt. The nurse tells me this is normal. Is it? I'm in so much pain!! I use molvicol to make it soft but it still hurts.. Sorry again, but have to ask! 

Cezza...sounds like internal haemorrhoid....you told me about Germaloids and ive been using the cream but also bought the suppositories which have helped a lot....hope you feel better soon Lxx

Hi Jakki,  Nice to have you back and I hope the break has done you well.  My INR is all over the place, they dropped the dose by about a mg per day but it only brought it down by 0.2 :-( so back in again this afternoon after another drop in dose, if that hasn't worked we will cut it completely for a couple of days which should do the trick and I go back on Wednesday for another check.

Tom, I can understand you getting worried with the itching returning, it's starting to hit me especially the scalp, I'm guessing it's the hair growing back in but as I didn't have any problems with itchiness before I'm not worrying but it is annoying.

I'm finding that I can do more before becoming breathless which was a real problem for me, when I finished the complimentary therapy at the hospice they were talking about a return to fitness course which they were saying would be around October time so hoping to be able to take advantage of that.

Hope those still having treatment are doing well and I hope Cezza you are feeling better, I found the last few sessions tough as you want it all to end but it still seems to be ongoing.

Phil

Hi Cezza, You can also try Fybogel as well as the Movicol, my GP gave me some, it tastes disgusting but it helped, I mixed it with a sachet of Movicol.

Phil

Cezza, anasol suppositories, make sure you get one which has a local anaesthetic! It's awful I got them really bad just for one week of my treatment but honestly I could have cried. Use cold dampened tissue to clean with after BM and I would advise straight in the bath. Feel better soon lovely xxxxx

Tom, Hong Kong is a great plan! You def need a holiday mate you have jumped straight back on the treadmill!

Phil, good the hair is coming in but not so good the itching. I am now getting some normal eyebrows growing to go with my white fluffy ones whoop!

Daisy, how are you doing, what cycle you up to now?

xxx

Thanks all - I'll get some suppositories later - it's getting stupid! 

Hey Jakki....I'm ok, thanks for asking :) struggling a bit with anxiety so had psych in today from local hospice access centre....she's arranging appointments with dietitian, counsellor and alt therapist....hoping it helps!  I head into 5b on Tuesday...so 3 left....

how are you doing?

Dxx