Recently diagnosed

Heya guys,

Just been out for dinner and pub with some fab friends and had a lovely evening with lots of fizz, wine and amerretto so excuse any mistypes!

Had consultant appointment today, have to stay on steroids 40mg for 3 weeks then 30mg for 2 more. If cough gets worse got to up dose again. He thinks I need at least 3 months steroids, balancing dose based on symptoms. Waiting for lung function test and detailed lung CT.

Gav and I laughed as consultant said my face will probably swell up! Gav thinks it's pay off for my hair looking a bit more normal, I have to look freaky in another way! 

Mark, good to hear from you, sorry you feel a bit lost, guess you need more answers to your medical questions before you will be able to feel more settled. 

I wonder how long I can feel good on 5-6 hours sleep per night? I am feeling quite high at the moment but wonder how long before I get a slump? Has anyone else been on this dose of steroids for this length of time? I am taking my nephews away for a week on Saturday and hoping that I still have energy!?

take care all

love 

Jakki xx

Hi Jakki! - not sure about steroids; I guess there are differnces between differnt ones; I've been on the hydrocortisone now, since, err, probably march or something? - highest was up to 60 MG a day (when I was briefly hospitalised with infection), lowest I was on was 5 MG X 3 per day, (too low really), and mainly like now I'm on 20 MG (split dose) a day; obviously at times, during the chemo I was on other steroids for anti nausea etc, but not a vast amount, and now, I guess the testosterone is a steroid too, and I've just been overdosed with a massive 100 MG injection of that; Mind, of course, my sleep was fairly rubbish to start with; Its basically non existant now, unless I take the sleeping tablets, which is a really horrible solution to be honest, and, well, I kinda don't like taking meds if I can avoid it (no painkillers in me since before I was diagnosed for example)... - so... not relaly sure; I think my sleep think is one of the major things messing me up, along with the leftover side affects on my memory and mind; hope you don't get too poor sleep on the steroids; I averaged 4 to 5 hours sleep at most a night, during the 5 months of my chemo, and it sort of just about kept me going.... Goodluck!

Morning all

Another rainy day here in Wales! My washing has been out for two days! 

Mark - You're back! I'm sorry to hear about some of your health worries and I do hope you get scanned and sorted. Where in the country are you anyway? It sounds ridiculous the way you have been treated! 

Jakki - Sounds like you have had a lovely night! My consultant/nurse keep warning about a slump after treatment finishes, but you seem happy and positive (as do most on here) which keeps me going. How are you doing emotionally?

Moomy - How's your daughter now? Busy as ever no doubt! I read her story the other day as something cropped up on FB. She's incredible! You must be very proud! 

Phil - what sort of work are you thinking of doing? ...I'm really missing work plus my pay took a nose dive this month! When is everyone else going back to work! 

I'm off over a friends today, then out for some food! I've had a really nice week! Cancer has been in the background where I'm hoping it continues to stay! 

I'm currently listening to my boy talking to himself while playing on FIFA. He really makes me smile!! 

Hope everyone else is okay! Take care and have a lovely day xxx

Jakki,

I was on 65mg of steroids a day basically for the whole of my treatment, yeah watch out for your face getting chubby. It was only my face and I didn't see it at the time but looking back on pictures is funny!

One thing about being on steroids for a while, I found even though I hadn't had much sleep, a hour or so after taking the steroid in the morning id feel fine and not that tired. I was very very grumpy when I first woke up in the morning, I felt rough and grumpy (maybe be due to the chemo) but I found after I took my morning 20 odd tablets (incl. steroids) id feel a fair bit better. I think I was possibly craving the steroids without realising.

When you do come off the steroids make sure they gradually take you off, I was just taken straight off them and had lots of withdrawal symptoms and I felt awful, i even had the shakes! I just kept thinking I was ill.

Take care :)

Jade x

Morning all 

Just to check in and say hi. Having some lovely days out with the smallish boy during school holidays. My energy levels feel ....dare i say it... normal again. Managed a whole day trip yesterday without feeling shattered afterwards. Just 'normal' tiredness at the end of a busy day.

Apetite continues to excite me too. Im enjoying food so much! When i think back to the dark days of dreading mealtimes cos i had no desire to eat and feeling nauseous when i did, this is so refreshing! Im now 47.6kg (not huge i know but i went down to 38 at one point!) Ive always been very slim, family trait, but now im having to go up a jeans size! Messed up logic i know but this reassures me that i might actually be recovering!

Had my smear test last week (anxious much) and that too has come back normal!!

Sending best wishes to everyone, enjoy your small triumphs, they all add up!!

Clare

P.s girls who were asking about periods. Mine came back 2 months after chemo and now getting them about every 3 weeks. Will take a while to settle guess xx

Hi folks! 

Cezza, yes, we are very proud of her, well spotted, she's ok thanks....will be back on immunoglobulin in October till about April again, once a month, as her white cell level still isn't that good. But otherwise apart from some possible gut problems, she's really well, and just getting a bit of a break from work. Mid August is when musicians get a chance to breathe! 

Jakki, I too hope the steroids can reduce gradually, and will have done their work. Take care about infections, especially chickenpox contact! Hope you do manage to sleep, that energy will wear you out! Long term, watch bones! 

Clare, good to see you popping in and also great to know you are getting back to normal, feeling normally tired after a day out and so on! 

Tom, hope you are taking note of what Clare said, and not working too hard?! 

Mark, really hope they sort everything out for you, this muddled way of dealing with everything seems inefficient! 

Phil, hope the thingy is about to be removed, and INR allows it! I guess you will be 'pup-less' by now, or do I remember you are keeping one for breeding? 

Hope everyone I's doing ok, thinking of anyone on chemo week and hoping it treats you well....

hugs xxx

Cezza-

Thanks! = a rainy day in Wales?!- The weather here in the South isn't much better... hmm, just variable I guess!- mind, I can't sense temperature anymore, since either the chemo   and/or the hormone stuff; my body temp seems to be utterly independant of the ambient temperature, and, often how warm/cold I feel is, itself, independant of my actual body temp; I.E., how hot I feel to touch; mind, of course, having said which, my fingers/hands don't sense temp well anyhow, due to the neuropathy; every time I run a bath, it feels fine to my hands, then I practially yelp when I jump in, and the water hits the rest of me!

I'm in Cambridge; so getting treated at Addinbrookes, a so-called centre of excellence for cancer treatment... - well, they probably are, as far as treatemnt goes, they just can't communicate, and opperate illogically throughout the process, prefering to keep patients, or at least me, entirely in the dark...

Talking of 'emotionally', I'm just so up and down at the moment, still its rediculus, and I'm not sure how much of that is due to my steroids and hormone woes etc... and how much is just the cancer stuff,- I'm not overly aware about worrying over the cancer thing; I'm so far past actually caring to be honest, It doesn't crop up.




Clare - so envious of your 'normal energy'! wow! and, your weight; so so envious!; I have put on so much, due to the steroids and things; now 2 stone heavier than I was pre-treatment and finding fewer and fewer clothes in my wardrobe that still fit, which is very annoying, as I threw out (well gave to the charity shop), a whole bunch of larger jeans, not long before Christmas, as I'd finally got down to a 30" waist (my biggest weight,  many years ago was over 40") - now kinda fitting into some 32" jeans, and trousers, but not others... so annoying!- and still so constantly hungry and having to eat - which, to be honest is how I've been ever since chemo started...- I know... I know... kinda the reverse of where one is 'ment' to be, on the chemo, but I just couldn't stop eating, I assume due to steroids; to the point where I'd have fish N chips, or something simular, about half an hour before having a chemo infusion....




Well. another interesting night.  Actually did sleep, to be woken at 7.29 on the dot, by scafolding being erected, somewhere very nearby out in the street.
err. probably TMI, but, one positive affect, within a day, of the testosterone injection, I am, seemingly no longer imputent, which is nice I guess...Though to be honest I was so past caring I didn't really bother too much by its loss in the first place, towards the end of chemo. (still not sure to what extent it was a chemo affect, or to what extent a consequence of pituitary dammage/malfunction; I guess the endocrinology scans, will find that out; yeh, endocrinology are now giving me MRI/CT scans to look for cancer in my pituitary, as oncology don't seem bothered).

Also, overnight, - large lump reappeared under  my armpit. hey ho. here we go again. exactly same spot as my initial presenting lump that was the lymphoma. - this time its painful though, which it wasn't before, and so, I guess its probably a cyst, or an infection.

talking of infections, I've still no idea how much more prone to them, we're ment to be post-treatment, or if we're ment to 'behave' differntly because of it, I've just returned to 'normal', I.E., pre-treatment levels of sanitising and cleaning etc, - still awaiting a chemo follow up.

I told William about the lump under my armpit, so I guess I'll be forced to the GP or hospital with it. I'd personally not bother myself now.

Also seem to have a more severe set of post-chemo like symptoms; aching all over, sore painful joints, and, somethign I never had before, itching. I'm kinda in two minds, of whether to bother with any of it or not, I've no idea how or who I'm ment to contact at the hospital, and the last time my GP wrote to my main oncologist bloke, he never bothered to reply; still awaiting for Pals to do anything, they seem slow. - half tempted to just turn up on the oncology day unit  in patient ward, and scream at someone until either security remove me, or I get to see a doctor. But, not sure I've really got the energy or entheuiasm for that. - just spent an hour meditating, so far too relaxed to think much about any of it right now; must go find food though!; damnit! I'll never lose weight with all these stupid steroids in me! - actually, guess I oughta phone up the endocrinology nurse, just in case the aching and stuff is a bad side affect of the testosterone injection, she never mentioned anything about it when I got the injection though...

William over this afternoon, and staying overnight, so hopefully he can tell me what I should do; my brains' so messed up really I know I'm probably not thinkign logically about most things, I guess oncology/hematology oughta be aware of the cognative affects too on me, from the chemo, though they seemed wildly disinterested last time I mentioned it, when they were still on talking terms with me, during the chemo appointments.

Hope everyone else is doing OK; I was really starting to feel a bit like myself, over the weekend, at my Dad's, so I guess a lot of the current stuff, is probably related to the testosterone injection, sadly, as my levels were undetectible, I had to have the massive 100 MG injection, so I'm guessing it shoots wildly up at first, the likes of which  my body has probably never experienced!

Hope everyones doing OK.

Hi All,'

Just back from the hospital and guess what!!  INR fine but "thingy" has gone, surgeon took a look at my arm, declared that she was glad they'd taken a photo of it as there was nothing to see or feel, so she marched me off to see the consultant who agreed with her and declared that there was nothing to be done.  I got checked out and had some liquid nitrogen squirted on something on my shin and sent home.  So we can only think that it was the chemo that brought the lesion on and the surgeon said that it had changed since she saw me 10 days ago and at that time she would have removed what ever it was.

Still got a couple of puppies hanging around, Miss Jamaica got her until early October as she has to have extra parvo shots and can't fly until she's 14 weeks old, one we're keeping and one the stud owner is having and hopefully a couple going this weekend.

Cezza, I'm a freelance IT Project Manager but looking for something more relaxing with less responsibility so looking for a Project Planner role, maybe part time/  Just started to get my CV out to a couple of agencies.

Just had to buy the wife a new Kindle as her old one has a frozen screen which apparently is a common problem and there doesn't seem to be a way of resetting it.

Have a good day everyone, the suns shinking here although we had our fair share of rain yesterday.  The weekend is nearly here!!

Phil

Thanks Jade that's really helpful, I do feel really well at the minute guess, like you say, that's the steroids doing their job! Consultant has already reduced dose to 40mg and in another 3 weeks if nothing gets worse can reduce to 30mg so lot less than you had! I will make sure not to just come straight off them. Thanks, hope you are well xx

Hey Claire,

Great to hear you sounding so well, whoop! Xxxx