Could I really be this unlucky?

frogmorton

Hi Jenny

Just popping by the check up on your progress.

I do hope you are off the anti-viral yukkies soon too :?

Well-DONE for coping with a party. The birthday girl outlasted you eh? Bless her, but at least you got there.

Take care of yourself and know we are all behind you here

Love

Toni xxx

thistlegirl

Well today at the hospital went pretty much as expected.
The doc agreed that there is a lump on my face, but can't say if it is tumor or scar tissue without the PET scan, interestingly it didn't show up on the CT scan but something on my tummy did but after an poke and prod he thinks that one is the scar tissue from where they did the biopsy that started all this.

So basically I am where I thought I would be, in limbo until the middle of January. 9 days left on my steroid taper then I will be treatment free for both cancer and Arthur then the fun begins. I need to keep an eye on the lump still there and get in contact if it gets bigger....

I also got a copy of my rhumy letter from my clinic appointment, she covered everything we talked about but the bit I missed was that if I have a flare before the cancer is sorted I will be hospitalised so they can confer with the cancer unit on my treatment. I wonder what she means as a flare-I was thinking immobilised but I fear she may be a bit quicker off the mark.

I didn't get any sleep last night, hopefully it was just a loss of brain off- switch and I can get back to "normal" tonight. I have been sleeping much better now I am coming off the steroids, but my energy is disappearing and there are a few joints that are beginning to ache some. I stopped my co-dydramol a couple of weeks ago so hopefully when/if it is needed it is more effective. Hey, I took plain paracetamol for a headache this morning and it worked!
My drug holiday seemed like a good idea while I was high on steroids and it felt like a choice, now not so much, but I need to last til the 16th of January, 7 1/2 weeks :?
I will do what I can to look after my body, not running back to work at the moment either, fingers crossed I am stronger than Arthur and I win this one.

Thistle

stickywicket

No wonder sleep was a problem, Jenny. You have a lot going on, so much to take in and so much to remember at a time when your body is letting you down on several fronts. I hope the January appointment will come before the arthritis can get a good grip and that the other stuff settles down and behaves. I'm thinking of you.

dibdab

Strange how life's little victories cheer us- paracetemol for a head ache just like everyone else Isn't it good sometimes to be able to do what other folks do -normality is hopeful.

Hope that you get through the next 7 weeks relatively unscathed- just try to keep being gentle with yourself.

Deb xxxxxxx

thistlegirl

I have been wiped this week, I think I caught a cold during my reckless partying last weekend. :roll:
My body is aching and and I am constantly tired, I am blaming the sniffles and not thinking about other things it could be.
So tired without the boost of the steroids.

Jenny

stickywicket

I'm sorry about this, Jenny. I can empathise to some extent as I am currently Snuffly, Sneezy, Dopey and Grumpy and searching for Doc

I hope yours is, indeed, just a cold though I'm sure the steroid reduction will make this even more miserable for you. I'm planning a weekend of as little as possible. Care to join me?

dibdab

Sending sympathy and hugs Jenny.....
(((((((((((((((((((((((((((( ))))))))))))))))))))))))))).

I had a rotten cold last week which wiped me out for 8 days, aching joints, sinus pain etc .

I hope it starts to clear really quickly- stay warm, plenty of warm drinks and favourite dvds.

Deb xxx

thistlegirl

So today was a hip day, I seem to have snuffed the sniffles but the aches are still there.
Both hips seems to get my attention today. My right hip decided that it didn't want to straighten out when I stood up, it felt like the joint was out of place or something was def in the way. So I sat back down and tried again gingerly and it was fine- hmm.
So I was chauffeured over to family Sunday lunch and halfway through the meal my left hip started complaining and by the end of it I was on the couch with it staightened and taking paracetamol- I am trying not to go back on co-dydramol until I need to but the paracetamol didn't touch it, and then I couldn't take to co-dy as too much paracetamol. Not happy but after a long hot bath things improved some.
I was really wanting/needing to get back to work before Christmas as I am running out of full sick pay, I am fine for now but if I need chemo it could be tight. I know my family will help if needed but I would rather not have to ask for money if I can help it.

I was planning on using this time to build up my muscle strength and stamina again but I am so tired and the aches are making it tough to get moving, I just hope they stay at aches for now.

Jenny

petals

Hi Jenny,

Regarding sick pay, I feel your dilemma.

Last November my OH had his kidney removed due to kidney cancer. He had already used up his sick pay quota three months earlier by having his appendix removed.

Consequently he faced 3 months off sick with no pay. To be honest he was not really fit to return in January but forced himself back to work as he couldn't afford to stay away any longer.

Fortunately he is now recovered and enjoying his life.

Personally I think cancer patients should receive special financial help when batteling such a serious desease.

Take care Jenny, I know its a very tough road you are travelling but there is light at the end of the tunnel, just keep your sights firmly fixed on it and you will get there.

Ps when my hips are playing up I lay on my side with a big fat pillow between my thighs. It helps take the weight of your other leg.

Best wishes Petals xx

thistlegirl

Thanks guys,

My rest seems to have helped, feeling more human now thankfully.

Petals how is you OH now? I am lucky in some ways that as a teacher my sick pay is good but not sure if it is long enough to cover this. I will see in the new year, if I need chemo- I don't even know how long the course would be for. My doc didn't want go in to it and I didn't want to think about it unless I needed to.

I am watching my pennies though after some interesting internet purchases made under the influence of my steroid high- Self banning from ebay was required!

I finally went and got my hair done today , I had been putting it off since the start of all this but knowing I have until mid Jan at least I bit the bullet. My hairdresser is lovely and I have known him for years, I told him I was off sick again but not why. I didn't like the idea of being stuck with him for 2 hours just after letting him know, from experience people need time to get their head round it and then normal conversation can resume. I had to warn him that my hair was shedding more than normal -could steroids cause that? but otherwise left it there, ignoring my uneven face...

3 more days of steroids then that is me done, only stomach medicine after that and pain killers when needed-I am no longer saying if, it is def going to be when and before Christmas too

Jenny

stickywicket

The hair looks great, Jenny. You're quite right not to face problems until/unless they arrive and also quite right to tackle them head on if/when they do. I guess all that 'pumping iron' stuff you bought when on steroids isn't really suitable

Toots

Just stopping by with a hug top-up Jenny. x

petals

Hi Jenny,

I am happy to tell you that my partner is doing really well after his kidney opp. The first few weeks back at work were very trying as he was so very tired and lacking in energy. For a little while he used to come home and go straight to bed. Actually he still does that sometimes, but, he had a scan 3 weeks ago and so far all clear.

Since his diagnosis and subsequent recovery we have thrown ourselves into living the best possible life we can.

There is definitely a life after cancer and once you get over this, the most difficult part, you will be able to put this all behind you and get on with living you life.

I'm glad you had your hair done, its always a tonic. Hang in there, I'm rooting for you all the way.

Love Petals xx

DebbieT

Hi Jenny,

I'm not normally so lacking as a friend, my sincere apologies.

I hope ure doing ok? U seem to be taking things in your stride. You're unbelievable & inspiring because of the humour & strength you continue to share!!

I bet ure hair looks lovely

Sending you many hugs. ((((Jenny))))

Xxx xxX

thistlegirl

Hi Debbie,
Great to hear from you!
I am doing ok but seem to have lost my batteries, I think my body misses the steroids-although my tummy is much happier!

Take care

Jenny

thistlegirl

I have tiny raised red spots covering both of my cheeks, my skin feels tight and angry and warm to the touch.....

It is as if my body knows I have a GP appointment tomorrow for a check up, I now have something new to tell her about :roll:

Sigh

Jenny

stickywicket

I'm sorry you have one more thing to add to the list, Jenny, but at least your appointment is already booked. Good luck. Please let's know how you get on.

dreamdaisy

I apologise for my recent absence from your thread. :oops: I have been thinking of you but, because I am not doing too well on my personal front, I didn't think I could offer much in the way of support.

You are facing (and dealing more than competently with) something which is way beyond my ken. Steroids are almost unique in the blessings / curses they bring but overall I think it must be better in the long-run to be without them. They have a role but they are not necessarily the whole answer. I am pleased you had your hair done - us girls need that little fillip every now and again, yes? DD

dibdab

Hope the appointment goes well tomorrow Jenny.

Big hugs (((((((((((((((((((( )))))))))))))))))))).

Deb xx

thistlegirl

you never need to apologise for being absent we all have our own challenges and lives to deal with and they come first.

Well the spots are getting blamed on the steroids too! They appeared 1-2 days after I finally got to the end of the taper down. Something to do with the body adjusting, hormones etc. So I have got cream for adult acne!

The doc also signed me off for another 2 months, that will take me past scans and results in January. I have paid sick leave til end of marchish then I think it is half pay after that. It is going to be a frugal Christmas for me.

Jenny

DebbieT

Steroids can be rather kind & almost make us forget we're arthritics .... They have never helped my fatigue tho & with the doses you were on & length of time, I'd think fatigue & some spots sounds about right unfortunately

Again, masses of these ((((( )))))

Xx xX

kentishlady

Hi Jenny. Will be thinking of you tomorrow, Jenny, and hope your appointment goes well. Let us know how you get on. You really are doing so well and we're all with you, when needed.

Beryl

(((()))))

thistlegirl

I have been knocked flat by my darling niece and nephew sharing their colds with me. It is obvious that their "good robots" are much stronger than mine-but we knew that already. They had the sniffles and were tired and "off" for a day or two. I am totally blocked up, coughing and spluttering and wobbly and light headed. Seriously considering wearing one of those face masks you see Chinese people wearing.
I don't want to have to avoid the kids every time they are sick but I think I will need to, especially until I know what is going on treatment wise.

Dear Santa for Christmas I would like a working immune system, as it seems to not have been installed at birth I feel that this is more of a correction of a previous error rather than a gift.

My face spots are clearing up with the treatment the doc gave me, thankfully. It is nice to have a symptom diagnosed and treated easily, that doesn't happen very often for us does it?

Thanks for the support as always, it would be nice if I had nothong to report until my scans in January but we all know I am not one for a quiet life.....

Jenny

stickywicket

Oh Jenny, you really didn't need this! I speak as one still coughing after over two weeks. I get paranoid over the winter about colds. Even my sister, who should know better by now, has been known to say "You don't mind me coming with a cold, do you?" three days before we were due to fly out to L.A. :shock:

The problem is not so much a lack of immune system as one that's so over-active it has to be squashed. We can never get the balance right.

Well done on the 'spot front'. Yes, the normal/abnormal sequence of problem>doc>meds>solution always does come as a delightful bonus.

thistlegirl

I am off to the eye hospital tomorrow afternoon for a check up. I wonder how they are behaving now the steroids have stopped? I have not restarted my eye drops yet either as my eyes were good- after over 15 years I can pretty much feel when I need to up the drops. Though I will probably need to restart them after the appointment but I wanted to leave them for the doc to see "untreated"

The hospital is right next door to my work so I am going to pop in and give them an update. I have been pretty much on radio silence with work this past month. Not fun saying I don't know whats going on multiple times a day so been avoiding this visit for a few weeks.

I still have the cold but the past day has been better so hopefully will be done with it soon.

Jenny