Recently diagnosed

I did a 10k in March and was planning to do the Cardiff half in October - this will be postponed to October 2016 now - haha! Strangely enough, when I did the 10k I thought I was fit, it turned out I had serious illness on board! I love running as it gives me a sense of well being! I've never actually done any mud or obstacle runs, but would be up for that yeah. 

I'm also the proud owner of a Pembleton Classic, although haven't been on it at all this year, and I love my bike! ha

I'll dust off my running shoes. haha

Oh! so in envy of both your levels of fitness! I'm exausted just having been up a few hours, cooked and eaten lunch/breakfast, drunk coffee and tea, and quickly having tidied up the kitchen and cleaned... Not sure I've ever had a lung function test; they did X-ray them a few times during chemo but then they forgot about doing that towards the end of my cycles... months since chemo now, and feeling worse now than I did a month or so back I think, in terms of fitness and general health... Everything does seem a struggle though, mind, having to push through this fog created by the hydrocortisone, plus with the I assume leftover chemo brain fogging things up too... Just tried to fix a broken bathroom door, but had to give up as  my fingers weren't being coorperative, may tackle it again later, with a bit more gusto and less precision.... I'm sure a hammer oughta do the trick!

Don't think lung function test is standard Mark, I was being treated for a chest infection but after my PET scan they picked up scarring which is possibly bleo-related. The lung function is to see where I'm at with the steroids will find out more of the plan a week Wednesday.

Cezza, right let's do a mud run next year, anyone else want to join us?

xxx

Ahh, so that was more do with the inefection than a standard test during the chemo... OK! Not really done much all day here now, so not hopefully I'll even bother tring to sleep... spent most of the day trying to concentrate on various differnt things and failing, just spent a long while with headphones on, listening to white noise, so I coudln't hear anything from outside, and didn't have to talk to lodger or hear the radio...  Contemplating a bath now, but not really sure I've energy to clean it, or have one...Concentration actually seem to b eworse now than it was immediately after/ or during the chemo, not sure if thats still from the chemo or not... - trying to find a spa day, some decent looking onesround here, but with no concentration I've not even been able to decide which looks the best to pick... I guess I'll have to lie to them and not mention the lymphoma and stuff, or they'll  get nervy about it, i don't think my port is visable anhow from the surface, so they might not notice it.. Must try again to get someone from oncology to take a desicion on if they want it out or not, so I can get them to send me to vascular inserts, to have it removed (this being the protocol, as vascular inserts told us, oncology didn't seem to know or want to fivulge. Actually, that was kind of interesting, goign back to vascular inserts, to have the port accessed, before the MRI scan; turns out I shoudl have been doing that every time I had chemo, to get them to access it, as they know what they'r edoing ; no bruising or pain on it, at all, pity no one told me that whilst I was having chemo...). Must try find something to do for th erest of the evenign and night, which hopefully doesn't involve any more tea!- fennel, camomile, two types of indian, peppermint, ginger and lemon, ginger and honey, and jasmine, already today, - run out of differnt ones to have now!

Hey Mark,

That Spa sounds like a fab idea, massage is fine with Hodgkins, I checked with my nurse! You sound like you need a spa day. Have you thought any more about counselling? You have been through, are still going through, so much. It might help.

When is Karin(sp?) coming over to see you? I need to go to Lush, have nearly run out of Skin Drink and Dream Cream, might even buy some bath and shower products whilst I'm there. I have to go when I'm in Sheffield, 45 minute drive as I live in the sticks!

Watched all my boys (hubby included) play hockey for the same team today, youngest played up in the thirds ( usually plays for fourths). Was lovely to see all three of them on the same pitch.

Love to all and an extra hug for Mark today

Jakki xx

Jakki,

OO... definately go to Lush if you can! I need more dreamcream too soon, oo, skin drink?!; OK, I'm adding to the list for my next trip!
I've a couple of new products I've been trying from Lush; I've bought a couple of their new bath bombs; well, both bubble bars, the best one was the one with milk in it (called milk bar perhaps?); they're the ones you have to crumble in, under the tap, makes lots of bubbles, but so soft for the skin too!
I've also been given a few freebys;
Nadier (I think she's adopted me as either her boyfriend, or she's secretly after being my  'fag hag'), anyhow, she got me this 'temple bar', from their Oxford st branch; its got lavender and I think valarium in,  ment to aid sleep... ), oh, and I've a couple of small sample tubs, of a differnt shower 'thing', can't reclal what that is called; may go try one tonight actually, and shower rather than bath (yeh, and so I don't have to clean the bath first, no energy for that.

I'm still not sure about counseling, sure that might help a bit, but really its just all this physical stuff I've got that is the problem, and the chemo brain I guess too, and lack of concentration... No one at the hospital here has ever mentioned counseling to me, so not sure they're overly hot on that sort of stuff, maybe I'll try search it out, if I can concentrate and remember to do so... - I didn't even realise today was Saturday until about 7 PM, I thought it was Sunday for some reason... days are far too long with nothing to fill them with..


Karin is over at the end of the month, err, I can't recall the dates, of course... (I do have them recorded somewhere!) - was thinking of booking her and I into a spa one of the days  whilst she's here, so I guess I should go try them first on my own!

I guess I probably oughta make a final attempt to chase PALS up, they've still not replied. I'm also going to try and arrange private physio for my left shoulder/back, not sure how much of the pain is just tough luck, its the nerves dammaged, or how much is muscular; raised that at the last clinic, but they didn't even look at it; that arm feels kinda odd to me, too, like its got oedemia, or lymphodemia, but its hard to tell; I can't feel equally, as i have to feel the left arm with my right hand, and then my right arm with my left, and both hands due to the neuropathy feels things differnt anyhow - kinda odd actually my sense of touch in general is actually not too aweful now; but sizing things, and how much pressure I'm applying, or 'knowing where the hand is', are... just so odd! - yet, with dextarity, I can do buttons up, on either female or male buttoned shirts/blouses, each way round, using either of my two hand, single handedly... yet  some things still feel weird to touch..

So glad hearing about you doing so well though Jakki!= you should be real inspiration to the wingers like me!- I now half my trubble is trying to get motivated, at the moment, which is so hard when I'm sotired and fatigued all  the time... - I'm guessing my hormones are sutiably weird again today, as I've been quite down most of the day, for no particular reason...

right... motivation.. gona go shower, that oughta wake me up enough so I can settle into a (predicted but hopefully not going to happen)  night spent sitting up listening to the IPod drinking yet more pints of herbal teas!

thanks.

Skin drink is a facial moisturiser, it is made with sesame seed, smells slightly odd but I have been using it for 8 months now and I love it! Will try the milk bar, I loved the other bubble bars I bought on your recommendation in March.

I am a big believer in counselling, I have always been a very positive, happy person but a couple of years ago suffered from work-related anxiety, it was bizarre I was like a different person. I had 6 sessions of CBT (cognitive behaviour therapy) and it made a huge difference it helped me change my job and rethink priorities. 

Xxx

Jakki - I agree, CBT is excellent, and once you get into it, you can start correcting, and challenging your thought patterns. I'm quite a fan of minfullness too! 

Mud slinging here we come! 

OK... so, I guess I'll have to go for counseling... - lets face it, if I don't, you ttwo will gang up on me!!! - now, if my brain would only liie to recall, how much better I feel after a shower or bath... - like a differnt person, mentally now, having showered! - OOO! I shall have to find out what that little sample jar of coconut shower 'stuff' was; its gorgous! (OK not so good I guess if you don't like coconut, but... skin so soft!) - I exfoliated, of course, with the coconut exfoliating scrub (body shop actually), first, then the coconut shampoo... then this little sample/gift I got from Lush... ooo! Hmmm... of course, quite how I can spend that* long in the shower is another question!  Feeling hot again now, don't think its just from showering; been notcing asides the hot flushes I got from the hormonal strangeness, my temperature regulation has gone very marrow since chemo; I never had a huge functional temp range I liked sto start with, but now... it seems half a degree one way or the other, especially  towards the warm, adn I just can't cope... very odd...

Hello all, 

sorry, tried all day to post a reply yesterday, it just would NOT post! 

Jakki, I too hope the steroids can safely reduce now, and that your lung capacity will improve. Daughter found hers did, it was the radiotherapy and further lots of chemo that damaged hers, they tried very hard to tackle a node in her chest with the radiotherapy. Mind you, pre-this last transplant, her lung funtion was still over 100%! 

John, good to see you popping in especially when I'm not about these last few days! 

Cezza, research is ok, you will find there are more treatments available IF this doesn't work, but it will! So at least you should be reassured? 

The radio broadcast was ok I think, have had a lot of praise, it was an extra bit of my 15 minutes of fame, it was a full 15 minutes! I was nervous, especially at the start, settled a bit and then the nerves built up again as the interview went on longer than I thought....but drove home in much of a daze....hubs had recorded it though, so was able to listen. 

Then BP yesterday followed by a (delayed) train ride to be with daughter

Today she and I are off to Wales for that zip wire, am a little nervous again, but it sounds as if the weather should be kind. 

Hope you are all as well as can be....

hugs xxx