Recently diagnosed

Jakki -  Have a fab holiday! You are my inspiration! It's lovely to hear about you loving life! 

I want to do a 10k by March next year! Well, that's the plan..

moomy -

me too. I'm guessing the way the GP just said that's what he'd do, so quickly, suggests my being utterly   failed my the hospitals oncology/hematology, isn't exactly unusual. - He didn't seem at all shocked when I told him how hematology have dropped me, as soon as they pumped the final dose of chemo into me. no follow up at all since.

I can't go to another hospital; neither me nor William drive, and I can't think of any hospital other than Addinbrooks nearby, that would have any  serious attempt at an oncology/hematology department in it; I think clinically, etc., they're probably on the ball, but follow up, etc, just seems AWOL; of course, given their inability to communicate, it may just be a simple admin failure; I've no point at contact in oncology/hematology, and I guet the idea, from reading on here, most people do have a doctor at the hospital they can contact etc, if something crops upp; such as it has with me, and this lump back at the origional site of the lymphoma.


 

Communication between departments at the hospital is non existant. That's been one of the problems all along, as I didn't have a simple diagnosis of just the lymphoma, having passed through neurology the week before commencing chemo, after the brain hemorridge I had (still no follow up from that, and no one ever suggest a cause for it), and simularly, then being diagnosed with the addison's, then penitious  anemia and hypothyroidism (later having the hypothyroid and penitious anemia, un-diagnosed),  ment I was involved with endocrinology, oncology/hematology and neurology; however, whilst on chemo; neither endocrinology or neurology wanted to see me; hence its only now, thanks to endocrine professor, that endocrinology is investigating whether I have a brain, or pituitary cancer too; something I asked oncology to look at, back in febuary/March.

Going to go into hospital early on Monday, before the CT scan (endocrinology I think, to look at brain cancer), and try to speak to Pals in person, rather than phone/E=mail. - additionally, now, to the lump back in the armpit on the left side, I'm now starting to  get newe neuropathy on my left arm, which I assume is the radiation dammage to the bracchial plexus, that they convinced me wouldn't happen (it was due to possibility of this, I wanted to bail out of the radiation).

so aching today, again, although I'm guessin the antibiotics are kicking in now, too, which probably isn't making me feel too bright. not felt this ill since during chemo. Actually, I don't think I've felt this ill at any point previous, just trying to relax, with loud music, and wishing this heat would go away, as I'm still getting the hot flushes I think.

John; may look into that if I can't get anywhere with Pals on Monday, but I'm so low now on energy and strength, and stuff, that I'm not sure I've the capicity to do so.


Tom; glad you've got your final dates through!; still waiting for a letter for my final PET, which they said I should get at some point. Dentistry?  Hope its all clear for you, and finally over.  I so thought it was for me, until my recent turn for the worse, I was so nearly back to feeling normal, at the weekend I was away....



Jakki! so envious of  your enegy!; I don't get any buzz or anything sadly, from my steroids... so unfair! - I had felt like my energy was raising back towards normal, when I was away at my Dad's; several long walks out over the fens/marshes etc, but now, I think my energy sunk to a new  time low, especially today; though I did manage to push myself, to walk with W, into town, and visit Lush; I'm getting a lot of pain now too, which is new, legs, arms, back, shoulder, and joints etc... no idea  what that's all about..
Hope its another great holiday for you all!.

Daisy!;  Just don't get the steroids I've got!- I want Jakki's ones too!




Hope everyone with chemo at the moment is doing OK... - I was starting to forget how terrible you can sometimes feel on that... - luckily for me, I'm having something of a reminder/refresher course, given how I feel at the moment! so extra cuddles to anyone having to go in for chemo at the moment.

Oh Mark, that all sounds so pants! I really wish your hospital would get their act together! Hope you get some joy with PALS, get cross if need be, or get William to! 

Jakki, sounding great, so pleased your fitness levels are picking up fast, have fun in Wales, expect to see a flood of photos on fb when you get back! 

Daisy, steroids are ok-ish but not when you can't sleep, Jakki is reading loads though, and getting through housework.......maybe you might be right, we all need some! Haha! 

Phil, hope things are ok with you? 

Cezza, Cee, Daisy, Krazy, hope all is going well for you 

hugs to all xxx

Hi guys, 

Just starting to feel normal again after the second chemo.  Tiredness and feeling low has really took its toll. Feeling brighter today though despite the rain.  Just baked some chocolate brownies with the help of my daughter, looking forward to trying them later!

Mark I do hope the hospital sort things out for you.  I would keep on at PALS and also the consultants secretary until this gets sorted.  

Jakki I hope you are having fun in Wales despite the rain.  I definately could do with some of your steroids as been really tired after second chemo.  Its not normal tiredness. 

Ceeza, hope you are still feeling positive and enjoying having your son at home.  My kids have another week off school.  My daughter is really excited about going back and seeing her friends.  

Hope everyone else is well today. x

Hey all

I've had a lovely weekend, only slightly marred by the fact that I have the dreaded chemo on Tuesday! That said, I have had a proper bake off today. Krazy, like you, me and my boy have made chocolate brownies and a lemon drizzle and poppy seed loaf - both delicious!! 

What's everyone else been up too? Hope its been fun and splendid. 

I;m off to catch up on Wentworth! I'm such a telly addict these days.....

Daisy - 5B on Tuesday! We're nearly at the finish line, and (hopefully) we can put this six months of hell behind us!! Good luck for everyone else who is having chemo this week too!! 

Take care all

Well brownies were delicious. Daughter already looking into what we can make next. 

Wentworth is brill really into it the past few weeks. Had a film day today just relaxing with my family. 

Hope chemo goes well on Tuesday and anyone else due chemo this week. Nearly there! 

Good morning,

Quick catch up before the little pickles bounce out of bed ready for a new day! (Wifi is fine here, my boys are pleased!)

Krazy, well done on getting through number 2, keep ticking them off and try to make the most of your good days. Mmm brownies send some here!

Aw, Mark I want to come over and go with you to your next appointment give em all a good shake! Hope things get sorted and you get seen quickly, please let us know lovely.

Cezza, any more fundraising events coming up, I keep watching your total, you are doing amazingly well!

Tom, how are the energy levels, sounds like your work are pretty supportive but I am amazed still at how quickly you have gone back to full time; you are brilliant. Just make sure you have enough energy to enjoy life too.

Steroid update; still got loads of energy during day but did have a big melt down on the morning we were coming away! I had been awake since 4 and had breakfast at 4:30 to take the steroids. gav suggested we just grabbed me a snack for lunch as they wouldn't be hungry due to a late breakfast. Oh dear... poor man, did he regret that comment (extra context; steroids have made me extremely aware of food and I need to know where my next mouthful is coming from at all times.) I lost the plot completely-fairly hysterical, over when to have lunch- REALLY? Anyway we stopped for lunch you'll be pleased to know and Gav and the boys were able to remove their helmets and full body armour! Lol

Wales, great morning on the beach yesterday, body boarding and cricket (yes I had my wetsuit on it's freezing!) torrential rain in afternoon, the obligatory game of rainy football in the park 10 raincoats dripping round the house by evening.

Take care all

Love Jakki xx

Ooh missed the last two posts, lemon drizzle delicious! I haven't seen any bake off yet, think I'll have a marathon watch next week xx

Aww :) hope all are doing well! 

Cezza, Daisy - wow, are you both on 5b!? Can't believe how much time has flown..

Jakki I am back at work full time, yeah. I was SO exhausted yesterday, but I went to sleep at a good time and feel far better today; I think I'm definitely being naughty by drinking too many times a week and it's messing with my fragile lymphatic system a bit (it's weird to realise I have to pace myself!) so I'm really trying to limit my indulgences so my body can recover and I can face work... I can't have it all just now.

Only thing to report is that I think I have a muscle in my neck which twinges sometimes when I eat, which is under the bloody scar... it's just the very corner of my mouth on the left. Thing something might've happened when he cut it - it's still a bit weird. Sigh.

Have dentist tomorrow...

Tom

Hi all

Tom - glad you're good! I can't wait to over indulge booze wise! I have been so deprived these last few months! haha....

Jakki - No plans to do anymore fundrasing at the moment, but once I've fully recovered, I intend to do more! How are you fitness wise?

Yes it 's 5 bloody b tomorrow (wish it was 6b). Oh well, another one will be down! 

Good luck to anyone having chemo this week.

Take care