Recently diagnosed

Afternoon all. 

Hope you're doing all. So much on here since I last looked - can hardly keep up. 

Had chemo yesterday and felt awful within hours. There seems to be no pattern to how I feel as the time before I breezed through. Added to which, my son has a sickness bug - its like the house of horrors here! 

Eleanor  - I'm glad you had your chemo in the end. How are you now? 

Take care all 

Hi Cezza

Yep, it veers from "I feel alright actually" to "BLURGHHGHHHGHGGHGHGGH *rolls around in bed, (not in a fun way)* seemingly randomly - the only pattern I could see was that the first one was of the cycle tended to be alright, but day 14 tended to be bad.

Hope you're feeling better today!

T

Hey all....hope everyone ok....Cezza I've been exactly the same this round (had mine Friday and still feeling rubbish!) and my 7yr old son also has sickness bug!! gladly he's been shipped off to my sister's but feel such a lousy mum ....hope you feel better soon....where are you in your treatment?  I'm going into 3a of 6 but moving day to a Monday in the hope to get my weekends back.....sending hugs to all....Dxx

Sorry to pop in and interrupt everyone, but I thought you might be interested in reading our latest blog all about Moomy's story.

She is very active in this group as well as the other hodgkin and non-hodgkin groups, and has volunteered for Macmillan for many years now.

Say thanks to our Community Champions- Moomy's story

Cee

- As regards shrinking lumps;  personally I only really had the one lymphoma lump; very very large under my armpit; to the point wehre, I was not able to put  my arm fully against my side!; I still remember turning up for my second infusion, meeting the oncologist doctor, in the clinic beforehand; and saying 'Its shrunk a lot but there is still some there', and he felt it; and as he did so asked me to flex my pectoral muscle; at which  point, the bit I thought was remains of lymphoma popped out of the way, as it was a tendon; yeh, basically vanished to actuall feel from just the one infusion!

Also, as goes  mantras etc; I decided to approach my treatment in... a rather non-seirous way in some regards; I basically set myself the challange of going to chemo each time, to entertain the nurses.... - I never managed to fail to get them all in hysterics of laughter each and every time I turned up!; My way of coping I  guess... just being rather silly, flipant and ... jovial about it all, irrelivent of how I actually might have felt; and, a good deal of just being 'bluddy minded' as and when necessary, - I think I've said this a few times, maybe not on here; but over teh course of my 4 cycles, I think its the most giglging, laughing and being silly, consistantly I  can recall from any other period in my life... - yes, even the joking with  paramedics, as I was being driven in an ambulence to hospital, when I had a bad infection!; Luckily they had a decent sense of humour, so whilst they were taking my observations, and doing all the proper medical stuff, assessing me en-route, to the awaiting team in A&E, we just took  the  mic out of each other in the back of the ambulence... - An hour later, I was in the   Cancer assessment Unit, in a bed, having antibiotics put into my port, whilst chatting to my fiance, and drinking coffee... - I'm sure there must have been moemnts I was kinda petrified when things like that happen (septacemia isn't fun), but, one doesn't recall them as well as the more plesent bits, even just a few weeks after they've happened! - But I guess everyone copes, differntly, or just has their own way of coping... especially with the mental/emotional side of it all- I can't imagine how I'd have coped without William, my fiance, but, well, I guess I would have, somehow, just very differntly....

And, not everyone een gets the hair loss!; mind, all the nurses and  doctors, do seem really very supprised I've kept nearly all mine, so I guess loosing head-hair totally is more normal for ABVD, but, then I've never really been very normal....



Well, a fairly good day here; wow!; got all the junk taken away! and discovered all the dirt and dust underneath!; Had to get William help me clear the worse of that, heaven knows what bacterial and fungal spores would be lurking about in that lot of grime.... - I'll finish off the finer detail of cleaning it up later, and hopefully get round to mopping the floors there too, at some point.

No meeting up for tea/coffee, with W's daughter; she's got a couple of vomitting children at home,,, and even if she could have made it out, that would probably not be a good idea for me whilst I'm this close still to the last chemo... Did some regular grocery shopping in town; but was goign to go back, out of town to do some bits, but then I was just too tired... - I was up at 7 today, after bed, some time after 2, and the last couple days I was pretty busy and active, so maybe.... just this once I'll let myself off... - but only so long as I use the rest  of the day wisely... and hopefully get the hallway downstairs clean if nothing else.

So William and I had lunch... and he's gone off home again...  - I'm almost... almost tempted to I don't know... feels kind of odd to even think about it... ry for a nap or just  a lay down... but... nah, I've stuff  to do.. - maybe one of the easier tasks first, sorting out the     cables, tidier/neater on the back of the hifi unit; I can do that whilst sitting down so that oughta not be overly tiring... just need my wirecutters and crimpers etc....



Hope everyone's OK, especially you, Eleanor, hoping your first experience was a good one... or as good as can be expected.hoped for...

Hi all

T - totally agree - that bluurrggg feeling is horrible! I just can't wait for it all to be over. 

Daisy - my son is seven also. How has your son been through all this?. I got a PET next Thursday to decide if I'll be continuing with ABVD or moving to Esclated BEACOP. If I stay with ABVD, I'll be on 3A NEXT. The end seems so far away!!

Moomy  - Just read your story - how inspirational. Your daughter is proof that you should never give! Also, hats off to you - you sound very busy in your retirement. 

Take Care all

Hi peeps I live to tell the tale.... So far.

how are you all? It's sunny! 

So 1a , went so much better than I imagined, only thing was the IV steroids,,, will wait to see what you have tomorrow Cee... Then hit with fatigue. Droopy eyes half way through the chemo the. At home I looked like that old Disney dog with sad eyes?? Haha old school!  Not sure what he was called but he was like the dog version of eeyore . Didn't sleep all night despite the tiredness... I think a few of you also have this? So dozed this morNing, mike worked from home and phoebe in nursery. Full of tablets for every conceivable possibility plus for the chest infection. Had to write out a plan of when and how to take them all! It's like being at work but organising my own healthcare instead of someone's pay! You defy need help to be on the ball with all this especially when you are low. 

Petrified of the germs and subsequent infections so hand gel is everywhere. Going to wash towels more frequently too and having your own hand towel sounds extremely sensible. Got to put it in a secret location. Also things like a sponge in the bath, my daughter had taken it for a walk the other day and found it in the kitchen on the floor. Got to be on it with my personal items staying clean! 

I need to put her in a sheep dip when she comes back from nursery! Rank! I can see the germs on her from that place! Eugh.

i am also worries about the interim pet scan... I can't even imagine what would happen if there is no sign of it getting better? I don't have any external nodes that were raised all my stuff is spread everywhere internally. God help me. So I do t have that satisfaction of noticing it working. Also the doc said I would feel better in weeks to come but I never felt poorly just back ache. Which weirdly has gone in the last month. If I was asked to go to the docs now I wouldn't say I had reason so I guess fate that I did push it 2 months ago. 

What about other peeps how you all doing? sorry to the ladies with your little boys being poorly it is sooooooo hard. 

Cee, any news? 

Must ready Moomy's Page. Xx 

p.s tscantle or tom! 

Elena

Hey, Cee, your story made me giggle! especially about the bath sponge! 

Just remember those scans give everyone huge scanxiety, but really it's just to advise the medics on the best way forward for you, and many get a clean scan first off! Yup, our daughter was a bit different, but she's there in remission now (and has someone else's blood/bone marrow cells to keep her there! ) 

Poorly kiddies bring their own worry, and I think if they were in daughter's family (i.e. my grandkids) I'd whisk them off and care for them till they were ok again! 

However, unless your white cell count is around zero then anything you get, the hospital will help you fight off again. Remember that by getting HL your immune system is already compromised, even before you have chemo. So if you've been otherwise fit and well, try not to panic, but take extra care! 

Hugs xxx

ps, am really touched by the blog and responses to it! 

You've done it Elena! Good girl. I'm a long way off yet. still waiting to hear when follow up app is after Monday's biopsy. 

Cee, I am desperately sorry! I knew that of course I did, hehe. I mixed you up which is awful, apologies on the wigs thread too xxxxxxx I have been thinking of you in the waiting period, Iwona is tomorrow... Xx can't keep up! Lucky am off work god knows what I'd be doing to people's contracts,