Recently diagnosed

Hi Tom, I've just been reading your blog. It's really good and will be a great support to others going through the same thing.

I got diagnosed with stage 4b last August so I'm nearing the end now (3 more of the dreaded chemo to go) so I'm on countdown. I'm finding Im worrying again now incase it comes back in the next couple of years. I wonder if you can ever stop worrying now!?!

I hope your 1st few treatments go ok. I just wanted to say it's not all bad. There are quite a few side effects that you have undoubtedly read about but the second week is so much better. When you get your treatment dates you can start planning some nice things for your 'good' week. That's what I try and do. It gives me something to look forward to when I'm feeling grotty and I focus on that. 

Anyway, keep blogging and keep positive. I'm sure positivity is what gets you through this!

I had a quick read and its a great idea for the newly diagnosed.

When my son had just been diagnosed i found a young mans web page and he gave his take on abvd and described his feelings and thoughts so well it helped me so much to try and understand (a little anyway) how my son was feeling on the bad days.

Keep up the good work.

As for the appointment on wednesday it was 4 weeks after the scan and several other appointments that treatment actually started but i guess each case is different. 

Just try and keep busy and do things you might not be able to doduring treatment.

Take care

Nice work on the blog! I thought about doing it but to be honest I'm just too lazy haha! Best of luck for the CT!

Went in to see the haematologist today, all braced for a diagnosis... turns out they need me to have more tests and the results of the biopsy (last tuesday) and the CT scan (monday) aren't available yet! So a big anticlimax. Had yet another blood test and have a PET scheduled in for next Monday

Definitely mixed feelings about the delay. Did anyone else experience a lack of communication like this? I wish I was told that the purpose of today was not a diagnosis - I guess I'd been mentally preparing so it's a little bit frustrating to not know more now.

She said they're having the MDT meeting next week to decide my diagnosis using the CT, biopsy, bloods and PET, so I understand why they need it all... so it's next Wednesday that's the big day.

Oh, Grrrr! 

What a waste of your time! However, a PET scan can usually be read quickly, so hope your next appointment will tell you what and how and when! 

Hugs xxx

So I've just been seen and I'm in stage 2A, which is early. The lymph nodes are inflamed in my neck and around my heart. I'm going to have 4 cycles of chemo (over 4 months, 1 treatment every 2 weeks) followed by radiotherapy for 1 week. Next stage is lung function tests then I'll start treatment - alongside a biopsy of my bone marrow to make sure it's not there - probably next Thursday. So good news, and a number of beneficial factors in terms of age strength etc.

Have fertility, wig and other referrals to go to next, but yeah, I'm glad I'm getting somewhere, and glad it's early. 

Any advice betweeen now and start of treatment?

Hey, good news, 2a is not bad.....as for advice between now and treatment, this is the time to think about  relaxation methods, find out what will work for you,  make sure you have some help, easy preparing meals etc if you are on your own, clean the place well.......keep as fit as you can too......

bone marrow biopsies can be sore, ask if you can have gas and air if you feel pain a lot, but also make sure they leave enough time for local anaesthetic to work well, like at the dentist, if you need a filling, if they don't wait then you feel more! Yes, and get a dental check up too! 

Hugs xxx

Hey thanks Moomy :) I'm just relieved I think more than anything that it's not anything more than that - good news about a bad situation, I suppose!

I guess I'm playing it by ear, depending on what happens the day after my treatment and how I can manage. I'm relatively fit etc but I definitely feel fatigue these days more than normal (something I'm sure will intensify after treatment begins).

It's weird to think that, here I am at work now having a normal day, but I have one week of this "normal" (well, the tail end of "normal" because I guess "normal" ended on new year's eve) life left before everything changes. The loss of independence is going to be tough - still deciding how to manage moving between my flat (nearer St Bart''s where I'm being treated) and my parents' house (suburbia, where I'll probably spend a lot more of my recovery)

But then I guess it could all be worse. I'm just glad I know what I'm facing (well, 99%, bone marrow pending) and I have a timeframe. 4 months (altho actually 5-6 all things taken into consideration) sound super long at the moment, though!!

Focus on the end rather than thinking of the long time, you'll be surprised at how fast it goes! Hope your work can support you through? If it is a place where you come across lots of bugs then time out sounds a good idea. However, daughter ( a freelance musician) was on a contract with a touring show (Chicago) and they were happy for her to get a 'dep' in every other week, then joining them on the week she felt good. It worked! 

HR might be a good place to ask for advice about work, as well as your boss. 

Hugs xxx