My husband's lump appeared overnight too...I thought that was a good thing but clearly not. His has gone down slightly but clearly that too can't be a positive thing to hold on to.  I'm so scared. I can't lose him.

We have a ct scan next Fri and a biopsy the following Friday. He had an x ray which showed enlarged lymph nodes in his chest. It's not looking good.

I know how worrying it is when this happens. But mine was a pretty rare circumstance as it began two years ago with bone pain and it's gradually spread into the regional lymph nodes. Originally I was told it was a benign bone tumour.

How old is your husband if you don't mind me asking? And have they told you what kind of biopsy it will be?

Harry :)

He's 34. Not yet, maybe the ct scan will give us some more info? He's never had any pains, issues nothing whatsoever. 

Found out today that I'm having BEACOPP. Apparently because of the extent of damage to the hip bone area. I also have some nodules above my diaphragm so I'm guessing that means I'm stage 4. I'm feeling really miserable today. I just feel like all the odds are against me and it's just constant bad news. And all I've heard about BEACOPP is bad things like constantly being admitted to hospital and absolutely no energy whatsoever. I just feel really deflated today and like I'm already so over this.

Harry

Hi [@hbuck1]‍ 

So sorry to hear about the update. Totally understandable that you feel deflated, getting confirmed information can often makeyiu feel worse because it suddenly makes it all very real.

Honestly I know it feels absolutely awful now but you just need to find that Will inside you to get on with the first couple. Once they are behind you things will start getting easier as you won't have the fear of the unknown. Of course side effects can accumulate but atleast you will have an idea of how you react.

I'm so sorry you've gotta go through this. I know several people from my hospital who are on BEACOPP and the one thing they said is the nausea can be tough, so just be really firm with your doctor's and nurses that you want all the nausea medication available!

I'm not going to tell you it'll be fine because I know how empty those words are, but I know from your positive attitude in your previous posts that you've got the mental strength to fight this. feeling deflated, depressed or upset is totally normal and you're probably going to find your mood switches from positive to negative and back again a thousand times a day and that's okay.

I hope you don't have to wait too long to start treatment and that you can get on the mend as soon as possible. If you can bring yourself to then remember some of the tips I said about prepping for chemo, it'll make your life a little easier.

Also being stage 4 isn't the end of the line. I know that stage 4 is still treated with a view to get you into remission and cure in the long term so until you've tried it don't let your mind go down that route.

If you need to rant or have questions feel free to @ me so I get a notification.

Sending best wishes to you and your family

Rose

Hi [@hbuck1]‍ ​​​​​​

Just wanted to say that after 4 weeks of not knowing looks like we'll also be joining the lymphoma club! My husband to be precise. Not sure which type yet still waiting for the full diagnosis. But we may end up starting treatment around the same time as you so I thought we could keep in touch. How are you getting on?

Honey_M

[@Honey_M]‍ Hiya,

Ah I'm so sorry to hear that you may be joining the club nobody wants to join! I started treatment this Wednesday. Yes definitely I would love to stay in touch! Do you have any idea of when you should be getting the complete diagnosis? It's an awful time I know but do remember Lymphomas are highly treatable cancers and the majority of people who get them are eventually cured. Especially with Hodgkin's. If your husband has Hodgkin's he will likely be put on a chemo called ABVD which is given as a round every 2 weeks, with 2 rounds being 1 cycle (if that makes sense). Unfortunately for me I was diagnosed as Stage 4 with pretty extensive disease in my hip bone, so they started me straight away on a type of chemo called Esc BEACOPDAC. The first day was rough but I feel pretty healthy now. My Haematologist and Specialist Nurse seem confident that I will be ok so I have faith in them! If you have any questions about diagnosis etc feel free to message!

Harry

Hi [@hbuck1]‍ 

Oh god, so eventful!

I bet you're glad for the picc line already eh? So glad they could manage to get one for you you're gonna find it so much better.

Sounds so much like my first week of chemo where I was admitted because of nausea sickness and dehydration - so glad to hear they might have found the right medley of meds to help with yours! Hopefully now you have new medication for it you should find the next one slightly more bearable. The side effects of chemo really do taper off after a few days so here's to feeling reasonably normal in a week!

As for the dissapearing symptoms, I KNOW! it's absolutely INSANE isn't it? I was in absolute agony for 7 months because of the cancer, yet by my second dose I had zero pain! Haven't touched a painkiller since ( well, aside from a very closely monitored paracetamol when I have a migraine. That does bum me out how I'm not allowed any pain meds for those things really because it might mask a fever but I'll get over it haha)

It is a good sign! My interim pet scan was clear so let's hope it's an indicator of good things happening/ to come.

Sounds like your interim pet scan will be when I finish my treatment, my last dose all being well is on 13th January. After that I have to wait a month for my body to regulate itself and then I get a CT scan to see the final outcome of the chemo. Definitely something to work towards!

Yes getting that first dose out the way helped me too as I think all that anticipation and not knowing can be half the battle. It's not an easy road ahead but you've made the first step and you know you can deal with even the nasty stuff - so glad your cancer care team found you some meds that worked. Did you get put on IV cyclizine whilst you were on hospital by chance?  They put me on it and it was the weirdest thing ever! Knocked me out though so I loved it - can't be nauseous when you're unconscious haha! Apparently they give it to elderly patients and they go proper loopy on it, walking the corridors shouting and stuff so it must be strong! I'm on the tablets on a daily basis and they don't affect me anywhere near as much thank goodness otherwise I don't think I'd be functioning!

I don't know what your attitude towards the cancer thing is in general, but I've found a really funny Instagram page called thecancerpatient and it has lots of memes about being a young/youngish  cancer patient, plus a good community spirit. Just thought I'd mention it as it brings a smile to my face and gives me a good laugh about it when everyone around me is being deadly serious all the time and can't understand why I'd make jokes about it - but it's my coping mechanism!

So glad you're feeling more upbeat, do keep in touch

All the best

Sending best wishes

Rose

Hi Harry,

I'm glad you're feeling better and that you've started your treatment. We're still in a bit of a limbo. The drs kind of said it's lymphoma but they've not seen the biopsy results. When I asked about the possibility of it being sarcoidosis (which was also suggested) they got a bit flustered and said it can present the same way as lymphoma. There are a couple of more things that don't seem to add up so we're still holding on to that last tiny bit of hope. I remember you got misdiagnosed too so it can happen!

I wish we could just get started...so how long is your treatment expected to last? How are you finding the whole journey in general? Do you have people supporting you? 

I read a book by the Dalai Lama last night about suffering etc. I found it very helpful. It's about accepting that everyone suffers and suffering is a part of life. We don't see it so much in the Western world because we're sheltered but the Eastern cultures are more resilient in general because they see suffering on a daily basis and therefore are more able to accept that it's simply part of everyone's lives.

 Life is never the same it keeps changing (which helps a little bit with the WHY US?? questions). He also says that suffering should be considered a blessing because it teaches you different qualities that normally you wouldn't be able to learn if you didn't experience suffering. Don't know if it's helpful but I'm all about acceptance and positive frame of mind! This is just a hurdle right? We're not some poor unfortunate victims this can happen to anyone. I also watched a documentary on bbc last night about Doddie Weir. Very inspirational I highly recommend it. There is no cure for his illness yet he's still smiling.

Best wishes and take care

Honey_M