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Dh diagnosed with lymphoma last night

(204 Posts)
GuyMartinsSideburns Tue 04-Aug-15 02:07:05

i think exhaustion from crying knocked me to sleep last night but now I'm wide awake and my headache won't go.

Feels like it's a nightmare, first doctor said gastritis back in jan, then recently possibly Crohn's disease, and yesterday dh got this diagnosis after further scans etc,

We're waiting for more tests to find out exactly what we're dealing with.

I'm so worried. My mind is racing like crazy and I can't help thinking the worst. We're renovating our first home at the moment and due to move in during the summer hols, dh has a business that I'm now wondering how will manage, and with moving I'm going to be alone dealing with this. That sounds selfish I know and isn't my intention, I'm just aware of how strong I need to be for dh and our children and I'm terrified of what might be around the corner and how il cope. I'm nc with my family.

I just can't believe this is happening. Dh is 38. Any hand holding would be really appreciated right now, sorry for rambling.

BigRedApple Tue 04-Aug-15 02:30:02

Oh gosh, I'm so sorry. I have no experience with this and no useful advice. But I wanted you to know that there's someone out there, reading this.
Have you shared this with someone who can give you a bit of support? Family or friend.

HeartsTrumpDiamonds Tue 04-Aug-15 02:35:29

I'm reading too sweetie. I'm so sorry. Have a big, huge un-MN {{{{{{{{HUG}}}}}}}}}

bestguess23 Tue 04-Aug-15 02:50:07

Your story sounds just like my dm's, she went through exactly the same pattern of diagnosis. The good news is they have finally discovered what it is and he will get the very best treatment. High grade lymphomas are very treatable and he is getting the care he needs now. The next few months will be tough but you will be able to cope. We didn't have a huge support network either as we were NC with all family for it fell to me and my ds to look after dm when I was 15 and she was 13. My DB also had NHL 5 years ago when he was 19. You will be surprised about how quickly you will get into the flow of the next few months. Remove as much outside stress as you can and use any support networks you have. You will come out the other side, probably stronger and with a real appreciation for life. If you have any questions I might be able to answer from experience do let me know.

GuyMartinsSideburns Tue 04-Aug-15 06:15:42

Thank you for your replies. I managed to sleep for an hour or 2, toddler ds was up a couple of times and decided at 5.40 it was time to get up so I'm going to be shattered today. My head is still banging, I've had more painkillers. Dh has gone to bed for an hour - he's been sleeping on a camp bed in the lounge for months so as not to wake ds or I, I miss him near me. He'll be off to work soon, and will have to tell his employees the news. I'm hoping they will be able to keep things ticking over whilst we get through this.

My brother is supportive but over 200 miles away, and I have a friend nearby but obv when I move that will change somewhat.

I'm trying to have a coffee but I just feel completely sick. I don't want him to leave us sad I'm in disbelief. How am I meant to do day to day stuff when all I can think about is what could happen?! How do people manage? Our other children (9 and 7) seem to be ok at the moment, we all had a cry last night when they were told, not long after they were playing together then went to bed and slept through. Ds (9) said "it'll be okay mummy, they can treat it and we'll stick together". Just makes me cry more!

We were meant to finish emptying the loft this weekend, we've been chucking/charity shopping what we can and taking what we're keeping to the new house an putting it that loft. I don't know how I'm going to get everything done. Dh says we need to move in in a couple of weeks once the kitchen an bathroom is in so we can let go of this house and save the money. He's being very practical but I feel like I'm going to fall apart.

I want/need to know more but guess I can't until we see the proper people, and I worry about what Google would show me.

So much stupid stuff I used to worry about, none of it mattered one bit.

RedRosie Tue 04-Aug-15 06:53:48

Hello Guy.

My DH has Lymphoma (Follicular Lymphoma), diagnosed at 50... I wont say that it's been easy, but he's doing really well currently although he can't be cured.

Depending on the precise diagnosis, there's a lot that can be done for some kinds of Lymphoma now - including nothing which is 'watchful waiting' for some kinds of advanced but slow growing disease. Some people do well for many years both with and without treatment.

You'll know much more when you have all the information. Try to be as calm as possible and listen carefully. McMillan are very helpful for some people.

Thinking of you.

GuyMartinsSideburns Tue 04-Aug-15 07:00:47

Thank you RedRosie. So sorry to read you've had to go through similar. I think I just need the proper diagnosis and a plan made, all the 'what ifs' are difficult. Il try and remember to take a notebook with me because I don't think il be able to take it all in.

I don't think il be doing much today. Il have a look at the Macmillan website, thank you xx

Need to go and wake Dh up now for work sad he's too thin, I want to well up just looking at him. God I love him so much

RedRosie Tue 04-Aug-15 07:20:23

Yes. Take a notebook. If you can (I know this is hard) do try not to focus on the apocalyptic scenarios, just because it is exhausting for you both. I do feel for you. I remember all those feelings.

Once DH was diagnosed he was assigned a McMillan nurse who was quite helpful (although unfortunately he didn't really hit it off with her as he found her patronising! This probably won't happen to you).

Bestguess has good advice upthread - the 'process' will take over soon, and hopefully you wiill feel less out of control.

GuyMartinsSideburns Tue 04-Aug-15 08:15:02

Yes I hope so. Maybe soon then I shall start writing down any questions we have etc, I don't know if I can today. Feels like I'm watching somebody else's life.

bestguess23 Tue 04-Aug-15 10:13:07

I would steer clear of Google or if you do stick to reputable sites like NHS, Macmillian and the Lymphoma Association. LA and Macmillan also have loads of offline support you can access in RL if you have any questions. A notebook is a great idea, over the next few weeks loads of questions will pop into your head, some about the Lymphoma and some about practical things like what can he and should he eat. If he is well enough to try to keep him eating well at the beginning as treatment can cause weight loss so good to get as much good stuff in now as he can comfortably have. Ask at the hospital about who you can contact if you have questions after the appointments and how it is best to contact them. Be prepared for things to happen very quickly now but that is exactly how it should be, the sooner he starts treatment the sooner he is out the other side. Both DM and DB had Grade 4 (highest grade/most advanced) lymphomas and both went into remission after chemo. Don't lose hope, the doctors will talk you through the process and the outcomes.

RedRosie Tue 04-Aug-15 13:01:43

Again, excellent advice from Bestguess.

DH was also diagosed at stage 4, which sounds terrible and kind of is... But as he can't be ''cured' he needed no treatment for 2 years and then gained 2 years of remission from a single round of chemotherapy.

It looks terrifying now, but you will get through what's ahead because you just do somehow.

GuyMartinsSideburns Tue 04-Aug-15 13:58:06

Thank you. I've found a notebook so going to try and make some notes and be proactive. We don't know where we are yet regarding the various stages which just makes the worrying worse really. I keep telling myself I haven't known for 24 hours yet so Im allowed a fair few wobbles.

Going to try and write some questions now x

bestguess23 Tue 04-Aug-15 14:12:38

You are allowed as many wobbles as you need for as long as you need! Don't worry too much about the grades it doesn't massively change the process and the treatment. They will give you answers to all that soon. How are you feeling today? Are DH and the kids coping ok too? Or as ok as can be expected at least brew

GuyMartinsSideburns Tue 04-Aug-15 16:08:43

Thank you best. I've written some questions in my book and made a shopping list. I want to help Dh put some weight on before treatment starts but he's also gluten free so not as easy as it could be. I've made a soup for tonight as I thought he could do with the nutrients but worried it's not fatty enough if you get me.

I feel awful, I just want someone to bloody wake me up from this shit. I've taken it the worst, the kids are seemingly ok and playing etc. dh has got his practical head on, he's told a few people and is starting the ball rolling for making a will and checking insurance policies. He's kicking himself he didn't take out critical illness cover for the business or something but I said there's no need to beat himself up over that.

One thing I read on cancer research worried me though - something about anaemia being an indicator that it could already be affecting his bone marrow? I hope I'm wrong but it seems when people say it's spread to there then there's not much that can be done? I don't know. I can't do this

GuyMartinsSideburns Tue 04-Aug-15 16:09:52

I'm dreading bedtime because then it's just me and my thoughts

RedRosie Tue 04-Aug-15 16:13:30

Try to wait for proper info from the consultant. I know it's hard, the waiting.

My DH, at stage 4a, has bone marrow involvement. It doesnt mean that there is no treatment - he's walking, working, life-loving proof of that.


bestguess23 Tue 04-Aug-15 16:20:02

Don't panic just yet, I had the same reaction when I looked up what Stage 4 meant for DM the first time- it was in her liver and lungs as well. Everything I read suggested it was the end of the world, it was wrong. They treated it and she went into remission. The stuff that comes up on a search is often the scariest and rarely relevant to your case. It sounds like you could really do with talking to a haematologist and getting some proper answers. Does DH have an appointment soon? It's sensible he's getting everything in order but but don't let that lead you to think the worst. There are some incredible front line treatments for lymphoma. Do you know if it is Hodgkin's or non-Hodgkin's? My experience is all of NHL. If it is NHL the first thing you need to know from them is whether it is low grade or high grade (multiplying quickly or slowly)- management is different for each, what stage it is and what treatment will be offered, and when. Once you have those answers you will be much clearer flowers

Mermaid36 Tue 04-Aug-15 16:25:40

Please don't panic! My sister has had Lymphoma for nearly 14 years and is still here bugging us, and isn't 'ill'
It's one of the better cancers to get, as there are so many different treatment options.
Definitely check out the Lymphoma Association :-)

Kennington Tue 04-Aug-15 16:26:50

Try going to the lymphoma association website
Lots of useful information and support
There are lots of treatments and trials these days

GuyMartinsSideburns Tue 04-Aug-15 16:34:51

Thank you very much for the further replies. Nope I haven't been able to speak to anyone 'proper' yet but hoping dh gets his appointment very soon. I hate the waiting around and not knowing. So no idea what type yet. You guys are really helping though, it's most appreciated. I will look up that website too, thanks. Just broke the no contact to speak to my mum, I felt so alone.

Thanks again for your posts and giving your time to reassure me, it means so much xx

bestguess23 Tue 04-Aug-15 16:42:56

Don't be scared to chase the hospital or get your GP to if there is a delay. I'm glad you got to talk to your mum about it. Look after yourself.

IamtheZombie Tue 04-Aug-15 16:48:57

Guy, Zombie just has a couple of points.

First, this will probably be the most difficult part of the process for all of you. The not knowing and the waiting are hideous. Your life is in limbo and turmoil. Now that a diagnosis has been made, things will begin to move very quickly (although it will still seem like an eternity to you).

Second, much of what is available on the internet is very, very out of date. Zombie was diagnosed with Stage 4 breast cancer 18 months ago. According to most of the internet she should be dead now. But she's very much alive and kicking. Well, as alive and kicking as Zombie can be! New treatments and protocols are emerging all the time. Her oncologist keeps telling her that when / if the current treatment stops working, there is a substantial list of others to take its place.

Listen to the advice you've already been given. Stick with sites such as Macmillan, NHS and LA.

Zombie's thoughts and prayers are with you, your DH and your DCs.

Findtheoldme Tue 04-Aug-15 16:57:24

I'm sorry that you are going through this.

My blood ran cold as my little boy has had similar experiences and at the moment we don't have any idea what is wrong for certain.

I wish you well flowers.

Lovecat Tue 04-Aug-15 17:04:08

(((Guy))) DH was diagnosed with grade 4 (worst, most aggressive kind) NHL when he was 28 and given a rough estimate of 6 years - he's still with us and celebrated his 50th birthday this year smile

It is horrific when you first get the news, I know my mind was racing here there and everywhere and the need to hold it together in front of him/family nearly sent me doolally, but you will get through this.

There was talk of DH needing a bone marrow transplant because the lymphoma had spread into his blood stream - they thought at first he had leukemia because that was how it presented itself - but he didn't in the end. He had what was then an experimental treatment (found out about it through the internet!) at Barts and had excellent care.

I second the pushing of the GP/Hospital/Specialist - it was a long time ago when DH was diagnosed and we seemed to be rushed into treatment within a matter of days - but do be kind to yourself and not push yourself too hard.

bestguess23 Tue 04-Aug-15 17:12:10

If you ask your GP's surgery/hospital clinic they should be able to confirm the referral has been sent and which hospital and specialism. You can then call and chase the appointment. It usually is days rather than weeks for the first appointment as it sounds like a confirmed diagnosis.

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