Dh diagnosed with lymphoma last night

[GuyMartinsSideburns]

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.

[GuyMartinsSideburns]

I'm confused about how to do that - he's seen a diff gp for each appt it seems, then was sent to a private hospital so he could get looked at sooner, this was when they thought it might be Crohn's etc, the specialist he saw yesterday was obv to do with gastrointestinal stuff but gave him the diagnosis and said that he would now be passed back to our nhs hospital and the cancer team. So I don't know who I should be phoning? We've known for 24 hours now, I should be able to phone first thing do you think?

[bestguess23]

I would call the private hospital and ask to speak to the doctor who diagnosed him's secretary. The secretary will be able to tell you if the referral has gone off and where to. 24 hours isn't too long but I don't think you are unreasonable to enquire. They may be able to at least give you a time scale.

[Twodogsandahooch]

I agree with Best Guess - phone the secretary of whoever saw him in clinic and ask where the referral has gone to. They should be at least able to tell you which hospital and you can then contact the relevant team there. Lymphoma is usually managed by haematologists, but oncologists may be involved too.

Before deciding on treatment the lymphoma team will want to review his biopsies and any scans he has had. If he hasn't had one already, he may need a PET scan and possibly a bone marrow biopsy. Don't be surprised if he doesn't start treatment for another couple of weeks or so.

Please do remember that lymphoma is a highly treatable form of cancer (as many on this thread have given real life examples). The next few months will be tough but he may well find that he starts to feel better not long after starting chemo. What a tough time for you.

[Lovecat]

DH was seen privately for diagnosis for the same reason (speed, following the GP's initial misdiagnosis of leukemia), he was told at the private hospital that he could choose where he wanted to be treated but was advised that NHS would actually be better treatment than going private - the specialist who diagnosed him worked at the NHS hospital 4 days a week and only 1 day private. He did all the referrals and arranged DH's first CHOP session (chemo for NHL to shrink his tumours) within the week. It won't do any harm to call the specialist's secretary and ask where he's been referred, then chase that up from there.

[GuyMartinsSideburns]

Thank you all very much that makes things clearer. He needs to make an appt for bloods on mon, apparently the cancer team are aware and he should be in for biopsies soon.
Going to try and sleep now xx

[Lizsmum]

My DD (36) was diagnosed with follicular lymphoma just over 3 years ago. It's not curable but it's treatable and she's working as a teacher, full time, bringing up her own DD,has put back all the weight she had lost and leading a very normal life. She gets tired, and chemo wasn't fun, but she's doing well now. If it's a slow growing cancer (they call it indolent), as hers is, don't be surprised if the team that look after him don't seem to be rushing. Speed isn't so important as getting the treatment right. Good luck

[GuyMartinsSideburns]

I've just made his bloods appt for Monday, will things start moving after that? Or should I be chasing up for the biopsy appt? I don't know which order/how they do things so unsure whether to phone or not if they wouldn't do biopsy until after bloods result, or if it's 2 separate things and I could phone anyway?

Sorry I'm rambling, I'm confused,
I'm still upset and not sleeping and I'm finding it difficult to stomach much. Dh is happy to give them one more day whereas I'm feeling helpless and feel like we shouldnt be waiting around.

Maybe if I ring and chat to the secretary she will know how best to advise me x

[GuyMartinsSideburns]

Just phoned, secretary hadn't had any specific instructions just yet but is going to speak to the doctor and get back to me. Not sure what's going on now

[Findingthissohard]

I'm so sorry to hear this.

My dh has stage 4 oesophageal cancer and def the worst bit was the waiting for tests and results and a plan. Sadly we are back in that situation at the moment, waiting and in limbo. My thoughts also get swept away with how I will manage but it's really important to try and focus on one day at a time. Everything is up in the air and there is nothing you can control. It's horrible. Try and eat and drink little bits.
I'm in hospital at the moment and watching my husband having chemo and I am really trying to take each day as a blessing.

I hope the secretary gets back to you with some news today.

[GuyMartinsSideburns]

Thank you Finding. It's heartbreaking already, im so sorry you're in a similar situation. I'm only (almost) 2 days in and I can't believe it, I'm trying not to think the worst but I know it's a possibility and it devastates me.

The children seem to be managing okay, they're still eating and drinking, sleeping through and playing etc but I'm so scared about what may lie ahead. I had to go out this morning and was in such a daze, and so much seems pointless right now.

The secretary got back to me, said obv she couldn't discuss dh with me but she could tell me that she had now passed on all of the relevant letters etc and that we should hear from the nhs hospital very soon. She gave me the number of the dr's secretary that works at the nhs hospital so I can phone her. I thought id give it until Friday and if we hadn't heard anything by then I will phone. Do you think that's ok?

A friend came round earlier and left a short while ago, I had a bloody good cry on her. I still can't believe it. Was waking in the night and remembering, crying then going back to sleep. This is the hardest thing I've ever done.

My thoughts are with you.

I'm struggling with getting my head round it, even though I know there's no reason why it should/nt affect anyone I can't help thinking 'why dh?'

I'd do anything to sort this out and make him better. I feel numb

[GuyMartinsSideburns]

May I ask how you and your dh are finding the chemotherapy? I'm worrying about the process, how dh might be, will it hurt him etc he's concerned about more weight loss, losing his hair and needing lots of help with stuff but I've said I'm not going anywhere and I will love him and look after him always. I completely understand if you don't want to talk about it tho, that's fine. Xx

[RedRosie]

Poor Guy. And others in this situation.

I remember this time. Awful. But do try to stay calm, and wait for the information you need about your DH's specific situation.

Chemo is different according to the regime adopted and the person... Try to hold on until you know more.

[GuyMartinsSideburns]

I thought I'd replied but obviously it was lost somewhere. I read that there are many types of chemo just before I read your post so I can understand a bit better now, thank you.

Fingers crossed we get the appointment date through soon

[bestguess23]

I hope you get your appointment soon Guy. I'm glad they've sent the papers over now. I think it's fine to call on Friday, the worst they can say is you won't hear more until x date. They will be very used to people in your situation worrying, naturally, so don't think calling is a nuisance, the odd call really is not. I hope you're beating up ok.

[bestguess23]

I just wanted to add that the emotions you are experiencing are entiry normal. If you want some outside support to talk it through the Lymphoma Assoc can often point you in the direction of local support groups for families of those with lymphoma and they also have a talk/message board for questions and support.

[wheresmyAga]

(((Guy))) just wanted to add a positive story. A close friend of mine had HL when we were 21. Slightly more than 30 years on, she's very well.
Hugs to you and your family.

[wakeupandsmellthecoffee]

I have to say it's a shit journey you are about to embark on.
Also a lot of focus will be on DH from the doctors and family and friends.
People will always ask how he is but not many will ask how you are coping.
So YOU need to keep yourself strong and healthy
Thank god for MumsHi there just got back at eight so good run
Euro tunnel really easy and got on an early crossing YAY us
Hope all ok your end looking forward to seeing you all mumsnet because you will get a lot of support on here.
My DH got diagnosed with non hodgekinsons lymphoma low grade
13 years yes 13 years he is still here
I wish you well x

[wakeupandsmellthecoffee]

Well that post went a bit technically wrong but you get the gist of things

[GuyMartinsSideburns]

Thank you all. Il look on that website again and sign up to the chatroom I think. Dh is doing okay, the kids seem to be taking it in their stride. I've still got a knot in my stomach but I've managed a sandwich so hopefully il stop feeling so shaky. Keeps feeling like I can't catch my breath, like I'm permanently on the edge of a panic attack.

[GuyMartinsSideburns]

Dh is having a bad night so he downstairs on his camp bed, toddler ds has woken me up so its me and my thoughts again. I'm so scared :(

[Twodogsandahooch]

Please don't be Guy. Keep talking if it helps.

Have you been told what type of lymphoma it is yet?

[GuyMartinsSideburns]

No not yet :( This worry is exhausting me. I just want someone to wake me up when its all over. I hate the days now because I can't stop worrying, and I hate the nights cos then it's just me. I'm up now for the day and I'm so tired, I don't want to cry anymore but I can't stop.

A friend wants to come and see me this afternoon but at the moment I don't want to. I'm getting fed up talking and crying about it. I should see her though because her ds and my children are all friends and they could do with some normality.

I need someone to make it all better, I can't do this for months. I've done 2 days and Im so tired

[paxtecum]

Guy, get some good quality multi vits with minerals for yourself.
You need to look after your own health and the will help with the stress.

My neighbour had lymphoma and had a successful course of chemo.
It did return 10 years later and he had stem cell treatment and he was well and lived a normal, full live for a further 10 years.

So all was good for 20 whole years after the first diagnosis.

[Twodogsandahooch]

Guy I know it is easy for me to say but please, please try not to worry too much.

Lymphomas are not like other forms of cancer. The majority will be cured.

I really do hope that your appointment comes through soon, as I am sure you will be reassured by what they have to say.

[Findingthissohard]

Reading your posts is reminding me how bad it was in those early days and exactly how I felt. The lack of sleep, the worry, the irritation with the kids, the crying, just the sheer out of controlness. I don't know that you will believe me but it does get easier. People say I don't know how you cope or you are so brave but it's just what happens and what you have to do. Just take it one day at a time.
Chemotherapy cycles can be very very different as there are around 100 drugs. My DH is on a EOX cycle which 3 drugs and he has it every 3 weeks. What made me rest easier as he goes to hospital for one day then comes home. I had worried that he would be staying in for 3 days and that worries me. We also had a pre chemo talk about his cycle so it was with 3 other couples about to start the same thing and have advice specific to each as well as side effects. He is given loads of other tablets to counteract some of the side effects and hasn't had any vomiting, nausea, mouth ulcers or stuff like that. However as he also has to take chemo tablets every morning or night, he hasn't ever felt quite right. There are only certain drugs that make you loose your hair and he is on one but it's made it thin rather than completely fall out. He said he wouldn't be bothered by loosing his hair but I think he is really. They are thinking of doing more cycles (depending on the results we are anxiously awaiting) which might make it all come out. Try not to worry about chemo. I've been amazed at how they have managed his symptoms compared to watching my grandma go through it 20 years ago.

I also got run down after diagnosis and ended up with a chest infection and exhausted from coping with it all. Vitamins are good idea. Sleeping tablets were out for me (dh was put on them by gp which helped him but because of kids I couldn't too) but I tried doing all my hypnobirthing and relaxed breathing to try and get the thoughts out of my head to sleep.