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.

So sorry you and your family are going through this.
My mum was diagnosed a few months ago. She's handling treatment really well.
Hopefully your dh will too and this will be something they all get through. Don't despair.

*i have no idea what peregecy was meant to say! Sorry!

thats- thank you xx

Best - thank you. Yes I imagine that is what happened. I wish I could've gone but like you say we shall find out soon enough. Bit of a busy weekend ahead but il make sure he doesn't do too much and we'll have a laugh along the way.

angelic - sorry your mum is going through this. I'm glad she's dealing well with the treatment. I just want things to be getting a move on now, but soon enough it will be and out of my hands. Maybe il drop some of the anxiety once I know that plans are in place and appts made etc.

Rough night last night, today I feel like I can't breathe

I can't read and run, though have no words of wisdom to help. Just to say sorry you are going through this and that you had a rough night. Hope his treatment gets sorted quickly. for you all.

Oh Guy, I'm sorry you had a tough night. Have you got anything to distract you even for a short amount of time this weekend?

We've finished clearing out the attic to ship over stuff to the new house. At least I can tick that off. Dh wants to get all the heavy stuff out of the way now while he can. Last night he was giving me business account details and phone numbers etc if I should need them and that's made me feel quite sick tbh.

We got a letter today for a biopsy appointment on the 24th. That will be 3 weeks to the day that dh was told. This can't be right surely? Because then it will be after then that he gets an appointment to discuss things, and then having to wait yet again for treatment to start? I was glad when the letter arrived and thought 'ok here we go, time to sort this' but now Im just anxious that this is all more waiting around that shouldn't be happening? I've phoned but obv no joy with it being a Saturday so I've left a message. Im a bit confused now really.

My dad was diagnosed with HL almost 2 yeard ago (still here!) and the timeline is very similar to what you have described. We did find that things seemed to speed up once the biopsy results were in so you may find the same

Maybe you could get some clarity from the doctor who diagnosed him? If they know it to be cancer it should really be an urgent referral which is when the NHS 2 week target kicks in. Treatment then has a 31 day target from the Consultant appointment. Technically everything refers to referral by a GP so I'm not sure if it is different because he was already in the hospital system. Were you copied in on the referral letter? Your DH can see it if it would help understand the position. It sounds like you need some clarity about what stage you are actually at i.e does he have a firm diagnosis/strongly suspected or something else? Macmillan may be able to give some guidance on how to get answers and reasonable timescales. Otherwise you could try to get answers for the consultant who diagnosed the lymphoma or the secretary of the consultant at the new clinic. Does it say what sort of biopsy? There might just be a very long wait for that particular one. Or it may be that someone has overlooked that it is a biopsy for a lymphoma diagnosis and it hasn't been treated as urgently as it should be. Try calling on Monday, they won't mind.

Thank you. So on Monday I shall phone the private hospital secretary as it was that Dr that diagnosed it, the secretary of the nice gp that listened to dh, and the secretary of the consultant that dh's treatment will be under. That sound ok?

Pretty sure its to be an ultrasound guided needle biopsy

I'd maybe leave the GP secretary to last as they are unlikely to have any specific information unless the hospital have already sent them something that hasn't been sent to you. It may not speed things up but at least they should explain exactly what's happening and what stage you're at in the process. If DH doesn't feel up to talking to people if he can take the phone for a minute he can give them permission to discuss his case, in full, with you. It might mean you can get better answers than if they are just talking about usual referral times etc. Good luck

Thank you very much x

How are things going?

Hello, excuse the silence it's been quite a stressful time as you can imagine. Last Sunday I phone the nhs 111 phone line as dh really wasn't well - shortness of breath, pain, very swollen legs, high temp. Paramedic came out and assessed him and thought he had a bad infection so took him into hospital. He was in for the week (wasn't an infection but thought due to the lymphoma). Biopsy done on the weds, confirmation on thurs of lymphoma and I took him home on Friday with steroids etc.

Had a call from the hospital today to get him admitted as an inpatient so he can start chemo first thing tomorrow (r-chop). He's got advanced non Hodgkin's lymphoma. I think I'm on auto pilot today, on friday at the hospital I had a huge cry but this was also due to getting to know the other patients on dh's ward and their stories, it all got too much and I went off to the loos for a sob :( Today I packed for dh and I'm all ready to go and be with him tomorrow. I'm glad that the steroids have given him an appetite, he can afford to eat more at the moment tbh.

Bit worried about how he will be after the chemo tomorrow tho. Anything you think I should take that he might need?

Thanks for thinking of us, I'm sorry that anyone ever has to go through this xx

I've just re read the thread, the replies are so supportive and amazing, thank you all so much xxx

Thank you very much, addicted. Unfortunately toddler ds has decided to drop the whole sleeping-through-the-night thing so I'm awake yet again settling him. Hoping to get a few hours straight shortly! Thank you for your reply.

I don't have any experience of what you're going through, but I just wanted you to know that I'm rooting for you all. Sending love and prayers from across the ocean. Day by day, hour by hour. Keep breathing, keep wailing and shouting, keep coming here to vent. Take advantage of every offer of practical help that you can. God bless.

Thank you. I'm with dh now, he's all hooked up to go and we're waiting for the chemo drugs. Nurse just said if they don't get here soon they'll prob keep him in again and do it tomorrow.

Feels really weird sitting here, still can't believe its happening. I saw an acquaintance when I was waiting for the bus, she was all 'hiya, kids having a nice summer hol?' Etc and I'm all 'yes lovely (!) thanks' like I have to be normal to the people that don't know, or the ones that we don't want to know, or because I don't want to bloody talk about it, when really I'm thinking 'well actually I'm stood here waiting for the bus to take me to the hospital where il watch my husband have chemo'...... It's like I've got to switch between different versions of me. That's going to get tiring I imagine.

Hope the drugs arrive soon

First treatment completed yesterday and we got home at 7pm. Dh seems ok in himself, if a bit queasy at times but he has things to take which should help.

Well done Guy and DH, I'm really glad to hear he hasn't been knocked for six. I'm not sure if I remember advice when taking certain anti nausea drugs to take them straight away so they build up in your system before you start to feel really ill?

I hope someone will know. I think Cyclizine does that so it takes a couple of days to really kick in...but that's probably not relevant to you.

Sorry, I'm not much help. I just wanted to say I can imagine doing what you did yesterday and pretending everything is fine and normal. Until you have your own head around the situation, you won't want others' thoughts and emotions to become overwhelming. I think it's sensible to take your time there.

Hope he continues to feel reasonably good xx

By the way Guy have you managed alright with all the password resetting and so on, I imagine that's the last thing you need to think about right now. Shout if you need a hand with it.

Your OH can get a 'lymphoma buddy' via the Lymphoma Association www.lymphomas.org.uk . They try to match you up with someone of similar age, diagnosis etc. it might be useful, there are so many types of lymphoma and they are all very different. Sending love to you and your family.

Stephanie - thank you. Also I think (hope!) im ok regarding the password changes but thanks for the offer, I may still take you up on it! I'm still wondering now if my account is actually ok.

Lizsmum - thank you also. I will look on there.

Dh has 'popped into' work to have a quick look over everything... I knew he was itching to get in there lol I guess he must be feeling okay to do that, just as long as he doesn't overdo it. If it takes his mind off things then it's got to be good.

Just had to tell another friend, I think I'd been avoiding doing it cos then it brings it up yet again and so now I feel a bit drained and tired but on the plus side she adds to the support I can call on.