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.

Sorry for the mega paragraph

Just to add another hopefully positive story I had HL about 25 years ago just after university and I am very much here and living a full life.

While I realise your DH hasn't had a full diagnosis yet, treatments are vastly improved since then too.

It is a very worrying time though so hope you get as much info as possible soon.

Guy - this is so painfully familiar to me. My heart goes out to you, your DH and your DC. You are clearly exhausted, mentally and physically, but you need to stay strong for your DH and DC. Would your friend take the children this afternoon instead for you so you can maybe sleep for a couple of hours, or even just rest. I often found I could doze off during the day but it was impossible to sleep at night. Hugs for you and I'm here if you need to chat xx

Thank you so so much for keeping replying to me, you are all helping me so much and I will try and respond to everyone. If I forget any please know that I am reading and re-reading all of your posts often.

I have today started taking multivitamins so thank you for that. I had a couple of errands to do today so the children and I left the house early (8.30) so I didn't have to hang around waiting and also it was quieter outside. When we came back I put toddler ds down for a nap and made a cottage pie for dh's tea so at least Ive done something. I think I haven't cried quite so much this morning, and whilst it's nice to not be a snivelling mess I also feel kind of bad that I don't feel as 'on-the-floor-in-bits' as I have been, does that make sense?

The postman has been but no letter from the hospital so il be phoning in the morning to speak to the doctor who gave the diagnosis's nhs secretary, and hopefully she can tell me if the referral has been received and things are moving.

Twodogs- what you have said has brought me some comfort and something to cling on to until we know. I truly hope that things turn out ok for Dh and us.

Finding - thank you for your post. Don't apologise for the length, I like that you've told me so much and understand exactly where I am at this point. I'm hoping we don't need to be as scared of going through chemo as we are at the moment, right now dh is worrying more about having the biopsies. I've told him il be with him all the way and that there will be anaesthetic but he really is scared. So did you find the chemo 'easy' (for want of a better word) to fit in with your lives? I'm hoping that we will have a routine that is manageable, I know how worried dh is about being self employed and how the business will manage. He's hoping he'll be able to work on his good days, even if only the odd half day to at least have a presence there and sort out anything.

Bluebell - thank you. I don't think my friend would be able to take the children for me today but it's certainly an idea for the future.

I feel bad that I'm not out and about with the children seeing as it's the summer hols but I can't face it at the moment, pretending everything is normal just yet. It's hard trying to process everything, on the websites mentioned I will read a bit, then back off cos it gets too much. I hate being in limbo

I just never ever thought this would be something that I would have to deal with. Naive I know considering just how many people are affected by this awful disease. My dad had skin cancer, my grandad had a brain tumour (both fine and dandy now) and my great grandmother died from stomach cancer when she was nearly 90. I can almost understand it in the elderly, but young people? I wanted dh until we were both old and grey.

He's in so much pain this eve, and has vomited and also last night (sorry tmi) and I don't know what to do. He's trying to rest on his camp bed whilst I sit with him. I'm so scared. I offered to phone an ambulance but he doesn't think it calls for that, I hate feeling so helpless. He asked me to sit with him cos he's too scared to be by himself, I wouldn't wish this on anyone. I'm worried now that if he keeps vomiting then he'll lose even more weight and he'd really been trying to keep eating. I think he's dozing off now because I can see he's starting to shake and twitch about

The evenings are the worst

Does he have any painkillers that he can take? Don't force the eating, let him eat when he feels ok to. It'll be ok to go a while without anything but water. I completely get that anxiety but in this immediate moment he just needs comfort. When you call in the morning explain about the discomfort, they may be able to get him some pain relief sooner rather than later or recommend something his GP can prescribe. Sending lots of love

Has he seen the gp? Get an urgent appointment for some painkillers, sleeping tablets and for some supplement drinks like fortisip or ensure. With a cancer diagnosis, prescriptions are free which is something! The drinks aren't great but a good way of keeping weight up. Having said that my dh has lost 4 stone but he could get away with it! We are trying to keep it stable now and make everything high calorie - blue milk, cream, butter, lots of pudding, I reckon that if its not the cancer, I will give him high cholesterol and a heart problem! That's just a joke though. But seriously call gp and get appt tomorrow

Yes he has painkillers and I think they've kicked in now as hes up an wants to watch some tv. I've been buying him some bits that he can snack on as and when he wants to. I will mention sleeping tablets and see what he thinks as I can't remember at the moment if he has tried them before.

I'll be chasing the referral in the morning and will mention the pain he gets in the evenings, il also phone the doctors and try and get him in. Bothers me that a few of them just seem to try and fob him off, he was going to the doctors for months until one decided to take him seriously. I don't have much faith in that particular surgery at the moment.

When he's under the proper care at the hospital will they also sort out decent pain relief etc? Sorry if that's an obvious question

Guy - will message you

Yes, they will. You may find a GP isn't hugely helpful without guidance from a consultant on what to prescribe. As it sounds like he had had gastro-intestinal issues they may be wary of prescribing anything strong. A consultant may be able to give you a script even at this stage or at least the name of what the GP should prescribe. Explain it all to the secretary and ask them to check with a consultant.

Ok thank you both very much. He seems more comfortable now and hopefully we can go to bed soon. Fingers crossed toddler ds sleeps through tonight

I'm so, so sorry Guy. I'm thinking of you so much. My DH was also going to the doctors for months and being fobbed off. It was only when I insisted they did tests that his cancer, which was by now Stage 4 Advanced Lung Cancer, was diagnosed. I too have no faith whatsoever in GPs. You're doing an amazing job of loving and supporting your DH and your DC. Never be afraid to seek medical advice, anytime of the day or night if you're concerned. I told my husband if I was concerned at anytime, I would do this and I'm glad I did. Our Macmillan nurse was amazing and so supportive. Hopefully yours will be too. I wish I was near you to give your practical and emotional support in RL. Sending you love, strength and lots of hugs xx

Thank you bluebell I appreciate it. I don't feel very amazing dh just says he's glad it's him going through this and not me or the children. I don't like waving him off to work anymore now, I want him to stay with me but I know that's not possible and anyway he needs to keep his mind busy.

I've got a list of things to do today but first il be phoning the hospital secretary and the secretary of the gp that took dh seriously, that Dr said to phone whenever we felt we had to. I'm really anxious about the calls, my mind goes blank and my voice wobbles now when I talk about it. I've made notes but I know I won't remember anything. Wish I had someone to do all that for me tbh.

Dh is happy to wait until the hospital get in touch but I need to know that things are happening, dh is fine with me phoning. I'm super anxious now that the symptoms that caused the Dr to get him in are known as b symptoms and suggest things are getting worse, I just want them to get him in

I usually like Friday's, and the weather looks beautiful today but my heart is so heavy

Well I made some calls this morning, it's hard cos I'm just getting passed around from department to department and then ending up with an answerphone or a message that says the person I need doesn't work today.

I've left a message and will try the gp secretary again at 10 and hopefully someone will be there to take the call

Please don't feel bad about doing normal activities.
The old saying 'life has to go on' is very, very true.

Re chemo: a friend who has her own business had chemo for breast cancer last year. She carried on working throughout. She wanted the normality and she also had business to deal with.
She was at an advantage though, because the breast cancer didn't make her feel poorly.

I hope you get some answers today.

Thank you pax. Dh usually feels fine in the morning after a sleep but then the days can vary, I'm hoping once chemo starts he will start to feel better. I'm just waiting now to get back on the phone and try again, I aprreciate the nhs is so busy but some continuity of having one person to talk to and know stuff would be so much easier x

Dh managed to get some info, apparently he's now 'inbetween' the 2 services of you like, but all his details have been passed over and we should be hearing soon. Hes just received a letter which I presume is his copy of the one from the Dr that diagnosed him to the Dr where he will be having bloods taken on Monday.

I guess an appointment will be made following that? I thought he'd have been in sooner but from dh having spoken to the other secretary maybe this is normal

As soon as he was diagnosed, my DH was assigned a Nurse Specialist Guy. She was amazing and did a lot of the coordinating of appointments, treatment, tests etc for us after that. It was a huge relief, as, like you, I was ringing around and liaising with everyone. I totally understand how you feel about your DH leaving you to go to work, you want to spend every single minute with him. You really are amazing Guy, you're supporting your DH by letting him carry on working because you know that's what he needs to do. I was exactly the same as you. I longed for my DH to stay at home with me, but I knew he needed to maintain as much normality as possible. It takes a very strong woman to be able to do this. My DH carried on working, in between time off for treatment. His last day at work was three days before he passed away. He was just like your DH, all he was worried about was me and our DC. He was on reduced hours by this time though. Have you got support around you from family or friends? I didn't really have this, and felt like I needed to do everything myself anyway, but that's not really a good thing. You seem to be handling this just the way I did, taking control and doing everything you possibly can to support your DH. Just a little advice Guy, please don't forget yourself. You need to look after you as well. I know it's virtually impossible, but try and eat and drink little and often and take little breaks to try and rest, even if you can't sleep. The only thing I could eat was chocolate cake for weeks, but it just about kept me going. Sending you love, strength and hugs xx

That all sounds good. The NHS target is 2 weeks for referral to a cancer specialist so you should still be within that. Try to do something nice as a family this weekend if you feel up to it. I hope Monday goes well, I would think they will explain more then.

Thank you very much for such supportive replies. I think I'm on auto pilot today, I got my list of bits done then managed to sort another binbag for the charity shop. Heels I've never worn but kept for 5 years?! What was I planning to do with them? Why did I accumalate so much junk in my life? I don't need any of it.

I presume once the bloods are tested and a biopsy carried out then they will formally diagnose him properly and then we will get the relevant support assigned to us? As so far the diagnosis has only been done from the recent scans. So maybe the 'within 2 weeks' guidelines will start from the day of that confirmation of the illness? I don't know if that makes sense but I get what I'm trying to say

I'll reply properly shortly, I just need to shove the Hoover around the place x

The two weeks is from referral to seeing a specialist for a suspected cancer diagnosis, so you are within that. They will probably try to beat that target. I know this is a strange question but did the doctor 'diagnose' lymphoma from the scans or say he thought it could be lymphoma? The bloods will give an indicator and they may try an 'oscopy of some sort to get a biopsy, depending on where the scans have indicated it is. A PET scan is a useful diagnostic tool because it shows cancer cells on a scan, but they hold off doing that until they are fairly sure.

I see, thanks that helps. Maybe I shouldn't have said diagnosed originally, I can't remember everything dh said when he phoned and told me, I went pretty blank but it was clear that the Dr was really quite sure that it was lymphoma because then the next thing dh said he heard the Dr say was talk of chemo, biopsies, success rates etc. I wish I could've gone to take notes but we couldn't get any childcare.

He had an endoscopy with biopsy a few months back when they thought all the pain was gastroenteritis or a stomach ulcer etc but everything looked fine, talk this time was of a needle biopsy.

Sorry if I've confused the issue somewhat. I just remember the part of the phone call from dh when he said "I've got cancer", not "he thinks it might be cancer", if you get me.

No experience but just wishing you all the best. X

I cannot tell you how normal and peregecy ok that is. I went into the appointment with my DB and took notes, what he heard and what I heard were very different. He only heard cancer, chemo etc, I heard the detail. Your DH will have been in shock, the real answers will come at the next few appointments. You will get those answers soon. Try to have as good a weekend as you can.