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Life-limiting illness

Just a little moan, and maybe a hand hold please...

8 replies

HeirOfNothingInParticular · 28/05/2017 18:43

My DH was diagnosed with cancer 3 years ago. He took the less conventional treatment route and decided to have chemotherapy and radio rather than surgery. All been good, although obviously we have had the the usual stresses of waiting between checks, call backs and so on... He is very close and never discusses his feelings etc, but told me recently that he has had some worrying symptoms that he may have cancer in another part of his body. I am really worried about this and have battled with him to see his GP, and contacted his consultants secretary to chase up his 6 month check up. Won't bore you with the ins and outs of this, but I have sorted it out.

I asked him if he wanted dinner tonight, and he said no. Then he said he would half of what I have! No way am I going to share my dinner. Made dinner, then he played hell with me and said it was far too much and couldn't possibly eat it all (he's usually a greedy bugger). I put half on another plate, he went to get the salad container out of the bin and filled that! He ate his dinner, then went back to the kitchen came back with the other half that he couldn't possibly eat!

I understand that he stressed, and he did say today that he thought he had cancer again, and I am also worried about that. He has a swelling on his neck, and his GP said it was enlarged lymph nodes from infection. I feel that he is being fobbed off by GP... My DH went back back and forth to that GP for 6 months before being referred with first cancer.

I am a member of a forum for patients with DHs original cancer, and experts on there say leave it for a couple of weeks, it could be a bug, but DH has been feeling unwell for more than a month. He never complains normally which rings alarm bells.

Apologies for rambling post, but I am feeling really stressed and no idea how to deal with this. To sum it up, how I deal with DHs angry behaviour, and how do I make sure he is getting the medical attention he needs?

OP posts:
SelenaValentina · 28/05/2017 20:45

Oh Heir, I don't want to read and run.

As you've worked out, DH is probably angry because he's worried sick about his and your future. You've contacted his consultant's secretary - what was the outcome?

Did the GP order any blood tests when he said the enlarged lymph nodes were from an infection? I think I'd be ringing for a telephone/emergency appointment on Tuesday, stating clearly the serious concerns, reminding surgery re cancer 3 years' ago and emphasising the length of time your DH has been feeling unwell, give symptoms, and emphasise his change in mood.

Best of luck and Flowers for your both. This cancer stuff is grim, isn't it? Peace of mind flown out of the window.

HeirOfNothingInParticular · 29/05/2017 06:55

Thank you SelenaValentine. I spoke to secretary last week as he hadn't had an appointment for his regular check up. At that point he hadn't told me about the swelling in neck. He has an appointment for the end of June. When he saw a GP he said swelling was probably due to infection and didn't arrange blood test. I told DH I was very unhappy about it and wanted to contact his specialist nurse, but he shouted at me and told me to keep my nose out of his business.

I did speak to specialist nurse anyway, but she couldn't give me any reassurance, just that his appointment was in 4 weeks, which isn't much longer than if you get an urgent referral! His consultant did say that he could contact him between appointments if he had concerns, so I have suggested that DH phones consultants secretary tomorrow and ask her to pass a message on, which he has said he will do.

I feel at my wits end with this. I know my DH is scared, but he is not the type to make a fuss and I don't want him to get passed by.

I really miss my old life, where things were so simple and we didn't have this anxiety all the time.

OP posts:
SelenaValentina · 29/05/2017 10:05

Welcome, I am afraid, to our world. the 'I'm not OK' and other threads help you become a member of the club we none of us wished to join.

Would (possibly) be so much easier if it was ourselves going through this?

Look after yourself well.

HeirOfNothingInParticular · 29/05/2017 10:24

Thank you SelenaValentina. I was browsing through I'm Not Ok this morning, and can see that there a lot of people much worse off than us.

That's exactly what I think, I could cope better if it was me... My poor DH was really affected by the chemo and it affected him mentally as well as physically, he said that he felt that he had been catapulted into old age. Luckily he recovered from that, but now we're back playing the waiting game.

You take care too.

OP posts:
Chasingsquirrels · 29/05/2017 10:28

Sorry to read this Heir.
All I can say is get on the phone on Tuesday and try and sort an earlier appointment.

Willowkins · 29/05/2017 12:34

Just wanted to add my handhold as well.
I am afraid that you have to make a fuss be persistent if you want things to be done sooner. I find the following works for me (when I have the energy to follow it through)

  1. decide beforehand what you want to happen
  2. frame questions that make your desired outcome the only rational answer
  3. don't believe everything they tell you
  4. escalate - PALS at the hospital is a good one
    Oh and please feel free to join I'm not OK if you would find it helpful.
HeirOfNothingInParticular · 29/05/2017 18:11

Thanks you Chasingquirrels and Willowkins, you are very kind. DH is going to phone the consultants secretary tomorrow. The fact that he is doing this is ringing big loud bells in my head, because he never pushes. Hopefully she will pass on his message and we can go from there.

I don't mean to be flippant, but the thread 'I'm Not Ok', sort of makes me smile as it takes me back to when my DD was a teenager and was a big fan of My Chemical Romance, and this was one of their big hits. I listened to it many times and I think of those years of teenage angst fondly. My Chemical Romance also used the initials MCR, which you will probably also know is short for Manchester. We live in Manchester city centre and it has been a dreadful week. On one hand I keep thinking that we are very lucky, but on the other all this awfulness just compounds everything. I feel very low at the moment.

OP posts:
Willowkins · 29/05/2017 21:57

Hope it goes okay tomorrow Heir

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