Hi Billy

I  so sorry I didn’t get back to you. Right the fishing trip went well. He drove there fished for five hours and drove an hour and a quarter back. He caught 2 very nice rainbow trout and was over the moon. I caught nothing but flippin heatstroke! I was so ill. Too many layers for such a hot day

Billy I’m ever so sorry to hear about your bloods I do hope that they can help you. Yes the systems a bit up the shoot. He was supposed to have received a blood form through the post he was assured it would arrive. Nope not a sign. So he’s going to the oncology unit to get them done there. He’s also waiting for them to contact him about his chemo. It’s running quite low. I’ll gwt him to phone tomorrow 

So, last week he went fishing with two of his brothers to a local pool. He drove himself, his brothers followed. The pegs are all socially distanced but more than the official requirement. He fished a whole day, came back early evening after a great day of catching lots of carp up to about 14lb in weight. He said he did get tired so he rested in his chair and resumed his fishing. 

Hes gone again today with them, he’s driven himself. He’s plenty of drinks and snacks/sandwiches. I’m just over the moon he’s made the decision to do normal stuff like that

We have a caravan in Wales we can’t use for a while but that’s where he usually fishes for brown trout and sea trout in the local rivers

Billy good luck and stay in touch. I hope your wife’s doing ok as well

Kuiper x

Hi, 

I have just come across you posts. Please don't take offence but I am so glad to see I am not the only one going through this with my husband. He has prostate cancer.

My husband had his last session (for now) of chemo 50 days ago. He was so ill after. The first 48 hours he felt completely washed out and nauseous. He went to bed which I understood. But he then did something that really scared me.

He stayed in bed for 10 long days refusing to eat or drink anything because his stomach hurt. I tried to explain that his stomach hurt because it's empty. He just got nasty with me. Now my husband (married 27 years) has always been a happy, friendly man with a heart of gold. But during this time he turned into a really nasty, mean, snappy, hangry, grouchy ogre. I could only do 2 things wrong everything I said and everything I did.

it finally took my brother (a scientist- chemistry and biology)to explain that what my husband was doing was slowly kill himself and did he really want to die. I quote: "get up have a small bowl of porridge to stimulate the stomachs appetite". I really must tell you a bit about my brother a bit later he is such an inspiration.
my husband did as instructed just to shut my brother up. But it worked. My husband started eating and drinking, albeit baby sized portions. He has now progressed to child size portions.

He still gets 'ogre' days. He's still not very steady on his feet. But he is having more good days than bad. He admitted a couple of days ago that he didn't realise what he was doing to himself when he stayed in bed for 10 days and that when my brother made him realise it scared him because he wants to live. My husband still says he wants to live even after being told he was now stage 4 because the cancer has gone into the pelvic bones. He tells me that he is going to outlive my brother because he is such an inspiration to live.

About my brother; how's this for determination and inspiration. He was told in September 1999 to sort Christmas out as he would not be here to see. He was diagnosed with non Hodgkin lymphoma (terminal), liver cancer (terminal), cancer in both lungs (terminal) and a cerebral cortex brain tumour (terminal). The oncologist told him they could do no more for him. My brothers answer was (and I quote) "I will die when I am ready not when you tell me". My brother is still going today. He also has scoliosis and congenital disc degeneration and was diagnosed with terminal leukaemia 18 months ago. He still won't give in. He is far too cantankerous, pig-headed, stubborn and arrogant to allow the doctors to be right.

There have been and still are so many days that I take myself outside or the bedroom and cry my heart out especially when my husband takes his pain out on me. When I have to lift him out of bed because it's a bad day, he wants to get up but does not have the strength or stamina to do so. It's not easy lifting a 6ft big man out of bed when your only 5ft, 8stone with severe arthritis in every single joint. But I love him (he's my heart and soul) and I will do anything for him so keep going because he is still fighting.

Sorry to waffle on so but it's nice being able to talk with people who understand.

 I am so happy that your holidays and trips were so enjoyable Kuiper.

 I hope that all goes well for you Billy.

Blessed Be

FireWitch xx

Hi I've not been about much. In January I made a wish, after he was diagnosed, that he would be with me for my 60th birthday. That's all I wanted. My wish has been granted

He recently had a CT scan with contrast (dye). He got the results over the phone with his consultant. His cancer is "slightly worse" his exact words. His bloods are ok. 
 

I can't sleep tonight. It's now gone 4am. I'm sitting near his bed on the sofa.I know I have to go to bed soon and try. I feel sick and upset. I'm trying to look after myself but all I care about is him. 
 

He's on one Lenvatinib chemo tablet at night. He used to be n three but they didn't suit him at that dose. It's palliative anyway. 
 

Billy I'm sorry to my heart about your results. You have your hands full with what's going on in your life but your love for Bren shines through 

I send love to you both Billy xx

[@FireWitch]‍  It is nice to share our experiences. It's helpful because sometimes you realise so many people are in similar situations although different. The amount of advice, support in here is so good. 

My husband gets grumpy too. He's fed up but does say he wants to live so that's something. I hope he can be like your brother. You're right he is an inspiration. Chat soon

 xx

Hi kuiper. 

Sorry your hubby's cancer is "slightly worse" but at least blood is OK.

I know i got a shock other month two years ago my count was 0.03 end of last year 2.2 i thought I've got ages before any different treatment needed then last month 26.5 was a shock hence scans and tests then probably meds change, but I'm still feeling fine and keeping positive.

You kneed to look after yourself better and think more positive nomatter what. If hubby feels ok is main thing. Hope to hear from you soon.

Love Billy xxx 

P.s bren is finally coming off some meds and improving slowly., that takes some figuring out actually taking someone off meds to make them better. 

Hi Billy

i hope that you and Bren are ok?

 Hi to anyone else that is reading this I hope you're getting along as best as you can. My thoughts are with you. 
 

My husband had news today that the cancer is in his rib. He's taken it very badly. Every time I've got up to go to bed he's woken up, looked at me and said you ok? So I'm staying downstairs tonight. He needs me. 
 

He managed to drive to Wales last week, with our friends following, up to our caravan. He went fishing and caught sea trout. He was over the moon, so chuffed. 
 

This news today knocked him for six. He didn't expect that. 
 

Prior to this although I was anxious I had started going to bed and sleeping a bit.Tonight there's not a shred of sleep in me. 
 

We found out the day we went away that our fourth great grandchild is due in January. He was over the moon. He told the consultant today that he wants further treatment because he wants to be around when he/she is born 

I just feel so very sad for him and me and all of us involved/affected by this. I try to comfort myself that we've been married for 43yrs and that's more than a lot of couples who are going through or have gone through this cruel disease. 
 

Hi kuiper. 

Sorry your hubby's cancer has gone to ribs. 

Hope oncologist get a move on and sort out more treatment.. 

Bren alot better, i can always tell she's getting bossy again. Can't walk at all but can move about plenty in chair or bed. 

My cancer count has shot up to 65 then oncologist said she's given me wrong meds so waiting for new prescription then taking for three months to see if they work.

Pulled my shoulder yesterday afternoon, it's giving me hell so phone Dr this morning, probably waste of time but we will see. 

You kneed your rest remember no good if you get ill. 

Keep positive and keep safe. 

Love Billy xxx 

Hi Billy 

im so happy to read they're giving you different meds. Great news that Bren is bossing you about. It's nice when someone gets an almost normal day. Please keep me posted how you get on. 
 

He's got a scan with contrast today. This will show the rate of progression of this disease. We are both a bit edgy. He must be going through hell. Don't get results until 3rd September 

Please take care 

love Kuiper

Hi kuiper. 

Hope scan results are OK. 

Sorry if I start rambling. 

District nurse should have been yesterday think brens started with bed sores. Got cream and plasters on just waiting to be sure. 

Can't take new tablets yet, paperwork says they could react with some I'm already on, phoned Dr yesterday still waiting. 

Hope you're keeping well,

Worst thing ever is always waiting isn't it. Please keep positive OK. 

Love Billy xxx 

His scan results are not good. The tumours on his liver have gone from a couple of specks to 2cms. There’s not much they can offer but at his request, increase his chemo to maybe give him more time. The oncologist said he doesn’t hold out much hope and that the next scan will show if there’s any difference. If not then the next conversation is not going to be a be a pleasant  one. He has said that if the chemo knocks him about too much he’s going to reduce it back down to what it is now.  He said he’d rather have a quality of life where he can eat and taste his food. I asked the oncologist about clinical trials. He said there are none due to covid 19. I asked about immunotherapy drugs but the ones suitable for Him are not available on the NHS. The consultant told us it’s £7000 every three weeks. There’s no guarantees and he didn’t recommend it. We came off the phone. I said about remortgaging and I’d have to go back to work and I didn’t mind at all. Anything. He said no. So I’m sorry it’s not better news. He did break his ribs under the caravan when he put the water back on. He wouldn’t let me ask one of the others on the site to do it. If I seem strange it’s because I’m so upset, he’s gone in on himself again and I don’t know what to do. Please stay in touch sending you big virtual hugs xxx quite frankly I’m now frantic trying to find something more