Hey Busby,

Im sorry to hear about your husbands diagnosis. The turn around and how fast things can happen is absolutely awful! Cancer is such an unforgiving disease. 
I can relate to what your saying about grieving for someone who is still here. I too am having a really hard time coping with the news of a terminal diagnosis of a loved one. I have spoken to numerous people on this board who have been lovely and really understanding. I also found speaking to Macmillan has really helped me. You can be feeling grief before a passing, it's all part of the process. It's so hard and I really send you and your husband love. Know that what your feeling is normal and you are not alone x

Good morning both 

365 days ago we were told by husband 58yrs old would have 3 to 6 months without treatment,  but he was able to have a chemo / immunotherapy combination to control it. We were told this morning that the cancer has now grown so he will start chemo again and a targeted pill instead of immunotherapy 

The first 3 months were a whirlwind. Wills updated, power of attorney completed,  bank accounts all made joint, house money explained, you name it we organised it. 

The treatment went well until today. But I have been grieving since last February and now I feel odd as when the inevitable happens will I all be grieved out? Will I seem cold and hard ?  My dad died of alzheimers in 2014 and I don't think I've cried once.  We lost dad before he died, but will I feel the same when Pete goes?

It is So hard. I don't deal with stress at all well now. I broke down on a friends driveway over new kitchen worktops of all things!!

I don't think there is a correct way to feel, butmof you want a private rant feel free to message me, although there is no one on the forum that would blame or judge you.

Keep strong

Snoopy,

Im sorry to hear about your husbands diagnosis. The fact he is still here and fighting a year on is incredible. I can't imagine what a tough year it's been for you both. 
I can completely understand and relate to what your saying about grieving, I myself have had those same thoughts, but then other days I find myself completely flooded by emotion and feel like the process is starting all over again. 
Greif comes in all sorts of shapes and forms, and there's no right or wrong way to express that greif. After speaking to Macmillan I have realised it's possible to grieve over a loved one who is still here with us, especially after a terminal diagnosis. 
Take each day as it comes, and I hope you get many more days with your husband. Take care x

Hi I'm so sorry about your husband but I know exactly how you feel ,I feel I have lost my husband for the 2 years he has had bowel cancer ,I get angry and then I feel guilty then tearful it's like a merry go round that doesn't stop ,and because he has cancer and obviously it's not his fault it's hard to tell people how I feel without seeming a total *** ,it's horrible cancer is so cruel 

Hi I'm sorry about your husband dignoses. It is really difficult my emotions are up and down which doesn't help as I have bipolar. I'm trying my very best to cope he's the most important person in my life. I have never been interested in my own social life it's always just been me and Ian. He's my best friend and my rock. Now the tables have turned. It's my turn to stand up and look after him. It is hard but I have to do it don't get me wrong I woudnt want anyone else to look after him. It's been so quick how our lives have changed. I hate this evil disease x

Hi, I'm so sorry you feel like this, and I definitely do relate to how you're feeling. My husband has had cancer for 4 years and I've always seemed to cope up until 4 months ago when he relapsed. 

The grief I felt was horrific, and yes even though he was still here. I was looking at the Marie Curie website and it mentioned "anticipatory grief" which is what I believe I felt. It's a real feeling. And it's horrible. 

I actually emailed the Samaritans one night and it helped immensely. Because I too was feeling so lonely with it and I couldn't cope with those feelings of loneliness and grief. 

You are not alone.

Hi I'm so sorry about your husband dignoses. Thank you for your reply it's comforting to know I'm not alone and my feelings of advanced grieving is normal.I have been so ashamed to tell anyone how I am feeling. My feelings and emotions are all over the place. I feel different emotions from day to day sometimes hour to hour, which is very hard to cope with mentally as I suffer from bipolar and anxiety disorder.Thankyou again for your reply take care x

Hi Busby

It's very difficult and Covid has made things even harder, I had a CT Scan on New Years Eve, for my Hiatus hernia, got called back to the hospital within the hour, to be told I had a block colon, which was lif threatening. When I asked what was causing it they said "your Cancer", "what Cancer" was my reply. My wife obviously was unable to be with me at hospital and had to wait 8 days before I got home. To say it was a shock for both of us is an under statement. Then because of covid she cannot attend any of my consultation's, which is hard for her and me. My post operation Scan was clear I started a three cyle chemotherapy progarm on Monday, day one intravenous and 14 days of tablets, per cycle.

My wife has gone through all the same emmotions as you, as the patient, I feel it's worse for my wife, although my prospects are good there's no guarantee's and if my outcome is bad, that's where it end's for me but not for my wife. She will have to go on, both our son's are grown and have their own homes. So it could be just her and the dog, this worries me more than anything, she has been very strong for me and we have good friends and family but due to Covid we cannot see them. So Allison is really on her own, we have discussed it all and she is going to call the Macmillan Nurses.

I wish you and your husband all the best, do not feel bad about your feelings, you are doing well and speaking about them is a good thing. Take care

Hi Mark I'm Marie thankyou so much for your reply. It's really nice to hear things from the other side as in the patient.  Your situation sounds very much like my husband's and I. Covid as had a massive impact on everything. My husband was in hospital for 6 days the beginning of Jan this year. He had been having stomach problems for over a year the doctors just put it down to IBS or a food allergy. It wasn't untill an ulcer burst in he's stomach which was horrific. We asked what caused it and very much like yourself they said your cancer caused the ulcer like it was nothing. Cancer was never mentioned at all. I had to ask more questions because nobody was telling us anything. I coudnt see him in hospital. It was hearbreaking.  Any way after asking more questions they told us it was advanced inoperable gastric cancer. Our world just stopped. My husband has just turned 60 our kids are grown up and settled so this year was going to be a new chapter just for us two to enjoy things we coudnt while kids were younger. It feels like all of our plans for future are fading away. I feel like I'm having a nightmare and I will wake up any second and it will be gone. It's so hard for Ian he has always worked hard he had been everyone's rock now he is very frustrated that he can't do the things he enjoys. He feels guilty that I have to do everything it's hard but I woudnt have it any other way. I just wish I could even take half he's pain. He worries about me like you do about your wife. I don't even want to think about if he's not with me that's not the plan. It's always been me and him we did everything together. He will be starting he's chemotherapy next Thursday which I'm very anxious and nervous about . But in an other way both of us want to get it started it's been a month since he's radiotherapy I feel like it may be growing I know it's not but that's how I feel sometimes. I'm so sorry for your dignoses if you don't mind me asking how did you cope with the chemotherapy ? I am just trying to prepare to cope with any side effects Ian may have. This seems never ending to make things even worse he got covid while in hospital so he had to cope with that also the loss of blood from the ulcer and the cancer it's self.  He's so so strong it's unbelievable he doesn't deserve this nobody does. Take care Marie 

Hi Marie

We seem to be in a slightly better situation than you but about the same point in life, I was 60 last July. My operation removed just over a third of my colon and the reconnection was to healthy tissue, and my post op scan was clear. However the biopsy showed 29 lymph nodes, only 28 were clear, so almost perfect but that one is the reason for the Chemo as than have to assume it could have spread to other lymph nodes, in other parts of the body but not showing up yet.

So as I said it was only on Monday 8th March that I started my first cycle of Chemo, each cycle is 21 days for me. Day one is in hospital as it's administered into my veins. It sarts with Steriods and anti sickness that takes 30mins, then the Oxaliplatin-Caecitabine (CAPOX) which takes 2 hours, they then use a flushing solotion, which is another 15mins. this is to push the capox further into your vein and clean the canular, so when it's removed there's no chance of it having any of the toxic chemo on it. 

When the Capox goes in my hand started tingling with what I would describe as pins & needles, this slowly moved up my arm and into my bicept. They wrap your arm in an eltric blanket as the Capox seems to make you suseptable to the cold and that can make the tingling more painful. I was told to wrap up to go home and have a scarf over my mouth to keep the cold out of my throat.

That evening I had then to start the tablets, which continue morning and evening for fourteen more days. They are Capecitabine tablets, I also have anti sickness tablets, which I started the first night and continue morning and evening for three more days. Also have Steroid tablets to be taken on days 3 to 5. 

They have also given me extra anti sickness tablets and diarrhea tablets, just in case.

So basically a cycle is Day 1-15 Chemo, the seven days off.

On the Friday of week three, I have to go back to have my bloods checked, to see if I can start the next cycle on the following Monday.

Unfortunately for my when the did my bloods my DPD is low, which is supposedly hereditry, it means that have had to reduce the chemo dosage as my blood may not breakdown the chemicals as well as it should, hopefully it will and they can increase it, or they may add more cycles.

As for side effect's so far for me my appetite has been normal and I have nornal bowl movements and have not felt sick at all. The tingling has now subsided but flares up with the cold, I picked up ceral bowl and spoon yesterday morning, Day 2, and because they were cold, it was a little painful, so have to be careful, gloves and making sure things are warm. They told me not to go into the fridge and not to drink anything much below room tempature. If the throat does start becoming tight or soar, a warm drink is the answer but I have not as yet had this problem. I will let you know how things are going at the end of week two, maybe as I get more in my system things may change.

I did forget I had real trouble sleeping the first night, only managed about three hours but slept well last night.

Hope this is some help to you and Ian, there are many different types of chemo but your Oncologyst will talk you through what Ian will be getting and what the possible side affects are. That was the only consultaion that Allison was at, as it was a video call. It made her feel much better, as she felt involved and good for me too, as she asked questions and we could go over what we had been told together. When I had the first Post Op consultaion it was hard and scary as it was on my own at the hospital and you are dreading the bad news, even being a positve person. It's a sureal experience which would have been better if Allison could have been with me, instead of being in the carpark waiting and worrying. My head was spinning a little, with all the information and the almost good and potential bad news. It was difficult for me to relay it all correctly, it took sometime to get it all straight.

Anyway I feel like I have begun to ramble a little, stay strong together and be poisitve.

All the best to you and Ian, I will update you end of next week.

regards

Mark