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

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

Hi Mark hope you and Allison are ok well as ok as you can be. I want to say thankyou so much for your informative reply.It was really helpful for us. It's all new this for us their hasn't been cancer in both sides of the family's. We don't know what to expect. It sounds like you have been through the mill. I admire your strength I hope things work out good for you and Allison. I will keep in touch you both take care and once again a big thankyou Marie and Ian 

Hi Mark hope you and Allison are ok well as ok as you can be. I want to say thankyou so much for your informative reply.It was really helpful for us. It's all new this for us their hasn't been cancer in both sides of the family's. We don't know what to expect. It sounds like you have been through the mill. I admire your strength I hope things work out good for you and Allison. I will keep in touch you both take care and once again a big thankyou Marie and Ian 

Hi Marie

well it's day 5 of my 2nd cycle, the first cycle went well the first night was the only one I had trouble getting to sleep. The Pins & Needles pains remained my only real side affect, I did drop a few pounds in weight but used Complan as an additionl, to boost my food intake as my appetite was not affected and continued to eat well but my body was obviousley burning extra calories.

I had to wear cotton and wool gloves in the house and avoid touching cold things, warming up cutlery, was strange but essential. I did also start feeling a little tired towards the end of the second week but only reall the last few days of the drugs, once I came off I picked back up.

The 2nd cycle has been slightly tougher but really just a step up in levels, I suppose there must be some residual chemo in me. So day one was more painful with the drugs going in and the problems with the cold heightened but still manageable. Again had problems sleeping the first night but after that, still have a good appetite and no sickness but the cold thing meant using hot water bottles and blankets will sitting down.

So I feel I'm quite fortunate to be getting minimal side affects but not sure if it's good thing as maybe the Chemo is not working, however I'm staying positive.

I got an update on my Blood DPD, evidently 25% of people have it and it actually is not a bad thing it means I can have a reduced dosage as the drugs dissapate slower in me and therefore still do there job.

I also got my 2nd Covid vaccination on 16th March, which made my feel a littel better. 

I hope Ian's Chemo is going well, not too many side affects and that he is coping, also I hope you are managing.

all the best 

Mark & Allison

Hi Mark and Katherine  

Hope you both ok well as well as can be under the circumstances. 

It sounds like you have coped quite good with the chemo.

It's been really tough on Ian so he has has first 4 hour drip Friday last week he seemed ok on the Saturday tired but understandable. But by the Sunday he was ill felt sick he had a gagging feeling had hiccups bad also diorea. Just basically uncomfortable. I phoned the cancer nurse on the Monday she got intouch with the ongulist he recommended Ian had a ct scan asap he said it is very very unlikely but he wanted to check it hasn't spread to hes head.Getting told this was really worrying Ian was fine about it he knew their was nothing wrong with he's head. Also the ongulist told him to stop the chemo tablets. He went for ct scan still waiting on results but the cancer nurse said that the radiologist would have picked up anything serious straight away. It's taking so long for results because of Easter holidays.

So we are abit up in the air at the moment.We don't know when he will have to go back on tablets.

He's next cycle is booked for 23rd  April.

I feel abit anxious I feel like the tablets may have been working but now he's stopped taking them what's going on with he's stomach.

I suggested that Ian should have full ct scan to see what's going on hopefully that will be next week.

He's ongulist will be phoning him on the 7th so will have to see what he says.

I really thought by now the side effects may have subsidised and he would have built he's strength up for next cycle. 

He has lost a lot of weight he is eating but he can't eat regular amounts as he feels full straight away.

Ian didn't have the sensitivity to cold. Mostly the nausea for him.And that gagging I mentioned.

It was the gagging thing why the ongulist wanted a ct scan because it was a unusual side effect.

So basically it's a waiting game see what the next move is.

We did manage a walk along the pier at the beach which was nice the other day by the time we got back he was worn out but he enjoyed it.

I'm trying to look after myself but I feel guilty having me time I'm always on red alert in case Ian needs me.

I must admit I do feel very lonely at the moment.But will just have to get on with it.

I want to thankyou for taking the time to send me a message 

Hope you can keep intouch thankyou to you both take care Marie 

I'm so sorry I said Katherine instead of Allison so sorry 

Hi Marie

Sorry to here about Ian, I'm sure it's going to be ok they will look after him, it's good they got the CT scan quickly and the Nurse is right, it was the radiologist who immediadtely got me called to surgery after doing my scan that day, never weighted for full results, because of what he could see.

Stay strong and follow the Dr's advice.

all the best

Mark & Allison

Morning all

I can relate to so much of your conversations . My husband of 35 years tomorrow was diagnosed with pancreatic cancer aged 62 by ct scan on 1st Dec. Chemo was delayed as biopsies could not give a definite diagnosis but eventually adenocarcenoma cells were found when the biopsies were reviewed by another hospital. Until recently its been me and him due to covid he's not had an easy ride and second chemo delayed with nausea sickness diarrhoea and then infection which Ihad to ring for ambulance in middle of the night. He is now in the palliative care ward of our local hospital after being told his kidney function has been affected by either the infection  or  chemo or i think the gentamicin possibly and they were unable to find source of infection and he may have weeks if not days left. My grown up children are now supporting me My daughter lives abroad so has one day left of travel isolation  before she can see her dad. Visiting is limited due to covid but better than no visiting as was a little while ago. I too feel I am grieving for him while he's still with us anything starts the tears. I just wish I could turn the clock back. Thank you for reading my post it does help  Think the worst but always hope for the best.

Hi Mark

Hope you feeling ok 

Ian's ct head scan was clear thank God.

We spoke to he's ongulist yesterday he said he was happy for Ian to go ahead with next cycle if he was.

Ongulist wants to administer abit less chemo than before. He also wants to change he's antisickness meds.

So we hoping he may cope abit better than first cycle.

Ian just wants to get on with it now. I'm so proud of he's strength it's just typical of he's character he won't let anything beat him.

He's weight has stayed the same which is good. He has been trying eat little and often.

He seems to be sleeping ok.

So we ready for next cycle tomorrow.

How have things been for yourself ? 

Hi Marie

Im so pleased to here your news and hope this new cycle goes well for Ian. Not much to moan about, it has been harder than the first cycle but Im ok and looking forward to Tuesday, as I get a week without drugs.

Thanks for the update and we will be thinking of you both.

All the best

Mark & Allison

Hi Mark 

              Thankyou for your reply. Hope you feeling abit better.

Ian had he's first chemo on Friday long day for him 8 hours. He was ok when he got home apart from been very tired.

He has been ok no nausea hiccups abit but mostly it's the shaking this time. He has still got an appiete which is good. So we keeping our fingers crossed that he doesn't have bad side effects like last time as he's chemo drugs have been reduced.

He's weight is staying the same which is good.When he first got diagnosed he was 10 kgs lighter.

I hope you enjoy your free week from Tuesday. You both take care and thank You again for staying in touch  

Marie and Ian 

Hi Marie

I hope Ian's doing ok and the chemo is not causing him any undue problems.

So I got a good news, they told me that everying was going really well, so they were going to increase my meds by 20%. Somthing they said they probably wouldn't do, then told me, I was having 4 cycles over 3 month's and so I had been mistaken it was 3 cycles. That was ok, I looked at my letter and it does say 3 months, as you know so much information, you can get confused. The down side is it means, it will be end of June not mid May before I can see my mother. 

Then on Tuesday morning I heard my mum was in hospital, having had a heart attack, followed by a call a couple of hours later from the hospital, telling me my bloods weren't upto chemo, so not to attend Wednesday and I have to wait a week. So feeling a little delated but have to stay positive as they are the experts and will get my treatment right but another week before I can get out.

Anyway hopefully Ian has been ok on this cycle, which should be ending shortly and he has a good week off before the next.

all the best

Mark & Allison

Hi

Hope things are improving for you both and having had you daughter visit, will have helped.

Stay positve, all the best

Mark