Bowel cancer CARERS, FAMILY & FRIENDS chat

Tony had chemotherapy and radiotherapy in the beginning before his op January 23 he then had his op April 23 it was a long road to recovery, he end up with cellulitis and the sepsis, finically by the October he was finally getting better he had the all clear and they said he didn’t need preventative chemo , hindsight may be they should have because by the scan April 24 they found a tumour in his peritoneal, which is inoperable and stage 4 . 
he had a picc line fitted by the beginning on may so nearly a year ago and been on chemotherapy since .

we live in the south east and the hospice do have a carers coffee morning it’s about 35 minutes drive away but I haven’t been not saying I won’t but not sure if I am ready yet  .

started talking to you on here now that’s a start for me but like I say been following your story’s so almost feel like I know you all . X

Angie there is probably support near us but les would not mind me going but I see a counsellor when I need the extra help. Les mum died in October 22 and he then decided to retire early but having problems going to the loo. His poop test came back negative and mine positive. He eventually went and seen doctor who sent him for colonoscopy where they discovered the tumor and some on his liver. Started chemo February 23. Had ablation on his liver last April 23 and six weeks later 15 inches of bowel taken away. When up to it started chemo again but got sepsis just before Christmas 24. Was in hospital on a drip for a week and recovered. Been on this chemo for 6 months but not working as it has spread again to his adrenal gland so we found out a couple of weeks ago. Starts this new type of chemo on 6 May which we were told is not very nice. Dreading this again. The rollercoaster never stops. I have with being so stressed not looked after myself and ended up having an infected tooth out which split when trying to take it out. I now have an infected socket and on antibiotics. I thought I had a good friend here but it turns out not. I asked her to come to Newcastle when he had his liver op bearing in mind she had no dependents and over the years done a lot for her and she said NO. Asked daughter in Australia and she managed to get here about 8 hours before the op. My other great friend in Australia came over while he had his bowel op and stayed about 4 months. Well that is my story which you will have read on here and the rollercoaster we are all on and have been on. Are you stressed and anxious with it all. If I don’t get back to you straight away don’t worry I will or the others will. We all have our own stories and worries etc but this was the best thing I did knowing how the carers feel. We did not always talk about it but sometimes we had a laugh to ease the pain. Love and strength Maggie xxxx

Morning Angie8

You are a similar journey to ourselves we had surgery due to a blocked bowel tumour had spread to lymph nodes 8 had 1 preventive chemo attacked his aorta so had to stop the Cancer returned in his small bowel another operation it was blocked by a tumour different Chemo 4 sessions but his markers were going up pet scan showed peritoneal and lungs and more lymph nodes back also in small and large bowel wished we could have tolerated chemo at begining maybe we wouldn't be here. We are under hospice care who are amazing come to see us arrange pain relief and spa treatment and counselling for me. I don't go to coffee morning don't want to face other but happy on phone counselling. I am glad he is tolerating that is a good sign could go on for years take every moment you can enjoy each day even now just waking up and seeing him I am so grateful we can't go anywhere but I am not bothered now it did take me a while to accept no holidays visit to our sons his wish is to see the sea one last time but at moment pain level about 5 even on long and short tech will wait for a 0 day as it's a hour away. sending hugs x

Hi jkee we do try and appreciate every day we are very lucky bill has been able to tolerate the chemotherapy, it is getting a little bit more difficult as each round goes by but lucky for us he has tolerated it and it is what’s kept it at bay which is why they won’t let him have any more than 2/3 weeks of .

i knew we had all started on this road around the same time well I should say roller coaster ( and I have never liked them lol )

it’s a shame you can’t get Simon to the seaside to see the sea it’s very therapeutic we love it , again we are very lucky we live by the sea it’s literally only 5 mins drive from our house and bill likes to go see it every day .

i am glad I have shared by story now and appreciate yours and maggies support and also hearing how Helen and Vicky have got on after going through this journey x

The worst I think is fear of watching them in pain and suffering x

It’s such a shame Maggie that your friend hasn’t supported you think it probably is a time we find out who our true friends are .

i am sorry to hear your health is suffering you must take care of yourself so that you can take care of les .xx

Hi angie. Yes it is a rollercoaster and I am so pleased you can share your story. We do find out who our friends are. She has lived with us in the past and we have been there for her at all times. She even has everything delivered to our house including her meds so she could keep the same doctor and still does. Two parcels came yesterday and a letter so I text her and nothing just to tell me that the parcels would arrive between 12 and 1. Les said he would take them to her house and I said definitely not. I do feel very disappointed as I could do with a little support.  Still feel yuk but if no better back to The dentist tomorrow and hopefully The infection has not gone into the bone as I need to be well before next week. Les tolerated his chemo and then after the ops the next lot of different chemo. Not sure about this different chemo. He is a trooper like Simon. I feel ashamed not being able to cope with his diagnosis and now this blinking infection.  Oh well just feeling sorry for myself.  I have not even cried yet and I know that would make me feel better but if I do I won’t stop. I am not very good with words as you can tell but thinking of you and everyone else xxxx

Morning all, feeling sad as it’s two years today since I lost Kevin. Seems like forever and never gets easier just different.Granddaughters taking me out this morning and going for a meal later with family. Back from Switzerland after sprinkling Paul’s ashes on Glacier 3000. What a rubbish week - life just isn’t fair. Sorry for being so gloomy as I know you are all struggling 

Helen x

Helen you can be as gloomy as you like as you know. We are here for the good and bad. Gosh 2 years that has gone so quick. Have a drink on Kevin and I am sure he would not want you to be too sad. You have honestly gone so much in less than 2 years and you have coped but not sure how. Your family will be by your side all the  way. Thinking of you and sending you a hug xx Maggie 

Helen 2 years gosh seems like yesterday we were chatting with you when Kevin was at home how do you put one foot in front of other how do you even face the day? You thank goodness has a amazing family that I guess is holding you up my anticipated grief is consuming bless you Helen my heart breaks for you xx

O that’s really horrible for you with your friend it must make you very angry .

definitely go back to the dentist toothache is awful at the best of times .

thinking of you x