Hi Everyone!
I have been directed to this group by one of your moderators I think it was. I have been reading a lot of your posts here and it kind of puts what I am going through into perspective and I feel so guilty now coming on here for advice. Some of you are really going through hell caring for your loved ones with cancer and I find myself quite lucky compared to you all I am in absolute awe in what you are going through. Anyway, my story is, that my husband Jay is going through chemotherapy cycles for his bowel cancer which only returned in May this year after having the operation to remove it all back in January of this year. They were determined at the time that they got it all and granted his surgeon was quite upset when she had to tell him it was back he got a follow up appointment with her in May and she did blood tests and we got a letter to say his CEA markers had risen and they sent him for a CT scan which unfortunately confirmed it had come back more or less in the same place and surgery is not an option this time so chemotherapy it is. He was doing so well with his recovery after his operation but now it seems he's given up slightly. At the beginning he was going out for short walks to improve his mobility but now he won't even go out unless it means going somewhere in the car. He won't even take our dog out for his walk, and we used to take that in turns now its all down to me to do it. He wasn't even coming into the supermarket with me for a while for me to do the weekly big shop but he's getting better with that and actually comes in now. All this is in comparison to three years ago just after he retired. Just before he retired in 2019, he attempted suicide and went and got help through the GP and counselling. It was found out then he also has Type 2 Diabetes. So that was ok, we could work on that which we did and started going to the gym about 3 times a week and playing badminton plus adopting a healthy eating regime. Then of course Covid happened and everything and everywhere shut down. We managed to keep up the exercises at home for a while but that all fell by the wayside slightly. Then at the end of 2020 the bowel cancer symptoms began to surface but at that time we didn't know it was bowel cancer. Jay began going to the toilet more often than normal and eventually got an appointment for a colonoscopy in May 2021 (we were still in the grip of Covid then). This is when they found `abnormalities` but at the time still couldn't say it was cancer. Further MRI and CT scans were done and in July 2021 he got his official diagnosis that it was bowel cancer and the tumour had been lying dormant for about 3 or 4 years without showing symptoms but hadn't gone anywhere and wasn't likely to go anywhere. This resulted in him having a bowel resection operation and now has a permanent stoma. Then the operation for the tumour happened in January this year and now we are where we are now. He now has to go through chemotherapy cycles which includes going for day clinic treatment of Oxaliplatin infusion once and then on 10 Capecitabine tablets (5 and 5 twice daily) at home for 14 days then a `rest week` where he takes nothing but then again, he still needs to take his diabetes medication. It's just suddenly having to take all these tablets I think that is getting to him. He is mobile around the house he will cook meals (says my cooking leaves a lot to be desired
) but simple things, like getting up to make a cup of tea he won't even do that. It takes him some time though to actually get up and move himself to get ready to go somewhere and he will jump down my throat for the slightest little thing now and I constantly feel I am walking on eggshells round him. And then other times he will tell me he doesn't know what he would do without me and how he would cope if I wasn't here. Even if he needs to speak to someone in authority on the phone, he will put them on to me telling then that `I am the brains of the operation. ` and I even have to give him his tablets every day because he says `I know what tablets he has to take`. He has told me that mentally he feels this cancer is `all consuming` for him and it's all that he can think about just now and I do `get that`- who wouldn't feel like that fighting something like cancer. I just worry that he is not doing enough to try to help himself and I worry that the more he draws into himself the worse he will get and so slow down his recovery. He has a scan coming up in the next few weeks and this is scary for us both because it was a CT that confirmed the cancer had come back and this is usually where they find other things that you didn't think were there. All his recent blood tests have come back recently as normal. He goes to the GP practice nurse and gets bloods taken during his cycles and these have shown that his liver and kidney functions are good too. I just feel useless as a carer, and then feel really bad at times for feeling resentful towards him sometimes. I also have an older sister who I care for she lives in sheltered accommodation not far from where we live. She has mild learning difficulties as well as epilepsy. She is independent to an extent and can-do things for herself get out and about etc but with things in authority she needs my help as well as helping with her shopping etc. Where she is there is a live in warden, but she is only allowed to do so much for the residents. I also have health issues of my own the illness my sister has is the same as I have as it's genetic our mum had it and my sister lost her identical twin sister through having a brain tumour. The condition is called Tuberous Sclerosis and unfortunately its incurable at present and is lifelong. I'm not writing this as a `poor me` story but would just like some advice on how I can get round this or handle it better. Thanks. Take Care.
Vicky xx
HI Vicky
oh I just want to start by giving you a huge hug. You're a strong girl to be coping so well with so much going on. You're coping so much better than you give yourself credit for. (You'll just need to trust me on that)
I can relate to a lot of what you say regarding your husband's mood/behaviour. My husband was diagnosed with a stage 4 brain tumour in Sept 2020. He was 50 at the time and had a senior management job in IT. He's a control freak by nature. He's also a fitness freak and a marathon runner. His diagnosis, coupled with a seizure two days before his surgery, changed our world forever. Like you experienced, this all started at the height of covid, and I feel that has contributed to the overall picture.
Now two years down the line, all he is interested in is his running. I accept its little short of a miracle that he can still run marathons but thank the lord for miracles as it is giving him a sense of purpose, something to focus on. He's obsessed with his times and distances, and it feel sometimes like he's swapped "work" for focussing on the reports from his fitness app.
Coping with his moods can be a challenge and I find myself telling myself that "he's broken" - it's not really him saying these things. Maybe I am kidding myself on a bit there. His tumour has impacted him more mentally than physically so he's now a bit like someone with dementia. I have to give him his pills (and make sure he takes then ever since he confessed to binning his steroids because he didn't like them..Men!)
He spends a lot of time on his own but that's his choice. I try to be led by what he needs or wants and when he verbally lashes out, try to ignore the cutting remarks.
He never would go shopping etc with me so I have long since given up asking him to come out with me.
Have you spoken to your GP about how much weight is resting on your shoulders just now? That might be a good starting point. This group is a really safe and supportive space. I've drawn a lot of comfort from it over the months/years. There's always someone around to listen who gets it. You're not alone.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
It's all too easy to let little things be the straw that breaks us or makes us snap. It was my son who first said to me a few months back "Will it matter in 5 years?" as I was stressing over some wee trivial thing. It brought me up short. He was right. So sometimes when we are feeling frazzled that's a good question to ask yourself. If the answer is "no" then let it go... that takes practice.
I hope this waffle has helped a little
sending you lots of positive energy, love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
