Hello!

Hi

I am new here! Hoping to come on and look for some support. I usually post on the Bowel Cancer Forum as this is the type of cancer my husband has at present but looking round the site and I see other groups I can possibly relate to. He is in recovery at the moment from developing Sepsis at the beginning of the year. It has really knocked him for six and these days he just seems to spend most of his days in bed, This time last year we were getting our lives back on track after my husband going into hospital last January (2022) to have his tumour removed. The operation went very well and the surgeon said they got all the cancer and all margins around it were clear too.

At one of his post op appointments I asked about post chemotherapy treatment as a precaution incase stray cells were missed and hadn't been detected as sometimes cells can be missed with being so small and not picked up on scans. I was told this was not necessary and if not necessary, they don't do it. Well 5 months down the line and it was back. I felt very bitter at the fact they told us not additional treatment was needed- even as a precaution and then it returned. It more or less came back where it originated from but this time it was in a position which meant it wasn't operable too near major organs I think they said. My husband began another course of chemotherapy in August last year and more or less sailed through his first 3 sessions of CAPOX but just after the 4th he became very ill and it had to be stopped and he had a break for a month or so. Then he got re started on 5FU (Irinotecan and Folfox) but unfortunately only completed one session of this because blood tests for his second session showed up dehydration and low kidney function. He was admitted to hospital for this and during that time they discovered that the chemo had actually done damage to his kidneys so once again it had to be stopped.

He came home 2nd week in January this year and round about the middle of January he got up one day and began shivering violently and his blood pressure dropped rapidly. I phoned a cancer nurse and she said she would arrange an ambulance as soon as possible. The paramedics came and I heard one mention sepsis he was given fluids and blue lighted to A & E.  They got him in and he was admitted to resuss because his BP was so low and he was not getting a urine output. He had to have a urinary catheter fitted because of his kidney damage at his last hospital admission. He was then admitted up to the High Dependency Unit because his blood pressure refused to rise. They worked wonders with him in High Dependency and during this time he had to get a nephrostomy procedure done for his kidneys and now has to wear a bag either side of his back to collect urine draining from the kidneys.  He got home again at the beginning of February. Then on the 13th February he got up and began shivering again so remembering from last time I phoned the 111 service and told them what was happening and they arranged an on-call GP to come out and check him over. His BP had been going up and down throughout the day again but had stabalised by the time she got to our house so she sounded him took his BP and said he was fine. Next day a district nurse came in and took bloods from my husband and later that afternoon we got a phone call to say that his tests showed dehydration again and he needed to be admitted to hospital again. This time he went to urology and not High Dependency but on the way down in the ambulance one of the paramedics said his last admission was a `failed discharge` which I assume meant they let him home too soon. 

So now he's home and so far, so good he has not had to go back in again (touch wood). The sepsis however, I feel has affected him terribly. We have had information through from the Sepsis UK website and have spoken to a specialist nurse from there on the phone. There are so many after effects of this illness and some listed in their information pack I found myself nodding in agreement at some of the post symptoms. My husband's mobility has been affected and we have physiotherapist coming to work with him on that. It has also affected his sleep patterns and at present he is turning night into day and day into night. He wakens in the night a lot and as a result he doesn't get out of bed until about mid-day which was never him. This is all he seems to want to do at present and I just do not see my husband anymore. I just see an old man who wants to lie in bed day after day. His cancer has been classed now as `metastatic` at one of his oncology appointments he was told it had spread to his pelvis and lung but they didn't seem too concerned about the lung it is more in his peritoneum where is sits just now. He will not speak to anyone to get help or counselling and if I say to him about phoning someone, he forbids me not to as he automatically thinks this will mean he needs to go back into hospital and he is very against that.

He is trying to get his mobility back on his own we live in a main door flat with a flight of stairs leading up to it. He has been getting up and down those on his own as well as working with the physios. Sepsis it seems is something that needs to run its course and there is no quick fix for it and people who get it can recover in different ways some quicker than others. According to their website and information it can take a person weeks, months or years even to get over it. This coupled with his bowel cancer is just making him really depressed and I feel he's given up and just thinking well I'm eventually going to die so what's the point. I get angry and frustrated with him because I feel there are things he could be doing to help himself but just won't he says he can't but I just keep wondering if he can and just won't. Everyday just now is the same and the days just keep morphing into one another and the weeks rolling by and I just feel stuck. I have an adviser from MacMillan here who phones me regular and checks in to make sure I'm ok. I have also had counselling from other sources as a few months my mental health was really bad. I just don't see a way ahead at the minute and just keep hoping and praying for better and brighter days. I just need to know that I'm not being selfish for being this way because I feel very guilty for being so. Thanks for reading.

Vicky