Chemo round 1

I understand how worried you are and the control. My husband went through some chemo earlier this year & had a pretty awful time of it. He was in & out of hospital but when he was out initially he spent a lot of time in bed. We have 2 young children who had after school activities & homework to do. I was working full time & now couldn't rely on him to help with the childrens drop offs/pick ups, help with cooking or cleaning. He was even struggling to read bedtime stories. The way his chemo was administered did change so things did become easier. 

After speaking to people I realised that it is ok not to have the housework done. Making sure the kitchen & bathrooms are clean is the priority as well as the kids being clean & having clean clothes. Is there is dust on the skirting boards or fluff on the carpets it is ok. Things don't have to be perfect and neither do things have to stay the same. It is ok to do things differently during the hard times. 

Unfortunately since finishing chemo (in July) my husband has had an intestinal blockage so has had surgery (in August) and we have now been told (in October) that the chemo probably didn't do any good at slowing the growth of the tumors and that he only probably only has months. His cancer is rare and doesn't show up on any scans, his blood tests are always normal do the oncologist doesn't have much to go on. We have always known his cancer is incurable but I know someone who lived 9yrs with an incurable cancer so we were staying positive.

The Chemo was such a roller coaster then at the end of chemo the oncologist was quite positive so we were able to make plans for the summer holidays however with the blockage we were back to the roller coaster. He then recovered from that but dipped again being in a lot of pain when the Dr gave us the terminal diagnosis which felt like rock bottom but then with the pain management he got energy back & was able to work which helped with his mental health & his mood. The Dr then saw him again & said there were different chemo drugs she would like to try & we all agreed to wait until New Year for this knowing that it was a gamble & he could get worse. Last week he had some really bad days and he felt like it was the beginning of the end but then he picked up again & we went out shopping with the children so they could choose Christmas presents for us. We had a good Christmas Day but he went to bed at 8pm that evening & now hasn't eaten anything since Xmas day and has been either lying in his bed or on the sofa sleeping the majority of the time. 

We are organised people & have lists & spreadsheets for everything. It has taken time but I have started to accept that there are things I can still control and other things that I just have to let go of. All the uncertainty is unsettling. When my husband was unable to help with anything I got into a routine & I managed but then he started to be able to help which was great however at the last minute he would start feeling unwell & wouldn't be able help. This was much harder because I had a list of things that needed to be done & a plan but then the carpet would be swept from under me. (I hope this is making some sort of sense). 

Last week things were hard & after I dropped the kids at school one day (work gave me a week off) I just sat in the car & cried. I cried & cried & shouted, it was good to get all the frustration & anger out. This week even though he is bad again I don't feel the same as last week. Perhaps it is because the kids are off school & I know I need to be there for them, I'm not sure. 

I know I need to sit the kids down (they know about the diagnosis & limited time he has left) and discuss with them what is happening with daddy and what it means but I didn't want to do it too close to Xmas. I know it is going to be hard but also know it'll make things easier for them in the long run if they understand. 

Stay strong but remember to take time for yourself. It is not being selfish it is self preservation. If you don't look after yourself you won't be able to look after your husband. x  

thankyou Edinmum - i relate to all you say and am so sorry of the final diagnosis and telling the kids will be so hard. You must be heartbroken aswell. i feel like i am just going through the motions until i get him home and then i'm terrified of the responsibility of keeping him safe. like you, i'm sure i'll get into a routine, but at the moment i feel like i have brain fog and can't remember anything properly - i guess my mind is protecting me from having a total meltdown. I'm still on hols this week but am going to try and get a couple of work things done today that are urgent for next week to get ahead of the game a bit - at least i can control that bit. I also know i could get signed off sick but that is really not in my nature so will save that until i really need it. 

thinking of you xxx

I hear you with the going through the motions. When he was first diagnosed with incurable cancer for 2 days afterwards I just felt sick & like nothing would ever go back to normal. Then we talked & we were both determined to stay positive. I no longer had the sick feeling in the pit of my stomach but I felt as if I was numb and would never be happy again. 

You should let yourself get upset. I tried to keep things hidden from the kids & my husband, to stay strong for everyone but then I spoke with a psychologist who said that it is ok to let people especially the kids see how you are feeling. I enjoy running and a lot of time when I run it is a chance to clear my mind and not think of anything but on some occasions I have had tears running down my face! 

My husband has been able to care for himself so far. He has been sorting his own medication but last week & this week he has had a few days where he wasn't good. He was getting confused with some of his medication being in different packets & the Dr giving him higher dosage tablets so he had less tablets to take so I have been organising it for him. We are getting a pill box so I can organise it for the whole week & I won't be worrying about him taking extra medication. 

I find that work is a bit of a release. I work in a nursery and as much as 3/4 yr old children are hard work they have so much innocence. All my immediate work colleagues know as well as some others (I work at the kids school so both their teachers know too) so I have a great network of support from them as well as some of the kids friends parents. 

I am with you, I'd rather not get signed off sick until the time comes that I need to be caring for him more or that I don;t want to leave him alone. He is keen to stay at home rather than go into the hospice. I think him being at home will be ok as the hospice is a bit of a drive away from the house. 

Thinking of you too. Stay Strong. x