I thought I would put down some things I have learned from our lives so far post diagnosis. Hopefully someone may be able to see and have an understanding of what may come for them. Living with a cancer patient can be tough.
- The initial diagnosis is scary. Like, sweat forming on your back, take back those words scary. When my wife was initially diagnosed, we were in a small meeting room at the hospital, and there were many more nurses in the room than previously. I quickly learned why. There is so much to take in, and so many negative thoughts and associations with the C word. You will be confused, you wont know what is going on, and to be honest once they have said cancer, you dont listen any more. Not consciously anyway.
- The next few days are a blur. As I said, there are many negative thoughts. I straight away thought it was an immediate death sentence. The information you get given is confusing. We didnt even meet the final consultant until a while after the diagnosis. You have to tell people, and arrange things with work while trying to stay calm. The day after my wifes diagnosis, I was offered a promotion in work by one senior manager, having just gone to tell my boss I would need some time to help my wife. Talk about a sliding doors moment.
- Any time line given by the doctors will be a worst case scenario, as is alot of information about side effects. They have to tell you the worst so you dont sue and get pissed off. That way when things turn out better, you are happy. Sort of. We had a 12 month prognosis nearly six years ago, so now feel we have been given extra time. We have also had meetings where we have been told to get things in order, but again still here.
- Meetings with the doctors are confusing. You get given so much info that you dont know what is important and what isnt. You need to write down so much (words that have strange spellings a speciality), and determine what tells you something useful. You need to write down what tablets are needed and when, as that information isnt given to you.
- Which brings me on to lists. Why dont the hospitals give you a checklist for tablets – we have had to write out so many ourselves, and are never quite sure if it right. But you will need to write out lots of lists. And they change when treatment is ongoing, and if you are lucky and have a few different specialists, no one doctor will. There are loads of checklists you need
- The impact of treatment isnt just the chemo side effects. Mental associations play a massive part as well. Food when eaten during the time in the chair can cause sickness, sometimes even the sight of the food stuff can trigger that. Dont wear aftershave or perfume – my wife has mental associations with smells from the routine of going in. We had a set of hospital clothes that had to be washed and hidden away after visiting the hospital. The mental association can be dehabilitating.
- And physically the treatment is harsh. My wife lost serious weight, and her arms looked like twigs. Finding food to bulk her up when she was feeling sick was tricky. Doctors recommend protein drinks and so on, but she wasnt having that. Eventually anything we could find out of desperation – pancakes, Angel Delight. It was harder as she is vegetarian.
- Mentally treatment and hospital trips can play on you the caregiver. Just the worry while waiting. Not being able to help, apart from drive or collect drinks. I felt useless alot. That was and is a horrible feeling. And the hospitals are horrible places by and large. Not the people working there – they are the most amazing people on the planet. But the structures are grey, and ageing, with rickety chairs and expensive parking and food. One we visited at one time had high windows to the room, and felt like a Victorian jail. It is so depressing, on top of the reason for being there.
- Be prepared for every conversation with friends to be about your partners illness. We are defined now by cancer. They are keen to help, but sometimes the help you need is not to mention the illness. Treat you as you were before. Buy me a beer and tell me about the latest record you are obsessed with.
- On the other hand, do accept offers of help. I try to keep everything going myself, but offers of lifts, offers of meals, anything like that will be a big relief. I didnt realise for a long time how much pressure was building on me as a caregiver, trying to do everything, and sometimes someone dropping over a ready made home cooked meal would save my day. I have said that I felt useless – well people one step detached feel even more so.
Initial 10 things I have learnt. Today I am concerned about my wife more than ever. She is struggling to eat a great deal, and getting very tired, looking grey and weak. I have mentioned before that she had a tumour on her liver, and I fear this has grown. She isnt telling me everything, and says she is fine, and I am not sure if that is to not admit to me or herself. We have the scan results this week, and hopefully will get some idea of what is going on.