As January signifies 4 years since being told it looked like I had cancer, I’ve been thinking about how myself and my wife live with it and how it affects our lives, so I thought I’d do a post that doesn’t include any updates on my treatment or scan results, but it’s solely just my thoughts and feelings about what this is like. Before I go into this blog entry I would like to say that I have kept on amending this post so it doesn’t sound like a massive whinge and a woes me post, but it is tricky to glam up this situation. Also these are just my thoughts and feelings that I wanted to share about my experiences living with a cancer diagnosis and to warn that I will discuss some physical aspects, so maybe don’t read on if you are currently eating or thinking of eating (I will put this at the end so hopefully you won’t see it on your screen immediately 
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I shall start with the mental effect of having cancer and being on active treatment during the wintertime as it can be a lonely place. The person I feel it affects more is my wife as she is by far more sociable than me. As an example from pre covid and cancer times, aside from family (who are stuck with me really whether they like or not ) & work friends, I probably had one close friend I’d see frequently & then other friends that I’d see sporadically (for me I would say this hasn’t really changed, I still see that one friend more frequently than others) whereas all my wife’s friends are more local to us, and she would see them more often. Over this festive period both myself and my wife have dropped out of meet ups with friends and family due to people having colds themselves or having family members with colds. I appreciate this time of year is when colds are far more prevalent, however I feel that most people are back to “normal” post covid and I would say don’t have to even consider being cautious like we are in regards to avoiding colds.
I’ve not read many other cancer stories if I’m honest because I’m living with cancer, I don’t want to overload myself with things, but what I have read from pre covid times is people used to go to places that weren’t busy and to try avoid coming into contact with people with colds. Obviously, every cancer patient is different, some will live as normal, others will take precautions like we do finding places where we can sit privately or meet up with people indoors with a little window open for ventilation, but the main thing for us is that people are well and healthy, that is all we ask. However, I do feel that my wife is really struggling with this, not the fact that she is, let’s be honest, sacrificing her life to keep me as safe as she can, but I think more the fact she is in her 30’s & she can’t be doing normal things. No doubt my wife will tell me I’m not a burden to her, but is it hard to not feel like a burden on things like this as she is making the decision for me. Pre my cancer diagnosis my wife did have her own mental health issues which I won’t go into, but I do feel that my cancer diagnosis has magnified some of these issues for her, so I know I’m not the sole cause of her issues but I have added to them. An example of this is she missed out on a couple of meet ups with friends over December due to her not feeling great in herself but also because she was concerned about keeping me safe from illness, so the two things combined convinced her it was better not to meet up.
Myself and my wife have had discussions about how we stay safe and what we both think, we both agree that getting a cancer diagnosis during covid has massively affected us, I think because at the time of my diagnosis there were still lock downs in place and vaccines were just being introduced that maybe oncologists we came across put a lot of fear into us about keeping ourselves safe not knowing what would happen to me if I caught anything. This fear continued the more treatment I had and I would say has maybe slightly relaxed in the last year or so with a different oncologist who has said to us to do things we are comfortable with, so I think sticking with avoiding colds makes sense as we have no idea how it would impact me. We have also discussed how my operation in September 2021 also affected my wife in terms of her being on her own while I was in hospital in Basingstoke, as the country then was coming out of lockdowns she had to keep herself safe rather than see people as she didn’t want to let me down by getting ill and not being able to see me, as the rules for hospital visits for me where that I could only have one designated visitor the whole time I was there. So the whole time I was in hospital she only saw one person who was my friend who lives nearby as they forced themselves round and kept themselves safe to make my wife feel at ease with them visiting, this again I would say has had way more of an impact on my wife than me about things because I was merrily dosed up on painkillers with nurses to talk to daily and largely spent time asleep, I didn’t have to go through the stress of being home alone for a few weeks.
Recently my wife opened up to someone close to her about how hard she finds things and they suggested that maybe the reason it’s hard to meet up with people is because she checks with them all the time to make sure that people are well and not ill. This is not something you really want to hear from someone close to you as to me it seems like it supports the feeling I have that some people do not fully understand what we’re going through and how much of an effort my wife puts in to thinking about me and wanting to keep me safe. It’s also hard for me to not feel guilty when I hear this because I know my wife is doing this all for me and it really makes me feel like a massive inconvenience to my wife and like I’m holding her back. I think I find it hard because of this to work out who to talk to at times about things, as I feel that some people perhaps don’t know what to say or it makes them uncomfortable to talk about things, I would say that I’d be more than happy for people to say this, or equally I’m happy for people to ask questions. Unfortunately we do talk about cancer a lot as it is our life living with it, we can’t escape it and believe me we both would like to escape it, I just hope people aren’t bored of us talking about it as it’s been going on a while.
I do feel we have been doing a lot more in terms of seeing people and going out and about since I have been on the immunotherapy, yes we are cautious but it’s not like I was on the chemotherapy where I honestly didn’t want to leave the house as it was destroying my skin, yet alone see people in that state (well the state I perceived myself to be in which I felt I looked like a monster). But I do wonder if I should’ve let more people see me at my worst because then maybe it might help others understand what we have been through and what we continue to go through. This said, I still don’t think I want people seeing me when I’m tired (well more me seeing other people) as I don’t really engage in things and I’m pretty silent, which is another thing that must be tough on my wife having to sit there and try get a conversation out of me but not really getting anything from me.
An example of this is after the chemo that destroyed my skin and before I was on the immunotherapy I was in a lot of pain but I was slowly being introduced to different pain killers, myself and my wife had a pre planned trip to see her Dad on the Isle of Wight, I wasn’t in a good place, but I wanted my wife to see her Dad. While we were there I didn’t have the pain under control, so much so that a few months later my father in law said that when he saw us he worried that I was on my last legs & that was it for me. Now I find this funny (I’m a little crazy, it’s fine) but the reason I find it funny is because I’d kept myself largely hidden away, no one else other than my wife saw me at my worst, I’m sorry others had to see me that way, but in a way I’m glad too because I feel that has helped with understanding that it doesn’t matter how well I’m doing now, at the end of the day I’m still pretty ill under the surface, just currently it’s being kinder to me than it has been.
In terms of physically living with cancer, I have spoken before about fatigue in other posts, I do get tired I’d say rather easily, the speed of how quickly I tire depends on what I am doing/what is going on around me. To offer another example, over Christmas myself and my wife saw her mum and brother plus their other half’s a couple of days before Christmas, I found the time spent with them very tiring as there was so much noise with people talking over each other with multiple conversations, even though there were only 6 people in the room, it felt like there could’ve been a lot more people. Compared to seeing my parents, sister and brother in law on Christmas Day, that social aspect I didn’t find as tiring. It was still tiring but as it was calmer and quieter it wasn’t as pronounced, however I’d say combined with the driving as they live further away than my wife’s family, that by the time we got home I did feel as tired as I’d felt with my wife’s family. My reason for writing this all down is just to give an insight into how different situations still have the same outcome to me. Other times if I don’t sleep particularly well, I can tire very quickly doing very little and usually I don’t venture out of the house, again leaving my wife to be the one has to deal with not being much fun.
My bowel movements and what affects them also chop and change my habits & affect how I feel. For example the past couple of months I’ve had marmalade and drunk some cloudy lemonade for the first time in a while, however I’ve noticed around these times that I seemed to have more sudden and rushed bowel movements (more so than usual) so I stopped having these items and noticed a difference. It is the same reason I have reduced my dairy intake and that I also do not eat much in the way of veg, because it makes me feel rubbish (I really wanted to put crap here and say no pun intended, I still have ). This is partly another reason why I didn’t want to sit and have proper Christmas meals with family over the festive period, I feel there is an added pressure to be on top form over Christmas to enjoy time with family and I’m scared of ruining peoples Christmas breaks if I’m not fully with it or if I have a dodgy moment with my bowels and then feel awful. So having shorter meetings with snacky food allowed me to still see people but also feel that I was cutting out the risk of ruining the time for others.
Well done if you have got this far and I really hope this has not come across as a woe me blog entry, I’ve really tried to make it informative about what living with cancer is like in my 30’s, I think knowing my birthday is very close and it was my birthday 4 years ago where I started showing signs of not being well has made me think about things. I’ve tried to keep some light heartedness in here as well because I don’t want everything to be miserable. I do feel as I’m in the best place I have been throughout this journey but I still have down moments and days, I think that is only natural and sometimes I think about where I am and what has been going on, I don’t think I’ll ever fully process it no matter what happens at the end. Apologies if anyone feels they’ve asked me how I am and I’ve not said any of this, what I would say is sometimes I don’t think of these things and I feel okay, other days thoughts come to me and I write them down, I’m not very good at communicating in a spoken form & find it massively easier to write things anonymously (on the McMillan blog forum) for my social media post linking my account to my blog, it’s slightly less anonymous and this becomes a pointless sentence .
