I’ve previously mentioned that I get a lot of support from fellow breast cancer patients on the online forum and in this post I am going to share some of the reasons why this is an invaluable resource to me. It comes with a bit of a disclaimer in that some of the content is not for those of you with a prudish disposition. If that’s you, read no further!
The forum is extremely well organised because there is a separate thread for each month of the year for new chemotherapy starters. So all of the people who started at the same time as me set about introducing themselves and sharing a little bit about their particular diagnosis and treatment plan. As you can imagine, we range from people who are younger than me (mid 30s) to people who are into their late 60s. We also have more than likely got nearly every type of breast cancer covered between us. The treatment we are going through is equally varied as a lot of it depends on age and type of breast cancer.
So that was the basics over and done with. What do you talk about next? Most of our chat was unsurprisingly about side effects because these are the bane of our lives. Often we ask each other for tips and advice. Sadly, in the first cycle, several people were struck down with severe nausea and vomiting, which was rectified later on in their treatment by requesting the gold standard anti-sickness medication, which I had luckily already received. Then hair loss started for the majority of us and again we found ourselves pondering over the effectiveness of the cold cap (for those of us who used it) and whether to go for the complete head shave and just get it over and done with. These are the people to whom I can rant when my bathroom floor is covered in hair yet again and they totally understand what I’m going through. These conversations were then followed by photos of our thinning hair and photos of fancy headscarves and wigs.
One side effect which pretty much of all of us are struggling with after each treatment (and here comes that disclaimer!) is constipation. The advice we give each other ranges from eating particular types of food, to taking medication, to any other tried and tested method of being able to ‘go’. So you can imagine the delight when one of us posts something along the lines of ‘There was movement today’. One of my online friends summed things up by posting the following image and then commenting ‘We must be best friends already’.
Side effects is still part of our daily discussions but we have got to know each other as people a bit more (having got the poo out of the way). We have talked about our families, jobs, whereabouts in the country or overseas and more. I have even stumbled across a fellow ice hockey supporter, which is very exciting and we are already planning to meet up at one of the games when her team plays against mine.
Another hot topic (after poo) is food and drink. I’m sure I have bored you all with the weird taste changes that keep happening to me. In my last cycle, I managed to find some hot drinks that I enjoyed since I had gone off tea and coffee, whereas in this cycle I cannot face any hot drinks at all. I developed a craving for Ribena last week (usually I can’t stand the stuff!) and when I went over to my brother’s house, I had a drink of Fanta orange which was the best thing ever. Again, I don’t normally drink fizzy drinks so this took me by surprise as well. So on the forum, we often take to posting pictures of our dinners and drinks with the hope of inspiring one another. One particular lady is very health conscious and keeps us all in check with her healthy recipes.
You have probably gathered the reasons why I find the forum so supportive. We are all in the same boat (of sorts) and it is really good to be able to compare notes on a daily basis. It helps to have people who are slightly ahead in the cycle as they can give insight as to what we can expect next, and it is rewarding to be able to support people who are behind me in the cycle. In addition, we sometimes just have a real laugh at the ridiculous situations we keep finding ourselves in due to having cancer and chemotherapy treatment.
One particular story made me laugh so much and became a real joke in my house so I will share this with you. The lady in question was out for a daily walk, as all of us on the forum try to do, and she saw someone coming towards her with a dog. As the person with the dog approached, my friend stopped to stroke the dog as he had come to a complete standstill. Then, lo and behold, the dog decided to wee on my friends leg! Well, she tried to run away (which was more of a jog in her chemo induced state) and the dog ran after her, still attempting to wee on her. The owner finally caught up with the dog and picked him up, but then the dog weed straight onto my friend, now more in the region of her stomach. How awful! So much for tips and advice on the forum – the only solution for her is surely to wear a wetsuit? Anyway, this then left me feeling a bit nervous when I went for my daily walk. Would you believe it, partway through my journey, I saw a lady who was pushing a pram whilst simultaneously texting on her phone and paying no attention at all to her dog. The dog had walked right up to me and effectively blocked my path so I couldn’t get past. Cue panic mode! I thought about my friend’s experience and decided it was best not to engage with the dog, so I waited patiently (if a little nervously) for the owner to do something. Finally, she pulled his lead and I was able to pass, very quickly, without getting weed on. The unanswered question is, do dogs feel the need to wee on chemo patients?
Whilst not every question can be answered by one of us in our group, we often get a visitor from an earlier thread who is able to advise us. So the community is massive and there are many other opportunities to chat to fellow cancer patients. But what is particularly nice is that our group is so supportive and sometimes downright hilarious. We are hoping to meet up when all of this treatment is out of the way. Until then, we know we are always there for each other and that is a real comfort.