Hello. I finished 4 rounds of ABVD a month ago and thought I would share some tips for people about to start treatment.
No 1- Side Effects. These will vary from person to person, but I was unlucky and seemed to have most of them; neutropenic sepsis, bone ache from the injections used to treat neutropenia, mouth sores, numb fingers, bad constipation and pretty chronic nausea. Most people, however, will only have one or two. The problem for me was that I often waited a few days of experiencing horrible symptoms before calling my nurse, because I didn’t want to bother her, at which point the symptoms became more difficult to treat. My advice is to let your nurse know as soon as you get symptoms because it is much easier to treat them when caught early. My nurses told me that they need patients to communicate so that they can do their job properly, eg adjusting chemo drugs, and prescribing treatments. Don’t feel bad- pick up the phone and call even if you do not have an appointment booked.
No 2- Constipation. Chemotherapy is extremely dehydrating and causes constipation, but so does the tendency to drink less because you feel unwell. Drink lots- tea, hot chocolate, cordial - whatever works for you. Personally I found drinking water very difficult in the days following chemo, though I forced myself to with an ever changing supply of cordials (each of which I went off right away). Advice: Never skip your dose of laxative/stool softeners, even if the constipation is not so bad on a given day. Additionally, I found that fresh, cold fruit was one of the nicest things to eat - both nutritious and hydrating (melon in particular!) In the days leading up to chemo I would make sure I had some nice melon, apples and pineapple in the fridge and would eat that throughout the day. Frozen grapes are also good- especially if the mouth gets sore a few days after treatment.
No 3- Comrades. If you are able to, seek out groups. Many people struggle with isolation – you may have all the love in the world around you but the experience of cancer and its treatment can be difficult for others to relate to. I am lucky to live near a Maggie’s Centre and found the occasional event/workshop that I could attend really nice to be amongst other people with cancer. Strangers with something quite fundamental in common. You might want to wait until you feel better to do this - the social support will be needed after treatment which can be a difficult time, too.
No 4- Hair. This will vary from person to person but I found the process of hair falling out a lot worse than, eventually, shaving it off and not having hair. I kept a fringe at the front for much of my treatment which, with a headscarf or hat, gave the impression that I had a full head of short hair. But as it thinned and littered my flat/dinner plate this really made me feel ill and like things were going downhill, not to mention the grim sight of myself in the mirror covered in patches! Once I shaved it off I felt more positive, and ‘on the up’. Worse for me was losing my eyelashes and eyebrows. I found eyebrow make up works well, though eyelashes more of a ‘sick person’ giveaway.…but one month post chemo both are growing back fine.
No 5 – Ask questions. I spent the first period of chemo being a very ‘good’ patient; no questions, no complaints. But I became quite distressed and anxious internally. A quick chat on the phone with someone at the Maggie’s centre (the Macmillan helpline is great too) helped me to realise that chemo can make you feel completely out of control of your own body, and that sometimes you need to take a bit of control back by being more involved in the process, even if that just means voicing your concerns more. Understanding that helped me a lot.
Try and stretch your legs every day, keep in touch with people, don’t be scared to take up offers of help and invest in some comfy trackies and socks – if you are anything like me you will be in them a lot.
Good luck!
Hi again and well done getting through your treatment.
Although I had NHL and a different treatment journey I am sitting nodding my head as I look though all your points and my mind is saying “well this was me”
I am sure this will be a great help to others just starting and I am sure that some of the others who are post treatment will add to your great post.
Enjoy life..... but do consider dropping in past the Community as your experience can be a great life line for those standing looking into the dark treatment tunnel.
Good morning . I see this is your first post in the HL group so welcome.
You may want actually join the group by hitting the ‘Join the Group’ tab. If you want to receive email notification when someone posts in the group you need to select this.
The group is here to walk with you both during this time ((hugs))
Hi , a good post-it to put up on the triage is ‘deal with each day at a time’
......or keep this picture in mind ((hugs))
- A friend who was going through their treatment had it as their phone screen picture - start with the end in mind ((hugs))
