Physical (and mental) side-effects of chemoradiation for SCLC

Hi only son Patrick. I can see in your post how frustrated you feel, and I am sorry you are going through this with your parents. It must be so hard when they are not close. 

The radiotherapy your mum has had. 33 sessions is quite a lot. I myself had 5 intense sessions, and I can fully relate to how your mum is feeling. The radiation builds up in your body, and the side effects get worse over time, well after the treatment has finished. My oncologist told me to expect to feel like I had the worst case of sunburn on the inside! And that is exactly how it was. Lots and lots of ice lollies and ice cream to try and cool it down. I did have pain killers, but I don’t do well on opioid medication, so I didn’t take it for long. 

I think it is quite common to sleep after chemotherapy, and the radiation makes you tired as well. I think it is best to say if her body is telling her to rest, then that is the best thing to do. 

I know how frustrating it must be for you to see that your mum is still smoking and drinking. Going through cancer is such a stressful thing, and we turn to these things to help when we are stressed, not any easy addiction to give up.Your mum will know that what she is doing is not good for her, and smoking will certainly not be helping with the oesophageal pain. That needs to heal, and smoking will not help! I feel your frustration, I don’t know how you will convince her to stop. I am sure her oncology team will be encouraging her to stop as well. 

I guess the question would be, will they move to a service flat willingly. I know from previous posts you have said how independent they like to be. It is a difficult one, but I can understand how you feel having to go home every 3 weeks. It is a lot of responsibility for you. Looking after anyone with cancer is stressful, whether you are there 24 7 physically or just mentally, you cannot switch off from it. 

Do you have anyone close to you that can you can discuss this with? Sometimes talking it through with someone can help you see things more clearly. Don’t forget you can always do this by calling the helpline on 0808 808 00 00. 

Wishing you all the very best x 

Hi Chelle,

Thank you for your reply, very useful info. It's been a bit of a rollercoaster this week. On Tuesday morning, after nearly 30 radiation sessions and four chemo sessions, she felt very weak and, for the first time, had to vomit. So I had my dad take her to the hospital (I had called her oncology team so they were expecting her). She had a few blood bags as she was anaemic (I believe chemo can affect red blood cell count), and some glucose and medication to help her swallow food. They kept her overnight and within 24 hours she felt a lot better, was eager to go home, and so she was dismissed. Radiation will continue for four more sessions next week, then that is done (each session is 15 minutes and her back hurts a lot from the position she is in during radiation). Her chemo however has now been suspended - she was meant to have her fifth and final round (three days consecutive) on Wednesday. We are meeting her pulmonologist (part of her MDT) on Wednesday and hear what he has to say. There are no cancer cells in her blood and on the imaging taken this week, they cannot see any cancer neither. Query does this not require a CT scan to be certain? I hope she now has sufficiently recovered to have the final chemo (she probably has, although it will tire her all over again) and that the one week delay does not render it ineffective. We have gotten so far and she has shown such strength but she drinks too much, eats too little (because of the pain swallowing) and smokes way too much in my opinion. From my perspective to come to the end of very taxing but successful SCLC (ltd disease) treatment and light a cigarette. Of course I can also fully understand the despair and uncertainty that trigger the desire to smoke. I tell her nerves wont kill you, but smoking will. She then shrugs.

I have my girlfriend for support and so it's quite alright, but we both scratch our heads thinking: how can we stop her from harming herself by still smoking. She does not want to see a psychologist. I try to sign her up for 'Rookstopbegeleiding' as it is called in Dutch: assistance with quitting smoking.

Thanks again for your thoughts above, I very much appreciate it.

Have a great Christmas and God Bless.

Patrick.

Hey Patrick sorry only just seen this . I also got the sunburned windpipe but they gave me meds which was an antacid / pain relief and liquid paracetamol and it does help a little … I eat soft foods mash potatoes , scrambled eggs etc yoghurts mashed fruit … veg juices as I didn’t want to resort to the hospital drinks and wanted to keep solid food if some description going down …. I am also very fatigued I think more from the RT than the chemo and was told 4-6 weeks to start recovery from it … hope this helps ? X

Hi Elly, I am trying to get her to eat more because I feel that the period of concurrent chemoradiation is when she got extra tired and the radiation to the oesophagus (an induced oesophagitis) means she has pain when swallowing. So my mom has weakenend and then her red blood cells were low, so they gave her a blood transfusion which perked her up. But we are at peak fatigue after four cycles of chemo and 30 radiation sessions. I am not sure if she needs any more chemo or whether it could be postponed until she has her energy levels back. So I have rallied and I feel like I am running around all day thinking of things for her to eat, but overall she still eats - in my view - too little, due to her pain (which should eventually subside). It would be sad if in the end her treatment did not go to plan 100% because the side effects of radiation ruined her desire to eat. Today I got her antacid to drink, beef stew, vitamin drinks, glucose drink (AA), ... Her core diet at the moment is yoghurt for breakfast, croissants with jam for lunch (or soup with bread) and a lot of cheese based dinners recently (omelette with cheese, potatoes with cheese) or smoked salmon with Philadelphia cheese. I try to have her eat more animal protein (chicken, fish, beef). Having reached more or less the end of treatment, I am worried about what lies ahead. She still drinks some wine and beer and I wonder how that affects the body's ability to recover. She also sips on bottles of Fortimel Extra. 

It does sound like you are eating similar things, however, so I will take some comfort knowing that it is a reasonable diet. 

Take care and Merry Christmas.

Patrick

I think you are doing as much as you can Patrick and only time will heal now …. I also find juicing beneficial and few veggies juices made and in the fridge , help on days it’s difficult to eat …. I hope things improve for her , it’s a tough old treatment having both chemo and radiation at the same time , and I keep being told I’m too hard on myself in terms of recovery , her body has been through a lot , the radiotherapy is still working long after treatment ends , and symptoms like fatigue linger for quite awhile , I find this frustrating … if she’s is eating little and often then that’s better than nothing …. Much love sent to you all … Elly x