I haven't posted in quite some time because I've been in hospial 6 weeks out of the last 7.
I'm hoping someone might be able to shed some light and/or offer some encouragement regarding the problems I've
been experiencing.
I have had 25 radiation treatments plus two rounds of Mytomycin and 5FU. Approximately 10 days after the first chemo I wound up in hospital dehydrated, very low white and red cell counts, and a urinary tract infection. I was given 2 blood transfusions, tube feeding, IV saline with potassium and antibiotics. During the 3 week stay I was unable to eat anything, and continually vomited bile. I was dischaged and had one week before the second round of chemo.
Five days after the second chemo finished I wound up in hospital for another 3 weeks. Once again I was dehydrated, had very low white and red blood cell counts, low potassium and other electrolytes, and while in the emergency department developed a high fever. After blood cultures were grown I was found to have two "bugs" growing at the site of my PICC
line. So, once again I was given two blood transfusions, tube feeding (until the "bugs were discovered, at which time the
PICC line had to be removed), IV antibiotics, saline and potassium, and anti-nausea meds. The Infectious Disease doctor felt it wouldn't be a good idea to insert another PICC line because the "bugs" would go after it as well, so I'm left with regular IV in the small veins wherever they can find a site. I was discharged from hospital 5 days ago, and have had 5 IV sites so far. I have continued on at home with IV antibiotics which finished today, plus a Litre of saline to keep me hydrated.
I have had nothing to eat (that stayed down) for 6 days. There was only one day when I managed to eat some soup and keep it down. I can't even begin to try to drink Ensure or other meal replacement because I start to gag. In the meantime I've had dry heaves. I had to go to the ER Saturday because the home care nurse couldn't find a site to start another IV.
While in the ER they got a new IV site going, gave me a Litre of saline, the antibiotic and IV Zofran, which I was told is the strongest anti-nausea med available. Prior I had tried Gravol, Maxeran, and Stemetil. I was given a prescription for oral
Zofran, but I still can't eat. Everything I've tried just won't go down.
It has been 4 weeks since I finished chemo and radiation, and now I'm wondering how long this nausea might go on. I have an appointment tomorrow with the chemo oncologist and have to have blood work done. I know my electrolytes are going to be way down again, and I'm worried I'll end up hospitalized again. Tomorrow is supposed to be my last hydration treatment at home and at this point I'm only able to drink about 3 cups of juice/gingerale/water a day, so I will be asking to have the hydration continued at home.
Is it normal to have this much trouble eating and drinking 4 weeks after ending treatment? I know everyone is different,
but I'm starting to feel very discouraged. Peta, if you read this would you let me know how you're doing. I tried to find your BLOG but didn't have any luck. If anyone can shed some light on this or has any suggestions I would very much appreciate your feedback.
Dear Judi
Oh my goodness what a dreadful time you have been having. I am so sorry to hear this news of your awful experiences.
It is really strange as I haven't been on the site for around 5 weeks now but was sitting here watching week two of Wimbledon tennis on the TV this afternoon, trying to stay out of the stifling heat we have here at the moment as a result of a huge heat wave we are experiencing here in the South East of UK at the moment. I suddenly thought I wonder how Judi is getting on and logged on and then was amazed to find your posting of yesterday.
I seem to have had a very easy ride compared to you. I too had two infections at the site of my PICC line during the time I had it in. Both times I felt pretty rough straight away and spiked a temperature and had to ring the emergency phone number I was given by the oncology team and had to go in to the hospital to be reviewed. Each time it was on a weekend! Typical! I hated that PICC! I could feel it much of the time and it gave me referred pain above my chest bone and occassionally down my left arm especially when I lay on my right side. The line went in my right arm. I had to have Flucloxacillin both times which seemed to clear it up very quickly. I was never so pleased as they day they took it out for good and all the referred pain disappeared within 24 hours. I had really high blood pressure throughout the treatment which the oncologist had concerns about. I have never had high BP in the past and so he insisted I visited my GP 3 times a week for 2 weeks after the treatment finished to monitor it and lo and behold it very quickly came back down to normal and has remained there which has been a great relief! I am sure it was just because I was stressed out much as I tried to remain calm and relaxed!!!
I had a few episodes during the treatment when I felt strange and very sick even after the two cylces of 5 FU had finished and was told it was probably dehydration and was told I had to really drink as much as I could each day and so I did, even though this meant getting up to the loo 3 or even 4 times a night! I felt very exhausted too during the first cycle of chemo but much better during the second. My blood counts dropped especially my white cell counts and so I was told I wasn't to go out at all or mix with people till they recovered which was about 2 weeks after the last cycle of 5 FU. I felt pretty isolted and felt at times I was going stir crazy but thank goodness for the phone and e mail! To be honest though I din't feel too much like socialising at the time so it wasn't too much of a hardship. I finished my radio treatment 6 weeks ago. The following two weeks were horrendous. I had really bad radiation burns which were very painful and made walking about difficult and going to the loo excruciatingly painful and something I dreaded. I was having to go about 4-5 times a day as I didn't seem to be able to go all in one go which the radiologist explained was because of the inflammation from the radiotherapy. In the end the only way I could go was to go standing up hanging onto either side of the door handle screaming my head off and then ended up in tears for about 10 minutes after till the pain subsided again. It was ust like passing shards of broken glass. This, thank goodness, has now all settled down again and I realised that week by week after the peak of the radiation treatment, i.e. 2 weeks after the treatment ended, that as each week passed it was getting easier and that the skin burns in the nether regions and womenly bits was slowly healing. I tried every lotion and potion going given to me by the specialist nurses and I found one of the best things was the hydrogel dressings they gave me to apply regularly which soothed and cooled. I did in the end have to seccumb and taking the stronger cocodamol regularly but weaned myself off this about 2 weeks ago now. I was lucky in that I did not have the cystitis I was told to expect.
At the moment I feel really well. I am sleeping and eating well and am trying to build up my fitness by power walking about 40 minutes to an hour a day 5 times a week, or at least I was until this weekend when I slipped and fell down a small flight of stone steps at my daiughter's and sprained my left ankle! It is now three times the size it should be and very colourfully bruised! So that has put paid to the walking this week. It is much less painful today though so am hoping it is on ther mend.
I see the oncologist tomorrow for my first internal exam following the treatment and then in 6 weeks time I have to be admitted for an examination under anaesthetic so that they can determine if I am in remission or not. Finding this quite nerve wracking but he said we were going for cure with the combined radiotherapy and chemo so am focusing on that. I plan to return to work after this as my GP has persuaded me to wait until then. I am due to retire in November so it will be just enought time to wind up over 30 years of working and sort out my office etc!
So you see compared to your journey mine was easy! It is not something I would like to go through again or wish on my worst enemy and I am very glad to have left those"ground hog days" of going to the hospital each day for the radiotherapy behind. Saying that the team there were wonderful and made the experience more bearable.
How are you coping at home on your own throughout all this and who has been looking after your little dog? Has your sister
been helping out?
Judi I am sorry I am not much help but I do hope that you are now over the worst and will be soon on the road to recovery. Hope too that you have managed to avoid readmission for the time being. Do stay in touch and let me know how you pogress.
Take care
Love
Peta x
Dear Fi
So good to hear from you. 18 months, wow that sounds great. I will be thinking about you next Monday and wish you all the best. Looks like our lives will revolve around these check ups from now on and is just something I will have to learn to live with.
Saw my Oncologist on Monday. He was quite pleased. I have had a sore spot on the other side to where the original soreness was and when he gave me an internal it was still quite painful. He said there is still an ulceration there but he thinks it is probably due to the anal canal still healing from the radiation treatment and is what he would have expected at this stage although he couldn't be sure unitl the examination under anaesthetic at the end of August. Since then I have been more sore again going to the loo as he seems to have upset it again! I know I should find what he has said positive but have been a bit more anxious since! I just hope it settles down quickly and doesn't keep on irritating till I have the exam! Did you have similar? He is booking the exam for the end of August as we are going away on holiday on 11th September for 3 weeks and then I see him again Oct 10th. He then plans to repeat theCT scan in January again to check it hasn't spread anywhere else.
Let me know how you get on on Monday won't you?
Take care. Peta x
Thanks for answering my post. I'm happy to hear you are doing better than I am. I still can't keep much if anything down. Yesterday I managed to drink a whole bottle of Ensure but it came back again in less than l/2 an hour. Actually I'm really starting to worry about when this is going to end. I've lost 35 pounds now, and I'm starting to look like a skeleton. Home care sent a dietician to the house the other day which is all fine and good. I had a dietician in hospital as well, and they both gave good advice regarding what I should be eating and drinking, but since I can't eat the information is kind of pointless at this time. Every morning I get up and tell myself "I'll do better today", but it isn't something I can just make happen. I'm worried about my potassium level again, it was low a week ago, so I know it will be even lower when I have bloodwork done on Thursday. When I take the dosage of anti-nausea meds the chemo doc recommended I can't stay awake, and still can't eat, so that's a dead end also. I'm starting to wonder if I've developed a real aversion to food.
I know what you mean about the radiation burns. Anyone who saw mine just shuttered, even the nurses. It had healed for the most part, but I'll have some scar tissue as a reminder. Overall, I can't say I'd ever want to do the treatment again either. One of the chemo residents told me they try to prepare people for rough going, but if they told their patients everything none of them would do the treatment. He also said that the treatment protocol we had is one of the most aggressive.
It is a worry waiting to find out if it's in remission, and I'm trying to not even consider the possibility it isn't.
I didn't sleep a wink last night. My mind was whirling around in circles worrying about whether I'm going to starve to death before this is all over, worrying about the fact that I'm here alone so there's nobody to help if I get into trouble during the night, worrying about this and that......the kind of things that run through the mind when the rest of the world is asleep.
My sister has been helping out where she can, and I'm very appreciative. A friend looked after Gizmo while I was hospitalized and comes every morning to walk him so he'll do his business. I wish I could start walking him again, but I'm so weak I'm afraid I'll get into trouble along he way. It's going to take quite awhile to build my strength up once I can start to eat. I see the radiation oncologist on the 15th so we'll see what he has to say. I keep trying to get someone to give me a ballpark figure for how long this could go on, but they tell me "everyone is different".
I'm feeling very discouraged at the moment, but still putting one foot in front of the other. Sorry if I sound negative.
Judi
Not sure I can suggest anything much to help. Have you tried drinking the ensure really slowly? You really must discuss all this with your oncologist and let them know the problems you are having. I am sure they must be concerned that you have lost so much weight. I am sure they will not let you starve to death and could always resort to tube feeding till you can manage to keep things down if the worst came to the worst. Not a very nice thought I know but at least you would be getting some nourishment. They are also able to insert a tube directly into the stomach through a gastrostomy too I think. At last they can with children from my experience.
Do you think it is a problem of physically swallowing? If so why not ask for a referral to see a speech and language therapist who specialises in eating and swallowing difficulties they may have some suggestions and would be worth a try I would think.
Glad to hear your sister is helping out and that you have someone to walk Gizmo for you. You should definitely wait till you are stronger before you attempt to take him out yourself.
Keep your chin up and try to stay positive. I am sure you will turn the corner soon. Take care
Peta x
Hi again. well, many days have passed since my initial post, and very little has changed. I am now down almost 40 pounds, with no end in sight. I see the chemo oncologist tomorrow and have blood work done. I know my potassium is going to come back too low. I've now started on Dexamethaone (steroid) and well as taking the Zofrax to try to combat the nausea. I keep vomiting bile. I'm wondering now if I'll have to get another PICC line so I can have tube feeding at home as well as the saline for hydration. The weakness continues to get worse and my body is starting to look skeletal. I wish I could find someone on this website who had extended nausea like this and also how long it went on. Maybe I'll have to post on a more frequented forum to see if I can find anyone. All I want to know is there is a light at the end of this tunnel.
the dietician who called me today suggested sticking with cold foods since you don't get the same amount of odour with cold foods. Today I had a litle puddling cup with applesauce in it, and a small yogurt which I couldn't finish. Even water tastes terrible, but I continue to drink it. I try to have a glass of orange juice each day for it's potassium content. I'm so wek though it's hard to get up and down the basement steps to get the laundry done. I truly expected I'd be feeling better by now. I had to start using the dilator yesterday since it's been 6 weeks since radiation was finished. I felt great trepidation because of the way my luck has been running, but it wasn't bad at all.
Well, it's after 2:00 a.m. so I should try to get some sleep. In my current state tomorrow will be a long day because I
tire and get shaky so easily.
Glad you continue to do well, and thank you for replying to my posts.
Oh dear me you are having a very tough time of it ! you must be allergic to something in the treatment. Everyone is different, it's true. I feel for you.
I had the 28 days radio chemo, with an infusion on the 1st day with steroids and B6 and anti nausea which they said be sure to take from day one.
I did feel sick and was not hungry but I am greedy, and not needy, on my own too, I think it helped. I felt sick but thank goodness I never threw up, sipped from a jug of boiling water poured over grated ginger, squeeze of lemon and spoon of honey I kept in the fridge. sipped it all day.
I was so glad of the weekends off the treatment. Everything tasted most peculiar, even water but I persevered, I hardly saw my oncologist, they have no time and so many patients but she said DRINK DRINK DRINK so I did as much as I could, and like the lady said before ended up going to the loo at night 3 times sometimes ! keep that bladder and kidneys going, keep that gut juicy !
I remember the first walk to the park, it was a big deal for me, my friends didn't realise what a big deal it was. My first walk to the shop was a milestone too, I felt rubbish and in tatters but happy that I had done it and ticked a massive box and went back to bed. It was hard to keep up the enthusiasm the next day, and my emotions were very close to the surface, I would cry several times a day but grab onto the good bits like sucessfully getting up, washing, excreting and dressing by 4pm, try and ride those little successes.
I hope if you can get up and down the steps to the basement, you can try just gently walking to the corner of your block and sitting outside and feeling the air and weather on your face, seeing the birds. I sucked ginger sweets, they helped, I didn't spew them up.
I hope you can draw your strength up despite these awful setbacks and try and fight this monster.
