Рак кишечника, моя история. Третий год лечения, полет нормальный! — Transcript

Full transcript

1. 0:01Friends, hello everyone. It’s been a
2. 0:03long time since we saw each other,
3. 0:04talked, or I shared how things are
4. 0:06going and how it’s all progressing. I
5. 0:08have some news. Good news. I’ll share
6. 0:11and tell you how my treatment is going.
7. 0:14Probably the most important news in my
8. 0:16life, yes, likely in my life. In June,
9. 0:19my son was born. It’s almost been 3
10. 0:23months since I became a dad. Despite
11. 0:27all the circumstances and what seemed
12. 0:29like a difficult health situation,
13. 0:31there is this news. In short, we are
14. 0:35incredibly happy and everyone is
15. 0:37thrilled. And overall, life has changed
16. 0:40in a certain way. Regarding the
17. 0:43treatment, there is also good news.
18. 0:45Treatment continues; I’m still
19. 0:46getting my infusions. I still go in for
20. 0:49therapy every month. Immunotherapy is
21. 0:52also continuing; in total, including
22. 0:55the chemo, it’s probably crossed the
23. 0:5730 mark. I’ve stopped counting
24. 1:00because it’s all become routine,
25. 1:02honestly, but I’ve settled into this
26. 1:04schedule over these past few years. As
27. 1:08for my indicators, I recently had a CT
28. 1:10scan. I have a CT scan every 3 months.
29. 1:13The last one was in July. Over these
30. 1:15few years, the metastases have
31. 1:17significantly decreased thanks to
32. 1:19immunotherapy. Out of six, only two
33. 1:21remain. And so, I have a check-up every
34. 1:243 months. Little by little, they are
35. 1:27shrinking by 1, 2, or 3 millimeters.
36. 1:30It’s not much, but there is a
37. 1:32reduction, which is good. And there are
38. 1:35only two left. Resection of the
39. 1:37metastases. Surgery has taken a back
40. 1:40seat. They won’t be removing them
41. 1:41because, for now, the therapy is
42. 1:43managing. For the moment, they said
43. 1:45it’s better not to touch them and
44. 1:46just let things proceed as they are.
45. 1:48There are no major complications from
46. 1:49the therapy itself. The only thing is
47. 1:51this situation with my lungs—I
48. 1:52don’t know the exact name, they just
49. 1:54note it as a complication, but it looks
50. 1:56like sarcoidosis. But it is not
51. 1:57sarcoidosis. On the CT scans, however,
52. 2:00it looks very similar. And initially,
53. 2:02the doctors did diagnose it as
54. 2:03sarcoidosis. Then, when they found out
55. 2:05about the immunotherapy—and they
56. 2:06found out because I get CT scans at one
57. 2:08clinic and my infusions at another. So,
58. 2:10I’m followed by an oncologist at the
59. 2:12clinic. I get my infusions at one
60. 2:14facility and my CT scans at another. So
61. 2:16when I told them about the
62. 2:17immunotherapy, they said, "No, then
63. 2:18it’s not sarcoidosis." They say
64. 2:19it’s a complication from the
65. 2:21treatment. I don’t really have any
66. 2:23sensations like pain or anything. The
67. 2:25only thing is shortness of breath;
68. 2:27during physical exertion, my breathing
69. 2:30feels a bit tight. But overall, no,
70. 2:32everything is fine. Well, there is
71. 2:34severe fatigue from it, yes. For the
72. 2:36first couple of days, I feel a bit
73. 2:38rocky, but then I recover. My
74. 2:43oncologist recently sent me for a
75. 2:46colonoscopy. It’s because it’s
76. 2:48almost been, well, 3 years since the
77. 2:50diagnosis. And the first colonoscopy
78. 2:52was, well, almost 3 years ago now. They
79. 2:55took a look, everything is normal,
80. 2:56everything is good. Where the resection
81. 2:58was done, everything healed perfectly.
82. 3:01The gut microflora is good, there are
83. 3:03no abnormalities, no polyps, no new
84. 3:04growths, and visually there’s no
85. 3:06predisposition for now. As the doctor
86. 3:08said, after performing the colonoscopy.
87. 3:11So, regarding the colonoscopy. The
88. 3:12first time I had it with anesthesia,
89. 3:14when I was still in the hospital. But
90. 3:17back then, I didn't care what they were
91. 3:18doing or how, because my condition was
92. 3:20terrible and I wasn't up for anything.
93. 3:23Yeah. But this time, it was without
94. 3:24anesthesia. And I was, honestly, quite
95. 3:27nervous about it. The first time we
96. 3:30missed it, we didn't do it at the start
97. 3:33of summer because I hadn't prepped well
98. 3:36enough. We postponed it, moved it back.
99. 3:38There was a long waiting list too. The
100. 3:40second time, for some reason, I don’t
101. 3:43remember, it didn't work out either.
102. 3:45Maybe it was work, or I went somewhere,
103. 3:47I don't know, I don't remember exactly.
104. 3:50Yeah. Well, the third time I pulled
105. 3:51myself together, prepped well, cleared
106. 3:53everything out, and went in without
107. 3:54anesthesia. Overall, the experience, by
108. 3:56the way, was, well, fine. And as the
109. 3:58doctor told me, it’s better to do it
110. 3:59without anesthesia; there were several
111. 4:01options, I was given referrals to a few
112. 4:03clinics where I could have done it with
113. 4:04or without anesthesia. Well, they said
114. 4:07it’s better to go without anesthesia
115. 4:09because then you can tell the doctor if
116. 4:12you feel pain or something. The doctor
117. 4:15can then adjust their approach in the
118. 4:18moment. But honestly, in terms of the
119. 4:20experience, everything went just fine.
120. 4:23I was more worried and anxious, I’ll
121. 4:25be honest, because it only lasted for
122. 4:27about 15-20 minutes. M, well, yeah,
123. 4:30maybe 20 minutes. So, if anyone is
124. 4:34planning to do it or is worried about
125. 4:36going without anesthesia, it’s all
126. 4:38fine, really, you can get through it
127. 4:41and everything goes well. Yeah. Other
128. 4:43than that, everything remains the same
129. 4:45regarding my treatment, it’s all
130. 4:46progressing as it was. Now I get an
131. 4:49infusion once a month, though they
132. 4:51might increase the interval soon, to
133. 4:53every month and a half. I’m still
134. 4:55under observation, checking things out;
135. 4:58I recently switched to a different
136. 5:00clinic and the red tape with all the
137. 5:02paperwork has started. I haven't dealt
138. 5:04with that in a long time. But in the
139. 5:06hallways, in the queues while sitting
140. 5:08for chemo, well, for immunotherapy,
141. 5:11when we are there for chemo, you end up
142. 5:13talking to people in the ward. And
143. 5:15people are still complaining, yeah,
144. 5:16that it’s hard to get things sorted
145. 5:17out. I haven't dealt with this in a
146. 5:20long time because I only get it once a
147. 5:22year, but I ran into it now; not even
148. 5:24with the 57th [hospital] itself, but
149. 5:25just getting in, the lines for the
150. 5:27oncologists are just huge. So I had to
151. 5:31run around a bit and sit in queues
152. 5:34again. Well, I collected the
153. 5:35certificates, everything is fine. I
154. 5:37will continue treatment. My next course
155. 5:39will be at the beginning of September.
156. 5:42I'll get my infusion. Yeah. And then
157. 5:45wait and see. So, everything is good.
158. 5:48Everything is calm, we're living our
159. 5:50lives. In the role of fatherhood. Life
160. 5:56is moving along very interestingly;
161. 5:58it’s inspiring and gives me a lot of
162. 6:01strength. Therefore, if any changes
163. 6:04appear in your life, don't worry, it's
164. 6:08all for a reason. Yeah. How are you all
165. 6:12doing? Be sure to write in the comments
166. 6:14, let's chat. If anyone has questions,
167. 6:17I'll definitely answer, we'll talk. So
168. 6:20thank you all, all the best. Uh, write
169. 6:24in, let's chat in the comments. Be sure
170. 6:27to tell me what's new with you, who is
171. 6:29undergoing treatment, how it's going,
172. 6:31what the news is, what the
173. 6:32circumstances are. Yeah. And one more
174. 6:35thing, uh, I wanted to say, it happens
175. 6:37that people write asking for a doctor's
176. 6:40number, or they ask which clinic I'm
177. 6:42getting treated in. I say which clinic
178. 6:46it is. Some get offended, they ask for
179. 6:48the doctor's number. I still don't have
180. 6:51the doctor's number. I only had one
181. 6:53instance: my oncologist at the
182. 6:55institute, she later quit. She gave me
183. 6:58her number, and even then it was just
184. 7:00her work one, and she asked me to use
185. 7:03it only in case of an emergency. And
186. 7:07she gave it to me because when this
187. 7:09situation with my lungs appeared on the
188. 7:12scans, it was still last autumn, yes,
189. 7:14at the end of autumn I started going to
190. 7:17doctors, to pulmonologists, and many
191. 7:19looked at it and couldn't understand
192. 7:22anything from the report. And when you
193. 7:25mention "immunotherapy," some, well,
194. 7:27they honestly said: "I haven't
195. 7:29encountered this," pulmonologists would
196. 7:30say: "I haven't dealt with this
197. 7:32situation, I don't even know what to
198. 7:33tell you." I went to another, to a
199. 7:36third, a second, I saw many doctors,
200. 7:39and some just threw up their hands,
201. 7:41like, well, we don't know. Yeah. And I
202. 7:44came to the doctor and said, I said,
203. 7:46here's the situation, I've visited
204. 7:47several clinics, several pulmonologists
205. 7:49, and, well, people haven't encountered
206. 7:51this because this therapy is relatively
207. 7:53new. So she gave me her number and said
208. 7:55: "If you see a doctor." She also
209. 7:57recommended another doctor. If you're
210. 8:00with him, have him call me. That was
211. 8:01the only instance where she gave me her
212. 8:03number. Then she, by the way, quit. So.
213. 8:07My oncologist at this clinic changed,
214. 8:09but I really don't have anyone's number
215. 8:11at all. I mean, if I have a question,
216. 8:14or say, if there were times I couldn't
217. 8:16come in for therapy and called to ask
218. 8:19to reschedule for a later date, say, a
219. 8:22week later, it was all handled through
220. 8:24the clinic's contact centers, through
221. 8:27the receptionists. You call and get in
222. 8:30touch, or even if I need to pass
223. 8:31something on to a doctor, I'd also call
224. 8:33the receptionist and ask them to relay
225. 8:35the info or get some information back.
226. 8:37So please, no hard feelings. For those
227. 8:39asking for numbers, I really don't have
228. 8:41any numbers, no one's at all. And there
229. 8:43probably isn't any need for it. I
230. 8:46gathered that it's generally forbidden
231. 8:48now, apparently, for them to give out
232. 8:50their numbers; I know some clinics do,
233. 8:52because I had some numbers before. For
234. 8:55example, when I was getting treatment
235. 8:57at Petrov, I had the oncologists '
236. 8:59numbers there, and I know that some
237. 9:00people do stay in touch with their own
238. 9:02oncologists. Well, maybe in some places
239. 9:03they do. But where I’m being treated
240. 9:05now, I know that it’s apparently
241. 9:07under some kind of ban, that’s the
242. 9:09conclusion I’ve come to. So, that’s
243. 9:12pretty much the story. Wishing everyone
244. 9:15health and kindness, write to me,
245. 9:17let’s talk.