WEBVTT
1
00:00:03.640 –> 00:00:07.780
Here to support you, the Cornwall Cancer Cafe podcast.
2
00:00:08.460 –> 00:00:11.020
With me, Matthew Clarke and also
3
00:00:11.020 –> 00:00:12.520
With me, Emma Coombe
4
00:00:12.520 –> 00:00:16.860
Thanks to the National Lottery Community Fund for supporting this podcast.
5
00:00:17.020 –> 00:00:21.200
So here we are again, we’re doing the programme a little differently this week.
6
00:00:21.800 –> 00:00:26.260
We haven’t got a guest because we’ve got loads of things we want to chat about.
7
00:00:26.560 –> 00:00:31.800
Lots of different, I suppose, post-treatment things.
8
00:00:31.800 –> 00:00:39.560
Because I know a lot of people will still be in treatment or may not have even started treatment yet.
9
00:00:40.500 –> 00:00:46.600
But post-treatment is quite an interesting time, because once again, you ring that bell and you think,
10
00:00:47.240 –> 00:00:49.260
Oh, what’s happening next?
11
00:00:49.760 –> 00:00:54.460
Yes, and some people will think, oh, that’s it, all done and dusted.
12
00:00:54.840 –> 00:00:55.700
But is it?
13
00:00:56.120 –> 00:00:57.840
No, it definitely isn’t.
14
00:00:58.860 –> 00:01:03.680
So we are talking about things such as discharge.
15
00:01:04.019 –> 00:01:08.140
But first of all, you’ve recently been to a festival, haven’t you?
16
00:01:08.380 –> 00:01:13.440
I have. I’ve been to a festival and, yeah, it was all good fun, great.
17
00:01:13.880 –> 00:01:22.160
But obviously, as a post cancer sufferer, if that makes sense, I’ve got some limitations, some disabilities, if you like.
18
00:01:22.740 –> 00:01:27.560
And I looked into how I could get some, maybe get some extra help at the festival.
19
00:01:28.000 –> 00:01:31.480
And I discovered that there’s a thing called an access card.
20
00:01:31.600 –> 00:01:33.720
It’s run by a company called Nimbus.
21
00:01:34.260 –> 00:01:40.040
And if you’ve got a blue badge or if you’re in receipt of PIP, you can apply for this access card.
22
00:01:40.120 –> 00:01:42.700
It costs £15 and it lasts for three years.
23
00:01:43.200 –> 00:01:50.540
But it gives you the the tool, if you like, to have written down the needs that you have.
24
00:01:50.540 –> 00:01:56.840
So if you can’t walk very far, if you have problems in crowds or you might need to rest, or as a lot of us do,
25
00:01:56.860 –> 00:02:01.920
you need a plus one companion, someone that can be with you in case something happens.
26
00:02:01.920 –> 00:02:07.220
If you have a crash, you need to sit down or if you’ve got a physical disability,
27
00:02:07.240 –> 00:02:09.900
if you’ve got trouble walking or if you need some extra support.
28
00:02:10.380 –> 00:02:16.480
This card has a thing on it that says a plus one, which gives you a free ticket at a lot of festivals.
29
00:02:16.480 –> 00:02:21.740
Most of the Cornish festivals, you will get a free companion ticket with this card.
30
00:02:21.800 –> 00:02:23.120
So it’s well worth the £15.
31
00:02:23.740 –> 00:02:26.040
You do need to go online and apply for it.
32
00:02:26.280 –> 00:02:28.760
My application went through in about 24 hours.
33
00:02:28.840 –> 00:02:31.080
I’m just waiting for it to come through in the post.
34
00:02:31.460 –> 00:02:36.080
But the festival itself, I just showed them the email that I’d got the that I’d got the card.
35
00:02:36.380 –> 00:02:40.700
And they just gave me the accessibility wristband and were very, very helpful.
36
00:02:41.240 –> 00:02:41.720
Yeah.
37
00:02:42.200 –> 00:02:47.360
Now, the beauty of this podcast is you find out things like that, because quite honestly,
38
00:02:47.980 –> 00:02:51.240
I didn’t know, didn’t know at all about that.
39
00:02:51.280 –> 00:02:52.300
So thank you.
40
00:02:52.580 –> 00:02:56.200
Yeah, I didn’t know about it either, but I just thought I’m about to go to this festival.
41
00:02:56.640 –> 00:02:57.940
I’m feeling really fatigued.
42
00:02:57.940 –> 00:02:59.600
I wonder if there’s any help for me.
43
00:02:59.800 –> 00:03:04.540
When I dived down into the frequently asked questions and then kept diving and diving and diving,
44
00:03:04.820 –> 00:03:10.640
I found this access card and I thought, how many other things out there don’t we know about yet?
45
00:03:10.640 –> 00:03:12.200
That we could get help with?
46
00:03:12.700 –> 00:03:13.800
Well, exactly, exactly.
47
00:03:14.200 –> 00:03:23.160
And I was told by a friend about the disabled person’s rail card, which you can get if you’ve got a blue badge,
48
00:03:23.220 –> 00:03:24.600
which I didn’t know about.
49
00:03:24.640 –> 00:03:29.620
And actually, I’ve got a big train journey coming up, not too far in the future.
50
00:03:29.640 –> 00:03:32.260
I thought this is exactly what I need.
51
00:03:32.320 –> 00:03:34.440
So that’s another thing you can apply for.
52
00:03:34.840 –> 00:03:37.540
Yes, indeed. I’ve got a disabled person’s rail card.
53
00:03:37.540 –> 00:03:41.180
So that gives you a third off for you and your companion.
54
00:03:41.780 –> 00:03:43.860
So it’s another great savings.
55
00:03:44.740 –> 00:03:49.540
And it’s so much better to travel by train, I think, than by car, because I don’t know about you,
56
00:03:49.580 –> 00:03:52.320
Matthew, but if I drive a long distance, I’m shattered.
57
00:03:52.500 –> 00:03:55.600
It takes me one to maybe even three days to recover from it.
58
00:03:55.920 –> 00:03:59.840
Share this podcast on your social media so others may benefit.
59
00:03:59.840 –> 00:04:08.960
Now, one of the things that not too long ago, you were discharged from your treatment, weren’t you?
60
00:04:09.320 –> 00:04:13.100
I was. So I had the excitement of having a brand new treatment.
61
00:04:13.160 –> 00:04:19.940
So instead of an infusion, I had an injection, which was very exciting, although a little I felt a little bit of trepidation
62
00:04:19.940 –> 00:04:24.360
and also a little bit of like, oh, well, OK, this is a bit different.
63
00:04:24.380 –> 00:04:27.060
And then they said to me, do you want to ring the bell?
64
00:04:27.060 –> 00:04:31.280
And I looked around at me at the other people and other people having treatment,
65
00:04:31.300 –> 00:04:34.240
and I didn’t feel that I should ring the bell.
66
00:04:35.080 –> 00:04:36.900
So why was that? Why do you feel that?
67
00:04:36.920 –> 00:04:42.260
Well, I think I felt a little bit of guilt because I didn’t want to be ringing a bell and for them to be looking at me.
68
00:04:42.260 –> 00:04:45.920
And I said this to my nurse and he said, but it gives some people hope.
69
00:04:46.300 –> 00:04:50.460
And I thought, yes, but it might give some people hope, but it might upset some people.
70
00:04:50.480 –> 00:04:52.060
And I didn’t want to upset anybody.
71
00:04:52.060 –> 00:04:54.920
And I also felt like it might jinx me.
72
00:04:55.060 –> 00:04:57.180
So I chose not to ring the bell.
73
00:04:57.200 –> 00:05:02.420
But I’m now post treatment and the oncology team have discharged me back to dermatology
74
00:05:02.420 –> 00:05:06.560
because my cancer is melanoma, which started on my skin.
75
00:05:07.380 –> 00:05:10.160
However, my melanoma then moved into my lymph nodes.
76
00:05:10.340 –> 00:05:15.820
So I’m left thinking, well, if it’s in my lymph nodes, how are dermatology going to find it?
77
00:05:16.420 –> 00:05:21.460
But I will be having scans, CT scans every three months in the first year,
78
00:05:21.460 –> 00:05:29.120
which will give me that little bit of confidence, I suppose, that I know that it’s not come back.
79
00:05:29.520 –> 00:05:34.500
Because one of the questions I was going to, you sort of already answered my first question was,
80
00:05:34.660 –> 00:05:37.900
how does discharge affect you?
81
00:05:38.740 –> 00:05:44.940
It made me feel a little bit nervous because I thought, oh, I’ve lost the oncology team.
82
00:05:45.060 –> 00:05:50.060
They’re the guys that have been watching me so closely, a little bit too closely sometimes.
83
00:05:50.060 –> 00:05:53.400
When they say jump on the scales and you’re like, oh, do I have to?
84
00:05:54.020 –> 00:05:57.200
And they’re just monitoring whether anything big is happening.
85
00:05:57.320 –> 00:06:01.140
They take your bloods each time again to monitor is anything happening.
86
00:06:02.240 –> 00:06:07.120
And that’s just that closeness of monitoring has gone now after a year.
87
00:06:07.440 –> 00:06:10.740
But I’ve had a year’s worth of treatment, so I shouldn’t need it.
88
00:06:10.740 –> 00:06:11.780
I should be OK.
89
00:06:11.980 –> 00:06:15.160
But there’s still that bit of, oh, please don’t let me go.
90
00:06:15.600 –> 00:06:18.480
But you know, you do this and you’ve done it again.
91
00:06:18.480 –> 00:06:22.380
You’ve answered my second question that I was going to ask, sort of.
92
00:06:22.660 –> 00:06:30.760
Because my next question, what expectations did you have, you know, post-treatments?
93
00:06:30.960 –> 00:06:33.500
You know, and was there a sort of feeling of abandonment?
94
00:06:34.200 –> 00:06:35.340
Yeah, so I don’t…
95
00:06:37.920 –> 00:06:41.220
Expectations, I knew that I would be monitored.
96
00:06:42.140 –> 00:06:46.600
I knew that I was going to be discharged back to the dermatology team.
97
00:06:46.820 –> 00:06:47.640
And they’re great.
98
00:06:47.640 –> 00:06:49.640
I mean, I love that dermatology team.
99
00:06:49.820 –> 00:06:51.540
They looked after me so well last time.
100
00:06:51.720 –> 00:06:53.740
And I am looking forward to seeing them all again.
101
00:06:54.240 –> 00:06:59.860
And after my second lump popped up, they were so quick to put me back in the system
102
00:06:59.860 –> 00:07:00.780
and push me through it.
103
00:07:01.300 –> 00:07:03.180
And they’ve always been there in the background.
104
00:07:05.540 –> 00:07:07.640
So it’s great to be back to them.
105
00:07:08.120 –> 00:07:14.580
But I found that when I was discharged from treatments, you know, once that
106
00:07:14.580 –> 00:07:19.740
treatment had finished and you don’t have those regular visits, it’s almost because
107
00:07:19.740 –> 00:07:20.480
they sort of…
108
00:07:20.480 –> 00:07:25.260
Because you see them so often, they almost become your mates, don’t they?
109
00:07:25.340 –> 00:07:26.140
They’re your friends.
110
00:07:26.420 –> 00:07:27.380
Yeah, they do.
111
00:07:27.440 –> 00:07:32.380
I mean, the nurses in the headland unit, the nurse, I hope he won’t mind me mentioning
112
00:07:32.380 –> 00:07:35.900
his name, but there’s a nurse in there called James who I’d seen a couple of times.
113
00:07:36.220 –> 00:07:37.980
So I won’t see them again.
114
00:07:38.680 –> 00:07:41.700
The first time I went in there, they were getting themselves ready for a festival
115
00:07:41.700 –> 00:07:43.520
and they were talking about what they were going to be wearing.
116
00:07:43.520 –> 00:07:45.220
And they include you in the conversations.
117
00:07:45.740 –> 00:07:49.480
So they make you feel like you’re part of that team.
118
00:07:49.500 –> 00:07:53.140
But obviously, that team is there to do a job and a very important job.
119
00:07:54.040 –> 00:08:00.460
And they do it and more because they make you feel like you’re in a safe place
120
00:08:00.460 –> 00:08:02.300
and you’re part of their team.
121
00:08:04.100 –> 00:08:08.760
And this is the whole thing that so many people report about.
122
00:08:09.700 –> 00:08:11.240
They sort of feel…
123
00:08:11.240 –> 00:08:15.960
I mean, it’s not purposeful, but they sort of feel abandoned, don’t they?
124
00:08:16.220 –> 00:08:17.540
Because they don’t…
125
00:08:17.540 –> 00:08:23.160
And a lot of it is because you have so much routine that you have to go through
126
00:08:23.160 –> 00:08:24.460
during treatment.
127
00:08:24.720 –> 00:08:29.580
And once that routine finishes, it’s like, OK, so what now?
128
00:08:29.840 –> 00:08:32.360
Yeah, so you go through…
129
00:08:32.360 –> 00:08:35.640
So, like, I’ve gone through a year with lots of appointments coming in my diary.
130
00:08:35.640 –> 00:08:41.280
So, you know, the scans, the oncology, the headland and all the other tests
131
00:08:41.280 –> 00:08:43.620
and all of that, and it just fills your diary up.
132
00:08:43.840 –> 00:08:48.000
And now my diary is sort of like, oh, there’s nothing coming up.
133
00:08:48.240 –> 00:08:50.080
Well, there’s recording this podcast.
134
00:08:50.360 –> 00:08:51.900
That’s filled a little bit.
135
00:08:52.040 –> 00:08:54.780
Yeah, well, it gives you time back, which is great.
136
00:08:55.700 –> 00:08:58.880
But, yeah, I think the busyness, the…
137
00:08:58.880 –> 00:09:02.460
I think it’s because you’re made to feel so important.
138
00:09:02.460 –> 00:09:07.900
You’re the focus of their care, of their compassion.
139
00:09:08.560 –> 00:09:11.800
And you’re right, it is that sort of…
140
00:09:11.800 –> 00:09:13.700
They’re helping me. It’s about me.
141
00:09:14.200 –> 00:09:15.380
It is about me, yeah.
142
00:09:15.400 –> 00:09:17.140
And now I’ve been discharged.
143
00:09:17.940 –> 00:09:21.840
But by me being discharged, somebody else, there’s a gap for somebody else
144
00:09:21.840 –> 00:09:23.720
that desperately needs it.
145
00:09:24.540 –> 00:09:28.220
So, although you feel like you’ve been abandoned,
146
00:09:29.660 –> 00:09:32.440
actually, you shouldn’t feel like that, but you can’t help it
147
00:09:32.440 –> 00:09:34.340
You can’t help your feelings, can you?
148
00:09:34.680 –> 00:09:39.060
But also talking to other friends that I’ve met, other cancer people,
149
00:09:39.840 –> 00:09:41.500
and everybody feels the same.
150
00:09:41.520 –> 00:09:43.760
It’s not just me and you. We all feel the same.
151
00:09:43.780 –> 00:09:46.820
And I think it’s because the level of care we get in Cornwall
152
00:09:46.820 –> 00:09:48.340
is absolutely incredible.
153
00:09:48.500 –> 00:09:50.700
I mean, it’s one of, I believe, one of the best in the country.
154
00:09:50.860 –> 00:09:54.080
I think Trilisk is really up there with their council care.
155
00:09:54.740 –> 00:09:57.480
And I think because we’re so well cared for,
156
00:09:57.800 –> 00:10:02.380
when our journey comes to a turn in the road,
157
00:10:02.440 –> 00:10:05.500
it’s not the end because we’re still being looked after.
158
00:10:05.920 –> 00:10:07.760
But it’s OK, we’ve got to this.
159
00:10:07.840 –> 00:10:09.180
It’s like a train journey, isn’t it?
160
00:10:09.780 –> 00:10:12.980
We’ve done the main bit and we’re now at somewhere
161
00:10:12.980 –> 00:10:15.060
where we’re going to get off and then get on a different train
162
00:10:15.060 –> 00:10:18.660
because that different train is our new normal.
163
00:10:19.140 –> 00:10:22.160
So the old normal is finished and then we have to get on our new normal.
164
00:10:22.520 –> 00:10:28.400
And I suppose this is where the support from people like Macmillan,
165
00:10:28.500 –> 00:10:31.900
the Cove and other support groups comes in, doesn’t it?
166
00:10:32.440 –> 00:10:34.380
Yeah, I think so. And also this podcast,
167
00:10:34.460 –> 00:10:36.320
because, you know, we’re chatting about how we’re feeling.
168
00:10:36.400 –> 00:10:40.020
I’m sure somebody out there is going, oh, yeah, I felt exactly the same.
169
00:10:40.220 –> 00:10:43.740
You shouldn’t feel guilty about it because you’re allowed to feel how you feel.
170
00:10:43.760 –> 00:10:46.000
And it’s good to be able to speak up and say it.
171
00:10:46.000 –> 00:10:50.180
So these groups that we go to, the support groups that we access from the Cove
172
00:10:50.180 –> 00:10:55.100
and actually beyond the Cove, because I know like Potager, for example,
173
00:10:55.760 –> 00:10:59.120
we do this eight sessions at Potager.
174
00:10:59.120 –> 00:11:03.960
And now there’s like a break off group that’s that’s not run by anybody.
175
00:11:03.980 –> 00:11:09.460
It’s run by former Potager group, the Hope group that I was in.
176
00:11:09.700 –> 00:11:12.160
We’ve now arranged to go and meet for a coffee.
177
00:11:12.400 –> 00:11:16.000
So that’s not run by anybody apart from us as individuals.
178
00:11:16.440 –> 00:11:17.920
So and there are other support groups.
179
00:11:17.920 –> 00:11:20.360
I mean, there’s the lymphoma support group.
180
00:11:20.400 –> 00:11:22.760
Is there a melanoma support group in Cornwall?
181
00:11:23.000 –> 00:11:24.060
Not that I know of.
182
00:11:24.120 –> 00:11:28.920
I did speak to the the oncology team about that, because I said,
183
00:11:30.060 –> 00:11:34.520
you know, I’ve not met anybody on my journey that’s got the same cancer as me.
184
00:11:34.580 –> 00:11:39.260
Why? And it’s because I know they told me at the time when they diagnosed me,
185
00:11:39.540 –> 00:11:43.620
it’s very unusual of someone of my age and my colouring
186
00:11:43.620 –> 00:11:46.960
and my background and everything to get melanoma.
187
00:11:47.460 –> 00:11:51.780
It’s usually and forgive me for saying this, it’s usually much older gentlemen.
188
00:11:52.240 –> 00:11:55.200
And it’s usually because gentlemen lose their hair.
189
00:11:55.600 –> 00:11:56.500
They’re out in the sun.
190
00:11:56.500 –> 00:12:00.380
The sun gets the scalp and then they develop melanoma on their scalps.
191
00:12:01.060 –> 00:12:03.120
So that’s why I haven’t met many people.
192
00:12:03.260 –> 00:12:06.820
That’s why I haven’t met anybody because they’re all older gentlemen
193
00:12:06.820 –> 00:12:11.400
and older gentlemen tend not to access any help.
194
00:12:11.620 –> 00:12:12.680
They just sort of get on with it.
195
00:12:13.280 –> 00:12:16.620
That’s often a big challenge for anyone
196
00:12:17.280 –> 00:12:23.040
putting on support and help is getting the the gents involved.
197
00:12:23.040 –> 00:12:25.220
I hear it so often.
198
00:12:32.770 –> 00:12:35.770
OK, so you mentioned groups such as the potager.
199
00:12:35.910 –> 00:12:39.770
We’ve mentioned the Cove, who are giving that sort of level of support
200
00:12:39.770 –> 00:12:46.770
to make people feel that they’ve got ongoing help
201
00:12:46.770 –> 00:12:49.530
after treatment, after discharge.
202
00:12:49.850 –> 00:12:55.390
And it is so important because even when you talk to the psychology team,
203
00:12:55.870 –> 00:12:59.430
they say so much of the help
204
00:12:59.430 –> 00:13:02.610
they need to give people comes after treatment.
205
00:13:03.310 –> 00:13:04.270
Yeah, definitely.
206
00:13:04.470 –> 00:13:06.090
These groups are amazing, aren’t they?
207
00:13:06.690 –> 00:13:09.390
I mean, you’ve mentioned potager and the Cove put on this.
208
00:13:09.410 –> 00:13:13.330
There was a hope group, which is help overcoming something, something.
209
00:13:13.470 –> 00:13:16.190
I can never remember what the HOP stands for.
210
00:13:17.330 –> 00:13:21.610
It does include hope, but it’s not about hope, if that makes sense.
211
00:13:21.630 –> 00:13:23.610
And that’s actually a structured group.
212
00:13:24.030 –> 00:13:26.450
But there’s a Falmouth group, a Penzance group.
213
00:13:26.450 –> 00:13:29.570
There’s a there’s all sorts of groups out there that meet
214
00:13:30.690 –> 00:13:32.730
monthly or fortnightly.
215
00:13:32.970 –> 00:13:35.350
And in East Cornwall, we’ve got a whole lot of
216
00:13:36.830 –> 00:13:40.950
cancer cafes run by Carolyn Screech, and there’s a few others as well.
217
00:13:41.130 –> 00:13:44.730
I went to talk to one fairly recently in Bodmin.
218
00:13:45.050 –> 00:13:51.070
Visit our website www.cancercafepodcast.org
219
00:13:51.070 –> 00:13:56.010
So it’s Matthew and Emma on the Cornwall Cancer Cafe podcast
220
00:13:56.010 –> 00:14:01.150
and we are talking about a range of things about discharge.
221
00:14:01.790 –> 00:14:03.790
We are going to chat about a whole load of things.
222
00:14:03.830 –> 00:14:08.030
But we did talk earlier on about discharge and how does it affect you?
223
00:14:08.850 –> 00:14:11.490
I remember about just over a year ago.
224
00:14:12.950 –> 00:14:15.810
I was back on Lowenward,
225
00:14:16.250 –> 00:14:20.150
not with a relapse of cancer this time, but with pneumonia.
226
00:14:21.090 –> 00:14:24.650
And my immune system had fallen down to the floor.
227
00:14:24.650 –> 00:14:27.590
I was really blimmin’ ill.
228
00:14:28.190 –> 00:14:33.190
And eventually I was well enough to be discharged and sent home.
229
00:14:34.390 –> 00:14:39.630
I have to say I had a massive hit of anxiety at that message.
230
00:14:40.050 –> 00:14:43.850
Yes, I wanted to get home, but there was a whole lot of things
231
00:14:43.850 –> 00:14:46.910
I wasn’t sure whether I’d cope with when I got home.
232
00:14:46.990 –> 00:14:50.610
It was this whole can I cope when I get home?
233
00:14:50.910 –> 00:14:53.810
Will everything be clean enough for me
234
00:14:53.810 –> 00:14:56.470
not to get an infection?
235
00:14:56.790 –> 00:14:58.310
All those sorts of things.
236
00:14:58.710 –> 00:15:02.290
And that discharge isn’t necessarily an easy thing.
237
00:15:02.490 –> 00:15:05.850
And for myself and yourself living alone,
238
00:15:06.250 –> 00:15:09.730
you worry how you’re going to get on once you’re discharged.
239
00:15:10.510 –> 00:15:14.070
Yeah, I think I remember you coming out of hospital about a year ago
240
00:15:14.070 –> 00:15:16.910
because you were walking around with a face mask on all the time.
241
00:15:17.310 –> 00:15:19.830
And every person you met, you were checking to make sure
242
00:15:19.830 –> 00:15:21.810
if any of us had any infections or…
243
00:15:21.810 –> 00:15:23.010
Have you got an infection, Emma?
244
00:15:23.010 –> 00:15:24.710
No, well, I hope not.
245
00:15:25.990 –> 00:15:28.570
But you’re not in the same place, are you?
246
00:15:28.810 –> 00:15:31.750
But when I met you in the same place, yeah.
247
00:15:32.830 –> 00:15:37.390
Yeah, the face mask didn’t help with communication at all, did it?
248
00:15:37.730 –> 00:15:41.950
But I can just remember how you were really, you were very anxious.
249
00:15:42.470 –> 00:15:46.170
Yes, I’m still anxious, but not to the same degree.
250
00:15:46.510 –> 00:15:50.050
But actually, it has been quite a benefit in some ways,
251
00:15:50.050 –> 00:15:55.990
because I wore a face mask and dark glasses and a hat.
252
00:15:56.010 –> 00:15:59.250
And I could go into Tesco and stand right next to people I knew
253
00:15:59.250 –> 00:16:01.230
and they didn’t even know it was me.
254
00:16:02.490 –> 00:16:04.310
Well, let me tell you a little side story.
255
00:16:04.450 –> 00:16:05.970
It’s got nothing to do with this.
256
00:16:06.330 –> 00:16:08.370
But at the festival I was at recently,
257
00:16:09.990 –> 00:16:13.090
one of the days, my partner and I decided,
258
00:16:13.190 –> 00:16:15.130
well, they were doing a beard contest.
259
00:16:15.170 –> 00:16:16.790
So it was a fake beard day.
260
00:16:17.130 –> 00:16:18.690
Oh, I saw a great photo of you.
261
00:16:18.690 –> 00:16:20.050
You rocked it.
262
00:16:20.090 –> 00:16:22.610
So I was just going to explain what I looked like.
263
00:16:22.650 –> 00:16:24.190
I looked absolutely ridiculous.
264
00:16:24.410 –> 00:16:28.350
But because I was wearing a sun hat and I was wearing big sunglasses
265
00:16:28.350 –> 00:16:32.730
and I was wearing a fake beard, nobody knew who I was.
266
00:16:32.810 –> 00:16:34.330
It was absolutely hilarious.
267
00:16:34.710 –> 00:16:38.010
And I’ve got it as my Facebook photograph
268
00:16:38.010 –> 00:16:42.110
and I’ve got quite a lot of amusing comments on it,
269
00:16:42.110 –> 00:16:44.050
which is absolutely perfect.
270
00:16:45.850 –> 00:16:49.390
But it also encouraged people to come and talk to me.
271
00:16:49.950 –> 00:16:53.170
So why don’t people come and talk to you when you don’t look ridiculous?
272
00:16:54.290 –> 00:16:58.090
So I was going to ask you when you were all, you know,
273
00:16:58.210 –> 00:17:01.410
gowned up and everything, did anybody come up to you and say,
274
00:17:01.550 –> 00:17:02.850
why are you wearing a face mask?
275
00:17:02.930 –> 00:17:03.650
Are you OK?
276
00:17:04.050 –> 00:17:07.589
Well, I had I had someone in a petrol station shout at me,
277
00:17:07.589 –> 00:17:09.690
you know, those don’t work, don’t you, mate?
278
00:17:11.010 –> 00:17:12.390
Yeah, but that’s they don’t work.
279
00:17:12.390 –> 00:17:16.170
If you wear as a sling underneath your chin is what they don’t work.
280
00:17:16.730 –> 00:17:19.230
Honestly, during Covid, it was so frustrating, wasn’t it,
281
00:17:19.250 –> 00:17:21.349
when people weren’t wearing the masks correctly?
282
00:17:22.349 –> 00:17:24.130
But anyhow, that was a long time ago.
283
00:17:24.210 –> 00:17:25.790
We’re moving on from there, aren’t we?
284
00:17:25.990 –> 00:17:31.350
OK, so we’re talking about post-treatment, post-discharge.
285
00:17:32.710 –> 00:17:35.670
And I suppose once you’re out of treatments
286
00:17:35.670 –> 00:17:39.650
and you have those sort of support circles, hopefully,
287
00:17:39.650 –> 00:17:44.770
or you go into the cove to get your support or you join up something.
288
00:17:44.970 –> 00:17:48.810
For men, there is a group called Can Sir, which is great.
289
00:17:49.370 –> 00:17:51.190
You need to book those events.
290
00:17:51.570 –> 00:17:53.990
If you want to see what events are on,
291
00:17:54.050 –> 00:17:57.910
you can go to the diary page on cancercafe.org.
292
00:17:58.730 –> 00:18:01.710
And there’s a whole lot of different support groups
293
00:18:01.710 –> 00:18:04.830
and meetings and events you can go to.
294
00:18:04.850 –> 00:18:07.270
But you have to sign up to quite a few of those.
295
00:18:07.270 –> 00:18:12.850
So, you know, you sign up through emailing or phoning the cove.
296
00:18:13.050 –> 00:18:16.910
But it is a club that no one wants to be a member of
297
00:18:16.910 –> 00:18:21.350
once you start going around some of those circles.
298
00:18:21.910 –> 00:18:25.350
It is, as you say, the club that no one wants to be a member of.
299
00:18:25.790 –> 00:18:28.010
But there’s so much going on at the cove.
300
00:18:28.370 –> 00:18:32.330
It’s almost a club that you’re given so many opportunities to do so many things.
301
00:18:32.490 –> 00:18:35.670
I mean, you saying about sign up for things I’ve signed up for,
302
00:18:35.670 –> 00:18:39.370
or rather, I should say I have been signed up for the cold water swimming in September.
303
00:18:39.590 –> 00:18:41.290
Oh, yes, I’m going to film you doing that.
304
00:18:41.310 –> 00:18:45.370
Yeah, yeah. So please, anybody out there that fancies some cold water swimming,
305
00:18:45.610 –> 00:18:48.250
do join me, because I don’t want to be the only one
306
00:18:48.250 –> 00:18:51.250
dancing around in the cold water going, oh, it’s freezing cold.
307
00:18:51.450 –> 00:18:52.950
I don’t want to be here.
308
00:18:53.270 –> 00:18:55.510
Why am I here? Why am I doing this?
309
00:18:55.710 –> 00:18:57.490
I’m sure I’m going to love it, maybe.
310
00:18:57.490 –> 00:18:59.290
I don’t know. Let’s find out.
311
00:19:00.010 –> 00:19:03.790
So what other things help you post-treatment?
312
00:19:04.770 –> 00:19:08.130
So my partner has been very, very understanding.
313
00:19:08.750 –> 00:19:11.230
I’ve had to have some very
314
00:19:13.070 –> 00:19:15.410
honest and open conversations with him,
315
00:19:15.730 –> 00:19:17.690
which I know a lot of people find difficult.
316
00:19:18.110 –> 00:19:21.470
And I’d suggest you try and do this with your partner.
317
00:19:21.810 –> 00:19:25.430
But before you do it, have a think about what you want to say
318
00:19:25.430 –> 00:19:29.810
and maybe write yourself a little list and then sit down with with your partner
319
00:19:29.810 –> 00:19:32.790
or your your son or your daughter or your mum or your dad or your dog.
320
00:19:33.450 –> 00:19:35.950
Well, OK, or your dog or your cat.
321
00:19:36.530 –> 00:19:40.310
Yeah, the cat’s not really helpful, but not in this.
322
00:19:40.670 –> 00:19:43.130
But if there’s one or two bits that you want to talk about,
323
00:19:43.250 –> 00:19:46.470
you know, they might be very personal bits or they might be how you’re feeling
324
00:19:46.470 –> 00:19:49.330
or they might be how that person makes you feel.
325
00:19:49.750 –> 00:19:52.410
Write it down and then sit them down and say,
326
00:19:52.430 –> 00:19:55.350
I need to have a conversation with you and let me get these points
327
00:19:55.350 –> 00:20:00.470
over to them to you and say them and then have a conversation around them.
328
00:20:00.470 –> 00:20:05.430
Because I think we as human beings try not to upset people.
329
00:20:06.250 –> 00:20:10.170
But I think our family and friends probably don’t necessarily
330
00:20:10.170 –> 00:20:13.150
know what we’re feeling and what we want to say.
331
00:20:13.970 –> 00:20:17.970
So that’s my that’s my tip of the week is to write it down
332
00:20:17.970 –> 00:20:20.870
and then say, I need to have a conversation with you
333
00:20:20.870 –> 00:20:24.070
and make it very clear that you need to get these points over to them.
334
00:20:24.190 –> 00:20:26.670
And you can let them see what you’ve written down if you want to,
335
00:20:26.670 –> 00:20:30.430
because that might help them think about what they can do to help you.
336
00:20:30.470 –> 00:20:34.190
I found it quite challenging to
337
00:20:36.790 –> 00:20:41.090
manage not only my expectations post treatment,
338
00:20:41.910 –> 00:20:45.970
but manage the expectations of my friends and my family.
339
00:20:46.730 –> 00:20:50.410
Yeah, similar with friends and family.
340
00:20:50.630 –> 00:20:53.390
So some friends, some friends, they absolutely want to be there
341
00:20:53.390 –> 00:20:55.130
and do their best for you.
342
00:20:56.030 –> 00:20:59.870
But they perhaps don’t get it right, but you have to forgive them.
343
00:20:59.870 –> 00:21:04.910
So I have found that I have adopted a
344
00:21:04.910 –> 00:21:06.590
I can see where you’re coming from.
345
00:21:06.650 –> 00:21:09.990
I’m just going to forgive those comments because I know where you’re coming from.
346
00:21:11.190 –> 00:21:13.270
And, you know, they’re coming from the right place.
347
00:21:13.330 –> 00:21:17.430
And sometimes you have to step outside the fact that you’re living with cancer.
348
00:21:17.930 –> 00:21:21.610
Sometimes you just have to think they’re just seeing me as me.
349
00:21:21.650 –> 00:21:25.130
They’re not seeing me with cancer, whereas I see myself with cancer.
350
00:21:25.410 –> 00:21:28.950
And I need to sort of you almost have to step sideways and look at yourself
351
00:21:28.950 –> 00:21:31.610
as just as you. How do you find?
352
00:21:31.610 –> 00:21:35.310
Well, my challenge, I find, is
353
00:21:35.310 –> 00:21:40.150
my expectations of my recovery path,
354
00:21:40.390 –> 00:21:43.090
which has been a long and traumatic one.
355
00:21:45.330 –> 00:21:47.790
And but also, I think
356
00:21:48.770 –> 00:21:51.030
friends once again, it’s this whole thing.
357
00:21:51.250 –> 00:21:55.310
Ring the bell. OK, is back to normal, back to what he used to be.
358
00:21:55.310 –> 00:21:56.310
And it’s that’s the thing.
359
00:21:56.530 –> 00:22:00.490
People expect you to be back to what you used to be.
360
00:22:00.490 –> 00:22:03.630
And I think that’s a big challenging thing.
361
00:22:03.710 –> 00:22:04.570
Post-treatment.
362
00:22:04.910 –> 00:22:08.010
It is because once you’ve had that diagnosis,
363
00:22:08.690 –> 00:22:11.070
the old you has gone forever. It’s a new you.
364
00:22:12.090 –> 00:22:17.190
So at the potager group recently, there was a new a new lady turned up.
365
00:22:17.450 –> 00:22:19.230
She was newly diagnosed.
366
00:22:19.290 –> 00:22:21.470
She got quite a new scar.
367
00:22:21.950 –> 00:22:25.030
And she you could tell in her eyes that she was she was.
368
00:22:25.470 –> 00:22:27.490
I don’t know what to do. I don’t know where I am.
369
00:22:27.510 –> 00:22:27.950
I don’t know.
370
00:22:28.270 –> 00:22:30.690
So I just started chatting with her and said, you know,
371
00:22:30.770 –> 00:22:33.470
once you’ve had that diagnosis, the old you is the old you.
372
00:22:33.490 –> 00:22:35.450
And this is the new you, isn’t it?
373
00:22:35.690 –> 00:22:37.710
This is the new you going through a new journey.
374
00:22:38.010 –> 00:22:41.570
And I could see her shoulder start to drop as I was talking to her.
375
00:22:42.290 –> 00:22:44.350
And she started talking to me.
376
00:22:44.370 –> 00:22:46.790
And I could just see, you know, her whole
377
00:22:47.730 –> 00:22:49.370
was it called countenance?
378
00:22:49.370 –> 00:22:51.470
Yes, countenance. That’s a good word.
379
00:22:51.530 –> 00:22:53.730
Countenance. Word of the day. Countenance.
380
00:22:53.850 –> 00:22:56.730
I could see her whole countenance starting to relax.
381
00:22:57.110 –> 00:22:59.610
And I thought this was me 12 months ago.
382
00:23:00.190 –> 00:23:03.750
So it’s so, so important, I think, to be there
383
00:23:03.750 –> 00:23:07.810
as a as a discharged person, to be there for someone
384
00:23:07.810 –> 00:23:10.330
newly diagnosed as well.
385
00:23:10.570 –> 00:23:12.950
So the groups are really, really important.
386
00:23:13.290 –> 00:23:15.650
But yes, friends, once you’ve done the right.
387
00:23:15.770 –> 00:23:18.790
I finished my treatment and they expect you to be the old you.
388
00:23:18.790 –> 00:23:20.050
The old you’s gone forever.
389
00:23:20.270 –> 00:23:21.390
But there’s a new you.
390
00:23:21.870 –> 00:23:26.710
And if your friends are proper friends, they’ll see that there’s a new you.
391
00:23:26.970 –> 00:23:30.590
They’ll probably recognise it and embrace you and go with it.
392
00:23:30.690 –> 00:23:32.850
But even if they don’t, you know, if they’re still friends
393
00:23:32.850 –> 00:23:35.730
and they’re still there, yeah, take them on the journey with you.
394
00:23:37.110 –> 00:23:38.090
Brilliant advice.
395
00:23:38.410 –> 00:23:41.930
So you’re listening to the Cornwall Cancer Cafe podcast.
396
00:23:42.030 –> 00:23:46.990
And we are talking about post treatment discharge
397
00:23:46.990 –> 00:23:50.990
and the sort of things that go through a lot of people’s minds.
398
00:23:50.990 –> 00:23:56.390
It’s important at this stage to say that we aren’t trained psychologists.
399
00:23:56.630 –> 00:23:57.930
We’re not counsellors.
400
00:23:58.210 –> 00:23:59.430
We’re not doctors.
401
00:23:59.930 –> 00:24:03.850
We’re not consultants or anything like that.
402
00:24:03.850 –> 00:24:09.770
We are people with lived experience of having a cancer diagnosis.
403
00:24:10.270 –> 00:24:15.370
And basically, we are here to have a chat about some of these things
404
00:24:15.370 –> 00:24:17.730
and give you a big hug.
405
00:24:17.790 –> 00:24:18.610
Isn’t that right?
406
00:24:18.870 –> 00:24:21.850
Yeah, big hugs, because when you give a hug, you get a hug.
407
00:24:22.270 –> 00:24:23.910
That’s your catchphrase.
408
00:24:24.350 –> 00:24:25.510
Let’s do it again. Let’s do it again.
409
00:24:25.650 –> 00:24:27.110
And to give you a big hug.
410
00:24:27.490 –> 00:24:30.230
Yeah, big hugs, because when you give a hug, you get a hug.
411
00:24:30.450 –> 00:24:32.550
I might clip that and use that somewhere.
412
00:24:33.050 –> 00:24:39.070
Anyway, so we are now having a quick talk about upcoming podcasts.
413
00:24:39.350 –> 00:24:41.390
We’ve got coming up soon.
414
00:24:41.570 –> 00:24:44.730
We’ve got a podcast fairly soon.
415
00:24:45.250 –> 00:24:49.030
With Look Good, Feel Better, which I’ve been on, of course.
416
00:24:49.030 –> 00:24:50.050
And you’ve been on the course.
417
00:24:50.250 –> 00:24:50.850
I have, yeah.
418
00:24:50.850 –> 00:24:53.730
And we must mention Look Good, Feel Good is…
419
00:24:53.730 –> 00:24:54.590
Look Good, Feel Better.
420
00:24:54.610 –> 00:24:55.030
Oh, sorry.
421
00:24:55.350 –> 00:24:56.170
Look Better, Feel Good.
422
00:24:56.270 –> 00:24:56.610
Yeah.
423
00:24:56.750 –> 00:24:59.990
Look, yes, just has to feel amazing after an hour.
424
00:25:00.730 –> 00:25:03.370
But they do they do sessions, but they do a session for women
425
00:25:03.370 –> 00:25:04.890
and a session for men, don’t they?
426
00:25:05.250 –> 00:25:05.810
They do.
427
00:25:06.090 –> 00:25:09.150
And there are a few different things to talk about.
428
00:25:09.610 –> 00:25:11.910
So men, particularly with shaving.
429
00:25:12.630 –> 00:25:16.430
Well, yes, but some women shave as well, as we know, you know,
430
00:25:16.610 –> 00:25:18.070
ladies lose their hair in treatment.
431
00:25:18.670 –> 00:25:19.550
So actually…
432
00:25:19.550 –> 00:25:20.330
Men lose their hair in treatment.
433
00:25:20.370 –> 00:25:21.030
Well, men and women.
434
00:25:21.310 –> 00:25:21.330
Yeah.
435
00:25:21.910 –> 00:25:25.390
So shaving actually, I think, should be included in the ladies, but it’s not.
436
00:25:25.410 –> 00:25:26.430
It’s all about makeup.
437
00:25:27.110 –> 00:25:30.270
And but I think men, they do concentrate on the shaving, don’t they?
438
00:25:30.270 –> 00:25:36.470
I was really worried about shaving because when I was neutropenic several times,
439
00:25:36.750 –> 00:25:40.610
you know, you could easily get a very bad infection
440
00:25:41.390 –> 00:25:42.710
by cutting yourself.
441
00:25:43.170 –> 00:25:47.670
And so I tried to do as much of my shaving with an old with
442
00:25:47.670 –> 00:25:51.470
a electric shaver rather than a blade.
443
00:25:52.510 –> 00:25:54.530
Oh, I don’t really know much about that.
444
00:25:54.550 –> 00:25:56.190
Did you use Old Spice afterwards?
445
00:25:56.210 –> 00:25:56.970
Slap it on.
446
00:25:58.150 –> 00:26:00.370
That’s a bit 1970s, isn’t it?
447
00:26:00.450 –> 00:26:01.990
It is, isn’t it?
448
00:26:03.870 –> 00:26:08.390
Anyway, so those are examples of upcoming podcasts.
449
00:26:08.390 –> 00:26:12.370
And we also want to get you as a listener
450
00:26:12.370 –> 00:26:16.490
involved by helping us get some feedback.
451
00:26:17.010 –> 00:26:21.750
So fairly soon I will be contacting some people to just tell us
452
00:26:21.750 –> 00:26:25.870
how we’re doing and ask for some thoughts, because it’s important
453
00:26:25.870 –> 00:26:28.650
to develop this project into the future, isn’t it?
454
00:26:28.990 –> 00:26:29.730
It is, yeah.
455
00:26:29.790 –> 00:26:30.790
What are we doing right?
456
00:26:30.890 –> 00:26:31.890
What could we do better?
457
00:26:32.030 –> 00:26:33.810
Is there something you want to hear about?
458
00:26:34.090 –> 00:26:35.470
All those sorts of questions.
459
00:26:36.070 –> 00:26:36.450
OK.
460
00:26:36.450 –> 00:26:42.010
So it’s been Emma and Matthew talking about post-treatment and discharge.
461
00:26:42.010 –> 00:26:45.430
And I’m sure it’s not the last time we’ll talk about that.
462
00:26:45.450 –> 00:26:50.830
But it’s almost time to switch off the recorder, go and lie down
463
00:26:50.830 –> 00:26:55.810
in a darkened room and, you know, because I get quite tired.
464
00:26:55.910 –> 00:26:57.310
Yeah, let’s do some well-being.
465
00:26:57.450 –> 00:27:00.830
Let’s do some some nice deep breathing.
466
00:27:01.030 –> 00:27:02.790
And yeah, let’s go into that zone.
467
00:27:02.790 –> 00:27:09.350
My final thought on well-being today is the fact that the other day
468
00:27:09.350 –> 00:27:12.130
I did go and see my support donkey.
469
00:27:17.810 –> 00:27:21.110
OK, I’m sorry, I was a little bit speechless for a moment then.
470
00:27:21.610 –> 00:27:24.270
But is that the where’s that at Flickr or at Travaskis?
471
00:27:24.490 –> 00:27:27.130
Well, that’s at Travaskis Farm, because that’s nearer me.
472
00:27:27.410 –> 00:27:29.850
There’s two donkeys which I go and feed.
473
00:27:30.170 –> 00:27:31.930
And I love donkeys.
474
00:27:32.530 –> 00:27:34.390
Yeah, they are. They’re lovely, lovely creatures.
475
00:27:34.390 –> 00:27:38.470
They love they love people, but they love being in groups as well, don’t they?
476
00:27:38.490 –> 00:27:39.190
They’re so friendly.
477
00:27:39.710 –> 00:27:42.930
And when I was on loan, there was a support dog came round.
478
00:27:43.170 –> 00:27:45.510
Support. Yeah, I had a support dog when I stayed.
479
00:27:45.910 –> 00:27:47.690
I stayed overnight after my operation.
480
00:27:47.770 –> 00:27:48.890
I didn’t want to give it back.
481
00:27:49.830 –> 00:27:53.250
Well, you have to. You can’t abduct a support dog.
482
00:27:53.470 –> 00:27:56.130
No, I know. But I could have like hidden it underneath the bed covers.
483
00:27:56.130 –> 00:27:57.550
But the owner saw me.
484
00:27:57.610 –> 00:28:00.210
I think someone would have spotted it at some point.
485
00:28:00.810 –> 00:28:02.290
Anyway, thank you, Emma.
486
00:28:02.290 –> 00:28:05.450
And Emma and myself will be back again.
487
00:28:05.730 –> 00:28:10.370
So make sure you listen again and check out what’s on the website
488
00:28:10.370 –> 00:28:13.370
and tell other people as well.
489
00:28:14.210 –> 00:28:16.570
So, yeah, talk to other people who might benefit.
490
00:28:16.730 –> 00:28:18.550
Maybe they are in treatment.
491
00:28:18.730 –> 00:28:20.530
Maybe they’ve just been diagnosed.
492
00:28:21.010 –> 00:28:26.690
Maybe they are post treatment as well, or they might be a carer or
493
00:28:26.690 –> 00:28:29.550
or family and friends, family and friends.
494
00:28:29.570 –> 00:28:31.330
Yes, because they can learn a lot about
495
00:28:31.330 –> 00:28:33.810
what you’re experiencing.
496
00:28:34.310 –> 00:28:36.670
So we will be back next week.
497
00:28:36.870 –> 00:28:38.310
Goodbye. Goodbye.
498
00:28:42.460 –> 00:28:45.900
Here to support you, the Cornwall Cancer Cafe podcast.
499
00:28:46.680 –> 00:28:50.700
Thanks to the National Lottery Community Fund for supporting this podcast.