What has your experience been of nurs... - The Roy Castle Lu...
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I am in contact with two lung cancer nurse specialists. One at the hospital that I attend. I have her phone number and can phone her as needed. There is also a lung cancer nurse specialist at my local hospital, which I do not attend but he phones me once a month and encourages me to contact him if I need too.
I have had nothing but fantastic nursing care in all the different areas that I've had go through. From the ICU and chemo nurses 4 years ago to the chemo and great radiotherapy team this year. Also the LCN that I have, Liz, is second to none, always cheery and helpful at all times.
I just wish I didn't have had the pleasure of all these lovely people, if you get my point..
Rab.
Not really sure who my lung cancer nurse specialist is. At my first oncology appointment there were two nurses there who I thought were Macmillan. I was told they would ring me to talk me through the bronchoscopy which I was really frightened about, nobody rang. I have tried a couple if times to ring them & only got an a as machine. I believe I left a message nice, but got no reply. I kind of got the feeling that as I have refused orthodox treatment I am of no interest to anybody.
I had to ring the hospital recently to try & find out about a drug trial. I spoke with a nurse manager whatever they are called, who insisted I had an appointment with oncologist to discuss drug trials & to make sure I have enough support at home. I found that more upsetting than anything else & nobody made any enquiries into the support I am getting-none.
I went from fast track to palliative with nothing in between. I was seeing my GP on a monthly basis until we both decided that we were wasting each other's time, as it just seemed to involve him saying how well I was looking & to go back if I needed anything.
So, have to speak as I find, pretty poor if not to say non existent. Again I feel that this is to do with refusing chemo.
Think perhaps I am living in the wrong part if the country to be suffering with cancer.
Laura.
Hi Laura It was interesting to read your post your experience sounds relatively close to my experience.the day I saw my oncologist I was told that after my surgery I would be given a mop up off chemo that would give me an x tra 5% better chance that my cancer would not return if the cancer however returned I would then be on palatine care as you can imagine I was terrified given the 5% was I ready to opt for chemo filling my body full off poison what we're my options could I not help my immune system myself with the right nutrients to help it on its way and fight off any lose cells that may have gone astray after my surgery I tried to voice my opinions on this subject to my oncologist I was given a very frosty reply chemo was my best chance aI was left feeling if I didn't play ball then I wouldn't be supported needless to say I went along and had the chemo it was out off fear that was all the point I really am making is I am not knocking chemo or any other cancer treatment but at the same time I think whatever you decide to do you should still have support from the medical profession of which I felt let me down kind regards
Our experience was mixed. I thought that after a year, my feelings of frustration would ease, and they have a little, but I feel sad for anyone else in a similar position.
There were 2 LCNS in our hospital. One (who was in charge) said lots of positive things and promised to do things but took a long time to get around to it, the other was less communicative but much more supportive and did everything she promised and followed up and liaised. (Unfortunately, she left not long after our journey ended, so I don't know if she was replaced )
We met another LCNS at a different hospital in London (on a second opinion) who was phenomenal, even though we weren't their patients. (They called our GP, cut through red tape, sorted out some effective pain relief after weeks of frustration trying to get help from the other LCNS.) It showed me how things should be. We were new to hospitals and drugs, and side effects, and cancer, and the way the system worked. The first LCNS did eventually call our GP on some issues, but it took a lot of chasing. I kept being sent to other places for letters or equipment, and in the end then it usually turned out she was the one to facilitate. We could never get through on the phone, always had to leave a message and often had to wait until the following day for any response. (You can't wait and do nothing when someone is suffering - it was an extremely confusing and upsetting time between diagnosis and treatment which was a long time in our case). We raised the phone issue formally in a Macmillan survey and they did put someone on the phones - I don't know if that has improved things as I am no longer in contact with them.
Why didn't the first LCNS help us earlier on (and cut through red tape that took up all our energy)? I don't know if it was a lack of training, or ignorance, or being overwhelmed by workload, or lack of interest or incompetence, but it meant we lost a lot of time we didn't have to lose. I do acknowledge that she was helpful and supportive later on during hospital admissions and A&E, so I suspect it may have a case of heavy workload and prioritising patients who were more ill.
I found it hard to raise issues at the time as I was aware that in order to get help in an unpredictable situation, we had to be on the right side of the people with the power to help, and as a patient or relative we felt extremely vulnerable. I hope this is just my impression.
There were some incredible people in all areas who helped us (often despite the system). I think the risk is that the LCNS role depends hugely on the personality, willingness and competence of the nurse in the role. It didn't seem that anyone reviewed what they did.
Anyway, for anyone out there with battles at the moment, the LCNS should have the power to help. If there is a choice, work out who will get things done. They can be incredibly helpful. All the best Kx
Such wonderful support.
I had no contact with LCNS until I had had surgery, had all but recovered from that and I met her at chemo clinic ,which was a disaster for all of us .I was alone confronted by a consultant ,a registrar and LCNS,i didn,t think I required chemo ,I was not receptive to the news that I did and I was confronted by 3 strangers alone .handed the chemo booklets and felt angry and vulnerable .So it did not go well .I desperately needed contact before and after surgery this was not available to me,as was as no written information about my planned surgery or advice on physio exercises as the days progressed at home post op .
I am a nurse and really was horrified at the lack of support at home post op ,it is difficult scarey surgery to recover from ,I could have tried harder to get help but at this point was in a pit of despair and was inclined not to bother .
Since then I have had the awful chemo( once I had seen my histology results ) I now have contact with the LCNS's who have been very helpful , I understand that there had been a shortage of LCNS in Plymouth and I understand that the nhs is a stretched service .I did use the mcmillan mustard tree which had been fantastic support and I used the mcmillan call line in the early days and I found this site by purusing the internet and have used this forum regularly which has also been very helpful ,just been able to talk to people in the same situation as me has been useful and reaassuring.
I would not hesitate to call my LCNS for any future advice ,now I am in contact with her, but obviously only if necessary as the NHS services really are stretched and I know we are lucky to still have an NHS.
Hope this helps Diane
