So mad the minute you bring up your problem every one shuts off š”š”I get more support from the cat š±
Tad pissed off . Why do people shut o... - The Roy Castle Lu...
Tad pissed off . Why do people shut off from you when your the one with the problem
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Kalilou2
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25 Replies
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RoyCastleHelplinePartnerAsk the NurseRoy Castle
Dear Kalilou2
So sorry to hear that you have had that response and can understand your anger and hurt, there is plenty of support here for you. If you need to chat to anyone you can call us on our Freephone nurse led helpline number on 0800 358 7200.
Thinking of you.
The Roy Castle Support Team
As a carer for my wife (who has nsclc stage 4) I can really sympathise with what you are saying. People can feel scared and awkward and don't know what to say. Many visibly shut down, or back away. It can seem that some people think the person is contagious in some way and that they will "catch" lung cancer simply by being near them. I suppose in some ways it is a natural fear response. I am also finding that most people are poorly informed about cancer generally. There is definitely a "don't know and don't want to know" attitude, even though people want to appear concerned and empathetic. We have had people clearly wanting to end the conversation about the disease with things like " Well, the treatment's doing you good, so it'll all be OK, won't it?" Or " So, you're on the mend then." Then, of course, to be polite we will reply "Yes, of course. We soldier on."
Take heart though. We are all supported by fellow sufferers and carers as well as many dedicated people who do really care. Also, I feel certain that all of us writing here will relate to what you are feeling.
Thatās exactly how it is. When I was stage 3b nsclc diagnosed on the 10 /12/18 my attitude was well Iāve got it now I need to try and sort it which is what I did I didnāt take anyone to chemo but made a good friend. Itās just annoying that they switch off. Sorry about your wife is she doing ok ? Xx
Quite agree with what you say Kalilou2. Just pleased to have this website knowing it is read by people in the same boat. Everyone says try to stay positive and most of the time I can but I have my moments and I must say I a m heartily sick of thinking about it! It has taken over my life. Anyone else feel like that?
I know how you feel. I get up everyday and try and make it the last thing I think about but it is hard. At the money Iām 8months ok after chemo radio. I never bother anyone with it but the minute I do itās change the subject.
At least we have each other on here. šā¤ļø
I am sorry to hear that this is your experience. On this forum we care and a problem shared and all that...
The RCLCF and McMillan offer support. There is a psychologist with whom people can meet at our local hospice and you may find it is the same at yours.
I donāt think its that people donāt care but rather that they simply may not know what to say or do and of course the recent campaign āFollow My Leadā was about this. I wonder whether it would help if you spoke to your family and friends and explained how you would like them to support you? They may well be worrying because they just donāt know what to say or do.
Sending a big hug š¤, positive thoughts and best wishes š»šŗš¼x
Thank you šitās hard all round I think itās just a bit crap the min you open your mouth itās shut straight away. I know they donāt mean it. Itās good we have this site x
It is indeed. I know we sometimes want to protect our nearest and dearest too but the reality is that there are some things that must be talked about, however hard it may be to speak about such things or listen. You must feel very frustrated. Do you think writing to them would help as they canāt interrupt a letter and may then better appreciate how they are making you feel? Bottling things up will only increase the amount of strain you are under so it would be good to find a way forward that helps you. I am so sorry that you are dealing with this challenge on top of your illness. x
Tbh if it doesnāt effect them they gave no idea but looking at the replies Iām not alone. My daughter is 14 and she thinks every change or feeling is cancer. I tell her itās not but a young mind can hurt.
I tell herlive for today look forward to tomorrow and Iām going ok so far.
I see people on here who a far worse than me and I send you all my love xx
It sounds like you are doing well post treatment which is great but it is understandable that you worry and would like to be able to talk about it.
I have nsclc with bone mets and the prognosis for that is generally in the region of 3 to 9 months. I was diagnosed in Feb 2016 so am fortunate to be so far into āborrowed timeā. It is still the first thing that comes into my mind when I wake up. No doubt others are the same. I often dream about being well and able to do all the things I used to then wake up to the reality of being terminally ill and the limitations imposed by my illness. it is like reliving the day I was given that news all over again. It is always there but I try to make the most of what I can still do and do and not dwell too much on what I canāt or the plans I had made for the future which are unlikely to find fruition.
It is understandable that your daughter worries too and it may be that she would benefit from some professional counseling. My son had some sessions with the counseling psychologist at our local Hospice which were beneficial and she encouraged him to express himself through art, which seemed therapeutic.
I hope you continue to do well post treatment. š¼šŗ x
Have you tried canabis oil? I was originally thought to be stage 4 I was very lucky the lesion on my liver was benign so it took me a stage back. I canāt imagine how or anyone else in this position must be feeling. Iām in a group called.
Cbd consumer group UK/EU ask admin to join you can get really good advice on cbd suppliments.
Iāve also heard Turmeric and Garlic is good too .. šā¤ļø
I didn't tell many people at all in the beginning as couldn't face their questions. The few I did tell reacted differently - one in particular was a great help as he'd had stomach cancer at a similar age and was so supportive. A couple of close friends were also extremely supportive but since my diagnosis both have lost their mums to lung cancer (unexpectedly) and another lost her husband - so raising funds in his memory brought me into contact with Roy Castle charity and then my subsequently involvement in lung cancer research. Although I have had several hospital stays and investigations in the years since my lobectomy in Dec 2010, I tend to downplay them as am only too conscious that they lost loved ones to the condition. I have found support though in other patient advocates involved in research and we all tend to support one another through difficult times. Is there a patient support group near you that you could join? I'm eternally grateful to have made some wonderful friendships and met some fantastic people that I would never have come into contact with without my diagnosis. hope you can find some support even if from previously unknown quarters soon. good luck.
I have my boss whoās been great and will talk to me about it. My mum as well as some others say your doing great itās still a black cloud but we are still here and some of us have it worse than others.
To read others stories make me realise that. Xxšā¤ļø
Really glad the lesion on your liver was benign. Thank you for the above info. Have two friends with brain tumours who both use cannabis oil and find it beneficial. In addition to my meds I take turmeric with black pepper, fish oils, platinum salvestrols and garlic. I drink mainly filtered water or herbal tea and try to eat a reasonably healthy diet - mainly fresh fruit and vegetables, nuts, fish and home made granola. I have organic food where possible. I am no angel though and enjoy a glass or two of wine when I go out for meals and am somewhat of a chocoholic! š Mind you no point trying to keep alive then not living! x
Thatās the way to be. Although Iāve not much of a sweet tooth.
The wine though Iām not letting that go itās my only vice apart from my oil xx šā¤ļø
Hi I have had 2 instances of this in the last week. My husband has advanced SCLC and the hospital has stopped treatment due to side effects. So a neighbour who I told this to then talked to me ignoring my husband and couldnt even look at him. Then a friend says she didnt want to see him as it might upset her. Luckily the majority of our friends and neighbours are a great support.
Good luck to you and have a good Christmas.
It is sad really. Has your husband triedcannabis oil Iāve had it now for nearly 12 months Iām stage 3 but I recommend It to all cancer patients x also garlic and turmeric x
Thank you Kalilou2 for your comments. My husband is quite frail physically and it really gets him down. I did wonder about cbd oil but not sure where to get info on it. Do we need to clear it with the consultant before taking it?
I just took it tbh when I thought I was stage for I thought I had nothing else to lose so I took it. Although when I was on chemo I didnāt take it as I wouldnāt know what was working but I took some when I had radio to relieve some symptoms which really helped.
I still take it every day now x
Thanks. What strength do you take and how much? Where do you get it from?
You can get cbd brothers and ask if thereās a chance to get it with THC.
Thereās a site on Facebook
Consumercbd uk eu they are good for advice.
Iāve just got some black gold black seed oil which has cancer fighting properties. Look that up.
Thank you.
