Do you experience cancer-related pain or support someone in pain?

I would be very interested in joining this advisory group. I would really like to contribute to help others in the future, in any way I can, through my experiences.

I'm 2.5 years on from having very successful chemoradiation and brachytherapy to treat a gynaecological cancer but was diagnosed as suffering from Pelvic Radiation Disease last year - with lower back and pelvic pain being an especially big problem for me. I have been experiencing mobility issues, plus extreme fatigue and cognitive problems, and I rely on pain medication a lot.

Hello, I am interested in being involved in research relating to cancer and pain.
I was diagnosed with womb cancer in October 2019 and following a full hysterectomy, radiotherapy and chemotherapy, I finished my treatment in May 2020.
I am having 4 monthly reviews and have recently been referred to the Lymphodema Clinic as I have some swelling in one of my legs.
I have coped well with the diagnosis and treatment but what I wasn't expecting was to still be having a certain amount of pain as a result of the treatment.
I have experienced pain in my pelvis area, especially on my left side, since my operation. It comes and goes and I mention it to my consultant but as they are not concerned about it being a sign of reoccurrence, to a certain extent I have been advised to adjust to life after cancer which may involve some pain.
I keep active and have a positive attitude, but at times, it is frustrating especially as I also have fatigue sometimes and very interrupted sleep.
I think it is an important area of post cancer work as it feels that there is little support for people post treatment other than reviews which do not see to address this issue.
If I can be of any help to your research, or as part of an advisory grouI am happy to be involved.
Thank you

I was diagnosed with testicular cancer in 1974 and was treated with surgery and radiotherapy, which was a much 'cruder' process in those days. For the next 40 years I experienced a range of aches and pains, of varying intensity, which were eventually labelled as fibromyalgia but which I have always attributed to radiation late effects. Last year my symptoms became more focused on my abdomen and I was eventually diagnosed with a retroperitoneal lyposarcoma which I was told was untreatable. However, I had asked for a second opinion from the Marsden and Mr Strauss then offered me the option of surgery, cognisant of the fact that all the literature suggests that this type of tumour is very likely to return. In October 21 Mr Strauss removed a 7.5kg tumour, at the Marsden, and I am now recovering from what was a pretty major op. I have just had a scan which showed no sign of any return. However, I am now experiencing more pain and discomfort than I did before the op.

One of the areas that interests me is the use of the catch-all term 'pain'. I suspect we all experience pain in different ways and there are different types of pain which are not totally captured by the 1 - 10 severity scale. For example, I have experienced long periods of dull aching pain which is bareable for a while but totally exhausting when it goes on for days. Others, I know, feel very intense, stabbing, pains or pain akin to burning. I wonder whether it would be helpful for patients to be able to characterise their pain as well as simply rating it.

I belong to a men's support group at Nottingham Maggies and pain is a constant theme, along with the anxiety that often attaches to it. I would be particularly interested in understanding whether men feel less able to admit to experiencing pain.

My background is in higher education and, in particular, in the development of professional competences. I would, therefore, be particularly interested in looking at how an awareness of these issues can be taught and assessed effectively.

For background, I am also a Governor at the Sherwood Forest Hospitals NHS Foundation Trust.

If you are still looking for members of the advisory group I would be more than happy to help if you think I could be of use.

Ian Holden

I have suffered with pain from multiple myeloma for over 20 years and take strong painkillers every day. I am interested in joining the patient advisory group.

I am and have suffered from quit a lot of cancer related pain. Pain due to spinal mets, due to MRONJ, and most recently sciatica. I would be interested in joining the advisory group.

Several years ago, I was treated twice for bladder cancer. More recently, I also needed treatment for an aggressive breast cancer, with a better outlook due to new treatments. Covid did not make treatment any easier because I had to stop some adj. treatments after chemotherapy because of the virus. Luckily, I had my surgeries before the first lock down.

Most of my life, I worked in cancer so I have seen patients' reactions to treatments and their psychological problems for many years since cancer was the BIG C and so many people, even very young, had little chance of survival.

Due to my experience, I found it easier to cope with side effects. Experiencing them myself, I learned a lot about how other people feel. At present, I am also suffering from long term side effects of mild covid which I had at the beginning of the pandemic. These side effects are harder, because they have not improved after 18 months. The chance of cancer recurrence is more likely in my breast.

My motto is that tomorrow will be a better day and, if not tomorrow, possibly the day or week after. Sadly, due to the virus, I have been stuck at home which has not helped but I hope that I can join the various groups in which I am a patient representative face to face again very soon.

I would like to join the advisory group sharing my experience and looking at projects. There is support and information around but it does wary from place to place and sadly, some patients do refuse to ask for help. My aim is to encourage patients to ask for help in coping with their pain and side effects from surgeries and treatments. Some patients still, sadly, do not want to talk about their cancer.

I am an Oesophageal-gastric survivor and have suffered pain prior to diagnosis and after treatment, mainly from surgical pain and the effects of the surgery.
I do run patient support groups and pain is often a big concern for many patients.
Our support group have looked at acupuncture as a supplementary therapy and results show it can help.
I would like to be considered for the advisory group.