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Lymphoma - Patient Narratives (c)
Treatments and their impacts: Chemotherapy
Image She discovered her lump and her GP asked her to return in two or three weeks if it hadn't gone away.
Image Explains what prompted her to do something about a lump she'd had on her neck for years.
Image His lump was pointed out by a doctor he met at a social gathering.
Image He had fever repeatedly for exactly the same number of days with his lymph nodes swelling and then getting smaller again.
Image She tried various things to relieve her persistent itching before being diagnosed.
Image Realised after diagnosis that the tiredness that made her take a year off work had been the first symptom of her lymphoma.
Image Her breathlessness was caused by fluid accumulating around her lungs. She repeatedly had this removed with a needle, and then an operation to prevent it recurring.
Image A man with a spinal tumour describes his severe back pain and then temporary paralysis.
Image A doctor explains how lymphomas occur and that having an immune condition such as rheumatoid arthritis leads to a small increased risk of developing lymphoma
Treatments and their impacts: Chemotherapy
Image Was reluctant at first to swallow her chemotherapy tablets because she was frightened of the possible side effects, but then had none whatsoever.
Image Found chemotherapy in tablet form liberating and more manageable than having it intravenously in hospital, even though she had to take 13 tablets in one go.
Image Stayed in hospital overnight for her first dose of CHOP chemotherapy so her reaction to the drugs could be monitored.
Image He spent several hours in a day unit every two weeks where the various chemotherapy drugs were infused.
Image Was depressed when told that he would need two extra chemotherapy treatments because a scan after the planned six treatments still showed some tumours.
Image Preferred to have needles put in his arm between his elbow and his wrist so bending his arm wasn't a problem, and shaved the hairs off his arm to avoid them being pulled.
Image Describes how a central line was inserted near her collar bone under a local anaesthetic and later removed.
Image For him a central line was a Godsend because it made things easier.
Image Describes what it was like having chemotherapy injected into her spine, but only the thought of it was frightening as it was painless and she soon got used to it.
Image Said the chemotherapy treatment suite was very comfortable, refreshments were provided, and the nurses made the experience as stress-free as was possible.
3. Treatments and their impacts: High dose therapy and stem cell transplantation
Image Likens high dose therapy with stem cell transplant to killing a lawn with weedkiller before reseeding it.
Image Describes injecting himself with G-CSF to stimulate stem cell production and having his stem cells harvested.
Image Had worried after a poor 1st day's harvest that not enough stem cells would be harvested, but was relieved after the 2nd day when it had been successful.
Image His 1st harvest failed because of insufficient injections and his 2nd produced only just enough cells; he imagined the cell separator machine would be scary but it was not.
Image Her autologous stem cell transplant was abandoned when not enough cells were harvested, and an allogenic transplant was out of the question.
Image His sister donated stem cells for an allogenic transplant and the G-CSF injections made her bones ache; she had to be sedated to go on the cell separator because she hated needles.
Image Had her high dose chemotherapy followed by an autologous stem cell transplant.
Image Didn't like his doctor calling his high dose therapy 'salvage chemotherapy' and explains why he received lower dose chemotherapy before his allogenic transplant.
Image Worried about her infection risk when she had to share a bathroom with others when in hospital for her stem cell transplant, and often didn't feel like seeing visitors.
Image Saw his wife most days when in hospital for his stem cell transplants and occasional visits from his daughter gave him a boost when he was feeling particularly low.
Image Found his hospital stay more difficult mentally than physically - he felt isolated and bored and his room was depressing; he was determined to get out as quickly as possible.
Image After being discharged from hospital after her stem cell transplant she spent days in bed at home and repeatedly felt too exhausted to return to work
4. Treatment-induced infertility
Image She and her husband planned to have children and worried that chemotherapy for her relapsed lymphoma might make her infertile.
Image Felt his consultant had rushed him off to bank his sperm after their first meeting about treatment; he felt unprepared and wanted to know more about what to expect.
Image His sperm had been stored, unused, for 15 years when he was asked if he still wanted it saved; he describes the process of sperm banking.
Image Banked his sperm before starting treatment that made him permanently infertile; 13 years later he and his wife plan to have a second child by artificial insemination.
Image Already had one child and felt insecure about her long-term health and her ability to look after another child, so decided against egg harvesting.
Image Declined egg harvesting as she'd had insufficient time with experts to discuss the practical and ethical issues, it would delay her treatment, and the NHS might not fund it.
Image Had an operation to preserve her fertility by stapling her ovaries to her uterus, outside the radiotherapy treatment field; pregnancies were difficult as a result.
Image Got pregnant accidentally after finishing treatment, her doctor arranged a termination but she miscarried before it happened, and realised that she didn't want another child.
Image Got pregnant after treatment ended so knows she's not infertile; was not ready to have a child and worried about any effects of chemotherapy on the fetus, so had an abortion.
Image Was treated when a teenager and never told that she might become infertile so was not anxious when later trying to get pregnant and produced three beautiful, healthy children
5. Dealing with health professionals
Image Praises the doctors and nurses who looked after her.
Image All the chemotherapy nurses she met in the NHS were excellent; they remembered her personal details; she felt that they had a personal investment in her.
Image Her doctors didn't explain properly how much her tumours had shrunk with each treatment, causing her unnecessary anxiety.
Image Says at first her consultant didn't like being questioned by her so she told him she didn't like being treated as a disease rather than a human being, after which they got on well.
Image His consultant was insensitive in making light of his planned stem cell transplant which for him was a major life-changing event.
Image Compares consultants at two different hospitals: one didn't allow her to finish her questions and misled her about a clinical trial, the other communicated really well.
Image Had been taught how to clean her own Hickman line but when a nurse did it she did it sloppily.
Image Felt isolated when having chemotherapy in a side room in a hospital ward as nurses and other staff rarely came to check her drip, see that she was all right or just to talk.
Image Initially used private health insurance to avoid a long wait: his private and NHS care differed only in the hospital environment.
6. Recovery, remission and follow-up
Image Being told she was in remission was one of the best feelings and going back to work gave her an amazing mental boost.
Image After five months in hospital having intensive chemotherapy and radiotherapy it took him about a year to regain normal energy levels.
Image Two years after treatment for a relapse he felt confident that his lymphoma would not return. He has felt well ever since and has hardly needed to visit his doctor.
Image Physiotherapy and hydrotherapy helped him regain mobility after surgery to remove a lymphoma from his back and reconstruct his spinal column.
Image Had been paralysed by a spinal lymphoma; after months in a wheelchair he walked with crutches, then sticks, then finally without any aids.
Image Has a check-up every few months that includes blood tests, weight measurement, a physical examination for lumps, a chat, and occasionally a scan.
Image Sometimes worries before check-ups in case his disease is returning but he also values the reminder of what he has been through.
Image Became hypochondriacal about checking his symptoms during remission and had a change in his bowel habits investigated in case it was due to cancer.
Image Counselling when her treatment finished helped her to deal with her feelings about the illness and the shock of no longer needing to go to the hospital.
Image Coped throughout her treatment because of her family responsibilities but cried at her 6 month check-up; counselling helped her to accept having had cancer.
Image Found it difficult to deal with being told his life expectancy might be greater than originally thought as he would have to plan for his future.
Image Felt guilty that she had survived; used to tell people she met that she had had Hodgkin's lymphoma, but 13 years on it is no longer the most important part of her identity.
Image Surviving cancer was the best thing that happened to her - it gave her a second chance to make the best of her life.
7. Lifestyle and attitude changes
Image Learned about foods that have anti-cancer properties, changed his diet accordingly and thinks all people with cancer should know about this to reduce their risk of relapse.
Image Smoked before his illness and was advised to quit after treatment, which he did for a while; he quit again when he met his new wife.
Image In place of the job he'd had to give up, he learned how to sail, bought a boat, fitted it out and achieved his dream of sailing to France.
Image Tries to make the most of life since his diagnosis and does things now that he only thought about doing before, such as travelling.
Image Since his illness he has become quieter and calmer, more understanding of others and prefers speaking with people to fighting them.
Image His cancer experience gave him confidence and a reason for living, making him want to help other young people with cancer.