{"id":260,"date":"2021-05-06T13:46:53","date_gmt":"2021-05-06T13:46:53","guid":{"rendered":"http:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/?p=260"},"modified":"2021-05-06T13:46:53","modified_gmt":"2021-05-06T13:46:53","slug":"late-onset-radiation-issues-living-with-radiotherapy","status":"publish","type":"post","link":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/2021\/05\/06\/late-onset-radiation-issues-living-with-radiotherapy\/","title":{"rendered":"Late Onset Radiation Issues &#8211; Living with Radiotherapy"},"content":{"rendered":"<p>In the <a href=\"http:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/2021\/02\/25\/why-research-personal-experiences-of-radiotherapy-to-generate-information-that-inspires-action\/\">previous blog post<\/a>, we discussed the importance of developing our understandings of health through examining women\u2019s social roles and lived experiences, and how this approach is founded on a strong history of activism and research in the Western world, particularly feminist activism with its history of sharing experiences and knowledges.<\/p>\n<p>The blog post below, written by an anonymous guest blogger, provides a strong, personal account of how it is like to live with radiotherapy, long after the treatment has finished.<!--more--><\/p>\n<hr \/>\n<p><strong>Late On<\/strong><strong>set Radiation Issues<br \/>\n<\/strong>By anonymous guest blogger<\/p>\n<p><span data-contrast=\"auto\">I finished the treatment for my cervical cancer almost exactly 4 years ago.<\/span><span data-contrast=\"auto\">\u00a0I am a single woman, living alone and was aged mid 50s at the time of my treatment. <\/span><span data-contrast=\"auto\">I had a <\/span><span data-contrast=\"auto\">\u201cradical\u00a0<\/span><span data-contrast=\"auto\">hysterectomy with bilateral <\/span><span data-contrast=\"auto\">salpingo<\/span><span data-contrast=\"auto\">&#8211;<\/span><span data-contrast=\"auto\">oo<\/span><span data-contrast=\"auto\">phor<\/span><span data-contrast=\"auto\">ectomy<\/span><span data-contrast=\"auto\">\u201d<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">\u00a0including<\/span><span data-contrast=\"auto\">\u00a0the removal of nearby lymph nodes. This was followed by 5 weeks of pelvic radiation daily\u00a0<\/span><span data-contrast=\"auto\">(<\/span><span data-contrast=\"auto\">except Sundays<\/span><span data-contrast=\"auto\">)<\/span><span data-contrast=\"auto\">\u00a0and lastly<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">\u00a0a very long day<\/span><span data-contrast=\"auto\">\u00a0and night<\/span><span data-contrast=\"auto\">\u00a0of brachytherapy.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">I was made aware of the possible side effects:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">Lymphoedema<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\">Bladder and bowel\u00a0<\/span><span data-contrast=\"auto\">dysfunction<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"auto\">Changes to my sexual function<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">I developed lymphoedema in both legs within 18 months. But post treatment, my bladder and bowels gradually returned to normal. My libido was unaffected by the treatment.<\/span><span data-contrast=\"auto\">\u00a0I presumed then that the lymphoedema was the only side effect.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">T<\/span><span data-contrast=\"auto\">he lymphoedema and compression garments ha<\/span><span data-contrast=\"auto\">ve<\/span><span data-contrast=\"auto\">\u00a0a major effect on any confidence in my attractiveness and desirability. Also, my vaginal tissues\u00a0<\/span><span data-contrast=\"auto\">have\u00a0<\/span><span data-contrast=\"auto\">bec<\/span><span data-contrast=\"auto\">o<\/span><span data-contrast=\"auto\">me so sensitive that they<\/span><span data-contrast=\"auto\">\u00a0virtually<\/span><span data-contrast=\"auto\">\u00a0always t<\/span><span data-contrast=\"auto\">ear<\/span><span data-contrast=\"auto\">\u00a0during intercourse. Apart from the initial<\/span><span data-contrast=\"auto\">\u00a0acute<\/span><span data-contrast=\"auto\">\u00a0pain, this always le<\/span><span data-contrast=\"auto\">a<\/span><span data-contrast=\"auto\">d<\/span><span data-contrast=\"auto\">s<\/span><span data-contrast=\"auto\">\u00a0to<\/span><span data-contrast=\"auto\">\u00a0cellulitis<\/span><span data-contrast=\"auto\">.\u00a0<\/span><span data-contrast=\"auto\">Cellulitis for lymphoedema sufferers is a particularly dangerous condition \u2013 it can quickly result in hospital admission, IV treatment and even death!\u00a0<\/span><span data-contrast=\"auto\">The first time I had it I just felt poorly and sleepy, later episodes became increasingly more severe<\/span><span data-contrast=\"auto\">:<\/span><span data-contrast=\"auto\">\u00a0intense pain, a raging temperature, nausea and being unable to leave my bed for 3 or 4 days<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">One year, I had cellulitis 9 times<\/span><span data-contrast=\"auto\">. E<\/span><span data-contrast=\"auto\">ach time I became more poorly, despite having a 10 day course of antibiotics always on hand in the house.<\/span><span data-contrast=\"auto\">\u00a0It seems that if I want to avoid cellulitis again, I can no longer have sexual intercourse.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">As a single woman, it\u2019s very difficult to explain these things at the beginning of an intimate relationship. It\u2019s hard enough to even find someone you would want to have a relationship, regardless of these complications.\u00a0 I had been given vaginal dilators when discharged and I used these. However, the impact of a self-administered dilator and actual sexual intercourse are very, very different.<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">I think the changes to my bladder and bowel function were so gradual, that I hadn\u2019t registered them as a problem until they became quite severe.<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">Currently,<\/span><span data-contrast=\"auto\">\u00a0I don\u2019t think I could class myself as completely continent in either department. I have changed my diet over and over again to try to help what I thought was IBS. I now avoid grains, some fruit and most lentils, beans etc. I am not prepared to give up coffee or alcohol but I know they also have a<\/span><span data-contrast=\"auto\">n adverse<\/span><span data-contrast=\"auto\">\u00a0effect. Having attended a<\/span><span data-contrast=\"auto\">\u00a0C<\/span><span data-contrast=\"auto\">ontinence\u00a0<\/span><span data-contrast=\"auto\">C<\/span><span data-contrast=\"auto\">linic, I know that my bladder can hold a normal amount when I am horizontal. And that my core and pelvic floor muscles are strong. However, I\u00a0<\/span><span data-contrast=\"auto\">always leak from the bladder and sometimes also from the bowels. I\u00a0<\/span><span data-contrast=\"auto\">always have spare underwear in my bag. I always, always wear incontinence pads. And I\u00a0<\/span><span data-contrast=\"auto\">always leak<\/span><span data-contrast=\"auto\">, e<\/span><span data-contrast=\"auto\">very day. I\u00a0<\/span><span data-contrast=\"auto\">really struggle to hold my urine \u2013 I have both stress and urge incontinence.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">I also have virtually perennial diarrhoea. And when I need to go, I have less than 5 minutes before I am unable to<\/span><span data-contrast=\"auto\">\u00a0hold on any longer. I regularly have embarrassing situations. I hate it.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">I\u2019m not sure how this will affect my life going forward. It certainly affects my social life. So,\u00a0<\/span><span data-contrast=\"auto\">i<\/span><span data-contrast=\"auto\">n a\u00a0<\/span><span data-contrast=\"auto\">way\u00a0<\/span><span data-contrast=\"auto\">l<\/span><span data-contrast=\"auto\">ockdowns<\/span><span data-contrast=\"auto\">\u00a0have been a respite for me because I see fewer people, haven\u2019t had any dates and have been able to cope with my situation alone and<\/span><span data-contrast=\"auto\">\/<\/span><span data-contrast=\"auto\">or at home. I live in the countryside<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">\u00a0so when I go out walking, I carry wet wipes, dog poo bags and spare underwear and just hope that no one ever sees me behind whichever rock or tree I\u2019ve managed to get to in time. I don\u2019t expect that this will change.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Relationship-wise<\/span><span data-contrast=\"auto\">, i<\/span><span data-contrast=\"auto\">t is probably too much to expect that any ma<\/span><span data-contrast=\"auto\">n<\/span><span data-contrast=\"auto\">\u00a0would saddle himself with these problems \u2013 especially those related to sexual function. It\u2019s one thing if you\u2019ve been with someone for years when this happens. But<\/span><span data-contrast=\"auto\">\u00a0for a man<\/span><span data-contrast=\"auto\">\u00a0to choose\u00a0<\/span><span data-contrast=\"auto\">it<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">\u00a0is a very different thing. And that makes me really<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">\u00a0really sad.\u00a0<\/span><span data-contrast=\"auto\">I know people say that any man who really loves you, would understand, but those people are never single, mature women who have spent years on online dating sites.<\/span><span data-contrast=\"auto\">\u00a0To be honest, I\u2019ve\u00a0<\/span><span data-contrast=\"auto\">now even\u00a0<\/span><span data-contrast=\"auto\">given up using the vaginal dilators. I know I should use them, but sometimes, it\u2019s easier to pretend that the sexual me doesn\u2019t exist.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">I think I was properly prepared for the immediate adverse effects of radiation and my surgery. I don\u2019t remember being aware that the onset of these conditions might not\u00a0<\/span><span data-contrast=\"auto\">even start until many years later<\/span><span data-contrast=\"auto\">, or that they would get progressively worse<\/span><span data-contrast=\"auto\">.\u00a0<\/span><span data-contrast=\"auto\">But a<\/span><span data-contrast=\"auto\">t the time of signing consent forms for cancer treatment, I just wanted the cancer to go away! I would have signed anything that gave me that chance. But even with hindsight, I think I still would have gone ahead. It\u2019s Hobson\u2019s choice really.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>In the previous blog post, we discussed the importance of developing our understandings of health through examining women\u2019s social roles and lived experiences, and how this approach is founded on a strong history of activism and research in the Western world, particularly feminist activism with its history of sharing experiences and knowledges. The blog post [&hellip;]<\/p>\n","protected":false},"author":96,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[3],"tags":[],"class_list":["post-260","post","type-post","status-publish","format-standard","hentry","category-blog"],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/posts\/260","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/users\/96"}],"replies":[{"embeddable":true,"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/comments?post=260"}],"version-history":[{"count":2,"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/posts\/260\/revisions"}],"predecessor-version":[{"id":262,"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/posts\/260\/revisions\/262"}],"wp:attachment":[{"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/media?parent=260"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/categories?post=260"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wp.lancs.ac.uk\/gynae-cancer-narratives\/wp-json\/wp\/v2\/tags?post=260"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}