Now what?

HI Chellby,

I was just about to shut down my PC when I saw your post.  It is a strange feeling when your treatment finishes. For weeks your schedule has centred around appointments  and you spend so much of your time chatting to other cancer patients and then all of a sudden you are back in the outside world.   I felt quite isolated and lost.   It takes time to get back to normal or rather a new sort of normal..  

As far as what happens next on the appointment front, you will probably have an appointment with a nurse a few weeks after the brachytherapy to discuss the use of dilators.  Then a bit later an appointment with the oncologist to check how you are healing,  discuss any lingering Side effects and explain your follow-up schedule.   I have not had any further MRI or CT scans  .Some people have.  I think it depends on the policy of your hospital and your personal circumstances,  

Any way , well done on coming to the end of the RT

Hi Chellby. Good to hear you're almost at the end of treatment. I agree with Anne that once treatment is over it can feel very strange for a while. You've left the safety net of regular hospital appointments and checks behind and you do feel very alone for a while. I had surgery, chemo and external radiotherapy. I had an aggressive, high grade cancer so I was given post chemo ct scan before starting chemo, then a ct scan about 3 months after radiotherapy had finished and my body had had chance to heal. I was told I'd be seen every 3/4 months for 2 years, then every 6 months for 3 years. The checkuos are always the same - a discussion with the doctor, an internal examination , a general check of my tummy, pelvis and lymphnode areas, and the opportunity to ask any questions I might have. Both the gynae-oncologist and the CNS reassured me that I can ring her at any time if I'm worried between appointments and she'll arrange for me to be seen if she thinks is necessary. I've just been promoted to 6 months checks so it's so far so good.

I found I didn't want to do very much for the first few weeks after treatment ended - I didn't have much energy, either physically or emotionally. Gradually though I learned that it was important to take control again so I began by concentrating on my recovery and well being (taking regular walks, building up the distance etc) and honing my coping strategies. I had some informal counselling from my vicar and his wife which helped enormously. I found I used the time post treatment to reevaluate what's important to me and I made some lifestyle changes. With my family's support and approval I took early retirement. It maybe wasn't the best decision financially but it was definitely the best decision in terms of my well being. I have gradually taken on more voluntary work, plus I do some paid relief clerical work at a local hospice (sometimes it's only a day a month but it keeps my skills up and helps me to feel im giving something back). You might find it helps to do something new if you have time and energy. We took up ballroom dancing, initially it was to learn to do the waltz in time for our daughter's wedding but we enjoy it so much we kept on with it. You won't see me on Strictly any time soon but it's great fun! 

Take some time to heal physically and emotionally and plan to do some of the things you enjoy. Sending you lots of good wishes x 

Hi Fairycake

what lovely words & advice u have written for Chellby I agree when u are diagnosed with Cancer you do tend to revaluate ur life & make changes for the better 

I apologise for coming into ur conversation but I wanted to reply to u fairycake but I don’t seem to know how to. So Chellby I Hope u don’t mind I just wanted to say thank u for fairycakes nice message & to let u know I have spoken to my CNS & if I am still bleeding next week she will arrange for me to see the Gynae/oncologist just to let Chellby know I am 3 weeks post having a full hysterectomy by Key Hole surgery after being diagnosed with stage 1A  Womb Cancer & I have been given the all clear   & do not require any further treatment so I am very lucky & I think the support from this lovely group has been just what I needed to get me through my journey so far 

I wish everyone good wishes & thank u for being there for me xx 

Hi Chellby, 

Well done for making it through the radio, the brachy is a lot easier. What happens next depends on your local authority and your personal circumstances. For me the first time round I saw the Consultant pretty quickly and went to four monthly checks with the cns. The second time round they are being much more thorough. I had the dilators talk at my last bracy. The cns rang a week after and booked me in with her for a holistic needs assessment, we looked at things I may need such as counselling and how I was doing in general. My first check up was at six weeks with the consultant. I will see him again at three months then three monthly thereafter. The cns is on a ring when you need me basis.

On a personal note I basically slept for about a week. Then I started with smaller steps. I went for daily walks then progressed to swimming. I went back to work eight weeks after treatment ended on a phased return. I've been back approximately eight weeks now and am up to 30hrs per week. I'm going swimming twice a week. Don't get me wrong the fatigue is horrendous some days but other days it's bearable. Everyone is different. For me normality was important, I couldn't just curl up and sleep forever. I'm not as active as I used to be but every week I get stronger. My treatment ended the first week of March so I think I'm doing pretty well. Go at your own pace though and don't take on to much till your ready xx

Hi Chellby

How great to hear you’re so near the end! And how nice to hear so many friends here are doing well after their treatment too. Wise words as usual from you all.

There are a few things I’d like to add. First, has anyone explained that the radiotherapy carries on working in your body for two to four weeks after the treatment has finished? Don’t be surprised if you find the fatigue worsens before it gets better. But it will slowly get better. Make sure you drink plenty of water - the radiotherapy is killing off cells in your body and these are cleared by your lymph system. Drinking water helps clear them. Try to balance getting plenty of rest with doing some gentle exercise. Building a daily routine that involved a daily walk and a nap helped me have some structure in my life post treatment as much as it helped me cope with the fatigue. It’s counterintuitive but gentle exercise does help fatigue. 

Second, scans. I think it’s safe to say that they only use scans as a means of monitoring if they expect the cancer to return. So in my view, no scans is good news. I had an inoperable lymph node left behind after the surgery; my oncologist expected the cancer to recur at this site and used scans to monitor for this, looking for changes in the size of that lymph node over time. Sure enough, that’s where it came back. If I’d only had stray cells to clear up, there would have been nothing to monitor. Does this make sense? 

I think the far bigger challenge is the emotional one. I had expected to feel elated when I had finished the treatment but in fact I felt bewildered and lost. My body had let me down, my confidence was in tatters, people kept telling me how brave I was and I felt a pressure to live up to that. I’ve got a photo of me on the day my treatment finished, clutching a ballon and bunch of flowers that my friends brought round. The smile definitely doesn’t reach my eyes. 

This article by a clinical psychologist really helped me to understand what I was experiencing and to know that I wasn’t alone: 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Yes, keeping busy is important. But I don’t think it’s a period of limbo that you are entering now. It’s not really a limbo where you’re  waiting for a test that will determine the next treatment. It’s more like this is the start of life after treatment. For what it’s worth, I think you can live in limbo between appointments - it’s a pattern you have become accustomed to and developed coping skills to manage. Or you can choose to start project recover and recuperate. 

Lots of love 

Thank you all for your lovely comments.

Today was the final brachy and you're right I do feel a bit lost and flat now its all done.  My CNS did warn me I would feel lost at the end but said I can call if I feel I need to, but I don't feel this feeling warrants calling them.

I'm booked in to see my CNS on Monday which I know is quick after end of treatment but it's because she is off on annual leave soon so I'm getting in to see her before she goes away.  Use of dilators has been mentioned so I'm assuming she will go through that with me.  I'm worried about those now though because the brachy seemed to hurt me lots because I was sore internally from the R/T so now I'm not looking forward to the dilators part, not that it's something to look forward to!

Part of me wants to celebrate the treatment is over but part of me also just wants to go and have a nap.  I'm back at my desk working this afternoon and I have no concentration at all!  Everyone keeps telling me how brave I am and how inspirational I am and how strong I've been and how wonderful it is that it's over. I just wish I could believe them.

It's a weird position to be in and I know many of you can see where I'm coming from. I just wish I knew what I should be doing next.

xx

Hi, others have already reassured you that the flat feeling and tiredness is quite normal and eventually does get better, but with regards to the dilators, there's no need to worry. They told me not to start using them for 6 weeks after treatment, so hopefully your soreness should have settled ok by then. Also, you can start slowly with a very small one and increase gradually over several months.

Hi Chellby

Oh I do get where you’re coming from. You’re not alone - and this feeling you have now will pass. You’re going to have to trust me on this. 

I think you should believe those who say you’re brave and strong. You are.

Top tips for dilators. Anyone reading this who is of a delicate disposition should look away now. I make no apologies for what I’m about to discuss but equally, I do not want to offend. This is about sex and, reader, you have been warned. 

The dilators are not much fun and you will need to use a lube. I found Sylk lubricant the best. It’s available online and is organic and water soluble. If you’re getting back to a sex life, you’ll probably find you need a lube and it’s good for that too. In fact, if you’re having sex that’ll do the same job as the dilators anyway. You don’t have to use the clinical dilators. It’s pererctly fine to use a sex toy instead. Why not make a virtue out of a necessity? If you want some advice on this, Sam Evans is a nurse and co founder of the sex toy company Jo Divine and has written extensively on this subject. Tracie Miles is the gynae oncology nurse behind the Ask Eve helpline and her PhD was on the impact of gynae cancer on women’s sex lives. She is kind and knowledgable and completely impossible to embarrass 

https://eveappeal.org.uk/supporting-you/ask-eve/ 

Chin up, chick. 

Lots of love xxx

Thanks for posting the link to the article. It explains a lot of how I have been feeling. It is nearly a year since I was first diagnosed overall I think I have done well. My treatment is finished and I had an encouraging MRI scan about a month ago. Still get tired and a bit flat at times, just hope this diminishes soon.