From acute to chronic effects.

Hi Sarah, Sorry you are feeling fatigued and dealing with those sore muscles, but you are still in the early stages of after treatment. Remember,  chemo and radiation causes fatigue and is cumulative. I would hit my wall after 4 hrs of physical activity at 10 weeks out. Everyone is different and some do better than others.

The aches and pains are normal just 10 weeks out. I went back to work 6 weeks after treatment part time and couldn't even lift myself up into my Tahoe. I chose to work from 12 to 5 because of bowel incontinence and Fatigue. It was 3 months before I could stand up from a squatting position. It took some time for my leg, hip an bum muscles to build back up. As far as your vagina, your gynecologist will be able to tell you more on what's going on. They can use children tools to inspect you. I would get checked by your gynecologist before trying the dilators since you had vagina wall intrusion. 

Yoga is a good choice for your mental and physical well being and I started with very basic yoga.

I saved the best for last..I am 9 yrs cancer Free this August Praise the Lord! The treatment plan for anal cancer has a very high success rate!! I keep in touch with my Fellow Bumlanders to share my success story to give Hope to those just finishing up with treatment. Also, because I found this group to be so comforting and helpful throughout my treatment and beyond!

Prayers and Comforting Hugs for you on your visit tomorrow!

God Bless and keep us Posted, Theresa 

Hi Sarah (Twigley),

You've already had a great response from Theresa (Amazing Grace) & I just want to echo that response. Considering what your body has been through over those 28 days you’re doing great for being only 10 weeks post treatment. As long as you’re seeing gradual improvement don’t expect too much of yourself, I think we all think that as soon as treatment is over we need to be getting back to ‘normal’ but that takes a lot longer than we think.

At 3 years out although I’m living my life pretty much as I was prior to my diagnosis I do have some long term side effects, nothing major I might add, I have some anal/vaginal stenosis, I still take stool softeners regularly, I have achy hips & my thigh, buttock & lower back muscles stiffen up very easily & sometimes I can feel quite fatigued for no apparent reason although that may just be an age thing! I went back to work part-time 5-6 weeks post treatment, my urgency for the loo was always first thing in the morning, as soon as I got out of bed & then that was me set for the day, I’m thankful for that but it took a long, long time to build up my stamina again as the fatigue from the treatment just doesn’t magically disappear once you’ve had that last treatment as you well know! 

With your tumours position & it involving your vaginal wall that’s where the focus of your radiotherapy will have been so that area will have got the full belt of the onslaught of the radiotherapy so the skin in there is going to be very new, thin & delicate so just take your time, use possibly a water based lubricant & go at the pace your body sets for you. 

When you speak to your consultant on the 1st of July regarding your scan results I would maybe ask him if he could refer you for some physio or even suggest some exercises for your hips/muscles etc., there’s also some good online yoga videos, I would maybe only try these if you’ve had some previous yoga experience though as you don’t want to be doing more harm than good! 

Theresa (Amazing Grace), I’m so grateful that to keep an eye on our group & keep popping in, at the stage you are (a glorious 9  years cancer free) you offer what is sometimes unimaginable hope & encouragement for those that are just starting out on this bumpy road & even those like me that are through the other side but still under surveillance, thank you so much for your valuable input. 

Nicola

Hi Twigley  (Sarah) it's still very early days for you and what you are describing is totally normal.  For a few months after treatment my buttock and particularly the thigh muscles were stiff. I would begin to walk and would feel about 103 years old I was so stiff. After  walking for a few minutes it would gradually ease a little but this took some months to resolve. Even now the bones in my pelvis and hips have bouts of aching particularly after a lot of exercise.    Have you tried looking for yoga videos specific to stretching the buttock muscles online? There are so many different ones available.

In relation to the the vaginal changes, the radiotherapy both shortens and narrows the vagina. As your vaginal wall was involved, this would have been included in the radiotherapy field. I didn't try the dilators until some weeks after treatment as I was simply too sore and could not face it. It was a bit shocking to find that it had narrowed so that the second dilator fit but not the third.  It took some weeks and lots of lube (sugar free so as not to cause thrush, I use Yes water based lubricant) before I could just about squeeze the largest size up there.

You could ask to be referred to a woman's health physiotherapist. Some time ago I watched a webinar from the Anal Cancer Foundation in the USA during which they covered vaginal stenosis in some detail. They had survivors of anal cancer on discussing their stenosis and how they had managed it. They also had a women's health physiotherapist who explained that she provided treatment to palpate and gently stretch the vaginal muscles. 

The urgency to go in the mornings should improve but may remain to some extent and be limited to needing to go quickly first thing which is how things have panned out for me. If I drink too much coffee in a morning this definitely makes things worse. 

You do sound to have been doing quite a few physical things so that will explain the increased tiredness. Make sure you're not overdoing things, your body is still recovering from the bombardment of treatment and you need time to heal. 

I hope your scans go ok and you get good news next month.  Bev x

H

Hi Twigley,  hope you’ve had a fun day at Guys even without the free radioactivity

I think it’s A Good Thing to be someone who fights to get back to normal activity & fitness.  But it’s hard not to overdo it.  My guess is that you need a bit more rest between bouts of being active.

I started walking for exercise in January, & by April I was doing 5 miles every morning.  It felt good even though it was often all I could manage for the rest of the day.  But I was running myself into the ground, & in early May I had to admit defeat & be looked after in a hospice for 10 days while I recovered.

Since then I’ve still walked at a brisk - but easier - pace & been a little more active in the afternoons, & apart from the odd bad day I’m healing… very very slowly.

It’s all rather frustrating, isn’t it.  On the other hand here we are, alive & able to moan about it

Take care  xxx  toni

Thank you all for your replies, this group is the best thing for support and information. I had all my scans and stuff done today so definitely feels like a milestone there.

Going into Guys cancer centre is always very grounding, so many people, often old and alone, queues at every point. The young radiologists working flat out to fulfil the daily quota. I was a bit unattached, what do you call it ? distached, feeling empty and like a robot, but was drawn out by the genuine friendliness of the people who took my bloods, asking pertinent questions, talking about what they were doing on the weekend, how difficult it was to iron the thick cotton uniform, how they cook for the week on a friday night. They look you straight in the eye, they really do care about their patients. That was nice when you feel alone, and on a conveyor belt.

Yes I was unsure of what tired even was, until my legs would literally hardly drag me from the bus stop to my door after gardening 6 hours, and I fell asleep on the sofa. I have been giving myself a bit of slack but it's not easy ! its so frustrating not being able to attack ones to do list. Just not having the motivation, but I do feel positive overall. This group is such a help. I'm sort of trying to smarten my house up to sell, and move to Devon to another house which is very much a doer-upper with a big overgrown garden. I actually went in the cold sea with some friends last week, it was exhilarating and did me more good than harm, it was very affirming to do that.

I'm not using any medication now, a bit of calendula oil on my ladies parts is soothing. Even using toilet paper again. Been a few weeks since I bought any water wipes.

I called the nurse about the pains, they did call back, told me to be patient and eat lots of protein, so my friend bought us steak and we had a bbq in the hot weather.

Sending love and huge dollops of hope to all of you.

Sarah L.

Hi Sarah

I am sorry to hear that you have been suffering from so many side effects from your treatment. It sounds very scary but you seem to have a very good attitude and I hope that this enables you to have the strength to manage and overcome all these hurdles.

Like you, I am also going to Guys Cancer Centre and have just completed my first three weeks of treatment. You are so right about the caring nature of the staff that carry out the blood tests. They have a genuine way of making you feel that they really do care about you. It’s funny but I also feel sort of detached when I go for my appointments. They really are so very busy and there is so much waiting around.

You seem to be an active person, like Toni and I wonder how you cope when you are unable to achieve what you would normally. This I think is going to be one of the hardest things for me as I am so independent and active. I am still working around my appointments and keeping up an exercise regime of sorts as well as doing everything that I would do normally. Reading about your experiences is quite sobering but also inspiring, as you seem to have such a positive and upbeat attitude towards your achievements. Thank you for sharing.

I know I will have to start to slow down and not stress about what I am unable to do, and accept help, but it’s not as easy as it sounds for me. In a way I don’t think it’s really sunk in.

This is my first post and I have been following this group with interest over the last few weeks but not felt as if I could offer anyone any support or ask for it as I really haven’t got too much to moan about, especially after reading about experiences like yours, Sarah.

However for the first time your post has given me the courage to say something.

I wish you all the best with your results and recovery and I love the amazing way you are challenging yourself and coping with things one step at a time. Thank you for inspiring me into joining in with this group.

Dear Serena,

                     thanks for your message, yes this group is the best, you can swear, get your knickers in a twist, cry, sob, vent, shout and everybody cares in a good way because they have been through exactly the same thing.

Our cancer is rare with only 1500 people a year getting it in England, so loads of the information we get is generic, for all types of cancer. Honestly I had a briefcase full of papers and pamphlets when I first started and it was more confusing than anything else. The only thing I ended up using was the drug diary, because I needed to record the chemo, I couldn't remember if I had taken it one night and didn't want to take a double dose so I started writing it down, also I started one for the painkillers which I did not use until into the acute phase for the 2 weeks after treatment finishes. I couldnt take the ibuprofen it gave me terrible heartburn, and didn't want the codeine cos it's constipating, so had the paracetamol at 6am 12noon 6pm and 12 midnight.

The pain was when you go to the toilet, it is just about bearable in between, but you are a slave to the after effects and you definetely need to be cosseted in that 2 weeks. It is different for everyone though. The nurse gave me some morphine gell to take home with me for those 2 weeks, I used it for a few days when it was really bad. The thing that saved me was this pink padding stuff called "Polymem" you line horrid long leg nylon knickers they give you with. Its a foam for deep burns and radiotherapy burns, normally it's not used on the orifices because it can get messy but I tell you it worked for me and was worth the faffing around and incontinence accidents. Also good was the plastic sitz bath, portable bidet that you put on the loo and sit in with warm salty water I bought on Ebay.

I think most people can battle through the chemo/radio unless you are unfortunate to get a bad diarreah or constipation, but the worst part is the 2 weeks after, it helps to count off the days and see the list shortening.

I know what you mean about it not sinking in, it just felt like a massive inconvenience at first, and I thought I'd be over it in a couple of months, but perhaps this is how we are able to cope, by telling ourselves it's not real !

I am surprised now the long term effects are kicking in, I should have known, but one is a bit in denial ... 

I do feel angry I was not diagnosed for almost 3 years so the tumour got quite big and involved my lymph nodes and vagina and veins in the area. 

I try to be philosophical and try to look after myself better, don't strive quite as hard, make it a bit easier on myself, allow mornings especially for me to bathe and anoint. I have put on a bit of weight but I was underweight before and  so it will be not to difficult to dislodge later I hope. Its hard to be positive sometimes but if you are feeling down you just have to ride through it like a puddle and drip dry on the other side and try and head for the sunshine.

Do keep on with this group, its like hive mind for us poor little bees who have been afflicted. You get  the latest information and those people that are dedicated on here, really are life savers, you know who you are !!!

sending you healing vibes, Sarah.

Hello buddies,

                       I spent yesterday evening watching videos from the American Anal Cancer society website, ones about long term effects. The pelvic physiotherapist was very good and said to palpitate ones canals every day, press the insides of the vag and anus gently, daily. She also said that having an orgasm was very good for you because it brought blood to the area and exercised your muscles and sphincters. That was good news ! my clitoris seems to be unharmed in all this blasting, if anything, the area is actually more sensitive overall because of the new skin.

Its hard to make time for this self care, and actually a bit difficult to do, but I think it is better to try it for the long term even if not every single day.   I hope I'm moving from acute to chronic smoothly and am obviously hoping the b*tard does not return.

very best wishes to you all.

Sarah.

Dear Sarah

Thank you very much for taking the time and trouble to respond with all this very useful information. Yes I have found that this group is very current and specific to our type of cancer. It’s good to know that I am not alone in my journey. I have also been given a stack of information of which I have struggled to make sense of.

I have experienced some pain when going to the toilet but it is manageable at the moment. I had two EUA’s within four weeks of each other before my diagnosis and had severe constipation directly after both procedures, which caused me to tear, and the subsequent diarrhoea caused me a lot of soreness and pain. After that experience, I can’t really complain too much right now. I have been reluctant to take painkillers such as ibuprofen and codeine as well for the same reasons as you.

The week after my treatment finishes, we have booked a week off work, but I am aware that I will need more time for recovery. It’s difficult as I am self-employed. Both me and my husband work together as registered child-minder’s. So if we don’t work we don’t get paid. We are still struggling with the effects of covid and need to try and keep going. Fortunately I have been able to get cover for my appointments and there will be someone to help while I am recovering. It’s quite difficult for me to accept that I am going to be unwell, as I have never taken a day sick in over 30 years, unless I have actually been in hospital. Even after my EUA’s I came straight back to work. But I suppose being in my own home does make things a bit easier.

Your advice about using Polymem sounds like something I should bear in mind. Were you given this at the hospital or did you need to buy it? They have been promising me some medi-honey but the supply is very restricted at the moment and I received only a tiny amount. Since my first EUA, I have been struggling to get to the toilet in time, so am dreading post treatment as I expect this will be intensified. I am nervous every time I get the train into London but I have been lucky so far! Yes my sizt bath has been my new best friend since my EUA’s.

It must be very upsetting for you to have made it through your immediate post treatment only to find that now you are having more side effects. Like you I don’t want to think that far ahead and will face things as they come. Denial isn’t a bad thing sometimes as stressing about something that may or may not happen cannot be good for you.

If you look at my profile you will see that I have also had a very long diagnosis where mistakes were made. I am also quite angry, as now I am stage 3, which could have been so easily prevented. But I want to preserve my energy into getting better rather than think about that right now.

I do love your attitude towards, being easy on yourself and tackling things as they come. You should be very proud of the way you are working though this and I hope I will find the strength to adopt this approach during my own journey.

Yes, I will keep on with this group and can see that there are some amazing people who really do care.

Keep on ‘heading towards the sunshine’

Serena