Just feeling alone

Hi and welcome to the community. I am not from this group, so I hope you don't mind me posting. I have been in the same position, as have many others here. The waiting for tests and results can be really worrying times. You just have to take things one step at a time. I am sure some of the group members will be along to share their experiences of the treatment you have had. Best wishes.

Hi Kelly,

Welcome to this group, its quite exclusive, as you know there’s not many of us out there.

Congratulations for getting through the treatment, another tick in the box. How far post-treatment are you and how are you feeling?

I am 48 and finished treatment last June after been treated for stage 3b anal cancer. I had my post-treatment scans in September and was told NED (no evidence of disease). I’ve since had 2 check-ups which have also been NED and I cross my fingers that every other check-up for the next 4.5 years will also be clear.

I totally understand your feelings, they are normal bearing in mind the circumstances. Its a massive physical and physchological roller coaster. In a way we're lucky that the treatment is short and sharp but it doesn’t give much time for us to process it all.

I remember the 3 month wait after treatment finished. For starters it took a while for me to feel well again and to be able to sit down! I had a severe skin reaction and it took 8 weeks for my skin to heal. It was the school summer holidays so I had a lot of distractions as I have 3 kids. Once they’d all gone back to school however, the anxiety and the what ifs? about my future began to creep in. Its important to accept that these thoughts are inevitable, don’t try to suppress them, accept them, talk about them and find ways of coping. Try to keep busy doing things YOU like to do. If you’re able, exercise whether that be a walk around the block, yoga, swimming or something more energetic. Exercise, leaving the house and being outdoors really helps. I alternate running and yoga and whilst sometimes its hard to motivate myself to do it, once I've exercised I feel better for it. I also got through a lot of Netflix, had a major tidy/re-organisation of my house, went to the cinema, met friends for coffee and had long baths reading books or browsing social media.

The important thing is to try and plan when you’re going to do things so you have a bit of structure to your week. If you’ve nothing planned it can be hard to get moving and you might end up down a rabbit hole, worrying about things you have no control over or googling - thats what I did sometimes. Equally, if you have days when you’re feeling tired and just can’t be bothered to do anything that’s ok, don’t do anything. Your body is still recovering from a major trauma and you will need lots of rest. I still get tired now 6 months on from treatment and it can take up to 12 months to fully recover from this treatment.

When the dark thoughts come tell them to do one. Thats what I did and I still do it now. Kids think I’m mad! In the lead up to my first post-treatment scans every time I had a worrying/dark thought I’d just keep saying to myself ‘its gone, its gone”. Once those scans are done, its usually a 2 week wait for results and thats probably the worst time because you know that someone knows whats going on inside your body. You have to remind yourself that its totally out of your control and carry on keeping busy and telling yourself “its gone”. The day of the results you will probably be a mess, your anxiety will reach new levels. Its to be expected and totally normal just take deep breaths and keep telling yourself its gone. This is what I did in-between a lot of crying.

Remember this treatment is highly effective and curative its therefore, far more likely you’ll get a positive result. I had a total response to treatment, which meant my 4cm tumour had completely gone and they didn’t feel the need to perform a biopsy.

I’m not sure how much longer you have to wait before you have your scans, so sending you loads of good luck for a good result.  

Keep us updated. 

Sarah x 

Hi Kelly,

Oh how I feel for you, and know just how you feel. It is a horrid place to be.

Like Sarah, I finished my treatment in June. Fortunately mine was discovered - by accident, at a very early stage. That didn’t make the treatment any easier, as I had the full whack. I also had a severe reaction to the radiotherapy and had to be admitted into hospital. I lost all the skin from front to back and at the top of my legs. All I could do was lie on the bed with no pants on. When I had to get moving,  I had poo pouring out of me uncontrollably. I ended up in huge incontinence pads, which rubbed on my bare flesh. I was a wreck! 

8 months on, which has gone so fast. I feel great. I can finally go out without spare pants, pads, wipes etc. My energy levels are back, I have tender new skin around my bits. I use Waitrose baby bottom wipes, they are amazing. 

My next check is coming up soon, and already feel a bit wobbly about it. All people who have had cancer must feel the same. Hang on in there, it is tough. Sarah has given sound advice, but listen to your body, allow yourself to cry, you’ve had a rough, tough time.

I wrote a blog about my experiences, it helped me express my feelings, but I tried to find something more light hearted. It does contain rude words. blogfromuranus.blogspot.co.uk. It might raise a smile - or a frown....

Very best wishes,

Pam

Hi Kelly, 

It’s an awful place being where you are now! Like Sarah & Pam I finished my treatment in June so a little ahead of you, but we’ve all been where you are now & have felt what you’re feeling so it’s perfectly normal to be feeling this way & I’ve kind of come to terms with the fact that this is the way it’ll be sometimes. 

I think as we all approach check-ups, scan results etc., no matter how far along we are we get stressed & let our minds run away a little. I was luckily diagnosed early stages & had my tumour removed surgically before embarking on a reduced course of chemo-radiotherapy (clinical trial) & have been told the chances of recurrence are pretty low but once you’ve had a cancer diagnosis of any kind I think it’s only natural to worry about things we would have brushed aside before. 

Sarah has hit the nail on the head perfectly when she said about keeping busy when you have the energy it really does take you out of yourself, a good long walk in the fresh air with my dog or just lunch or coffee with a friend usually does the trick for me & you should take a look at Pam’s blog it definitely gave me a chuckle in some very dark days. 

Hoping you don’t have too long to wait until your scans & then a couple of weeks after that your mind can be hopefully put to rest. 

Nicola x 

Hi Nicola,

So pleased my blog raised a chuckle. I wrote it as a way of getting it out of my system, but also to try and find a light hearted side to all the sometimes demoralising stuff we’ve been through! I’ve had some lovely responses.

Best wishes,

Pam

Hi, thanks for replying. 

I finished treatment 18th January. My oncologist has already spoken to me about surgery, my tumour was 8cm and it pushing through my vaginal wall. So not only is surgery spoken about for the colostomy bag, repair work to the vaginal wall is on the horizon. 

I have good days and bad days. Skin healing is taking it time and toll.

Xx

Hi Pam, 

It certainly did make me laugh, I too have found my sense of humour has got me through most of this, especially throughout treatment, my dad came with me daily for company throughout my radiotherapy sessions & often said he could hear myself & the radiotherapy nurses laughing rather loudly from the waiting area lol… I’m pleased you’ve had a good response to it, well done.

Nicola x

Oh Kelly I didn’t realise you were facing all this crap as well. I had a T4 tumour that they said was ‘resting' on my vaginal wall however, as my tumour had completely gone after treatment I now have to have vaginal as well as anal examinations every 3 months.

There are people on here that have gone through the surgery and come out the other side. I hope someone contacts you soon to offer some insight and re-assurance. 

Like me, you must have had a high dose of radiation and I imagine a severe skin reaction as a result. My skin took about 8 weeks to heal and is still tender now, feels like I’m bruised if I go proding around. I have bad scaring but it’s hidden away I suppose. What took the longest to heal was my uretha, it hurt like hell to pee for months.

You are not alone Kelly we are here for you. Also, consider contacting 'The HPV and Anal Cancer Foundation', they are a charity based in the U.S. but have an office in London. They have a peer to peer programme where they can pair you with another anal cancer patient that has gone through a similar experience. I joined the programme and have a very supportive peer who I am still in contact with.

Keep posting and talking.

Sarah x

Thank you for your comments,  I'll certainly look into the peer pair up support. Xx

Hi Kelly,

Like Sarah I didn’t quite realise that you’re likely to be facing surgery too. Personally I haven’t used the peer to peer service that Sarah uses but I think it would be perfect in your situation, just to have close contact & someone to bounce off that has been through exactly what you’re going through now. Also my local  Cancer Connections offer a counselling service that’s very easy to access, maybe if you have a local office close to you that would be another option if you’re feeling a bit isolated. 

Please keep in touch on here though, I know we’re all at different stages on our journeys but I find this forum an ongoing source of support.

Nicola xx