Hi I’m Post Treatment but a bit of a mess!

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Hi Everyone

Thank you all for your written support over the last few months. You have helped me, and continue to do so, more than you know.

I was diagnosed with anal cancer 2 days before my 50th Birthday in July and by September I started 28 days of Pelvic Radiotherapy, along with two weeks of Mitomycin and Fluoroucil Chemotherapy thrown in for good measure.

I had a fairly smooth first 4 weeks with amazing nurses and new found friends. I seemed to get away with any side effects until week 5, when I slept for the first time in the afternoon and started to get ‘skin issues’ from the radiotherapy. It was trial and error with the creams and lotions and this felt physically like my toughest time and this continued for a few weeks. I didn’t work at all due to the fact I work on public transport (covid issues) and I’m a shift worker. 

I had a meeting with my consultant at 6 weeks post treatment. It was very positive, I think. 

So, here I am, 14 weeks post treatment. Apparently, I’ll have another meeting soon and then a scan at 6 months. I’m at Bristol Oncology.

This is where I need your help again please. This is my toughest time, mentally. I am anxious everyday (so not me).  I think about it all the time. The more I use the toilet (this can be a lot!) the worse I get. Does this last long? Will it heal more? When will I know it’s gone? Why do you wait so long for a scan? Is it normal to wait that long, for I’d like to think, an All Clear? I can’t take the consultants ‘word for it’. How can I know for sure that’s it? There’s no more, anywhere? Is this just me, am I stupidly paranoid? It seems like it doesn’t end. I thought, treatment is done, I’m sorted, but ….

Gosh, so many questions/thoughts/worries. Sorry. I didn’t realise I was this bad until I started typing!  My husband had a stroke last year and we were just coming out the other side when this happened. I think I’m just struggling to be strong now. I’ve done it for so long. It’s the not knowing.

Anyway, if you’re just starting your journey, you’ll have your ups and downs, but you’ve got this. If you’re at the end of your treatment, please tell me it gets easier?

Sorry and thanks x

  • Hi Holibobs,

    Thankyou so much for your post. I am a bit behind you in the “journey”, just waiting for my 6 week post treatment check up next week. I can’t really offer any help, other than to say I hear you. It’s such a funny thing the mind isn’t it? I found waiting for the scan and biopsy results really hard. Once treatment started I was fine, the daily trips to hospital, seeing the radiotherapists every day. Once treatment stopped, that was is it.  Now it is the unknown , has it worked? What if it hasn’t ? In the day it’s fine, then at night..

    And I know these thoughts aren’t helpful, and are probably normal. Mostly I can put a lid on them, then sometimes they catch you unawares. I found myself crying at the news that Meatloaf had died  on Friday, lots of memories of college discos and dancing and singing to “Bat out of Hell”. A sense of mortality and of being old now and possibly not so much time left, certainly more life lived than I have left. Very maudlin. But practicalities, when to go back to work? I drive a lot for my job and not sure I can be that far from the loo at the moment, but work colleagues need to know. I am normally busy and a doer, but I don’t know how to plan or organise any of this , it is outside my control. Holibobs like you I am normally strong and I am not used to this uncertainty.

    Anyway, what the hell. This morning I have woken up more positive, reassured by your post, that what I am feeling is probably normal. Resolved to put my trust in the nurses and doctors who have looked after me so well and know what they are doing…and booked a holiday to have something to look forward too.

    Thankyou Holibobs, your post really helped. All you guys on here are such a support. 

  • Hi there ,

    Firstly don’t ever feel the need to apologise for the way you’re feeling, you’ve been through a major event these last few months & if truth be told we’ve all had at least some of these concerns following diagnosis & treatment. 

    It’s still very early days for you yet so yes things will improve further. You say you’re going to the toilet ‘a lot’ I’m presuming you mean many times? Sometimes if this has been a side effect from your treatment it can take a while to settle as your bowel will have been severely aggravated by the radiotherapy. Have you considered keeping a food diary to see if there are triggers for this? The treatment has had an impact of sorts on my whole digestive system I think, there are definitely things I’ve identified that I can no longer eat or I have to have in moderation now. Also medication, have you tried loperamide for days when you’re on the loo a lot? Healing, you will continue to heal for a long, long time & things will gradually improve, I found externally I healed really quickly after those initial 2 weeks post treatment, internally things did take longer but that’s radiation damage for you! The radiotherapy continues doing its thing for some time following that last session & this is why there’s always somewhat of a wait until your oncologist scans you to check on the results of the treatment. You should receive a pelvic MRI & a CT scan that covers chest, abdomen & pelvis, these will be reported on by a radiographer & your surgeon/oncologist, they will thoroughly check for any residual or new disease so it’s all we can do is trust in the report they give us. Anyone that has had curative treatment for a cancer diagnosis is followed up for 5 years, after this you’re classed as ‘cured’ as incidents of recurrence are highly unlikely after this period, for our particular diagnosis it seems the norm for surveillance to be mainly based around physical examinations (DRE’s) & annual scans although this can vary from hospital to hospital sometimes even oncologist to oncologist, they all have their own way of working but it seems quite common for this to be the basis of our post treatment surveillance. My oncologist & surgeon have always both told me that physical examination is always the best way to check for any abnormalities & they’ve both made it clear it’s always fine for me to contact them if I have any issues between my appointments so please don’t hesitate to contact your nurse or your treating team if you have any specific concerns. Personally I was seen 3 monthly for the first year, then 6 monthly for my 2nd & 3rd years & now I’m on annual checks until discharge, hopefully, at 5 years (I’m 3 years 7 months post treatment now).

    You’ve had a lot on your plate going through your diagnosis & treatment & also dealing with your husband’s health challenges so it’s really not surprising at all that you’re feeling a bit frazzled! Remember we’re always here if you need us. 

    Nicola

  • Pita Thank you so much. You just just said everything I’m feeling but so much nicer!  I cried at Meatloaf too and I’m not even a fan! Lol

    When I finally got in bed last night I realised also that as I have been forced into menopause, (I think it was coming anyway) this is probably challenging my anxiety and emotions. Grrrrr!

    I’m definitely concerned about day to day living at work.  I work onboard trains and the thought of fighting someone for a toilet when I get caught short is fearing me with dread! I’ve bought myself a Radar key to help at stations! You can buy a list of where they are in the country, so great if you’re driving.

    I just think I’ll be happier with a scan. A little feel about didn’t do it for me! Maybe it’s because I’ve had to be in control for a while that I feel lost and a little helpless. 

    I’m starting to get out and about on some walks, I wasn’t the fittest person anyway, and I’ve got a lot worse, so this has helped and ditto I’ve booked a holiday too. Thank you, as for now I’m appeased again.

    The greatest of luck on your journey. Stay in touch.

  • Thank you Sooooo much.

    Your posts along the way have been ‘sanity’ saving.

    I think I forget that it’s probably still ‘early days’. I have loads of support but I think I keep trying to put on a brave face, you know, and it all came flooding out yesterday. Lol.

    Your points are soo encouraging. I definitely use the toilet more than I ever did, but when I think about it though, it’s probably 3-4 times a day now (it was obviously more in the early days). I feel it’s just the urgency that niggles me. Do or die, lol. I have now started to consider more what I’m eating and when it might effect me! A diary does help. Loving food, does not!!

    Thank you for your perfect diary of what is to come. So helpful. I think this is pretty much what I am expecting. It’s just the scan wait for me. Great that it should cover a large area of my body, just in case. I’ve read a lot about NED or something? Is it like, you’re cured?

    All this aside, I have the greatest respect for my consultant and his team. EVERYONE has been truly amazing, even in these tough times.

    After I waffled last night, I realised that, being forced into the Menopause is probably not helping with anxiety and emotions! But that’s a whole other story eh!!!

    Seriously, you do the best job at reassuring people. Good luck with your journey and I’ll keep you posted. Thank you. X

  • Hi again ,

    You're more than welcome. 

    I definitely agree about the wait for scans & the anxiety that brings with it, it’s something we call scanxiety & it is REAL!! 

    NED stands for No Evidence of Disease, this is what they used to call remission but nobody seems to use that term any longer. You’re generally not told you’re cured until you’ve gone through the 5 years surveillance. Both my oncologist & surgeon assured me that with an anal cancer diagnosis though once you’ve reached that 2 year post treatment mark the chances of recurrence drops dramatically. 

    You’re also correct about being plunged into menopause probably not helping, I was either in menopause or peri-menopausal before treatment & getting my ovaries fried during radiotherapy saw an end to it all for me so silver linings & all that! 

    Please keep posting & let us know how things are going. You know where we are if you need a bit of a sounding board or anything at all, we’ll try our best to help. 

    Nicola

  • Dear 

    Well here I am in the changing rooms at The Marsden awaiting my 6 month scans. “Scanxiety” they call it. One moment I’m quietly confident the next I’ve got a case of the “what if’s?” 

    It’s so hard! There’s no magic wand and what will be will be. I missed the last 8 or more days of my chemo as I was so unwell but continued with radio and still in the back of my mind I think… what if it hasn’t worked completely because of that? 

    I think we all have good days and bad days and indeed that is true in “normal life” too. It’s ok to have these feelings. In fact it’s good because it makes us vigilant. 

    Well you won’t believe it but… I am a very silly sausage! After fasting for the PET scan I stupidly popped a mint in mouth after my MRI. Completely not thinking. So couldn’t have my PET scan today and now have to go back again on Monday! What a banana I am!!! 

    I was so apologetic, couldn’t believe I’d done it but he said it happens all the time. People just have a bit of chewing gum or a breath mint! So lesson learned!!! Hoping it doesn’t delay my results!!! 

    xx 

  • Sorry, , that made me laugh, although it means you have that bit longer to wait.  You certainly aren't the only one.  When I had my last MRI, I was lying in the tube, eyes tight shut, and after about 10 minutes I became aware of a slightly warm wrist. The horrible realisation that I was still wearing my Apple watch hit, I called for help and the radiographer came immediately and removed it. I was given an ice pack to put on my wrist as apparently burns can take some time to show, but I was fine. I felt really guilty as I was asked several times if I had anything metallic on and said no.  My watch was kaput.

  • You have both made me laugh out loud Prettypinkroses and Irene. Thanks for cheering me up

  • I answered prettypinkroses further down because I thought what she did was really funny, but reflecting on that, I don't want you to think I am being flippant about what you are going through; I had my first session of chemo/radiotherapy today, so haven't got to your stage yet.  Huge anxiety is such a major part of cancer and its treatment, and personally, I couldn't have got through the last year without the help of anti-depressants which went a long way towards me coping with my diagnosis.

    You articulated so well what we all go through at various stages, take comfort from the regulars on here who respond; they know what you are going through.  Sending you my very best wishes.

  • Prettypinkroses

    Thank you, It’s becoming clearer that we all get to feel the same emotions at various times and for knowing that, I’m truly grateful. Sometimes you think you’re a bit crazy. You know, at night. 


    I’ve just had a letter for my 3 month check up at the end of the month, albeit a bit late, so hoping my 6 month scan will still be in April. I’ve just read up on what a PET scan is. Now I understand the issue with the mint! That’s a shame, but at least it’s been rescheduled quickly. On a positive note, you’ve helped others in not doing the same! I’ve only heard this scan mentioned on this site. My consultant hasn’t said it but I presume that’s what I’ll have. I’d be interested to know how it is/when you’ll know etc. 

    I hope that you’re feeling ok and in a good place, and that all goes well for you.