Hello what to expect!!

Hi Nikki,

I’m sorry to hear of your diagnosis…most of us here will tell you the time between diagnosis and beginning of treatment ranks amongst the very hardest times to endure in this cancer passage. However, I’m glad you’ve found this forum—it has been a blessing to me (all the way in Texas), and I hope you find comfort and support here, also.

As for what to expect, I think there is such a spectrum of reactions to the treatment protocol, and in fact, there are even minor differences from one treatment plan to another.  I, too, had 25 radiation sessions, but that was combined with weekly cisplatin chemo infusions and a chemo pump of 5-FU worn 5 days a week.  I’d say I experienced fatigue and some bathroom/bowel issues and discomfort until about the 3rd week AFTER my last radiation treatment.  For the most part, though, I was able to function in daily activities, be present for my family, enjoy outings (limited due to COVID), and even exercise regularly.  I recognize I was fortunate to find myself on the “mild” end of the side effect spectrum.

My chemo radiation ended nearly a year ago (end of Jan, 2022).  I had a surgery in March to address liver mets (which were dead when they removed them…YAY!) and I was declared NED in April.  The side effects have gotten steadily better, and I actually feel very much like myself again.

Very best wishes to you as your tests conclude and treatment begins.  We are here as you need us.

Red

I should add, on the practical side of things—sitz bath, Epsom salts, coconut oil, aloe vera gel, and Miaderm were all things that helped me through the chemo-radiation.

All diagnoses are different, so check with your team to ensure these things are safe for you, but this gives you a starting point for the self-care and recovery parts of treatment!

As for now, take the very best care possible of yourself during this “wait”—eat well, hydrate thoroughly, practice good sleep hygiene, and exercise if you’re able.  I tried to enter treatment in the best possible condition for myself—I figured it could only help!

Good thoughts your way!

Red

Hi Red 

Thank you so much for your kind words of support and advice all taken on board … 

I am already a sitz bath advocate as having been living with what I thought was a skin tag for Six months before my diagnosis ( COVID delayed diagnosis) 

I m most nervous about being sore uncomfortable and in pain but your message has made me hopeful that I also will be hopeful only experience mild side effects. 

i am Struggling with exercise as feeling tired a lot I believe I may be pre menopause as well (great timing) 

but eating well and walk every day with my dog.. 

I will check with my Doctor about your suggestions but the holistic nurse already mentioned Aloe Vera 

This forum is so helpful to speak to people who have experienced what I’m about to go though ..

so pleased to hear you are doing so well 

thanks again hope to speak again 

Nikki

I am sorry that you have had to find us but I am glad that you did - I found the advice on here invaluable.  I am sure there are lots of really good cancer hospitals out there but my experience at the Royal Marsden was exemplary - the only time I ever had a long wait (over an hour) was for a blood test as lots of nurses were off with COVID.  Other than that the whole place ran like clockwork, I was in and out of radiotherapy in well under half an hour.  The staff are so caring and always introduced themselves by name and took great care in putting me at ease.  I forget, the wait at the pharmacy can take a while but they have a very efficient queuing system that lets you know how long your script will be and you can go for a coffee.  I had quite severe side effects from the radiotherapy but the staff were on it and I was literally inundated with lotions, creams and dressings and weekly check-ups. I was checked frequently to see how my skin was bearing up and was dosed up with pain killers.  You already have the staple (the sitz bath) which I couldn't have done without, in the early days I used it for bowel movements under warm water, it was less painful.  During chemo/radiotherapy I had constant diarrhoea but the minute I finished the chemo tablets the pain relief gave me constipation and a month after treatment ended I stopped everything apart from paracetamol and ibuprofen.  But my reaction was a lot more severe than others on here, you might well find that you sail through!

It might be a good idea to buy some TENA incontinence briefs for use towards the end of treatment.  You may well not need them but if your tummy is a but dodgy it is one less worry.  And a cushion to sit on, I don't know how far you are from the hospital but you may find you are feeling very sore and need extra support if travelling by car.

Wishing you the best of luck, please come back and let us know how you are getting on.

Irene xx

Irene 

thank you for taking the time to respond i do appreciate your support and advice very nervous about treatment starting but figure one day at a time. 

I will update soon 

Nikki 

Hi Nikki (NikJ18 ),

Welcome to our little corner of the Macmillan online community although I’m really sorry to hear of your diagnosis. 

You’ve already had some great, encouraging responses to your post so I’ll not go over things but I just wanted to say we’re all here to support you throughout your diagnosis, treatment & beyond. The feelings you have about starting treatment are completely natural, I remember it so well, I was traumatised, it’s entering into the unknown & that’s a scary feeling but what you’ve said in your reply to Irene is so right just try & take one day at a time. There are common side effects to expect throughout the treatment but everyone’s experience is individual & although being practically prepared is good try not to preempt them happening, tell your treating team if you have any issues they have lots of lotions & potions that can be prescribed to help skin reactions etc. 

Please don’t hesitate to ask if you have any questions.

Nicola 

Hi Nikki,

I too joined this group not long ago after a diagnosis of Squamous Cell carcinoma after having a skin tag removed in November. I am yet to start treatment but have my first visit with the Radiation team on Wednesday the 4th of January. Spoke with the Oncology team on19th December about treatment. My tumor is 3cm in length and is near the anal opening. Treatment is the same, with the first visit Radiation and Chemo. Then 6 weeks (no weekends or public holidays) of radiation and Capecitabine tablets twice daily. I am also lucky that it hasn't spread I have read numerous responses and am happy to hear that everyone seems positive and very helpful.

Everyone's journey is different but positive. Glad to have you on board as you are a newbie like me.That is, we are in the unknown and really don't know what to expect. Look forward to hearing from you again. I will let you know how long a session of radiation I will be having and what happens next. I live in Angle Vale South Australia and there are no online forums like this. Take care and we will talk again.

Sue

Hi Nikki,

I started my journey with what I was told was just a skin tag too! But it took 2 years from that little snippet of knowledge for it all to be discovered.

It looks like everyone has done a great job letting you know what to expect. You're ahead of the game by finding this forum before you start treatment. I wish I had!

If at all possible, line up rides to your treatments for the last couple weeks of treatment and first few of recovery. Also someone to walk your pup for you. You may well end up on the milder end of the things, but if not, you want to make the tough weeks as smooth as possible. 

This is a very beatable cancer. Go forth and kick it in the teeth! (We can't really say 'in the ass', now, can we?)

Hugs

Suz

Hi Sue 

great to hear from you sounds like we are are dealing with very similar issues .. 

I wish you well with your treatment and looking forward to hearing from and speaking to you again very soon 

All the best 

Nikki x

I have a brain fog at the moment having to write lists suspect I am pre-menopausal as I am now 48 years young … 

grateful you responded good to have anyone give me there’s advice and experience…

I have a friend who will walk the pup will get that in place as as soon as I know when treatment is starting…I will also think about lifts to hospital as treatments go on… 

I really hope we can both conquer this and yes kick in the teeth much better way to put it ! Lol  

big hugs speak soon 

Nikki