Awaiting start

Hi Cranford, I am 19 months post treatment and after I had the tattoos done ready for treatment I think it was about four weeks. There may be delays due to the nhs situation but I am only assuming. You could try and call the hospital to see if they can give you any information about your start date. Those of us who have gone through the treatment know exactly how you are feeling as we have been through it. I remember being very worried about the side effects and thought they all happened all at once. My first appointment with my oncologist before treatment she was obliged to give me the list of side effects I could get and when she finished I asked her if it was worth it. Basically she said it was my choice to go ahead or not. I never got all the side effects and what I did get were gradual as the weeks of treatment went on. Mine were mainly bowel issues in which you are given laxatives or anti diarrhoea. I got radiation cystitis pretty early on so drank lots of water with cranberry which helped. I don’t want to bombard you with too much information as you will still be digesting what is happening. First thing is get a sitz bath to fit over your toilet which is great for soreness and speak to your team about creams. Come on here and ask anything as we have those who have been through treatment those who are going through treatment and those who are in your position. I hope you hear from the hospital soon which will help you feel less stressed.

Hi Cranford,

I too am a little surprised that they're not moving faster. I was dizzy with the speed with which they hustled me into treatment! I barely had time to get the port installed and all the pre-testing done! 

I gather this isn't altogether abnormal with NHS?

I'd for sure call and see if a fire can't be lit to get you in and going. The sooner the better seems to be the watchphrase for this particular cancer.

It's hard NOT to get anxious when you read about the side effects, and it's good to be prepared. But do try not to freak yourself out too badly. Few of us get ALL of them, and some of us get hardly any at all. The vast majority of us get through treatment and then get hammered in the early days of recovery. Get a Sitz bath for all of your commodes, or better yet, bidet attachments. Don't go crazy on creams and ointments, you don't yet know which ones you need or will work for you. Let your team guide that part. 

I think the most important thing to so is organize your life. Make sure you've got rides to and from treatment if you need them. Some drive themselves all the way through but most of us can really use the help. Arrange time off work, or for your pets to be cared for, or any other details that will allow you to stay focused on the main prize- beating this miserable cancer.

Keep us posted!

suz

You should be on the fast referral cancer pathway so I would ring wherever you were treated first and find out if the referral has been made.  Make sure that everyone has your mobile number and email address so that you are contactable at all times.  The Oncology Department at Bristol seems to be in a different department so I would ring them too - their number is 0117 342 3369.  I am sorry that you haven't been contacted already, the waiting is truly awful.

Please, take it from someone who knows - I was one of those who suffered severe side effects.  I had the most enormous weeping sores from back to front, so much so that the tissue viability nurse asked if I minded being photographed for training purposes.  I didn't mind in the least and the hospital photographer, a lovely warm woman came and took them and they all said don't worry, your name and face won't appear!  And they didn't last forever, the team treating me gave me so much help and support and I had a shelf packed with dressings and creams, not to mention very strong painkillers.  And now, eleven months down the line, I look back and think, did I really go through that?  It was tough, but you DO get through it.  I have given you the worst case scenario with me, BUT there are quite a few on here who sailed through with relatively minor irritation, so please don't assume the worst.  And If the going gets tough, we are all here to help.

Irene xx

PS I am back to walking 25-odd miles a week with my pooch, another thing I doubted would ever happen!

Irene’s points are great. Although most of us have some side effects, it is very individual. This forum is great as there are always folks with similar problems who are happy to help!

Try not to get to worried about the time it takes to get appts, etc. You should check to make sure the referral has been done. All people with a diagnosis of cancer want everything done yesterday; but this cancer is actually relatively slow growing so nothing bad will happen if you have to wait a week or two. When I was diagnosed, the caliber of my stool went down to about a pencil, and I actually worried I would end up with a bowel obstruction, which didn’t happen!  The radiation treatment takes a lot of work on the radiation oncologist’s part, as every person is different and needs a lot of planning to spare adjacent structures excessive radiation. For me it took about 6 weeks from diagnosis to beginning chemo/radiation. I believe they did a great job as I’ve been cancer free for almost a year!

All of us with anal cancer had our fears and doubts about whether going through this was worth it, but for myself, it was worth it, even though I’m older than most of you. I’m happy to have at least some years to enjoy life, hopefully I’ll die in 15 or 20 years from something else. 

Hi all and thank you so much for replies!  I phoned the the referral hospital this morning and asked and she rang me back later to say Bristol want a PET scan and then the consultant appointment.  I then had phone call this pm with date for consultant at Bristol of 21 Feb.  Im assuming the appointment for the PET scan will be later this week.  I'm just relieved to have heard something.  Yes I was worried as the symptoms are gradually increasing since I first went to Dr in November so its good to hear its slow to advance. Don't enjoy going to loo but I guess that will be the norm for a long time now omg. Am so impressed with all your bravery at facing all this and for coming thru it! Thank you for the support! x

Keep a stiff upper lip and take it one day at a time. Remember there are no dumb questions, except the one you don’t ask. We are here in this forum and available any time and we are all in the same boat…

I’m assuming you are in the UK. I live in Las Vegas, Nevada. My ancestors came from England in the 1620’s on both sides of my family. Sussex area I believe. Hence “the stiff upper lip”!

Someday I hope to visit England…

Wow Vegas - my daughter got married there and is returning in May for her 10th anniversary!  Yes I'm in Somerset UK. Beautiful part of UK. Am originally from west London.

Got a date for PET scan tomorrow afternoon so am relieved things are moving along.  Last night I slept the best I have for a month because of the appointment being made!  So I feel stronger now!

Hi Cranford, great news about the PET scan. It will not be long.

So pleased that everything is moving for you now, catch up on sleep!

Sounds like things are moving along for you!  Good luck on the PET scan and your appt with the specialist!  I don’t know if ports for chemo are routinely placed in the UK, but if yes, that will be soon, as well as seeing the radiation oncologist, who will design the radiation for you. 
Keep us posted on your progress. We’re here for you!

Barbara