Some questions

Hello Jo,

Yes, it certainly is all  a stressful time, especially at the start when you are so unsure of what the routine is. But don't worry - rant away. This is the best place for it.

I didn't really have a 'treatment team' either, but I suppose I regarded the radiotherapists as my support as they are the people I saw most. They did ask me every day how I was doing and feeling, and gave me the biggest tube of cream I'd ever seen, so I felt they were my team. They even checked my bottom towards the end of the treatment to see how the skin was doing. You could perhaps ask them next time you are in. if they can't help, they should know who can. Otherwise use the Mac nurse for now and see what she suggests.

Sorry, but I don't know why you are having the antibiotic; treatment plans are so different from hospital to hospital but I'm sure someone will come along who has had the same.

Let us know how it goes with you. All the best - before you know it, you'll be at the end of your first week and able to enjoy the break. x

Hi Jo

Welcome to this fantastic group you will always have someone who can answer your questions as you go through your treatment they are just the best. I am almost 3 years post treatment now and still pop on now and then and noticed your post.

I too was given antibiotics actually from the first day for the full treatment. I was treated at Sheffield.  I wasn't keen on taking them for so long and was allergic to the first one prescribed but they insisted saying it was a precaution against infection. Must be different hospitals treatment plans.

I did see a radiotherapy nurse weekly and a Consultant half way through treatment both examined me and i was given creams so hopefully this will happen for you as you need reassurance through this anxious time.  My radiotherapy nurse still rings me 6 monthly!

Wishing you all the best and you will get through the other end! Just ask this group when you have any worries.

Carole x

Hello Jo,

 I think you are right to check this out and you definitely don’t sound like you are ranting. I found from this forum that people seem to have very varied levels of support depending on where they are treated.

 I came to the forum quite late in treatment and was genuinely surprised to hear about these support teams as I didn’t seem to have one! The only interaction from my radiology team was to ask me each treatment if I was ‘ feeling full’ meaning had I drunk enough water. They did check my skin on week 4 and gave me a small tube of cream but nothing on week 5 or at the end. I learned more from this forum than anywhere else and am so grateful for that.

I imagine they assume your skin will be ok at this stage of treatment but don’t hesitate to tell them if you’re getting sore. 

I did see the Oncologist on week 2 and week 5 though. I knew I could phone the MacMillan nurse if needed. Hopefully you will have some appointments sent out. 

 I wasn’t given any antibiotics and I hope you can check this out in your call tomorrow. I do know that protocols vary. 

Good luck with the rest of the treatment. Starting is a relief but also quite overwhelming while everything is so new and unfamiliar. Xx

Hello Jo

You aren't ranting in the least, and we are all still learning too - me from your post about antibiotics!  Different hospitals have different protocols for treatment and I hadn't heard of antibiotics as standard until now.  I suppose it makes sense in that you are covered for urine infections and the like, but I am second-guessing here.

I didn't see a nurse but saw an oncologist weekly who would check my skin and prescribe anything I needed.  I was told to call if there was anything I was worried about and someone would get back to me, and they did.  So it sounds as if your first appointment will be next week, it would be a good idea to ask then who you should contact if you have any worries at all, but they may confirm that when you see them anyway.

I only spoke with the radiotherapists when I went in for my session, but not at length.  It was the oncologist who was my main contact.  But in the meantime I would ask one of the radiotherapists at your next session who to contact if you need help or advice (and their number).

Please let us know how you get on.

Irene xx

Hi Jo (Dahlia68 ),

Please don’t feel the need to apologise, it’s a particularly stressful time for you at the moment. When I speak of a ‘treating team’ for myself it consisted of my oncologist, colorectal surgeon & my radiotherapy team, I luckily saw the same team of radiologist ladies every day & the first thing they would ask me when I arrived for daily appointments was ‘how are you feeling today’ this gave me the opening to air any concerns I had to do with my skin or anything else I had going on at the time. If they thought it was something that my oncologist should be involved in such as pain relief decisions etc., they would contact him on my behalf. My radiotherapy team supplied cream from day 1 & changed the creams as my skin reaction progressed but I think the stronger creams came through my oncologist. I hope your radiotherapy team are a bit more forthcoming as time goes on & that your appointment with your MacMillan nurse goes well, be sure to make her aware of the way you’re feeling.

Nicola

Hi Jo

Please don’t feel you’re ranting it’s a very stressful time and I like you found it a little confusing at first.

As others have said protocols do vary between hospitals, so I can only give you my own account and I apologise if it’s a little long but it should give you some idea of how other hospitals deal with the treatment.

Like you I didn’t meet a team so to speak, I saw the Oncologist at the 1^st hospital appointment and also at that appointment the specialist nurse introduced herself and gave me a phone number and the names of 3 other specialist nurses in case I needed to speak to her or one of the others, this was for non-urgent calls as they would have to ring back she said. I haven’t seen her or spoken to her or one of the other specialist nurses since then.

On the 1^st treatment day at the chemo session I was also given a big bag of meds but unlike you I was given a large tub of Zeroveen cream, I did ask the chemo nurse when it should be used (same for the other stuff like the mouthwash) and was advised to read the label, the label said apply as necessary. Now if it wasn’t for this forum I wouldn’t have known about when to apply it and when not to apply it, I didn’t get any feedback from the hospital on the subject until I specifically asked the Oncologist about it.

At my 1^st radiotherapy session the radiographer told me I'd be doing bloods each Tuesday and I’d have a clinical review each Wednesday (after the bloods are back), the clinical review dates where all on my timetable but they didn’t have a time allocated to them, instead each week I had to sit in a different waiting area and the Oncologist or radiographer came looking for me and we went into a consulting room for a chat and skin examination but only weeks 4 to 6 for the skin as I wasn’t having any issues with it.

1^st week I had no clinical review, 2^nd week saw the Oncologist who said "this is the honeymoon period" when I reported no issues, 3^rd week I saw a very nice radiographer who introduced herself as being part of my specialist team, she wasn’t one the many radiographers who did the treatment each day though, 4^th week I saw the Oncologist again, 5^th week I saw the radiographer, and the 6^th week it was the radiographer but the Oncologist came in at the end to wish me well, got to say the radiographer looked a little puzzled at this so I don’t think it was standard practice?

When I went for my 6 week review last week it was another one of the radiographers who was part of the review team.

The radiographers carrying out the treatment did ask me how I was doing each day, at first I thought they where just making polite conversation and was a little surprised when one day one asked me if he could give me something when I said I hadn’t slept very well and was a little tired. After that at each and every clinical review I was told if I had any issues (non-urgent), needed more pain meds or creams I could speak to the radiographers carrying out the treatment and they would deal with it.

I have to say all the radiographers I saw throughout treatment where really good, really helpful, really nice and they do so much more than just operate the machines.

I wasn’t given the antibiotics as a precaution like you but when I reported some pain with peeing I had a sample taken and they detected a very minor infection and the week after put me on the antibiotics to prevent it developing.

Keep ticking those days off you're nearly one week down now and in no time at all it will all be behind you.

Monty x

Hi Dahlia68 

Brilliant news that your treatment has started, one step closer to getting your health back. I was given antibiotics from day one although I didn't take them straight away as in my head I wasn't antibiotic sick so didn't need them, one of my nurses who was lovely but bossy soon put me straight. She said the last thing you want is an infection and have to pause treatment. So I did as I was told. I saw a senior radiotherapist weekly ( probably what you have called a quiet room appointment) she looked at my skin, told me my weekly blood results and just saw generally how I was coping etc. She gave me creams and told me to just ask each day if I needed more. As for the initial skin care I was given a lot of literature to read at the beginning with all the info. Sending hugs. Xx

Thank you all for your really helpful information. Cancer is such a a lonely place to be, especially such an uncommon one where it is unlikely that you will ever meet someone else with it (not face to face anyway).

Sitting in the waiting area at the hospital waiting to be zapped is so alien and you just feel like you are on a conveyor belt so to have a friendly face checking in with you would be comforting. I guess it's early days for me, I'm in that ,'honeymoon' period, although not any honeymoon I'd choose to go on!

I'm just a bit down about the whole thing but onwards and upwards with each day getting closer to the end.

Thanks again all xx

I found as the days went by I kind of got to know the radiotherapists, even the receptionists in the department would recognise you. While its not something you want to get used to you do it all just becomes your daily routine. Keep counting those days. Xx

Hi Jo 

It makes me really sad that you don't feel properly supported and that you haven't been given much information or even creams! 

I had a number to call for the colorectal nurses, who would call back. Once treatment started I had regular appointments with a nurse who would check my skin and how I was doing, plus I could request to see them at any time if I had any concerns or symptoms I was unsure of. It was a good job I had this option too, as I had some minor complications that needed further treatments. As mentioned above, perhaps these quiet room appointments are where you will be checked over and get the chance to ask questions? I would say, if there's ANYTHING that you experience that doesn't feel right or is worrying you, approach them about it at your radiotherapy appointment. It's so important to ensure you stay well throughout this and some of us have different reactions that need monitoring or additional intervention. 

I was also given a red card to show at a+e if I needed to attend, to make them aware of my chemo and what antibiotics to give me if I needed them. I didn't have to take antibiotics throughout tho, just for a week due to a UTI and I had one IV at a+e. So maybe that's why you don't this.

It's good that you are here, because there are so many people who can help you and give advice when you're worried. 

Have you got yourself some cream? I had E45 which I smothered everywhere from the start... when my skin became more sore, I was given a steroid cream for my back passage and coloid/cooling gel for other areas. I also had lidocaine gel which was so helpful once toileting became painful. Little tip for you, if you can get the cooling gel; I found if I put a thick layer all around the area before peeing, it really helped take off the initial sting. You may or may not get to this point, but it made going much easier for me when things got bad. Using a peri bottle whilst going for BMs/peeing or immediately after was also soothing.

Anyway, best of luck going forward. The time will fly, although it feels like a huge mountain to climb right now... and come back to ask anything here, any time you need! We're always here for you. 

Jenna xx