Newly diagnosed

Hi Jane (Popjar),

I’m sorry to hear you’re feeling stressed. How strange for your sister to just all of a sudden say she won’t be supporting you in any way throughout your treatment! Bizarre doesn’t cover it really does it? 

I was incredibly lucky that the NCCC where I was treated has the support of an incredible local charity called Daft as a Brush, it’s run by volunteers & has a fleet of mini buses/cars to provide transport for anyone undergoing cancer treatments. I was advised to make use of this & booked transport from week 2 of treatment. In hindsight I could have driven myself throughout! I’m only around 20-25 minutes away from my treating hospital though. All of my appointments were after lunchtime & any urgency I had for the loo tended to be first thing in the morning. I was also made aware that I could purchase a parking permit that covers all of the Newcastle hospitals, this cost me £10 in May 2018 & lasts for as long as you need it, all they ask is that you don’t abuse it, I still don’t pay for parking for scan appointments or check-ups etc., parking charges can really build up if you’re there every day for treatment.

I would look into the hospital transport, get a little more information, lots of people use it. 

I do hope you get sorted soon. 

Nicola 

Mine started quite quickly and I was caught unaware as not expected but it is erratic which is the problem, fine for days and then it comes. It’s the lack of warning that is the difficulty for me and still is at times. I guess related to diet too but I still haven’t worked out what!!! 
Hope it goes well for you Jane and the driving too. Ruth 

Hi jane

sorry you are having to go through treatment but this is a great forum for advice about how to manage symptoms and lots of support so welcome. Just remember every journey is different and you would be very unlucky to get all side effects though some are more common. Your cancer team will be there to offer you medical ways to deal with pain and side effects so when they ask you how you are feeling be honest that’s the only way they can help. 

I am coming to the end of my treatment. 5 weeks complete and just the half to go. It’s not fun but it is manageable and just focus on getting through it and all the the things you can do after treatment is complete. 

easy for me to say but don’t worry - you can do this!

Hi,

My sister is quite controlling and was trying to take over a lot of things, but as I told her I need to be in control  but will need her support and help as with other family members. So now she’s stepped away, but I cannot focus on that .

I have spoke to the hospital transport and they can get me a lift anytime which is a big relief. 
Thank you all again for the advice and support.

Jane x

Hi Ruth

Thanks 

x

Dear Jane

I am so sorry to hear that you have anal cancer and the stress you are having regarding your transport to the hospital. Only a few weeks ago I was in the same position as you, worrying about if I would be able to get myself to appointments or if I would need support. It’s the not knowing that causes so much anxiety. I can honestly say that I wish I hadn’t stressed to much as once you start treatment it all seems to fall into place. I am now at the end of my fourth week of treatment and have managed to get myself to all my appointments. I have a 20-minute walk to my train station and a 30-minute train journey into London. I was having bowel problems before treatment, so was very stressed about the possibility of not being able to find a toilet in time.

My appointments are just after lunch, so I have been lucky that most of my bowel movements have happened in the morning, although that’s not always the case. I take plenty of wipes with me, a change of clothing a couple of pads and hope for the best. I try not to stress and have made a note of where the toilets are on route. Once you get into a routine and manage your first few days you will get more confident I am sure. I have got away without any mishaps as yet!

I must admit, I think I have been quite lucky so far as I have only a tiny amount of soreness and a bit of pain when passing bowel movements. I felt much worse than this after my EUA’s. I keep as active as I can and day each day as it comes.

Keep a bag in the car with all the necessities and try not to worry. Just be proud of your self as you manage each day and you should be able to manage this hopefully without support.

I have been fortunate as my family has offered to help, but I have not really needed this so far. I did not think that I would get to this stage and feel as capable as I do. I am still working, cooking, cleaning, exercising, shopping and dancing. I pace myself when I feel I need to but honestly do not feel that tired right now.

We are all very different and cope in different ways. You will not know how you will be until you start treatment, so worrying will not change anything. What you can do is take control of what you can. Prepare yourself by taking advice from this site and making sure that you have everything in place. Keep busy. Get on top of all those jobs that you can do now, enjoy life and try not to worry.

I know that I am now getting towards the most difficult part of my treatment and recovery, and I do not know how badly I will be affected but I feel much stronger now than I did when I was pre treatment like you are. It’s really not as scary as it sounds, so please try not to worry. We all get through this eventually and I am sure that you will be able to do this with or without support.

Best wishes

Serena

Hi Serena,

Thats exactly how I feel right now, just have so much going round my head. I know I can do this and am usually a strong and Independent person but this has thrown me completely. But reading all the positive comments has made me realise that when I start my treatment I will probably settle down.

You sound so amazing and positive like you all do and hope that I can take that all on board.

I think it’s the unknown that’s scary for me as it must be for everyone who has been diagnosed.

I had visions of having to stay at home, not going out and being alone. But now I know that’s not the case, life has to go on as normal.

Good luck with the next part of the treatment and hope your recovery goes well.

Your right worrying won’t change anything and I need to get a grip of myself. 

Thank You all

Jane

Hi again Jane (Popjar),

Yes I totally agree with you needing to be in control of things & with not focusing on the negativity that’s going on with your sister right now. This is YOUR illness & YOUR treatment. It’s great if family/friends choose to offer their support at this time & it’s important that you have someone to talk to when needs be but I went through much of my cancer journey alone due to living the other end of the country to my family & I found I was absolutely fine. We’re always here for you. 

Great news about the hospital transport too! 

Nicola

Hi Nicola, 
Hope your doing ok. I am getting ready to start treatment on Monday and to be honest as the days tick off I am getting more nervous. I have sorted my transport out so that’s one less problem. 
I am panicking about what’s the best food to have in, my diet is a bit hit and miss and not sure what to have in. I have read all sorts about what to have and not have and I am confused as to what I will need. Should I just get normal food that I would eat. I realise that I could have bowel problems and will need to change my diet but just panicking g as to what ti have in. 
Am I just overthinking it all. Would really appreciate any advice and help. 
Goodness knows what state I will be in on Sunday.

Thanks 

Jane 

Hi jane

i asked my consultant this question too. His view and the view of my cancer nurses is eat normally that way they can tell if it’s the treatment affecting bowel movements rather than a new diet. You will manage as you go through to see if different things affect you or not. So for me too much bread lead to constipation so I just ate less of it. Easy to say don’t stress but don’t. For the first 2 weeks or so of my treatment I had no side effects at all (and felt a bit of a fraud as everyone was so worried), week three things changed so depending on your treatment you may feel fine for a while.

good luck

and we are all sending positive vibes. 

d