Struggling

Dear Deb,

We have all been there & really feel for you, especially feeling so scared. Yes, it is scary & it is horrid, but you can do it. We have all come through it. I had an unusually severe reaction to the radiotherapy, but here I am, one year later, all clear and it all feels like a bad dream. I am living my life to the full & enjoying life to the full. 

Grit your teeth, hang on in there. It will end, it is not permanent. You will probably be cured. We are all with you, you can do it. 

I wrote a naughty blog blogfromuranus.blogspot.co.uk If you are broad minded, it might give you some light relief. 

Very best wishes, stay strong,

Pam 

Dear Deb,

We have all been there & really feel for you, especially feeling so scared. Yes, it is scary & it is horrid, but you can do it. We have all come through it. I had an unusually severe reaction to the radiotherapy, but here I am, one year later, all clear and it all feels like a bad dream. I am living my life to the full & enjoying life to the full. 

Grit your teeth, hang on in there. It will end, it is not permanent. You will probably be cured. We are all with you, you can do it. 

I wrote a naughty blog blogfromuranus.blogspot.co.uk If you are broad minded, it might give you some light relief. 

Very best wishes, stay strong,

Pam 

Hi Deb I remember the few weeks before treatment started I had the worst anxiety ever I remember saying the cancer hardly bothered me but the anxiety symptoms were crippling. Once I got started the symptoms disappeared and I just went with the daily radiotherapy easy for the first few weeks then the last was a bit tough.

3 years later the anxiety still rears it’s ugly head but I know it will pass and it does xx

Xx

Hi Deb,

I'm so sorry to hear that you’re struggling so much. The anxiety surrounding a cancer diagnosis, scans, treatment & recovery is really difficult, the mental impact of going through this can be as bad as any physical impact for sure. I can only speak from my own experience but the thought of entering into treatment was definitely worse than the reality, I consider myself a pretty strong person but I was terrified & felt sick with worry about the physical implications of this treatment. Everyone’s body deals differently with the effects of the chemoradiotherapy, a lot of the symptoms are the same but to varying degrees. It may not feel this way at the moment but you will settle down somewhat when you start treatment. I think this has to do with the fact that once started you have to relinquish some control & I was in the mind that ‘well I’ve started this now & have to see it through’ kind of thing & as difficult as it is just try & keep that end goal in mind, you want to be cured & get some normality back. 

Like you have mentioned I used the 2 weeks prior to treatment to put things in place so that if I didn’t feel like doing much throughout treatment then I didn’t have to, although the reality is until the very end I carried on pretty much as normal, apart from being off work, & found really the only change to routine I had to make was I had a nana nap on an afternoon as I was a bit fatigued. 

Maybe you could give the Macmillan helpline a ring as they have trained advisors that may be able to offer you some support. 

Did you decide to join the Plato Trial? 

Nicola x

Hi Debh1

I really feel for you I do. Its times like this when I wish I lived around the corner so I could pop in to see you.

This limbo period really is the worse time. You’re brain is still trying to process the enormity of the situation and you feel totally overwhelmed. All to be expected and I to remember feeling scared, lost and like I was frozen in time whilst everything was going on around me.

I will reiterate what everyone else has said because its true. How you are feeling now is temporary, it will get better when your treatment starts. Right now you have time on your hands and your mind will be taking you to dark places. It can be very hard to get motivated to do anything, your thoughts can take over completely. When you start treatment, you will have a focus and a purpose. You will be fully emersed in getting through your treatment and ticking off those days. The treatment is short and accumulative. You probably won’t notice much change during the first two weeks. You’ve read about what side effects to expect but you won’t know how you’ll react until you’re in the treatment. Whatever happens you will have a supportive medical team ready with lots of advise and medication should you need it. They will not let you suffer.

Its very scary but you have to remember the end goal, to get rid of the tumour and save your life. The treatment is very effective and the majority of us have good results. You’ll have an even better chance as you’ve opted for plato.

In the meantime, you must try to organise and prepare yourself. Maybe write a list of everything you need to do and aim to tick of 1/2 things off a day. This is what I did and it helped, if anything I swung the other way and became super organised, typing up rota's for my kids and buying way in advance birthday presents. I can give you advise on the sorts of things I did and bought in the lead up to treatment if you wish. For example, you should visit your dentist if you have’t done so already. Just to make sure you’re teeth are all ok, you won’t want any problems to arise whilst you in treatment. 

I also tried to do some nice things with my kids and get out in the fresh air as much as possible. The thoughts and anxiety were still there following me around like a bad smell, but I was doing stuff and achieving small things so the thoughts didn’t take over as much.

You mentioned previously that your hospital could offer you some emotional support, has this transpired? as Nikki says you could also call the Macmillan helpline, talking to someone impartial can really help.

Did you contact the Anal Cancer Foundation to join their peer to peer programme? I would really urge you to do this as you’ll then receive one to one support on a daily basis if needed. Having one person to go to can really help. Maybe this could be your aim for today:

https://www.analcancerfoundation.org/find-support/patient-support/connect-with-a-peer/

Deb, you will find ways to cope and you will get through the treatment one day at a time.

We are all here ready to support you and give you advise.  

Sx

I think we all relate to that Deb. Everyone I have spoken to says they felt disconnected from the world. Everything is on hold. I am still in that mindset.  It will actually help you to focus though when your treatment starts.

I was super anxious like you as I've said. 

You honestly do feel better when your having the treatment. 

You have a routine and your looked after.

I used to have meltdowns about coping with symptoms too but I'm into week 4 now and I relatively unscathed. I have good pain killers and am still functioning. Sat watching TV most of the day. Could be worse.

Best advise is to take things one day at a time.

You will be able to cope.

Ian x

Hi. You have just described how most people feel. You are definitely normal to feel like this. The waiting is awful. Just awful. But somehow you will get through it. Once you are having treatment it isn't nice but at least you can count the days off and like the rest of us you will find inner strength. Never thought I would but humans are amazing things in how we manage. Good luck. Cocentrate on nice thoughts

Susie x