Newly diagnosed and scared.

Hi Hamfan21,

Firstly I’d like to offer you a warm welcome you to our little corner of the online community, although I’m so sorry that you find yourself here! 

Secondly please be reassured that everything you’re feeling right now is completely natural. Following a diagnosis such as cancer most people go through a whole array of emotions, including anger & often asking ‘why is this happening to me? You’ve described it as a rollercoaster & emotionally that’s exactly what it’s like. You are in a safe place here to get all of those feelings off your chest so please don’t apologise for ranting, it really is better out than in! 

It’s also perfectly natural to be feeling scared & apprehensive about the treatment, I was terrified going into chemoradiotherapy but remember we’re all individual & we all experience varying degrees of reactions to the treatment. For me it wasn’t half as bad as I’d imagined it to be. Personally I had very little reaction to the chemo side of the treatment (mitomycin infusion day 1 of radiotherapy & capecitabine tablets twice a day every day of radiotherapy thereafter), my hair went a little thinner, not that anyone else would have noticed, I took anti-sickness meds for possibly the first 2 weeks but soon realised I didn’t need them & my appetite wasn’t affected at all. The radiotherapy side effects build slowly & can be managed as & when they arise, there’s creams that can be used topically to relieve the skin reactions (similar to sunburn) there’s medication that can help with any bowel disturbances suffered, this is generally loperamide for diarrhoea or laxido or similar for constipation, you’ve mentioned you’ve already had a stoma fitted & although it’s not a choice we’d make most of our members here that have had them done have managed well, I didn’t have one & going to the loo was really uncomfortable, pretty painful to be honest, towards the end & just after treatment had finished! Pain relief, if needed, will also be managed by your oncologist during treatment so don’t be afraid to ask for something more if what you’re using isn’t cutting it! I suppose the biggest side effect of the treatment for me was fatigue, I’m used to being on the go quite a bit & I just couldn’t do what I was used to doing, I took sick leave from work so that when I needed to rest I could & I took a lot of nana naps towards the end of my treatment. 

The pain & the emotional stress you’re under will be exhausting so there’s no wonder you feel worn out. Hopefully now your MDT meeting is done once these PET scan results are back a treatment plan will be put in place & you can start with the demise of this horrible beastie that’s lurking. If you have any questions please just ask, no matter how personal, nothing is taboo here lol, I never imagined in all my days that I’d speak to so many people about my bum & poo!!  we’ve all been there & we have a ton of information, experience & hints & tips between us so don’t hesitate. 

Nicola 

Hi Hamfan, 

I myself have only just started posting on here , but my change in life started 2016 when I learned  i had bowel cancer 

So chin up always here if you need a chat they are a great bunch on here and usually experienced most or all of what you have been through , and will gladly help if they can or try and explain it in more detail 

Take care 

Jimbobs 

Hi Hamfan21 and welcome to the group. Try not to worry too much about possible long term side effects at this stage as everyone reacts differently. That said, it's easy for me to say that to you but not easy to put into practice. I had chemoradiotherapy just over two years ago now and am back to previous activities, walking, cycling and swimming. Right before treatment I had such pain when walking as the tumour had ulcerated. This was difficult to cope with as I was quite an active person. Immediately after treatment I used to be envious when seeing people doing every day things like going for a walk. After a couple of months I  managed to go for my usual circuit walk, I built it up from going once/twice a week to every day over the next couple of months. Then I built in swimming, then cycling. It is hard to be patient and you just want your life back asap. You should be able to regain your previous activities but just build it up slowly after treatment, your body will need time to rest and recuperate.    I hope you get a start date for your treatment asap. Bev 

Thank you all for taking time to reply.  Its been an eventful week for me after spending 5 nights in hospital for a stoma bleed. It turned out after a clear angiogram ct, it was coming from the tumour. I'm now on meds to help blood to clot. By eventful I mean I experienced a massive diarrhea explosion after being given moviprep for my colonoscopy which turns out I didn't actually need the prep and doc told me not to have the 2nd dose! I went through being covered in diarrhea and a nurse stopping on for an hr at the end of her shift to clean me up. Not funny at the time but I laugh now, after complaining. 

I feel so much better in myself. Well, apart from the tumour pain I sometimes feel (sometimes feel like I'm sat on a small ball) which paracetamol or oxycodone helps, I feel ok. 

To help, I'm also writing a journal. I'm pleased I found the courage to post on here and to know what we experience is normal for our situations, and the support on here is amazing. 

Thank you again xx

Hi Hamfan21,

I’m so sorry you’ve had such an awful week but it’s good that you’ve not lost you’re sense of humour, we definitely need to hold onto it with our diagnosis! 

It’s also good that you’re feeling much better in yourself & I think keeping a journal is a great idea, it’s a way of getting all of your thoughts out, good & bad, it stops them clogging up your headspace, many people find this almost like therapy when dealing with a stressful situation. 

Please keep posting here if you find it’s helpful, we’re not just here if there’s a problem etc., I found it helped me to feel that I wasn’t alone going through this. 

Nicola

I'm going to turn the journal into a book called 'Cancer f@!*÷d with the wrong Chick' 

Hope you've all had a good weekend 

X

That sounds like a plan Hamfan21, it’ll definitely keep you busy.…  Within the online community we also have the Ileostomy, colostomy and stoma support group that you may like to join also? Answers to questions you may have either now or in the near future regarding your stoma may have quicker & more detailed responses there if there isn’t a member of our group online that has also had a stoma. I think it would be worth joining there too. 

I had a spooky weekend spent with family I’ve not seen nearly enough of during this pandemic thank you, we went to the cinema on Friday evening to see the new Halloween movie, out for lunch on Saturday then to a Halloween event on Saturday evening at Alnwick Gardens (The Scare Garden) which was pretty spooky & quite funny all rolled into one. It was lovely also to have some little ones knocking the door trick or treating this year, we had none last year at all!.… I know how life can feel an absolute struggle following diagnosis & facing/going through treatment but there’s lots of us here that are living proof that you can get your life back however difficult things seem right now, so don’t lose hope just focus on getting through this next stage (treatment) then your recovery begins. 

Nicola