Hi Dolittle, 

Thank you for posting a question for the nurses.

The nurses normal operating times are Monday – Friday between 9am and 5pm. Ordinarily you would receive a response from a nurse early next week. Unfortunately, we will be carrying out some essential maintenance on Cancer Chat throughout Monday and Tuesday so the forum will be unavailable until Wednesday.

Please rest assured a nurse will respond to your post as soon as they can but if you want to speak to a nurse in the meantime, they would be happy to take your call. They can be contacted on freephone 0808 800 4040, Monday to Friday between 9am to 5pm.

Apologies for any inconvenience caused.

Kind regards,

Steph, Cancer Chat Moderator

Thankyou

Hello there and thanks for posting

I'm sorry for the delay in getting back to you but as Cancer Chat has been down for a few days we couldn't post this back to you any sooner.

It does sound like you have had a long wait to be diagnosed and get your treatment started but it seems the ball is rolling now so hopefully not too much longer.

Every patient is different and what one person needs will be different to someone else. I don't think anyone here can say exactly why you got a visit from a nurse. Try not to read too much into this and see it rather as a positive in someone looking out for patients. If you or any other patient did need equipment, support or help now or in the future, to have a contact number of where to go could be really useful.

Wishing you all the best and do get back in touch if needed or give us a call on 0808 800 4040, weekdays 9-5 if you prefer.

Take care

Naomi

Utterly shocked and feel let down,Ive had PET scan,and met with the consultant ,signed my consent forms for a planning meeting for my radio therapy and chemo for this Monday so feeling great things are finally moving WRONG..they requested another MRI which I had the other day,so aswell as receiving my questionnaire for my Monday planning meeting,I then get a phone call saying my tumour as grown (my first MRI was February!)so I wasn't really shocked it was a 3 now a 4.So here it comes  they would like me to meet stoma nurse and discuss stoma,because when they start radiotherapy the tumour will swell and and they don't think I will be able to use my bowels.So I was in total shock ,there's me thinking finally starting treatment and their saying it's what hospital can do it first my hospital or the one I was expecting to have my treatment at,So....I asked what about my planning meeting on the 19th..they didn't even know I was going for it,it's ok them saying sorry ,we know how long you've waited (blaming admin)communication between two hospitals..etc but sorry to say,I've remained cheerful,positive,done and gone everywhere I was asked to,to now feel back at the beginning of my journey January!So got to wait for a phone call re stoma,then op then recover so probably another month at least before treatment can start,and as for my chemo radiotherapy planning meeting in 3 days time they will let me know if I'm still going,so sorry for the negativity but  I'm not to impressed at the moment,and I'm not chasing phonecalls anymore or sitting on my phone for calls that don't come,hopefully they'll phone,hopefully I'll get my treatment and by the time I do hopefully it's not grown and gone into my lymph nodes,Sorry about this post but guess I'm the unlucky one.Yes the two week referral worked had CT MRI and a failed colonoscopy,the explanation I got about the slowness was "unfortunately what you had done was quick but not in the right order*admin*etc sorry feel let down

Hello Dolittle and thanks for the update,

I am very sorry to learn about what has happened. Changes to planned treatments are usually upsetting, but further delays when you have already been waiting a while are even more so.  I can understand you feeling shocked, let down, and despondent - I think most people would feel this way in the same situation.  I hope it helps a little to express how you feel and let off some steam here. 

I am not sure that there is much you can do other than to go along with the change in plan. But you might want to consider contacting the Patient Advice and Liaison Service (PALS) at the hospital to raise a concern and even consider making a complaint. The NHS website has more information about what PALS does and how to contact them here. 

Coping with having to wait and accept things that are out of your control can be very stressful, I hope you can find ways of managing the stress and that you have plenty of support. 

Please do give us a call if you ever want to talk something over. Our number is Freephone 0808 800 4040 and we are around weekdays from 9-5.

Wishing you the best,

Julia 

Thanks..I've had a couple of phone calls today.A surgeon should phone and explain the stoma ..My consultant spoke to me my notes only arrived with her last week,so obvious some failure in two hospit s communicating Up to now my promised call as not arrived 5.20 pm.The icing on the cake was another letter telling me my chemo (one hour first appointment 3 rd of July,with some blood tests 3 days b ore..that didn't help.so still waiting .I don't think I'm being unreasonable I wouldn't be faced with a larger tumour,and needing a stoma had the system worked.,but I don't feel as annoyed as yester y the NHS is great when it works,but unfortunately it's failed me,but that doesn't mean it won't all work out in the end although not as expected,ẞo my positive side of me is kicking back in .despit no phonecall..

Next part of my journey...Well I found out I needed a stoma on the Friday,and went to hospital Monday 19th.(The day I should've been having my radiotherapy planning with treatment starting on the 3rd July)It was explained to me my cancer as grown so I'm now a 4 not a 3.My scans done in Feb now out of date ,so new scans done. So unfortunately in order to have treatment had to have stoma,the treatment would swell my cancer and I may not be able to poop,then they'd have to stop treatment,so it was a SHOCK but a no brainer..So Stoma it is.obviously it's a life changer ,but if it helps me live and get through my treatments it's a small price to pay.So had Stoma Tuesday,Friday proved to stoma nurses I could change,empty,clean etc,and finally went to radiotherapy planning to get marked up for treatment,then Discharged..so despite having a suprise stoma,my treatment starts one week later than originally planned.So I hope to be able to post my progress,as for my little suprise stoma,after 4 days I keep forgetting I've got it.So anyone worried about a stoma,don't be, my feelings(now I'm over the shock)is..it is what it is,and if it helps me get through the next part of my journey,that's what counts..Do I feel ill NO,am I coping YES

Hi Dolittle, and thank you for updating us. I'm sure your words of encouragement and support will be so helpful to others in similar situations to your own.

Take care and I hope your journey continues to go well.

If you find you want to talk things through with one of the nurses on our helpline the number is Freephone 0808 800 4040, open 9 till 5, Monday to Friday.

Sarah.