Still Struggling

FormerMember over 5 years ago

4 replies
119 subscribers
1566 views

Hi Again

For those who don't know me I had a low anterior resection in Aug 2017 for a mucinous cancer of the rectum, a temporary ileostomy, adjuvent chemo and reversal in May 2018. I have five lung nodules spread between both lungs since the Feb 2019 scan and I am still waiting to have them confirmed as mets and start treatment. All this waiting is driving me nuts. The lung team reviewed me 4 months ago and said that the largest nodule was too deep and small to be certain of hitting it during surgery. I had another scan last week and I have chased the colorectal team who said that they are still growing and it is up to the lung team to reassess the latest scan and decide if surgery is now an option. The lung MDT meeting should have been yesterday but I am not sure if I was discussed. Four months ago when I chased I discovered that I had not been formally referred which was rectified once I pointed it out. The letters say that I need to be re-referred but my specialist nurse said that was not necessary as the lung team would be following it up. As usual it is just so bloody vague, no one seems to proactively contact me and I feel uncomfortable going over the head of my CRC nurse team to verify the truth of their pacifying statements. It doesn't help that patients are not routinely copied into the correspondence from the lung team.

I am scared that I will slip through the net and no one is actually looking at my latest scans. I am scared that my surgery and treatment may be delayed by the corona virus. I am scared that my cancer is incurable (multiple tumours in both lungs are usually designated incurable) and all I will have is chemo until it stops working and I die. I am scared that as my tumour is mucinous and MSS then chemo, radiotherapy and immunotherapy will not work.

I am not sleeping well, I am on the waiting list for counselling with an estimated wait of two months, I have good days and tearful days. My husband was recently made unemployed and universal credit is a nightmare of waiting. I have got myself a sick note but I will have to start job hunting when it runs out. Sorry for going on for so long but should i trust them and sit back and wait for a decision? Chase it all again and risk upsetting my team and be classed as neurotic? I don't want to destroy relationships with the team as I might be under their care for the rest of my life...

Any advise on how to wait patiently, gratefully accepted.

process over 5 years ago

Hi Nicky I’m so sorry to hear your dilemma and anxieties they all mount up don’t they and I hear your doing your very best to hit back against them and do what you can.

for me I like you can’t sit back and I have taken the stance that I will ask questions and be gentle but persistent too, I don’t think your being a nuisance let the team know it’s effecting your mental health it’s the not knowing that creates more anxiety once we know things somehow we start to process and deal better.

i found for me I get a better response via email it’s documented then that you chased and as my daughter says if those at top respond grest if they don’t and get someone in the team to it’s still a response.

my thoughts are with you xxx

Jools63 over 5 years ago

Hi Nicky

It breaks my heart to read your post and hear your obvious distress. You’ve already had a difficult enough time. I know it’s easy for any of us to say, but I agree with the polite but persistent appach. I found out that I wasn’t on the waiting list for my stoma reversal surgery, after speaking to the consultants secretary! It’s sad that mistakes happen and people do slip through the cracks. Yo mental health is so important right now. People underestimate how being in a good mental state can help in coping with treatment and recovery. Do keep sharing your story and anxieties with the commity. Sending you lots of love and good luck wishes.

court over 5 years ago in reply to Jools63

Hi Nicky ,

Totally get where you are coming from . I am totally respectful of the care from the NHS and everything they are currently doing . However it totally reasonable to secure your treatment and self advocate. You are patient , you have waited three months without complaining and there is not a hope of you being seen as inappropriate. I think they know there is reasonable concern and as the rest have said a well worded email asking for clarification is fine .

The other side of it , it might help ease your present concern if you know what is happening . The unknown is harder to navigate a lot of the time . You want to make it easier on your body .

I email the secretaries. I phoned my dad’s GP and asked about a medication he was on just now that had been flagged as not doing well with corona . He called straight back and reassured us . I think it’s better to act in a polite way and get the information you need than wait till it is becoming more of a problem.

take care ,

Court

Helpline Number 0808 808 0000

Peacock62 over 5 years ago

Aww Nicky what a terrible position to be in ,I know the NHS are over run with the virus but surely they can't leave cancer patients in the loop. !!!

Have you tried emailing pals we did this for my husband when he had cancer and had terrible trouble getting information/results/appointments etc . I would keep contacting your cancer nurse if possible too , you can not be classed as neurotic it's a very stressful situation and you need answers.

Sending hugs

Lots of love Peacock62 xxx