Feeling confused

FormerMember over 4 years ago

3 replies
117 subscribers
1153 views

Hi. Hope you're all doing ok.

I'm feeling a bit down today and just need to vent. My Dad was supposed to have 12 rounds of chemo, I think he's had 6. He was due to start again in June after a break.

We heard nothing in June then end of July he had a scan, it took ages to get the results. I have started ringing up Dad's support workers at tge hospital most days to ask for updates, I asked if he could go back on chemo soon as I'm worried Dad is starting to look like he's limping and could the cancer have spread to spine or brain, she said that doesn't tend to happen.

The results showed some growth in bowel, lungs and liver. Then Dad started getting virtigo and feeling like he's drunk.

They did a urgent scan on head. Then Dad fell down and couldn't get up. He got put on steriods and is feeling a bit better.

I kerp ringing up but results are taking so long. Dad said they rang him Friday and said there is something on his brain but they need to do another scan.

Dad is finding he has less energy, he just wants to go back on the chemo.

Why are they being so slow?

Last time I rang they said there is a block on his latest scan so couldn't tell me anything.

Dad feels like the hospital has no intention of giving him any more chemo, he feels he's been put to the bottom of the list.

I just don't know what to do or what to think. I'm not looking for smpothy, I'm not sure what I'm looking for, maybe just to work out what to do or some pratical advice would be great. Though I understand all hospitals and situations are different but wondered if I could get people's thought.

I'm not sure if I should complain at this stage as I don't know if that would make things better or worse.

I just want Dad to get the treatment he needs and wants.

Would they really have no intention of not treating him and just not want to tell him?

After his last chemo he had good shrinkage (40%)

Thanks

Rachel

court over 4 years ago

Hi ,

Sorry you have not heard anything concrete yet . Did your dad expand on what they noticed on his brain scan ? Stage 4 cancer is much more reliant on DMT decisions unlike lower stages that follow more prescriptive protocols. When we have hit a period like that although it felt like to us nothing was happening there was in fact a lot of background phone calls and referrals being made on her behalf but none of it is communicated until they are formalised through the MDT meeting . That can be slow and frustrating however what we also experienced it can suddenly move and quickly too! If they have identified something that requires another scan they are also possibly looking into solutions too so that when they do contact him they can give him a complete reply which is more informative.

I honestly don’t think this is the withdrawal of treatment stage but possibly adding in other approaches and that is time consuming. Given his response to chemo I would imagine they too would want to look at that . However if they have identified something they will want to know more about it and normally treat it where possible . It may be nothing concerning but they like to rule out as well as rule in .

Sometimes we have gotten more information from my mum’s GP . They often share the same clinical portal . Or ask them to advocate for him . I don’t understand the Block of Information . You might like to speak to our helpline staff as they would be more than happy to speak to you and give you the guidance on this matter .

0808 808 0000.

I am so sorry this delay has caused such concern and with due cause too. We are here for you and listening .

take care ,

Court

Helpline Number 0808 808 0000

FormerMember over 4 years ago in reply to court

Thank u so much Court for ur reply and the insight. Dad didn't say any more regarding his scan, hopefully know more soon. I didn't know that about how different they treat stage 4 to earlier stages, that does make sense, and explains why it all feels so slow, perhaps there's a lot more going on behind the seans than I realise

FormerMember over 4 years ago in reply to court