Update on mum

Hi Julie.c64,

I know from my own experience that it does feel scary but I’d take it as a positive that things are moving so quickly. Other services in the NHS are now getting back to some kind of normality, following all of the media coverage cancer services are going to be up there with the services that are picked up on again ASAP & prior to the COVID situation things would have, in most cases of a cancer diagnosis, moved pretty quickly. I was diagnosed February 2018, had CT & MRI scans the same week, was referred onto my colorectal surgeon & I had surgery approximately 3 weeks later (mid March) given 8 weeks to heal from surgery & began treatment mid May. 

I hope your mums appointment on Friday goes well & they give her a plan moving forward. 

Nicola

Thanks for your reply its good to have someone to share with

Julie

Unfortunately it was not good news for mum cancer has nearly taken over the back passage. They have decided that a stoma is going to be the best in case the tuma prevents any more damage and pain via straining.  She is been put on surgical urgent list for biopsy and stoma 8th September but they said it would not be reversible due to its size they said biopsy was to discover which carcinoma it was her lymph nodes in groin area are swollen too. The plan is opp then radio therapy to try and shrink it. Currently trying to get our head around telling the grandchildren as some live abroad. 

Julie 

Julie

Hi again Julie.c64,

I'm so sorry it wasn’t better news for your mum. There’s a few members on here that have had stomas for exactly the same reason. I know it’s a surgery that nobody wants but hopefully it’ll make your mum much more comfortable. Mine & by far the most common of anal cancers was a squamous cell carcinoma & this, in most cases, seems to respond very well to the radiotherapy. I suspect your mums radiotherapy will be planned to cover any suspicious lymph nodes in her groin also.… It’s an awful thing having to tell family etc., especially if they don’t live close as you can’t wrap your arms around them & give them a hug when it’s most needed, I moved away from my hometown 20 years ago & had to tell my parents & sister etc., over the phone & that was difficult so I know how you must be feeling. 

I really hope the op goes well on the 8th & your mum’s treatment can get underway soon. I’m thinking of you all & sending lots of healing thoughts your way. 

Nicola 

I told my eldest today in Belgium he is planning to get some leave to visit after opp providing covid allows 

My sister and I are planning to try and tell the other boys at a similar time ours is in Japan  ,his older brother is going to phone him for support as he lives in his own and having ASD not sure how he will take it as not very good with emotions but he is in regular contact with his older brother.

Mums taking it in her stride even though she is uncomfortable more worried about which nightie to take to hospital she has never had to stay in hospital so it's all a big strange. Hospital has requested that Macmillan nurse visits mum for a chat

Thank you for your support 

Julie

Julie.c64, 

It’s a difficult one telling your kids, my youngest was just about to sit her GCSE’s when I received my diagnosis (she sat her first exam on my first day of treatment) & the guilt I carried when I told her was immense! Be it your diagnosis or someone close to you the emotions you go through are things that nobody warns you about but this is where places like the online community come into their own as you find others that have been through this & can support you through. My eldest daughter has Down Syndrome, she is very high functioning, she’s 31 & lives with her friend in her own home so she didn’t see first hand what I was going through so it was easy just to tell her what she needed to know, cancer was never mentioned to her as it’s an added worry she didn’t need to have but she knew I went into hospital for surgery & then had to have some ‘zapping’ (radiotherapy) afterwards. It’s good that your son will have regular contact with your eldest for support. 

It’s good that your mum seems to be handling things well, I think sometimes, as strange as this sounds, it’s kind of easier when it’s happening to you, Don’t get me wrong this really did make me sit up & face my own mortality but I worried more for my kids & my family on how they were feeling/handling things than I did for myself, also things move so quickly regarding appointments, scans, surgeries, treatments & so on, a lot happens in such a short space of time that sometimes you don’t have a lot of time to think about the what ifs! It’s good also that your mum is going to make contact with the Macmillan support services, they are very visible & accessible in my oncology clinic. 

Once again sending lots of good wishes your way for the 8th. 

Nicola

Hi Nicola & Julie

My brother & sister & I planned carefully how to tell our 91 year old mum about my diagnosis.  While I talked to mum, my brother talked to her carer so she’d have that extra support.

We had a good if emotional chat.  I felt drained afterwards as I’d only got the diagnosis that morning & had other calls to make.  My brother phoned mum in the evening & she’d forgotten we’d even had a conversation!

That was 7 weeks ago but I still laugh every time I think about it

Hi Toni8776, 

This made me smile, bless your mum. Hope you’re doing ok. 

Nicola 

Hi Nicola 

Glad to hear you’re still NED & feeling well. It’s quite a rollercoaster ride, isn’t it!  I stay positive most of the time - a lifetime of martial arts is good training for this journey - but at last week’s PET scan there were tears as well as giggles.

But I’m enjoying this quiet few days before more appointments & treatments.  Hope you & everyone here are doing well & enjoying being alive

Toni

Toni8776I’m sorry that your PET scan last week didn’t bring better news. Do you have a treatment plan in place moving forward? Take the time like you say & enjoy these next few days, try & do something that makes your soul feel good. I’m considering taking up meditation as I’m guilty of overthinking at times, my sister is a yoga teacher so may even branch out & book a couple of zoom sessions with her, my best therapy up to now is losing myself in the middle of a field somewhere with my trusty 4 legged friend. 

You know where we are should you need a little extra support, just a general moan about anything or a chat with someone that knows what you’re going through. 

Sending lots of positive thoughts your way.

Nicola