What can I do?

hey you    I'm in the same boat as you, only it is affecting my husband of 30 years. Make sure that you stay in touch with McMillan and Prospect, they are amazing xx

Thank you for taking the time to reply. I’m sorry you are experiencing this too. I haven’t heard of prospect I will look in to this xx

Hi

So very sorry that you have cause to be on here.

The positive aspect of Small Cell Lung Cancer (SCLC) is that it responds well to chemo. The combo of carboplatin/etoposide is classic for treating SCLC. It can be brutal though;.

Your Mum will lose all her hair from top to toe!  This usually happens after the second cycle, so best to prepare in advance; get a wig (she will be entitled to one on NHS) and take her to have it cut by her hairdresser. If her natural hair is long it is best to have it cut quite short which makes the physical aspect of losing the hair less traumatic. My hairdresser cut mine to approx. 1.5 inches which was good when it started to come out as I need some hair to run my fingers through to speed up the loss process. It happens quite quick and it cannot be stalled/delayed; started to come out Friday night, bald by Monday morning!  My treatment was also undertaken around this time of the year, so also bought lots of nice woolly hats for when I couldn't be bothered with the wig.

Help her by stocking up with some frozen ready meals as it is important that she keeps her weight up. It doesn't matter what she eats as long as she is getting the calories. The last thing she will want to do when feeling rough is to cook from fresh.

The chemo can cause the red and/or white blood cells to drop to very low levels, so this can often mean the chemo is deferred to the following week; this is normal so don't worry if this happens as it does not impact on the outcomes of the chemo. 

Will Mum also be having radiotherapy; if so, this can cause extreme tiredness. Again very normal.

I was diagnosed with extensive but 'limited' SCLC (only in one lung) back in 2011 and had my last treatment towards the end of December 2011. I tell you this only as evidence that SCLC is no longer the automatic death sentence it once was and that more of us are surviving this disease or living longer post diagnosis.

I hope this helps from a practical perspective, and I wish the best possible outcomes for your and your Mum.

Kegsy x

Importantly, ask your Mum how she wants you to support her.

Hello Kegsy, 

thank you so much for sharing your experience and your advice. It’s a very scary place to be right now so reading that has helped. 

yes so mum is going to have 4 cycles of chemo, and then onto radiotherapy for her chest and brain. 

I had thought about cleaning and cooking as this will take pressure off her and dad. I’m going to visit her today so will ask her how she wants me to support her too. 

I like the hat idea, they did say with the chemo it may not all fill out just thin but with the radiotherapy she will lose it all. 

im so pleased you have had a positive outcome from this, I needed to hear of hope and you gave it to me 

chris x

Kegsy

Thank you for this post as it cheered me up with the part ( I tell you this only as evidence that SCLC is no longer the automatic death sentence it once was and that more of us are surviving this disease or living longer post diagnosis).

Was nice to see no doom and gloom.

x

Mummyofteogirls

I too am in the same situation as you and took a great deal of comfort from Kegsy and others posts on here.

We’re awaiting further results from a neck biopsy taken Tuesday which the consultant has indicated this may not be curative treatment as her initial diagnosis indicated. Next appointment on 28/11 where mum will be given her treatment plan. 

I truly hope your mum’s treatment kicks cancers ass!! 

Take care

Sara x

Hi Sara, 

it’s the waiting from one appointment to the next, that’s a nightmare. I hope the next appointment gives you positive news 

i really hope the treatment kicks ass too ... it’s like a massive roller coaster of emotions all the time x

A rollercoaster that you can’t get off....yep I’m on that same ride!!

My mums trying to be so strong for my dad and us 3 kids (we’re 43, 41 and 39 but still her kids she says) and today she finally broke down. It was much needed and now she’s all buckled in and ready to ride the coaster again!! 

Yes !!! I want us all to get off together. 

Mum hasn’t broke down yet, I don’t know if it’s because she doesn’t want to think about it or doesn’t fully understand. I am 37 and my brother is 42. I’m sure mum will react soon 

Being a mother myself I’m realising how much I need my mum :( 

do you live close to your mum 

I do live close to my mum thankfully, so get to see her every day which is good.

Im not a mum, my sister has a daughter whose 11 and she has said since having her she feels a different level of love and appreciation for mum. 

Hope you get to see your mum often, I’ve read on here some living 2/3 hours away which must be hellish when going through this.

xx