Hello AngPat

I'm glad to hear that you've finally got a diagnosis. I know that it's taken quite a while to finally be able to put a name to it and I'm hope that you feel some reassurance about things. 

I'm sorry to hear that you feel you've not had support from family. I think we've probably got a few members here on the forum who have been in similar circumstances and will know how upsetting that can be. 

I wonder if you'd like to talk things through with one of our team of nurses? I'm sure that they will be able to offer you some advice and support about your diagnosis. If you'd like to speak to them they are available Monday to Friday 9am to 5pm on 0808 800 4040. 

I hope your appointment on Monday goes smoothly. 
Best wishes, 
Jenn
Cancer Chat moderator

Hi Jenn

Thank you for your reply

Actually I might need to ring next week once I start the chemo , actually worries after reading about side effects of the cream Efudix. I'm thinking because it is a cream it can't possibly cause any bad side effects.

So in case I feel sick, I want to know if I can take something to help 

Thanks Jenn

I have been waiting to access my chemo treatment at my local doctors pharmacy. 

It appears that my doctor had notification of the treatment I would need, on 19/10/20

Yet I've tried collecting my medication but mysteriously it isn't available?? 

So , the pharmacist said yesterday that they'd order it and it should be in Wednesday, that's today. No text message saying its in. Well, that's OK, just let my condition deteriorate , then who is accountable?? 

Thanks.

Hi really sorry to hear about delays. Very frustrating. I think the whole system is under a lot of pressure. I thought I was getting something urgently. Discovered it had gone to off-site dispenser rather than straight to my named chemist. Not a repeat but GP had sent direct to pharmacy and urgent.Totally get your frustration, but there is a lot of loading on the system and this is affecting a lot of people. GPs and pharmacies are really under pressure.  Hope your meds arrive soon. Another of my medicines (not cancer med) is unavailable according to pharmacist but GP says no record of shortage on her system.  So I'm just hoping I get something. GP has done "alternative" to tide me over in case I don't get anything for a while... Different classes of medicine. Don't forget there is a lot going on globally affecting production of some things. Hopefully not yours. Tough times! 

Hi Sunscared, totally get that now. It has put things into perspective for me. I suppose anxiety during difficult times rears its ugly head.

Reading some messages on cancerchat, shows how people are affected by this nasty disease. 

Yep, tough times for all 

Hi AngPat.

Yes very difficult times. Hope you get those meds soon. I'm finding I have to be especially assertive right now. Also that GPs are expecting me to take more responsibility. It's exhausting and frightening especially on top of everything else. Trying to keep a lid on anxiety is not easy. Good luck! 

Hi Sunscared

Sorry to hear you have to try so hard to get what should be easier, especially if you are going through a very difficult time as it is. You'd expect they would appreciate you're suffering enough. 

Do you mind telling me what  diagnosis you have? 

I hope you're OK I know how anxiety can grip you and have you in shreds in no time, wishing you a calm peaceful day

Angela

Hi Angela,

I was reading your post originally as a family member was diagnosed with actinic keratosis (interesting what nurse replied - it was my latest post titled Skin Cancer query - historically with regard to that condition and might explain why it took you so long to get your diagnosis confirmed).

As regards my meds, we're talking serious lung condition and I had been experiencing non-COVID related breathing difficulties so needed to get on top of things quickly. Have ended up on high-dose steroid rescure meds.

Side effect of one of my meds is anxiety and condition aggravated by stress.

I have also recently had some lesions that were suspect for melanoma removed at skin cancer clinic. Luckily caught things in time, high grade dysplasia but not cancer. 

I'm going to be interested in how you get on with the Eufidix because of the family member who was diagnosed with actinic keratosis at a (very) young age. 

I really think my GP is working exceptionally hard. Am very aware services are extremely stretched at the moment. I ended up getting advice from a specialist nurse helpline (charity) so I could frame things better before getting back to GP. Last year one of my inhalers (am allergic to key alternative) was unavailable and I had to use up out-of-date one which had gone into red showing very few doses remaining before finally managed to source something. I was so  scared!

You take care. Wishing you too a calm and peaceful day. The good news is I can walk and talk normally today. Had a right scare.

Sunscared x

Dear Sunscared

Very sorry to hear how things are for you. Bad enough when one gets a chest infection that affects breathing, can't imagine how it is with a serious lung condition, it must be so scary and not sure if you are told there is room for improvement in the near future? 

My mother had emphysema, aged 56 years. 

This was late 80's when she was diagnosed. Its a horrible disease. 

I truly hope there is something like a new drug that can help, very soon, for everyone with your condition. You're very brave , I hope there are people there for you to hold you during this difficult time. 

Love

x

Dear Angela,

Really feel for your mother. I lost one grandfather similar age to that plus another lung condition. Other grandfather also gone young (cancer) after years on one lung and oxygen.  Without meds I'd already be gone. Delays/shortages are terrifying. Thank you so much for your reply. Much appreciated.

There are a lot of advances being made for both cancer and lung conditions. Sadly, some lung changes are not reversible. Nor can I get new skin. Mine's a bit sun-damaged as mother let us burn and peel loads as kids. I totally get your frustrations with the skin!  

To be honest, there aren't enough people to care in our family. Others worse position than me. Late stages. I'm having to support others more than be supported myself. A lot of stress.

Love X