It's not all bad

Hi

That’s very similar to my recent experiences in hospital. There are “cold” corona-free areas where the waiting rooms are empty and the waiting times short. I’m glad you had a good experience 

xx

This is good information to know as I myself and I would imagine I am not the only one thinking about what careful conditions there is for us with this virus around we need all the positives we can get at the moment 

Hi  I'm so pleased you seemed to feel safe there. I had a scan at the beginning of March, just before this all started but was then called back for a different type of scan after lockdown had started. When we went to the department the staff were waiting for me and I went straight to the changing room then into be scanned. There was no one else there apart from the staff. When we left, a nurse walked ahead of us to the front door and we only saw two other people on the way. The nurse stopped them, moved them well over to the side, saying I was high risk, and they stood until we were out of the door! I too would not worry if I had to back for anything else as they've "got it sorted"!

Just a shame you had to wait at all Maz!

Yeah the waiting was a shame especially as I had even rang ahead but I was imagining being sat there with infectious people so I was pleasantly surprised. It got a bit worse as even though I had been sent to them because it was my foot to be cannulated they were unprepared and said they needed a doctor to do it. They managed to get one but his effort was rather dubious and by the time I got to the scanner it was not working at all so I had the scan without the contrast. So I was in the hospital for almost 3 hours being pushed from one place to the next coughing as i went. I was really surprised at how many staff were standing about in corridors I just imagined it was all hands on deck in there. Having read some of the latest news re the amount of closed wards and cancelled clinics and treatment compared to the relatively low number of staff off I can now see why. I have however been putting up with quite a lot of pain in my spine due to stopping my bone injection because they didn't want me going to the hospital due to risk. After Wednesdays experience I decided to ask about it as I think I would like to take the risk. I was told that they could actually get a district nurse to come and do the injection so long as someone picked it up. So they are now sorting that out. 

We are sometimes too willing to just get on with things and I worry for others that are suffering needlessly. 

The morale of the story is even in these times it is still better to ask if something can be done. If the answer is no you have lost nothing if it is yes then you win. 

Take care all 

Hi That's great you've got your bone injection almost sorted out by the Didtrict Nurse. Pain is a terrible thing so if you can get help with it, that's great!

Well the Pallative care nurse, who is really organised and like me a chaser, rang me yesterday to say she was still trying to get hold of my oncologist. She has never worked with him before and is finding it quite frustrating. She had done some reading up and asking around and said she didn't realise how much work I had to put in myself up to now to keep things moving along. However she now knows she will have to keep pushing to get any contact from him. 

I will wait a few more days and if we hear nothing I may have to resort to the turning up at his clinic as a last resort. 

On the good side though after a very poor start to the week I finally got some sleep on Thursday night and had the best day for months yesterday. No sleep last night but at least I have had 1 in 11.  

They think it is the steroid but I am still on the lowest dose, 10mg and I should be on 30mg. I tried stopping it but then my breathing deteriorated massively. Devil and deep blue sea at present. I am hoping that when my body gets used to it I will then be able to sleep. It could also be the pain but I seem to be getting used to it. Hopefully the latest scan result will shed some light on why I still have this terrible cough whenever I move or talk and if anything can be done about it. 

Take care all

Hi

Your palliative care nurse sounds like a gem. It must be good to hear that it’s not just you who’s frustrated by your oncologist. It doesn’t solve anything, mind you, but I guess it’s some vindication. 

I am really sorry to hear about your lack of sleep. I’m very sensitive to steroids and I find insomnia a real issue on steroids. Are you able to nap during the day? People say it disrupts your sleep but if your sleep is already disrupted then why not snatch the odd hour or two when you can? Both me and my daughter tend to nap each afternoon. My daughter is 16 and a teenage sleep monster anyway but I think her napping is also a sign of anxiety. As for me, my sleep has never recovered from early motherhood. I just like a nap these days. Blanket out, head down, radio 4 on quietly in the background. Lovely. 

I hope you have a lovely Sunday and that your nurse will pin your oncologist down on Monday and make him do his job 

xxx

Thanks Daloni

I don't know why but I have never been able to sleep during the day. One of my brother's has worked nights for 30yrs and my son would gladly be nocturnal given the choice but I just cannot do it however hard I try. 

Good news is I managed a few hours again last night even if it gets to a few nights no sleep then a good one it will be better. That 10 nights no sleep just about had me at the stage of not wanting to keep going. I know some of you have had to put up with it for years and my heart has always gone out to you. We may need to reassess the steroids as my cough is probably getting worse not better and that leaves me breathless. 

I was thinking about your daughter's this morning I am from a big family 7 siblings. The 3 girls were born one after another (3 in 4 yrs) we are close but very different more so the middle sister. We lost our mother to Cancer we were older than your 2 but it was very apparent how although we all loved her and each other we each needed to do things differently to get through it. My younger sister had a need to be in charge (you kept your head down when she was in full control mode), I just needed to be there and spend time with her while doing anything that came up, my middle sister needed space if not she just cried all the time. We were lucky there were enough of us to cover what was needed but we also knew that if need be any one of us would pick up and carry on if we had to. It helped us to realise early that we were different not stronger or more able and could handle different things. When she passed away we were all there for each other as mum would have wanted and love each other dearly. Both your daughter's will need to recharge their batteries for the road ahead but I am sure they will work out the best way for them. You have brought them up well and I am sure they will surprise you and themselves over the next chapter of your life together. 

Love 

Hi

Thank you for your wise words. I had a text from my older daughter yesterday to say she was sorry for making the wrong choice and selfishly going back to uni after the mri (her words) but she is scared. She’s coming home on Friday. 

I told her I understood and to come when she’s ready as, to be honest, she won’t be much help if she’s not ready. 

xx

another of those times when hitting the like button feels wrong...

it's a testament to both you and your daughter that she's able to recognise this and be so honest with you. 

So glad you'll all be together soon xx