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1

Morning Ladies,

Just thought I’d send a quick update. I have felt so dreadful over the last few days, can’t seem to feel better at all, even marginally, just feel like I will feel this ill for ever, I look back just 3 weeks when I was last in the hospice and realise how “well” by comparison I was. Now every morning there is one issue or another. Currently have the sorest mouth ever, can’t even talk properly let alone eat, & have developed oral thrush, all as a result of the chemo I suspect, although it’s pretty much the lowest dose possible.

Have just had 3rd weekly chemo on Wednesday, still on steroids, diuretics etc, although steroid dose now reduced slightly. Had MRI of brain and eye socket last week and results have gone to specialist centre in Birmingham for them to have a look. Feel a bit unsteady on my feet and a bit fuzzy headed with some auras most mornings so not holding out much hope, oh and an attractive droopy eyelid!! The chemo that I am on doesn’t cross the blood brain barrier so it will be radiotherapy or nothing on that score I imagine.

I Haven’t  been sleeping as I keep feeling like I can’t breathe when I lie down, so have moved to the settee from the bed, which actually has been a bonus and I have managed 2 nights of reasonable sleep this week.

I have been referred back to the hospice and today they have a bed for me so I am being admitted later on. So scared, feel like I may not come home once I am in there but by the same token don’t feel well enough to be at home, need that support and network around me. Has anyone else been in & out of the hospice?

Kidney function bloods ok this week, liver still off the scale, Bilirubin and GGT going up dramatically although the latest weekly increase is less than the week beforehand , can I take positivity from that? White cells and neuts dropped so much so they did debate not giving me chemo at all but have done so with a Pegfiligrastin injection the following day to boost the white count and prevent neutropenia (hopefully).

 

Sorry for the rant, just feeling so low and helpless, I would like to feel better before I get worse, if you know what I mean. Or will I make a dramatic turnaround? That would be fantastic, I’m not ready to bow out yet but the fight is draining away, hindered by feeling so poorly.

Will keep you posted on progress.

Smartie xx

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Smartie,

so sad to hear you are feeling so poorly. I’m sure you are making the right decision going back to the hospice for some respite. I know exactly how you feel about thinking you won’t come out even thogh i have never been admitted. It is so easy for people to say ‘keep positive’ but it is so b****y hard to keep doing it.  I’m sure your fighting spirit will return once you are feeling better. A few months ago i haad 2 pleural efusions and could hardly breathe, even at rest, i have never felt so ill and it was the only time i said i give up. Fortunately that has improved for the moment. I was given oramorph which apparently helps breathing and acts as a ‘calmer’…maybe you could try it. I also had oral thrush and was given nistatin (or something similar) but you have probably had that already.

Please take the opportunity to rest and get your strength back then go on fighting this stinking disease…you can do it!!! will be thinking of you. Please let us know how you are doing as soon as you feel able. Much love.xx

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Hiya smartie
Sorry u not feeling too good but I think a move to hospice will b good so they have the right care for you.
Keep going …don’t let the cancer win …I will send u loads of hugs
Xxxxx???

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Thanks everyone for your words of support, it means a lot. Xxx

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Hi Smartie

I cannot imagine what you are going through and I am so sorry you are going through this awful down syndrome the hospice will be more help to you right now where you can have a respite and have people who have your interest surrounding you to give you some positive support. Then you can come out and carry on fighting and we are all here to urge you on at this terrible time.

 

Sending you loads of cyber (((((((((((((((((((((((hugs)))))))))))))))))))))) xxx :heart:

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Quick update, taken by ambulance to hospital this morning as now neutropenic, chemo stopped to be reviewed after this stay in hospital. Hooked up to IV antibiotics & fluids. Feeling better than this morning for sure, fingers crossed I recover soon
Smartie x

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Thinking of you Smartie; thanks for letting us know and hope the ABs kick in quickly. Tournesol x

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Hiya smartie
Hope u r feeling better after ab and now had a good breakfast and sat up watching daytime tv …enjoy
We are thinking of you with loads of hugs xxxx

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Dear Smartie sending you lots of love and cyber ((((hugs))) I hope you feel rested and stronger xxx

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Smartie, glad to hear you are feeling a little better after such a rough time. Keep plugging away…you will soon be home and fully able to fight on. xx

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Hi Smartie, loads of love to you. I know being in hospital often depresses me, feels powerless.

try to use your mind to gain some power, I try to meditate, even taking long deep breaths and counting them up to 10 again and again seems to help me.

 

let us know how you are.xxxxMoijan???

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Been here since Tuesday on IV antibiotics & GSCF injections daily neuts were 0.1, 0.1, 0.3 and now today 0.2 so they’ve gone down. So fed up & feeling awful, anyone got any experience of how long it can take to stabilise? I have never had neutropenia before.
Thanks for your help everyone & hope u r all doing as well as you can be, you are a support to me in here.
Smartie x

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Hiya smartie
I’m afraid I don’t have the answer to your neutropenia either but thought I would just send u loads of hugs .
Maybe a nice bar of chocolate would help!!
Hugs xxx?

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Thanks both, just seen doctor & he says sometimes it just happens that way, but as he is not in over the weekend I won’t be able to get out until it’s 1.0 or above. If it was 0.8 or 0.9 I would have to wait until Monday & the doc was back in to approve discharge. Weekends & hospitals eh? Resigned myself til being here til Monday that way anything else is a bonus I figure.
Smartie x

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Hi Smartie, tell me about hospitals and hols/weekends…i was in over easter for 5 days before i had any treatment and 3 days over Drs strike. Vowed only to go in again between mon and thursday!! cant reallly help with timeline bt i was neutropenic with my first chemo and rather than delay i had to do gsfc(??) injections at home for the rest of my treatment. My sister was hospitalised for almost a week. Please keep your chin up…i know how awful it is to be in hospital.Lets hope the treatment kicks in quickly. lots of love.xx

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Hi Smartie, tell me about hospitals and hols/weekends…i was in over easter for 5 days before i had any treatment and 3 days over Drs strike. Vowed only to go in again between mon and thursday!! cant reallly help with timeline but i was neutropenic with my first chemo and rather than delay i had to do gsfc(??) injections at home for the rest of my treatment. My sister was hospitalised for almost a week. Please keep your chin up…i know how awful it is to be in hospital.Lets hope the treatment kicks in quickly. lots of love.xx

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Smartie thinking of you in hospital…like you said resign yourself for the weekend and hopefully your bloods will sort themselves out…try to rest and try to eat.iv had the thrush last Tim I was in hosp.it even took my voice away I was just squeeking…hopefully youl be out monday .xxlove sharon

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Hi all, I am now home, thank goodness I missed the heat of the next few days forecast. Neuts & white cells recovered & have come home with oral antibiotics. Very stiff & immobile though, couldn’t get off the settee nor the toilet, thank you other half. Now got a raised toilet frame from the hospice which seems to have done the trick. I feel 90 & very tired (apologies to any fit 90 year olds) anyone any advice on how to build strength back up? Did you feel the same after a stay in isolation?
Love to all
Smartie x

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Hiya smartie
No place like home and hopefully you have plenty of help and support!!
Those higher toilet seats are good …I had one for a little while after my hip op. Only trouble is everyone else has to keep moving it .
Hugs and good vibes xxx

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Hi Smartie, great to hear that your bloods have improved and you’re home! I came home from hospital last week after nearly 2 weeks treatment for spinal cord compression so am in a slightly similar position in regards needing to get strength and stamina back. For now just doing the hospital physio exercises and waiting for further input from the community team. Also waiting for one of those raised toilet seats which I hope will be helpful. And something to allow me to shower again! All the best with getting some strength back. Tournesol x