Home from hospital and WOYWW 403

I was let out from hospital last Thursday evening after spending most of the day waiting around as one always has to do, for drugs to come up from the pharmacy, and for my PICC line to be removed.

As soon as we got home my hubby put me to bed, and since then I have been slowly recovering. As the doctor predicted, my walking has improved quite well since my return home. I am still using the walking frame but at least I am walking now, and not shuffling. I am still experiencing pain in my abdomen when walking but I’m still on pain meds and hope that this will improve with time. My appetite remains small and I have lost 12 lb since being admitted. I can’t believe that my operation was three weeks ago today!

I have been a bit concerned about the state of my wound since my return home so on Monday the district nurse came up to see me, and she reassured me that there were no signs of infection. She has put fresh dressings on it, this time containing iodine which should help the wound to dry up a bit. There are two small holes that I was worried about, which are weeping a bit still, and a swelling at the bottom end which she says is filled with fluid which will either come out, or be reabsorbed. She said that it was bound to take longer to heal after everything I’ve been through, and in view of the fact that I had such a lot of chemo.

I had not been prepared for the poor state of my veins post-chemo, because I thought that having the port would obviate this problem, at least locally – a friend who had her chemo administered through a vein in her arm told me that 10 years on, they are still unable to take blood from that arm – but obviously the chemo had a systemic effect, and none of the nurses were surprised at this. Having the PICC line solved the problem, although of course it did necessitate having a specially trained nurse or junior doctor to hook me up to take blood or administer drugs because it required the setting up of a sterile field.

I continue to be very tired. My hubby brings me breakfast in bed and I get up after this. With the new dressing on the wound I am unable to shower but manage to have a good wash in my adapted bathroom. He is doing our meals, and until the end of this week he has cancelled most of his engagements so that he can be here to look after me. I still need some help with dressing as it is hard to bend down and I’m still pretty shaky. I am gradually gaining in independence but it’s going to be a long slow recovery. I still find it rather difficult to concentrate on anything for any length of time but have started reading again in short bursts. Other “activities” include listening to audio books and watching TV! Nothing too taxing for now!

When I got home, Beatrice was pleased to see me, but Phoebe was very nervous of me and ran away! However, both kitties are now happy to have me back and we’ve had lots of cuddles.

It is very, very good to be home.

Probably going home tomorrow

The doctor who saw me this am said I was fit go go home today! I questioned this, telling him about my slow shuffle yesterday. I saw the usual doctor this pm and had a chat with him, and he said the physios had certified me fit to go, which I said was ridiculous because I hadn't seen any of them since they were first persuading me to get out of bed immediately post-op, and how could they judge me fit if they hadn't even seen me? He said they had said I had achieved my original baseline of being able to transfer from bed to wheelchair and could wash and toilet independently. I said this was far below the baseline when I first came in. He said they will come and see me tomorrow and assess me properly, but it is most likely I shall go home tomorrow. He said that I am going to make better progress with walking at home, and if I stayed in, with the demands of staff etc., it could take me weeks to get back to what I was, but in the safe environment of home (we have loads of adaptations and I am familiar with how everything works) I will be doing more short walks with the frame and moving around more. They will be providing me backup support with physio visits at home to check on my progress. My hubby is already lined up to look after me as he did last time I came out of hospital. After this chat I did feel a bit more confident about going home. Surgically speaking I've been ready for several days and the doctor said that once I am moving more, my strength will rapidly return. After all, I have not been walking for almost 3 weeks and I have lost some muscle mass and have been very weak, and the recovery from emergency surgery is always a lot longer than from elective surgery.

So it looks like green lights for tomorrow afternoon!

Feeling much better, my first walk and WOYWW

After a bad day yesterday with my ME when I didn't sit out in the chair at all but rested in bed, today I've felt much better and I've been moving around independently in the wheelchair and managing to wash etc without help. The surgical team are pleased with my progress and would be happy for me to go home but I've got to improve my mobilisation before they're willing to let me go. Today two nurses helped me walk for the first time with the frame and I had a slow, short and pretty painful shuffle along the hall with one nurse holding my arm and the other following closely behind with the wheelchair, but I made it back to bed in one piece! I am sure that over the next couple of days things will improve rapidly as my strength returns, and I think I shall probably be ready to go home on Friday, but no definite date has been set yet.

I am in good spirits and very relieved to be feeling so much better at last. I am continuing on antibiotics and my white count is continuing to fall as the UTI is brought under control. My wound has been weeping but they are not worried as there's no sign of infection, and they are dressing it each day. I am eating well on the low residue diet and enjoying the excellent food the hospital provides.

I've had lots of lovely visitors - friends and family, people from church etc. I have very nice room mates. Although I get very tired and need to take naps, I am feeling more able to concentrate on things now although I still find doing lots of emails etc tiring. My hubby is fielding all messages and texting everyone with progress reports.

So the end is in sight!

Two steps forward, one step back

Thank you everyone who has sent me such lovely encouraging comments and for all your prayers. Again please forgive me not replying individually - struggling to keep the updates going.

Very bad couple of days with more sickness and worse M.E. fatigue and raised white blood count, and lack of sleep. Felt horrible yesterday.

Better today and yesterday's infection investigations showed it to be the UTI continuing so am now on stronger antibiotics. They said today that my potassium was too high and I had an infusion of some calcium to protect my heart and an ECG. Tonight they infused me with insulin which is supposed to drive potassium from the blood and have been checking me regularly (painful) by finger pricks to get blood. My veins are not obliging and it takes 2-3 pricks each time to get any blood. Am now being infused with glucose as they continue to monitor me and they'll wake me during the night to prick my fingers again.

So from thinking I was now attached from everything except the PICC, am now back on a drip again.

Felt better sitting out in the chair this morning and I can now manage to transfer from bed to commode or wheelchair without support so progress is being made. They want me at the same level I was before the blockage before they'll send me home and that's a long way off yet, so no hopes for an early release any time soon!

I've now been in longer than I was the first time. This Sunday it will be 2 weeks. They are looking after me very well though. It's just that my body isn't behaving itself properly!

WOYWW 401 - Gradually improving

It's been a really tough week but last night I started to turn the corner. Over the past couple of days they've removed all but 2 of my attachments. I got a UTI so am on antibiotics for a few days. All my cannulae failed because my veins have been ruined by the chemo so eventually they inserted a PICC line but they haven't had to use it much. Now just on oxygen, and oral pain relief (paracetamol and tramadol) and electrolytes. Catheter out yesterday and starting to use commode. Managed to transfer by myself just now! Pain is being managed but my strength is returning. Been sitting out for brief periods but till last night couldn't do more. Last night had to sit out for about an hour while they replaced my failed air mattress and it was fine!

My eyesight and concentration continue to be a problem but that will resolve in time.

No discharge date in view yet but not worried about that. Dr said yesterday that this time was bound to be much worse than last because last time was elective surgery and I was well prepared for it and as physically fit as I could be but this time was "emergency major surgery" and I was very poorly before they even started. Trying to reassure my hubby who is as usual freaking out and worrying too much. Seeing me at my worst I think he thought that was how I was going to remain! I told him there's no way they'd let me out till I was ready.

Needing lots of rest and sleep but the trend is generally UP!!

Major Surgery

Thank you all for your lovely comments, everyone. Please forgive no individual  replies. Thank you Zsuzsa for signing me up to WOYWW. I went down to theatre at 11 a.m. for what they hoped would take one hour and it took three. They opened me up along original wound so open surgery. They didn't affect Kermit (stoma) thank goodness, just repaired Miss Piggy (hernia) and I nay need further surgery to reinforce the parastomal area after I'm healed up. Quite a mess in there with adhesions etc. but good news is that Miss Piggy is no more and this p.m. Kermit started working again. Pain very bad afterwards but now managed pretty well. I am still very poorly and will be in for several more days probably. After not eating since Sat evening I had clear soup and jelly for lunch. Spaced out on morphine etc. Eyesight affected so that's it for now folks.

In hospital and WOYWW 400

A short post - I will edit this later with full details. On Saturday evening Kermit, my stoma, stopped working and I had quite a lot of pain in Miss Piggy, my hernia, and in my stomach. I was sick during the night. Still no stoma output in the morning so my hubby took me to A&E and they kept me in. I was very poorly on Sunday and Monday and was vomiting quite a bit until they gave me a nasogastric tube in the evening, and pain meds. I had an X-ray that didn't really show anything, so they booked me in for a CT scan which happened last night, and this revealed what they suspected - a constriction of the small intestine in the hernia. I have therefore been set up for emergency surgery later this morning (probably 8 a.m.) and until they go in, they won't know exactly what they will be doing, but it's likely that they will repair the hernia without upsetting Kermit, but the worst case scenario would be to re-site him which I don't want, because it will be going back to square one again, after he has behaved so well for nearly two years.

This evening they reinstalled my cannula yet again after it had failed twice, and I am back on rehydration fluids, and installed a catheter. I am allowed sips of water till 6 a.m. and then nil by mouth. I shall probably be in for several days.

Nothing on my desk this week.