Looking for the silver lining

Sun_Addict

Thank you all

Taxi - we got some mobility aids delivered ordered by Occupational Therapist but they don't really help. What he needs is what you suggested - grab rails and a seat for the bath. We have a wheelchair on order but it's not coming until Monday. He has also asked for a stick to help him walk as it's his knee that keeps letting him down. I think he's better off in hospital for his own safety at the moment although he was coming on really well over last weekend.

Spending money like water at the moment. Keep drawing out £20 and it goes nowhere - taxis, coffees at hospital, bits and bobs for Mr SA - total nightmare! Got a Mr T shop coming today but seem to have spent a lot for not that much. Fed up!

satchmo1

Oh what a nightmare you're having, different day, different sh*t!

On a practical note, how about taking a flask of coffee to hospital? A picnic that you and Mr SA can share? As for the ambulance c*ck up, if you ever have anything like the locked bathroom/fall scenario, please dial 999 and let the ambulance folk do the breaking down, lifting and transferring back to hospital. Not only will it be quicker, better for your backs etc, it will also save taxi fare. I'm not advocating using emergency services as taxis, but this really was an emergency.

Do you now have to have the bathroom door fixed? Can social services fit a lock that can be opened from the outside?

When my exDH was first home from hospital, we put a plastic garden chair in the shower so he didn't have to stand. It was a great temporary fix. We didn't have ANY help from social services because "his health issues are temporary", yeah and I can't lift a 13 stone muscle man, thanks!

Hugs xx

*Robin*

Hello Sun.A, :hello:

Very good news that MrSA responded well to his initial chemo, but sorry to read your latest updates although not entirely surprised. Your whole family is on a very steep learning curve; my best advice is keep your eyes open, brain switched on, and question anything that strikes you as odd.

You've already learned that locking the bathroom door is a bad idea and DH should have been given a chair to use in the shower - both these things are basic and the OT, discharge nurse or district nurse [if involved yet] ought to have discussed them with you and DH..
Of course all the NHS professionals are desperately busy and often assume someone else will have covered a particular topic with you. Omissions come to light only when something goes wrong, so it is important that you're pro-active, Sun.A, to get through this trial with as few frustrations as possible.

Given DH's extra problems with his knee and the configuration of your home, if I were you I would now be hassling the OT for a stair-lift ([STRIKE]or[/STRIKE] and trying to source one myself). It will take some time to organise so if you want MrSA to be able to spend as much time as possible at home while he's undergoing treatment, then it's worth looking ahead.
Because MrSA has already fallen at home, this will be used as a reason to keep him in hospital unless action has been taken to avoid any foreseeable future risk.

Sun.A have you got a Red Cross depot within reasonable reach? They are a very helpful source of equipment such as wheel-chairs, walking sticks, shower aids etc. A stair-lift may be beyond them but it never hurts to ask.. You will probably also need a ramp to get the wheelchair in and out of the house.

We borrowed a wheelchair and ramp from the RC; the NHS chair we were given by the OT was so cumbersome and heavy I couldn't manage it, and no ramps were available - so my DH would have been trapped in the house if I hadn't sourced more suitable equipment.
The NHS did loan us a hospital bed which was a Godsend - but took up a huge amount of space, so was another thing requiring thought; moving furniture and swapping bedrooms around before it arrived.

Lucky's suggestion of asking for a phased return home is interesting; it's not a possibility I've come across when dealing with oncology, perhaps because frequent 'hops' between home and hospital are almost inevitable?

Satchmo's idea of taking in a picnic when you visit MrSA is great, we did a variation of that: My DH was a smoker so all visits consisted of getting him outside to have a stress-busting ciggie (or three). It didn't take much more effort to wheel him across the road to the consultants' car-park where builders had a corner fenced off - they 'adopted' us, let me park by their portacabin so DH and I could use the kitchenette in the van to make snacks and drinks. The hospital parking gestapo were not pleased but couldn't stop me as I had paid their extortionate fee and my van didn't fit in the visitors' multi-storey car park anyway - sometimes it is necessary to fight. DH felt it was essential to get away from the ward for a few hours every day - being an in-patient was something he hated with a passion. He said those hours in the fresh air kept him sane and positive, so for me the effort was well worth while.

Sun_Addict wrote: »

Spending money like water at the moment. Keep drawing out £20 and it goes nowhere - taxis, coffees at hospital, bits and bobs for Mr SA - total nightmare! Got a Mr T shop coming today but seem to have spent a lot for not that much. Fed up!

Yes money just leaks away when there are much more important things going on in life.. Is the DLA in progress (can't remember if you've mentioned that)?

Sorry for such a long post, am rambling..

Sun_Addict

Thank you Satchmo and Robin you have both come up with some very useful advice and Robin you're not rambling at all!

Mr SA is still in hospital and is likely to remain so for the time being as his temperature is up and down and his white blood cells are still extremely low. He was very tearful tonight as both the doctor and a nurse have kept telling him he's "very ill" which has made him feel like he's on his last legs and he doesn't even feel ill in himself. However, it sounds like he has been asking to come back home so I think they're trying to make him see he's better in hospital at the moment.

He's on a ward waiting to go back to the ward he was on before. Although the room is quite nice and sunny we are back to paying for TV again and if I thought the charges were extortionate in the last hospital at £10 for 3 days, in this ward it is £10 for 24 hours!!! Can't deny him but at this rate if he's in this ward for much longer every penny of his ESA will being going to paying for TV and he's only watching the freeview channels anyway! What a rip off!! Surely someone somewhere should look into this. The coffee situation is there is plenty of free coffee to be had from the ward but Mr SA looks forward to his "proper" coffee from the Coffee City shop and I just think I can't deny him this either he's got enough going on. It's not a bad price at £1.40, although he'd prefer a Costa, but there isn't one at this hospital thank goodness or it would be costing even more!

Hopefully there will be some better news tomorrow.

Buffythedebtslayer

Just dropping by before bed. xxxx

TV wise I agree there has to be a better solution I mean nearly EVERY one in hospital pays for the licence so why does it cost so much...............

Oh Sun addict it is so hard cos he is ill, and being in hospital is utterly awful. I mean you know they are full of sick people and doctors who tell you things you do not want to hear at all. For most people who are like your OH it is so alien.

!!!!!!!! I wish I had more suggestions as to what to do.

just remember in all this you need rest, regular meals and time out. It is not selfish.

must sleep now take care xxxxxx

Sun_Addict

Thanks Buffy

Mr SA is now back on the free TV ward in a side room. Can you believe this horrible coincidence - on the ward he was just on he was in the side room next door to the side room his mum died in 11 years ago! Both he and his brother recognised it. At least they know how to cope with his problems on the Haematology unit - nurses and doctors from the unit kept having to come over to treat him on the ward he has just moved from as the nurses there are not trained in treating blood cancer. He moved back last night.

He is so tearful all the time and I'm finding it hard to know what to say to him. Nothing I say can make him feel any better. He could do with talking to someone who is going through/has been through lymphoma. It doesn't help matters that he's getting all these setbacks. He can't see a way forward at the moment. He's also getting very demanding with the amount of time I spend at the hospital. He seems to think I should be there from start to finish of visiting times. I already spend 2 hours or more with him every single day and I think this is enough. I keep telling him I have to go to work, clean the house, walk the dog, shower, cook, shop, eat, etc but he doesn't seem to care. He phones me several times a day now his voice has come back asking me what I'm doing and what time I'm coming to visit him and why can't I come earlier. I feel like I'm electronically tagged! He's making me feel so guilty that I'm healthy and he's not. I even tried the "stop feeling sorry for yourself and get on with getting better" tactic.

On a lighter note, his tax rebate has gone into the bank and DS has paid me back the £320 he owed me. I've put £3.94 into my VSP which now totals £192.69 (but still not hit £200) and paid £80 off the Barclaycard which now stands at £1320 - to be paid off by end of August when 0% ends but I think I can do it at a push. Since I've been doing the Extra Payment a Week challenge I've overpaid by £402.83 so am pleased with this.

Have been on leave from work this week as I thought I'd be looking after Mr SA. Suppose I should have gone back when he went back to hospital but quite frankly I really need a break and it's nice to relax in the lovely sunshine we're having at the moment. Also as any future holiday plans are up in the air at the moment I have to take leave sometime.

I'm going to take the dog for a walk soon and then do some gardening and relaxing on a sunlounger with a good book.

please-let-me-be-lucky

Enjoy your day. You need to look after you too Xx

*Robin*

Hello Sun.A, :hello:

Sun_Addict wrote: »

He is so tearful all the time and I'm finding it hard to know what to say to him. Nothing I say can make him feel any better. He could do with talking to someone who is going through/has been through lymphoma.
It doesn't help matters that he's getting all these setbacks. He can't see a way forward at the moment. He's also getting very demanding with the amount of time I spend at the hospital. He seems to think I should be there from start to finish of visiting times. I already spend 2 hours or more with him every single day and I think this is enough. I keep telling him I have to go to work, clean the house, walk the dog, shower, cook, shop, eat, etc but he doesn't seem to care. He phones me several times a day now his voice has come back asking me what I'm doing and what time I'm coming to visit him and why can't I come earlier. I feel like I'm electronically tagged! He's making me feel so guilty that I'm healthy and he's not. I even tried the "stop feeling sorry for yourself and get on with getting better" tactic.

(((Hugs))) and (((more hugs))) Sun.A. What you've written above sounds pretty familiar. Frustrating all round, isn't it?
Part of the problem is that hospital is so boring for the patient, most of the time.
Could you ring round MrSA's friends, to try and organise at least one other visitor besides yourself/family every day? Oncology is a bit more relaxed than other hospital departments so they might permit a work-mate to join him over their lunch-break, for example, even if it's outside visiting hours. (A friend of DH's kindly dropped in very briefly on his way to work when DH was an in-patient; took him coffee, a doughnut and the FT which kept DH going until I turned up. It was my idea so I re-paid the friend's expenses, as he couldn't have afforded the tenner a day it cost inc. parking - there's a money-leak, but DH was happier and that was more important).

MrSA would also be reassured to know that you're doing what you can to get him back home - I tried to have at least one 'phone-call I could report every day. Gave us something to talk about and DH was pleased I was 'on the case'. Every little helps.
Getting him off the ward during your visit will cheer him up too. A visit to the coffee shop or outside? Staff may resist this idea; I countered the scarcity of wheelchairs on the ward by taking in DH's although later discovered there were loads in reception that could be borrowed by unlocking them with a £1 coin (like supermarket trolleys). To prevent picking up an infection DH wore a mask for the trip through the hospital to the carpark and didn't touch lift buttons, door handles etc. I gave the ward sister my mobile number so she could call us back inside if DH was required on the ward, and made sure I had the ward's direct dial number just in case (never needed it but reassured the staff).

Sun_Addict wrote: »

On a lighter note, his tax rebate has gone into the bank

Don't think I've ever heard anything to do with tax prefixed by 'on a lighter note' before - but that's definitely good news.

As a matter of interest, do you and MrSA have Powers of Attorney? If not, that's something else to look into.
Not being pessimistic here but treatment can be a rough road; there may be times when you have to deal with something for MrSA which requires you to be legally authorised to sign on his behalf, or it must wait if MrSA happens to be going through one of the dips on the roller-coaster he's on. That could impact badly on you, so better to be prepared and hope you don't need a POA than not have one.

Sun_Addict wrote: »

Have been on leave from work this week as I thought I'd be looking after Mr SA. Suppose I should have gone back when he went back to hospital but quite frankly I really need a break and it's nice to relax in the lovely sunshine we're having at the moment. Also as any future holiday plans are up in the air at the moment I have to take leave sometime.

I'm going to take the dog for a walk soon and then do some gardening and relaxing on a sunlounger with a good book.

You've done the right thing, taking some relaxation time instead of cancelling your leave from work. As Lucky says, you must look after yourself; dog-walking, gardening and sitting in the sunshine are perfect (well, that's what I did too; precious moments to replenish the soul, very necessary ).

Hope today is a good day, have another (((hug)))

Rxx

Sun_Addict

Oh Robin you brought a tear to my eye your comments are so thoughtful. From reading your diary you have been there done that and shrunk the tshirt. You too Lucky. So thank you both and big hugs to you from me.

There is better news tonight as they are finally winning the battle with his infection. He was a little less tearful tonight but it didn't help when that cancer ad kept coming on the TV - it's like when you're pregnant and suddenly you keep noticing pregnant women everywhere. His new room is quite nice - very light and sunny and he has a fridge and his own bathroom. I asked one of the nurses if someone could have a chat to him about his condition and he said he would arrange for the Lymphoma specialist nurse to talk to him. He wanted to come off the ward for a walk around but they won't let him because of his infection and the fact that they really need to start his next lot of chemo ASAP and need him healthy. A couple of blokes he knows from work want to visit him so I've suggested they go either early or late


I enjoyed sitting in the sun today. I also did some gardening and a few household chores.


Mr SA has just called me mid-post to say his temperature has gone back up to 38 and the doctor is coming to see him about changing his antibiotics. There has also been talk of taking his Hickman Line out as this can cause infection. Big sigh!!!

please-let-me-be-lucky

Was about to say I'm glad things are more positive tonight but then the last bit of your post proves what a rollercoaster you are on. Fasten your seatbelts ......

Hope they get everything back under control quickly. Pleased you enjoyed the sun though Xx