Best day so far

[Jwilson]

I just want to say to anyone who is worrying about starting chemo......in our experience it is working well. Bill is much more interested in food and eating better than he has done in months. The pain is under control and he is feeling SO much better after three weeks. Side effect......extreme tiredness but hey we can deal with that. We have sofas and beds in our house! His aim is to put on a stone. He has lost over three so he looks like a recently freed prisoner of war all bone and skin. He may make nine stone some day soon. Seriously don't panic about chemo, it works!

June

[karen17]

Great news June. Perhaps you now need to change your retail therapy to cookery books for lovely recipies to fatten Bill up. Or just watch the 'Great British Bake Off' yum yum xx

[PCUK Nurse Dianne]

Great news June and Bill,

Well done, and yes bring on the cooking. I hope all continues to go well. Sometimes the regular contact with oncology staff and the comraderie you have with other patients and family also is quite helpful to talk to and see similar people in your situation, a little like the 'forum family' really.

[Jwilson]

Karen......I could sell cookery books! Don't use them much but I buy them. I like to think of myself as a creative cook! What I really mean is I chuck things in and hope for the best. I am having to change my style though because Bill couldn't tackle a curry just yet. Retail therapy involved Boots and a few skin products which I read about in magazines whilst hanging around hospital waiting rooms. How are you doing? Any dashes to hospital recently?

[karen17]

I'm afraid he's in hospital at the moment June Developed jaundice a few weeks ago so admitted to our local hospital for a stent. Local hospital as it should have been a simple procedure. However the stent was not inserted as Dr could see bleeding in the pancreas so he has now been stuck there for 3 days waiting for a bed at our usual hospital. Can't discharge him in case of bleeding although nothing was seen on the scan. The care at present is disgraceful.... he was left without pain relief for 7 hours when his chart clearly states 4 hourly oromorph and 3 hourly meptid, distinct lack of staff and due to all qualified staff being portugese poor communication. Mind you this hospital has just been on the news for failing CQC standards.

He is well in himself mind now his pain is relieved and has just sent me a text to bring in betting slips, racing post and thousands of football slips from Corals. The girl in the shop actually asked me what I was doing as I took most of the stock!!

I have not bought anything recently as feeling a bit fed up. Never mind the show must go on, will put a smile on my face and visit him later. So pleased Bill is doing well and sorry for having a moan!

Karen

[Jwilson]

Karen.....unbelievable what you are telling me about the hospital that is shocking! I was all cock o' hoop earlier, now Bills temperature has dropped. He is freezing cold, wrapped in a blanket. I think he is just over tired as we had quite a few callers in today and he finds that so tiring. I even have some money left at the end of the month as I have bought nothing but food and......vino! I was so cheesed off last night. Changing beds and stuff and all shopping and all driving begins to be annoying and then you feel guilty. I hope your man picks up soon and gets home. Keep in touch!

June

[J_T]

Karen, so sorry to hear about Bob Thankfully Ray's 'infection' cleared itself and no stent needed. Be all the same if he did need one, no communication from a fortnight ago!

The thing with the painkillers really gets me. They tell you take the patient's meds into hospital then they promptly take them off you! You are sat by the bed saying, its time for your meds, but there is no nurse to be found and you are twiddling your thumbs knowing full well you could have done it yourself!

June, sorry to hear Bill temp has dropped, its one thing after another isn't it? Ray's not too chipper at the moment either

I hear you too sister re, the bed changing, shopping and guilt! Glad its not just me!

Julia x

[Jwilson]

Karen and Julia, hi. Temp recovered to normal. Have either of your guys got claxane injections for DVT? Bill absolutely hates doing those, I think it's quite sore. He does them himself every day and moans about them. I think the needle is long, you stick it in your tummy area and there is a kind of sting afterwards. So today we went from great form to miserable. Oh well....tomorrow is another day! Gone with the wind?

June

[Slewis7313]

June, I have being jabbing myself with Clexane since March. They almost always sting a little after injecting, but as far as administering goes, if you feel the skin to find the area where it is flabbiest it is easier. I find the 'flabby test' works well as sometimes there seems to be brusing from previous jabs, but no visible indication (no blue mark). You can also insert the injection at an angle which apparently is not a problem, but the needle does not penetrate quite so far into the tender bit behind the flab.

Hope this helps,

Steve

[Jwilson]

Thank you Steve I will mention the angle thing to Bill. Maybe it's because he is so thin that finding any flabbiness is difficult. Bones, yes! Flesh, no! His goal is to gain a stone now that his appetite is returning. Maybe he will get to nine stone soon, yay!

[Cathy]

Hi all,

Karen, I'm so sorry to hear Bob is still poorly and in hospital. Is there any indication when he might actually get his stent?

June, Jonathan also takes clexane (since Feb) for a dvt. It did clear up the clot quickly but he's been told he has to keep taking the injections forever now. We will check that out at his next onc appt. He also has the injection into his tummy - anywhere flabby is best. Hopefully when Bill puts on a bit of weight that won't be so much of an issue

Julie, how is Ray's going? You'd said both his legs had blown up and he was having difficulty moving. Is that sorting itself out at all now?

Hope things perk up for you all very soon

Cathy xx

[karen17]

Morning people........Bob doesn't need clexane June but I do know that like Steve says its best to find a flabby bit as less painful. Pleased to hear his temperature has come down and also good news Julia that Ray didn't need a stent.

We are not much further forward I'm afraid although I have been able to bring him home on 'day release' over the weekend. They say that if he loses his bed in the local hospital he will automatically lose the bed where we are going plus they need to monitor him due to the bleeding. Obviously doesn't bleed in the day then! We are pleased he is home but worried as to how the day will progress as we were not allowed to bring oromorph home as he has not been discharged! We have to try to manage on whatever we have in the kitchen cupboard and they will give him some when he returns at 8pm. And I thought pain relief was paramount in palliative care! You cant beat hospital policy!! This morning he told them that his stools are black instead of the normal for him white. That's ok too! Nothing to worry about then.

Sorry again for ranting on.....think I will now write a letter of complaint

Hope everyones bank holiday is enjoyable or as enjoyable as can be

Karen xx

[J_T]

Bloomin' 'eck Karen, which hospital is that? I'll steer clear! What right have they to deny oramorph? Ray is instructed to take his 'as and when' the war is over and so is rationing! So mad on your behalf! Let's hope things get better for Bob.

June, I give Ray his clexane, he doesn't moan so i must be doing it right! I was told about one inch out and one inch down from navel. The needle is only very short and Ray prefers it going in at 90 degrees. No soreness ..... yet!

Cathy, Ray is very low and I will update my thread. How is Jonathan doing?

Its Bank Holiday folks so things are bound to go t!ts up!

[Cathy]

Oh I give Jonathan his injections aswell. No instructions other than somewhere flabby. He gets a little bit of bruising (not much) which I try to avoid and sometimes I manage to do it and he says he can't feel it and sometimes it stings. Haven't worked out yet how to do it without stinginess each time.

Julia - do update your thread. I'm a bit out of touch with everyone as we went away for a few days oop north (to celebrate my 49th birthday) and so I was off line. Back from Cumbria (my parents) via his brothers in the midlands back down to London for a wedding yesterday so we are BOTH shattered. Thank you for asking about Jonathan. He is still on his break and says he feels fine. I'm a little worried as he has complained of his tummy when he eats but he is very sure that that isn't a "symptom" his only complaint is that he still has tingling and numbness post oxalyplatin (which lead to some, erm, "interesting" driving last week). He has a scan on 3rd Sept and then results on the 16th.

Hope you all have a good bank holiday and the weather is a bit better where you are than it is in rainy London

Xx

[Jwilson]

Ok I looked seriously for flab just now......none available at present! Bill likes a hot water bottle around the area of his wound for a bit of comfort and ease.

Hope all your men have a comfortable bank holiday weekend....Ray Jonathan Bob and the rest. Fingers crossed no hospital dashes. Bad luck if we have one tonight as I have had a few vinos, well you gotta live.

June

[Jwilson]

Karen is still up I see.....TV, iPad and glass of wine? I really hope your good man is doing better

June

[karen17]

Just seen your post June..... how right you were. Huge glass of wine as no one to share with, laptop and TV. Was fairly looking forward to watching what I wanted last night but my son appears to have morphed into his dad and we had to watch Match of the Day!!!

As I speak Bob is now fast asleep on the sofa after eating his sunday roast. I was up at 6.30 making his favourite pavlova so we could eat early before the pain kicked in. When he wakes he wants to watch more football and the recorded Match of the damn Day before I take him back LOL