We’d love to know what you think about our new site.
My saved pages
I am in need of a shoulder to cry on so please forgive me if I use this forum...
When Philip finished his radiochemo just over a week ago, they warned that after 10-14 days it would really kick in and he should expect to feel yuk. They gave us a clinic appt. for last Thursday to could check on how he was doing. He hadn't been too bad til Wednesday (usual tiredness etc) but he seemed to go downhill after that. For example, from having no eating problems, he found that even drinking water caused him to belch loudly; sometimes the burp popped up sometimes it didn't want to (despite meds). He suddenly got 'breathy.' Sometimes nauseous. Generally yuk - I'm sure a lot of you will understand.
When we arrived at clinic (for what we thought would be a chat) they did a blood test and chest x-ray. While we waited for results, they explained that often the radio for OC can damage the lungs and certainly make the food pipe raw.
The x-ray came back no problems. The blood test showed his white cell count was 'on the floor' and they immediately admitted him. He's still in hospital and on IV antibiotics. They are being very caring and looking after him well but the veins in his arms have collapsed and they're having difficulty drawing blood. He never, ever complains but each time they try he's in agony. This morning the 'vampire lady' who's job is to take blood actually gave up after the umpteenth try, saying she wouldn't put him thru any more and she'd have get advice. Not sure what happens now. I know they've got to keep checking his count. I feel so sad for him. His positive attitude is still there, but it's getting the s**t kicked out.
We have a CT scan appt for April 6 and it can't come soon enough. As surgery is out of the question, wedesperately need to know if The Buggar has been aggressively attacked. The oncologist said the radical radiochemo was given as a 'curative' treatment. I pray he's right. The ECX given last year didn't make much of an impact (less than 30%)- altho to be fair, Philip was able to eat steak and chips no problem!
Oh yes, final bit of sympathy please: the hospital has the sickness bug and has closed 5 wards and are not allowing ANY visitors. Knowing his immune system is so low, I am soooo worried. So I can't even be with my lovely hubby. Thank goodness he's got the mobile so we can talk. But it's not the same as tender touches or just sitting there while he sleeps .......
OK. Rant over. Thanks to anyone who's read it. xx Carol
Sorry to know Phillip is having a bad time, my veins collapsed and I had the same trouble, they even tried to get blood from my feet, in the end I remembered a point in my right arm that worked from before and nobody had tried that place and lucky for me that was just the spot that worked, it’s funny but I call them the vampire doctors, there was only one guy on the ward who had fingers like divining rods so I was always pleased when he was on.
Try to keep your stress levels down, I know it can be difficult apart but if you have to be apart use the time to rest and take some gentle exercise like walks so you can be strong when you next see him,
Oh dear Carol
What a horrible situation you find yourself in, not least because you can’t even visit your hubby.
I know that some of the after effects following chemoradiotherapy can be quite severe, and breathlessness is one of the problems that can occur due to lung scarring. Sometimes, breathing exercises can help with this, as can medication so he needs to ask the doctor about this. The main thing to hold onto is that the xrays are clear and of course, that is a good sign.
You might like to read more about the side effects, although I know it won’t help you much, but at least you will be able to see that some of these are very normal.
Also, at least you know that the hospital is taking no chances with the bug, and isolating its more vulnerable patients.
Hang in there and I’m sure the vampires will be able to draw blood soon – they seem to have a nose for it!
Sending you hugs ((((((Carol))))). And as Steve says, get some rest yourself.
So sorry to hear about your situation.
My thoughts are with you.
My dear Carol
I am so very sorry. You must be in such distress not being able to visit the hospital. You take care of yourself. Our thoughts are with you,
Thanks for your thoughts Crystal, Steve & Charlotte. Thanks for the Christie link; true it didn't tell me anything we didn't know but it was kinda comforting to read that all Philip's side effects are known and usual. In the cool of the evening (a song coming on?) I know that, compared to some others' situations, I shouldn't be feeling sad - for husband and certainly not for myself. I spoke to Philip on the phone again and he said that a doctor had come and listened to his chest/back and prodded his stomach. He confirmed that the x-rays already taken were clear and the breathlessness would go away. He said nothing to worry about.... HA! easier said than done, tho my lovely hubby, in his usual way, was satisfied. "I've told you I'm going to beat this; it's not going to get me" he reassured me. He also had a visit from another 'vampire' who managed to get blood 1st go. Interesting to hear you had same problem Steve. When I had chemo 6 years ago, my veins collapsed too but my regime was only once every 3 weeks for 6 months so they had a little time to recover in between.
It's awful not being able to visit. Perhaps they'll re-open the wards 2morrow... I do hope so.
While here, can I ask if any of you can tell me how long after treatment & being neutrapenic (sp?) the immune system is compromised? I don't want to make Philip live like a hermit but I'm a bit paranoid.
Off to bed soon. Thanks again. xxx Carol
Charlotte: Just read your profile and want to wish you all you wish yourself for the surgery next week. Be strong xxx Carol
Sorry Grace - I left you out in my thanks for thoughts! xxx Carol
Dinnae fret aboot it! Do take care and sleep well.
The Neutropenic bit - I have probably not spelt that right!
I went borderline neutropenic each cycle for the first 4 cycles. In the middle of cycle 3 I got swine flu (I should have had jab but my docs did not want to open a whole box just for me so was due jab a week or so later to fit their timetable!) this time my levels went right to the bottom!
They did give me a jab in my stomach (it hurt - yes) which took the levels up. I believe (hope my memory is right) that they give up to 3 jabs to up your levels which gives you something to fight with.
You can't hide away totally - cancer is crap but no social life or contact with others can bring you down further - cancer is lonely enough for you both as it is!
Not sure if this helps but I think you just have to do normal stuff but - tell freiends that if they do have a cold or a cough to call you instead of visiting.
Finally - I am a firm believer in SKYPE - if you have a PC with a camera (cameras are cheap though at supermarkets and well worth it) you can talk to loved ones for no cost if you are internet enabled. I talk to my ex sister in law in the US for HOURS at a time and my mate up the road too - It is like a coffee morning without germs. Might be worth a try - if you don't have PC see if someone can loan you a lap top for a bit - really helps me.
Hi Charlotte: thanks for the specifics. Philip still in hospital but they are only giving him IV antibiotics 3 times a day - no jabs in tummy. Mmmmm .... To be fair, today's blood tests showed his levels coming back up so I guess they're doing it right. They again had problems finding a vein that would give blood. I still can't visit (that's 5 days the wards have been closed to all visitors!) and have had to make do with chats/updates on the mobile; thank goodness they allow them on the ward!
As to friends/family visiting, they know the drill re. not visiting us with coughs,colds etc. I do have Skype but have only used it with our son who lives in America. But it's certainly an idea as an alternative when our other kids/grandkids can't visit. Ta ever so!! Take care xxxx Carol
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts who can help.
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.