Hi all!

Its been AGES since I logged on here so I thought I should get my lazy bones in gear and let you all know how I am doing! Thanks for the messages while I have been offline.

Well. The op went great. They did a neck dissection in the end (I was never clear if they were going to do that) but there was no spread to the nodes. The graft from wrist to mouth went really well. I was in intensive care for 1 and a half days and went up to the ward after that.

The first 4/5 days were really tough. I was frustrated with not being able to talk and was really uncomfortable sitting up the whole time. My mouth was not really all that sore (neither was my arm) and though I had morphine on a button I didn't really need to use it all that much (like you said John). The main thing that was bothering me was not being able to sleep cos

a) the nurses kept waking me up to check my sats

b) it was REALLY hot and sticky cos of the warm weather

c)I was not allowed to lie flat and get comfy on my side

But I have to say, the nurses were brilliant and as soon as I was able to start talking it was great to be able to communicate with them. By day 5 I had most tubes out and was able to start moving around. That was the best thing. As soon as the last neck drain was out, I was off! I took the feeding drip with me but that was not a problem. I managed to give myself a propper wash, get changed into some comfy PJ's and wander about. And really, I went from strength to strength after that. My op was on the 15th June and I left hospital on day 9, the 24th.

Since then I have been feeling really good. We had the path results back and I need both radio and chemo therapy (6 weeks starting on the 21st Aug) but I am determined to have no nasty side effects and to keep busy as I have been so far. They tell me that the cancer has not spread yet so chances are good, but that it does seem to be doing pretty much what it likes, which is worrying. The consultant said my body did not seem to be doing much to combat it, which confused me. He did not seem to have any ideas as to why that was the case. I took an HIV test to rule that out and that was all clear, so no idea why the body is not fighting back.

But, I remain positive. I have had a few down days where I have become very negative but its lifted very quickly and I've managed to get back to my old self pretty quickly.

If anyone has advice about radio and chemo I'd be very interested to hear it. I'm a bit worried about the sun burn type side effect and also about potential swallowing problems etc. They say the mouth gets very sore and very dry. I am wondering how sore is very sore and how dry is very dry?! Hehehe. If anyone can help wit that, please do post. I know that some people do not have all the nasty side effects but the consultant has said that its "really going to knock you for six". Is he just giving me the worse case scenario?

Much love to you all

Hi Mike
I hope that the consultant is just giving you the WCS although while you're going through it, it's not that pleasant. I managed to get through radiation without any real burns, but the exterior skin was sensitive and I did use some zovirex on a few small blisters. Eating solids became a problem for me and I lost a lot of weight. I used "Ensure" during my treatment and up to 6 months after to keep my weight stable. The dryness in the mouth gets better after all the treatment has finished - but I fear it will never return to the old situation. Bread, rice and different meats are still dry for me - but after 8 months since the last chemo, I'm not going hungry. Maybe I've been lucky, in comparisson with some reports I've read from others, but I believe that you have to be prepared to adjust to the new situation you've been dealt with and make the most of it. It sounds hard while you're actually going through the process - but as they say, time is a great healer and a positive attitude, which it sounds that you have - goes a long way to the road to recovery.

I wish you well and I suggest you keep the bottle of water handy day and night.

Good Luck - Pete

i am sure loads of advice will come flowing in from all those who have gone through the process, but the most interesting i found, from this site and its expert advisers, was........ Skin -use baby bath, for washing all skin and baby shampoo on your hair. All others seem to have chemicals of some sort in them, which can aggrivate the skin. Obviously you will have been told to move to electric shaving rather than wet, to avoid any cuts which will be slow to heal.
Teeth -Dental assessment, and removal of any teeth before the radio is a big defo - again, effects on healing/infection if not seen to now. Excellent oral hygiene throughout - using a childs toothbrush so not to cut gums, but ensuring teeth clean. Using mouthwashes 'religiously' given by the hospital - some of the ones you buy in shops can have strange reactions, so again, advice from the specialists needed.
Not using aftershave on face/neck - but you can still wear on wrists or allow a few drops on clothes so you have the old famililar smell.
Creaming of your insision scar with a non oil based cream. If this weather keeps up, keeping out of the sun as you will be more suseptible to burning, especially in the treatment time.
But mostly, keeping the old positive mental attitude going, and seeing that light at the end of the tunnel
Good luck
s

Hi Mike

Great to hear you are doing so well, I went through a similar scenario last year and my recovery was pretty much as you describe although I spent longer in hospital as I was unlucky enough to get MRSA in my arm where they took the donor 'flap' from.

I didn';t have chemo but I did have radiotherapy, the side effect I had were not as bad as I had been led to expect - all I had was dry mouth, horrible horrible taste in mouth and feeling very tired in the afternoons.

I used aqueous cream on my skin and massaged well into the scar areas night and morning. My scars have pretty much faded now and are barely noticeable. I lost some hair on the nape of my neck where radio beam entered and exited but it has now grown back.

The absolute worst you wll feel is about 10 - 14 days after the end of radiotherapy bt after 2 -3 days you should begin to pick up and go from strength to strength. I had a PEG tub and I think it was my life saver as I was able to put in all the nutrition my body needed without actually having to eat which I really didn't feel like doing. I lost all sense of taste, but that started to come back about 2 - 3 weeks after the end of RT. I had a real craving for the taste of something red! and it was so lovely to finally be able to do that, I drank nearly a whole bottle of ribena in one day!.

Anyway I think I've rambled on enough. Look after yourself, get plenty of sleep and keep up your sterling PMA!

Best wishes

Rosie

Mikey... You're back... and I'm so glad to hear from you!

Well now... the surgery is behind you (thank God) and sounds as though things went quite well. I am so happy for you. Although the upcoming radio/chemo will be challenging, YOU can handle it. I will not "sugar-coat" my thoughts... Radiation alone is hard... but radation and chemo in combination is a bitch... There is no getting around that. Good news is... the R/C combo does a POWERFUL job at killing cancer. You wrote that the neck dissection revealed no spread to the nodes.... THAT is the best news of all. Once the radio/chemo attacks the localized cancer, a recurrence is far less likely when the nodes are not involved. (Danny's SCC had spread to the nodes, which put his cancer in the stage 4 category, even though his tongue tumor was only stage 1 to 2.)

Danny had 7 weeks of radiation (52 total treatments) with four separate intermittent weeks of round-the-clock chemo (both 5FU and Cisplatin) throughout and just afterward. Have you been told yet if the chemo will be in-hospital and constant, or on an outpatient basis? Do you know the type(s) of chemo you'll be receiving? Will the radiation be once or twice daily?

I think the first side effect you may have to deal with is heavy fatigue, and it seems to hit fairly quickly, sometimes after just a week or two into the radiation period. Do not fight rest. Get as much as you can, but also try to have a period of activity each day too... even if it's just walking through your home, down the hall, extending arms out and back, etc.

Other potential side effects to come will include radiation burn, 'cotton mouth', heavy thick mucous, soreness in mouth and throat, nausea, and very likely -- swallowing problems. Even BEFORE my Dan started treatment, they inserted a PEG (feeding) tube. It is common procedure in our area for the head/neck cancer patients because so many get to the point of being unable to eat enough orally to sustain health. Danny's swallowing failed after just two weeks of radiation/chemo. He was tube-dependent throughout the rest of treatment, and 11 months beyond (due to a radiation-induced esophageal stricture). Of course, now he eatings most everything and maintains his weight, no problem.

Advice... Be sure that your doctors are always aware of your pain levels. I believe pain (and nausea) should be controlled early on, and throughout treatment. Do not be stoic about this or try to "tough it out". You will be better able to tolerate or deal with other side effects if the pain and nausea is successfully monitored/controlled. Dan's pain was controlled so well that he never really experienced the horrible sore throat that some describe having, or any real pain associated with radiation burn. (He used the Duragesic pain patches, Fentynal.) His biggest challenges were the mucous, nausea, extreme fatigue and just feeling like he did not want to get out of bed. Sometimes he didn't... for days. He also suffered deep depression. That is also something you need to be aware of and I highly recommend that anyone going through all this start on an anti-depressant BEFORE "bottoming out".

Your medical team will offer guidance throughout as each side effect presents. When the radiation begins to break down the external skin, oncology nurses should be well-trained in methods of skin care and offer products-methods to sooth the burn. Some hospitals have a skin specialist who makes rounds and monitors the radiation patients.

Be sure that you also get the services of a professional nutritionist who should be very involved in your care, especially when it comes to using a PEG tube.

As you begin to experience a new side effect, come to us (or have someone else, if you are too ill to sit at the computer) and ask specifically for guidance/advice throughout each phase of treatment. Don't try to get all the answers at once. There will be lots of people with lots of practical tips to help along the way.

Mike, you will do just fine. Remember all those who have walked this path before you (including my Dan) and know that, once treatment is over and the cancer is gone, healing begins. Life WILL return... as close to normal as is possible... and soon you will be helping the next distraught souls who log onto this website, guiding them through THEIR treatment and recovery. An inspiration you will be! God bless you, Mike! My prayers on your behalf continue. Let us help you through the months upcoming, with any and everything, and we'll all celebrate with you when the doctors say... ALL CLEAR!

From my heart,

Melanie

Hi Mike,
I am 2+weeks in to having radio and chemo. Ihave today just started using my peg. My mouth is sore and my swallow is very painful. MY doc says this week is going to be hard. I have had 1 session of chemo(carboplatin)won't lose my hair! And i have radio every day for 4 weeks. Next and final chemo next tuesday,Feel a bit queasy occasionally-usually when I haven't had enough nutrition. My advice is don't wait to use your peg as you will lose weight!
Good news I still play tennis just come in from 3 sets and I can manage 9 mholes of golf.I don't play well at moment -but hey I'm out of the house and socialising very important for me.
Kepp smiling

Anne W

quote:

Originally posted by Maybemike:
Hi all!

Its been AGES since I logged on here so I thought I should get my lazy bones in gear and let you all know how I am doing! Thanks for the messages while I have been offline.

Well. The op went great. They did a neck dissection in the end (I was never clear if they were going to do that) but there was no spread to the nodes. The graft from wrist to mouth went really well. I was in intensive care for 1 and a half days and went up to the ward after that.

The first 4/5 days were really tough. I was frustrated with not being able to talk and was really uncomfortable sitting up the whole time. My mouth was not really all that sore (neither was my arm) and though I had morphine on a button I didn't really need to use it all that much (like you said John). The main thing that was bothering me was not being able to sleep cos

a) the nurses kept waking me up to check my sats

b) it was REALLY hot and sticky cos of the warm weather

c)I was not allowed to lie flat and get comfy on my side

But I have to say, the nurses were brilliant and as soon as I was able to start talking it was great to be able to communicate with them. By day 5 I had most tubes out and was able to start moving around. That was the best thing. As soon as the last neck drain was out, I was off! I took the feeding drip with me but that was not a problem. I managed to give myself a propper wash, get changed into some comfy PJ's and wander about. And really, I went from strength to strength after that. My op was on the 15th June and I left hospital on day 9, the 24th.

Since then I have been feeling really good. We had the path results back and I need both radio and chemo therapy (6 weeks starting on the 21st Aug) but I am determined to have no nasty side effects and to keep busy as I have been so far. They tell me that the cancer has not spread yet so chances are good, but that it does seem to be doing pretty much what it likes, which is worrying. The consultant said my body did not seem to be doing much to combat it, which confused me. He did not seem to have any ideas as to why that was the case. I took an HIV test to rule that out and that was all clear, so no idea why the body is not fighting back.

But, I remain positive. I have had a few down days where I have become very negative but its lifted very quickly and I've managed to get back to my old self pretty quickly.

If anyone has advice about radio and chemo I'd be very interested to hear it. I'm a bit worried about the sun burn type side effect and also about potential swallowing problems etc. They say the mouth gets very sore and very dry. I am wondering how sore is very sore and how dry is very dry?! Hehehe. If anyone can help wit that, please do post. I know that some people do not have all the nasty side effects but the consultant has said that its "really going to knock you for six". Is he just giving me the worse case scenario?

Much love to you all

Welcome back Mike! Great to hear from you and to know that your op is over and you are recovering so well. Reading your post was like re-living my time in hospital too. Not being able to talk is a bummer but it's amazing what hand gestures can do!! And the heat............oh, don't remind me! My room was kept at some ridiculous temperature for the flap to 'take' (I was in a side ward due to my MRSA) I thought I would melt away! I don't understand the comment about your body not fighting the cancer. The fact that you have recovered so well would indicate that you have a good immune system and if the margins were good then presumably the cancer is no more, so what did he mean...perhaps Dr Joshi can throw some light on it (Poor Dr J, we expect him to have an answer for everything!) It is best that you don't lie flat in bed though as sitting or being propped up with pillows will let the lymph escape and stop you feeling swollen around your neck area. Others will (and have) come up with helpful tips on radiotherapy. Keep doing what you are already doing as you sound to have the right attitude and going from strength to strength - good on ya! Bx

Morning Mike, glad to hear you got through the first part of your treatment. Now the hard work begins! Like your Docs, my Hubbys (Brian) Docs said "Its going to get worse"without explaining what was going to get worse, & this was reiterated by every member of staff, we called it the Mantra. When the very painfull throat hit in on the 10th day, the Onc. immediatly upped his analgesia so that he felt no pain.
Brian cannot take a pill of any kind without getting a reaction, so we knew we were in trouble when we saw the prescription of medication. Sure enougth, he had to be admitted to hospital for the last 2 weeks of treatment
His skin did discolour but no worse than that. We met another PT whose skin has broken down but he said it wasnt painfull & he just lathered on the Aqueus cream.
At the post treatment Clinic we heard a new Mantra "Now its going to get better" Oh the relief of hearing those words. And things have got better month by month.
So Mike, your a young man & have a good attitude so will get through it. All the very best to you, when you can, come & let us know how you are. We're all on your side.