Hello everyone,

My name is Joan and I posted in "Questions & Answers" last week regarding a close friend of mine who has recently been diagnosed and had surgery for squamous cell cancer. I thought I would properly introduce myself.

I can't remember how I came accross this forum but since then have been busy catching up with lots of information and all your personal stories. Perhaps a little later my friend and his wife will want to join too, but for now I have been entrusted with gathering together any information that may prove helpful for what lies ahead. I have started to see myself as the scout, while they prepare for the battle.

For myself, I hope no-one minds me being here. I don't have cancer but I did have pioneering open heart surgery at Great Ormand Street Hospital when I was twelve. I understand fear, and someone once told me that there is nothing to fear, except fear itself. I am not sure if I have ever completely understood that, the jury is still out on that one. One thing however is clear to me. Each day I wake, I am thankful to be here. I try not to take things for granted. I try to make the space around me pleasant for others to share. I love my family, am grateful to have a loving husband and three lovely children. I also believe that friends are the family you choose for yourself.

I visited my friends today and Paul and Sandra are both doing well. We are all going to the oncology meeting at 11 o'clock on Friday, in the meantime he has been told that he will need both radiotherapy and chemotherapy. I have been reading with interest about creams, in particular radiance gel so think I will order some. I took some gold (must be good)strength multi-vitimin tablets and some build up compound today as he has lost a lot of weight since the removal of small piece of residue tonsil when they took the biopsies. He said that that was worse than the neck dissection.

It may be that he has to go to London for the next round of treatment and I have questions concerning that. I think that public transport may be out of the question. Travelling to and fro by car might be equally difficult. Does anyone have any thoughts about staying in a hotel from Monday to Friday, my understanding is that weekends will be treatment free. I can't imagine how ill he is going to be and presume that it perhaps affects individuals differently. The hospital painted a pretty grim picture so would like to perhaps have a card up our sleeve.

Be pleased for any tips.

Hi Joan, I had SCC in my sinus and had RT but no chemo.
It's cool that you can be so supportive, you really find out who your friends are when this thing comes along and support is always needed. It always helps to have an extra pair of ears at those meetings, there is so much to take in and so many questions to ask.
Not sure about your transport questions but somebody here will be better informed. Hope it goes well at the meeting, Hagg.

Hi Joan,

Paul and Sandra are lucky to have such a good friend.

I was treated for throat cancer and had 35 RT sessions, last one on the 29th July 2008. I used Aloe Vera Lotion 99.9% on my face and neck. Really helped and although there were some tough times my skin did not open up too much and today is in really good condition around the treatment area.

I stayed in hospital Monday to Friday except for a few additional nights which were required and managed to get home for the weekends. For me it was tough going at the end but I just loved getting out for the weekend.

Good luck

Ken

Joan,

I did not have Chemo only RT but I drove home every weekend. About an hours drive. Don't think I was really allowed to but it was part of me getting through the process.

One thing I have noticed about cancer patients is the determination and will to keep going.

regards

Ken

Definately Ken, pushing to the limit is the only way to do it. Hagg.

Thanks Ken and Hagg,

No problem with friend with regard to keeping going, have never met anyone as driven. Two days after operation he was kneeling down behind the bed trying to figure out how to work the electrical bed so the back was propped up. He had two drainage tubes in his neck. It was very funny to watch - don't think his wife would have been amused though.

A little team of us can drive him into London but parking etc. a nightmare so hotel might be the preferable option. Just depends on how he will be and how soon effects start - guess I will be looking at hotels, just in case, journey either way, car or public transport pretty aweful.

Regards

Joan

Joan, I'm glad you found this form....I stumbled across it myself by doing research on the type of cancer my husband has. You don't need to be a cancer patient to be here. We are here help each other as much as we can..I'm still having a hard time dealing with it, but I take it one step at a time. My husband and I have an appt at the cancer center on Monday the 6th and they will be able to tell us if he can be treated here in Sydney. If not we have to travel 4hr away...but not worries Trev.....we have a place to stay....if there is one thing I can say about myself I am to organized...well MRI for Gerry in the 9am...lets hope his treatment can be given at home, as we have a daughter getting married and another daughter expecting her first. This is our first grandchild and my daughter asked me what I wanted to be called when the baby came. Well, I decided "Glamma!!!!!" Joan Keep your chin up. Good Luck

Hello Linash

Thanks for replying when you have enough problems of your own. Congratulations on looking forward to your first grandchild. Do hope all goes well for your husband on the 6th. What a worry it all is, hope the fact that people care and are with you helps.
There are some amazing people here. Good luck.

Joan.

Hiya Joan,
My mum gained loads of info from the Macmillan people - maybe they would be able to suggest the best option. They are bound to have dealt with the problem before, I would think, especially in London.

Their contact details should be available locally

Hi Joan,

I have had tonsil cancer (stage 1), had it removed along with a neck dissection and 7 weeks of rt and 6 chemo sessions. It was hard but I am alive! I used aqueous cream and my neck split only slightly on the 2nd from last treatment. I was treated aggressivly with the highest does of rt they could give! I also have a peg fiited. 4 months later I am back at work, walk 10k for the MCF and have been on 2 scout camps! This is such a good place to come for help and advice - so ask away.

Love Chloex

Thanks for information Winnie and Chloex.

Chloex, am amazed that you are back at work so soon following all the treatment you had. Brilliant.

Have never read so much stuff in all my life. Have trawled through so much data about treatments etc. When I first started this not too much made sense but surprising how bits and pieces gradually stick. Tomorrow we have oncology meeting at 11 o'clock so have compiled list of questions. Our local hospital, where Paul had his operation 12 hours after bad news consulation, only does what they described as "whitewash" radiotherapy and very damaging to surrounding tissues. Was pretty sure the news was not going to be good before we went so had started to find out about other possible choices. IMRT in particular, we had put on our list of questions. The surgeon since the
neck dissection has indicated that Paul may be a suitable candidate for that treatment. I have wondered since whether he would have been offered other choices if we hadn't have asked or whether the hospitals just treat people with what they have "in house". Are these a matter of "don't ask", "don't get"? Downside for him will be the travelling to London. Upside is he may have a choice of either Barts & the London Hospital, also the Royal Marsden as either may accept him as a patient. Does anyone have any thoughts about those choices? Also does the radiotherapy and chemo run together or does the chemo start after the radiotherapy? How is the chemo given? Am quite clued up about the radiotherapy but am just starting out with the chemo.

Thanks

Joan

Hi Joan,

I am actually Wonder Woman! I do seem to have made a quick recover and feel blessed in that area. Some people take much longer.

My radio and chemo ran concurrently - but everyone is different. I had a canula fitted in the back of my hand every week and saline and cisplatin was administered over a 6 hour plus period (it was a long boring horrible day). I had a fairly mild dose and didn't loose my hair. I would get attached then trundle off to have my rt! Some people had line fitted and I am so glad I wasn't 1 of those! A line goes into the chest or arm via a vein and into the heart I think - ewwwwww I really cound't have done that! I didn't have this done so please don't take any advice from me on it. I just know how I felt about it!

i went to Northampton Hospital so can't advise you on those London hospitals.

Love Chloex

Hi Joan

Read you posting.

You mentioned taking vitamins during treatment.

You may want to check with the oncologist as high dose vitamins can interfere with certain types of chemotherapy.

I made the mistake last year of taking high dose vitamins and they had to stop the treatment, my oncologist was not best pleased as I had not mentioned I was taking "extra supplements".


Regards


Tony

Thanks for the advice Tony, is on the list for tomorrow. Thanks Chloex, guess we will find out more tomorrow, suppose if you have to have both, probably better to get them out of the way together, but what do I know. Let you all know how it goes, thanks for help.

Joan

Hi Joan, I only just read your story about your friends.
IF he is going to UCH they can arrange a cab everyday to pick him up and bring him home . PLEASE ask them.
I had to stay at my flat alone whilst having Radio as was staying with a friend in Enfield after the Opertion but the journey I did twice and I said pick me up form home. It was hard alone specially having to fed as well butt like they say if your determined you can do most things.
Paul
Paul