My Melanoma Radiotherapy Diary

help with swelling

2010-04-10T20:58:01Z

It's now been awhile since I had my radio and I feel great again. For the last 2 days I have completely gutted my back garden - and I mean gutted!!! There were loads of trees and Ivy everywhere and not enough grass or flowers, so it's all gone. Took 3 cars, 4 trips to the tip to get rid of the rubbish - that's how much has gone!!! I just feel like I have my mojo back again.

But.... My left hand is really swollen - I've had to take my wedding ring off and my watch and it looks awful. I've had surgery on my left side - 12 lymph nodes removed from my armpit etc. So can anyone give me some advise? Is this just because I've over done it in the last 2 days - or should I be worried about, whatever lymph nodes I have left on that side, not draining properly, or something??? It doesn't hurt but I'm due to have more surgery on my other side (kidney area) on Friday - don't want anything to stop that. How many lymph nodes do you have under your arm? What can I do to reduce the swelling?

Any help would be greatly appreciated,

Thanks, Charley xx

Results from Radiotherapy..And the next step..

2010-04-01T21:04:32Z

Hi again. So finished Radiotherapy on March 15th, about 16 days ago. Had my scan last week (with so much dye I must have glowed!!). Had the results today and a chat with my surgeon.....

IT'S WORKED!!!!!

The tumour under my breastbone, that had the radiotherapy has shrunk significantly. So it shows that my tumours, in the future should respond to radiotherapy, if they are somewhere where they can't operate. Yippee. Good news.

Then it gets better. The tumour by my kidney hasn't grown at all. So that's 6 months where it hasn't grown at all. Good news again.

Then it gets even better - and it hasn't gone anywhere else. HAT TRICK!!! That is the best news we have had in years!!! So we are full steam ahead for an operation on my kidney tumour. Operation to happen on April 16th, so 2 weeks time.

So get over that and then get on with life for a bit I think!!! (Hopefully!!) xx

One Week On from Radiotherapy

2010-03-23T13:09:05Z

So it's been just over a wek since I finished my radiotherapy. What's been happening? Well, I'm still tired, but not as bad as I was. Skin did get sore, but so much better now.

Had a call from my consultant yesterday, I'm going to Birmingham on Wednesday to drink some contrast dye, to then go back the next day to have a scan on my kidney to check on that tumour, in readiness for my operation. Never had to drink the dye before (always had an injection before) and never the day before. Not sure what that means, whether it's a different type of scan or what. Anyone else had to drink the contrast dye the day before? What does it taste like? How much do I have to drink?

Suppose I'll find out on Wednesday when I get there. xx

Day 15 of Radiotherapy

2010-03-15T11:37:19Z

It's finished!! My last day of radiotherapy and it's done!!

The machine in the normal room that I'm in was broken so had to go to a different room and have different nurses, but to be honest nothing could have ruined my day today. That was my last time on the machine. I did find the nurses that normally did my treatment as I had a box of chocolates to give them. Well, I'd seen them every day for 3 weeks so just wanted to say thanks to them.

The sun is shining, I've finished my treatment, What a lovely day. Nothing can ruin my day today - not even swimming lessons this afternoon for my girls after school!!!

Day 14 of Radiotherapy

2010-03-12T12:15:50Z

Really early appointment this morning so a bit of a rush. I was in getting changed when they called my name. I was in and out of the hospital within 15 minutes!!! I only have one more treatment left, on Monday. It's a shame I have to go back again after the weekend, but that's just the way it is.

I haven't seen any doctor or anyone throughout my treatment and not heard from anyone about what happens next. Talked to the nurses today and I should have had a follow up appointment through for about 6 weeks time. I've had nothing yet, so will have to chase the doctors secretary.

I'm glad it's the weekend. It's not only the physical effects of going to birmingham every day, it's the emotions involved in having to think about the cancer every day. Normally, with all the school stuff and house stuff I can sort of put it out of my mind, but having treatment every day has made me think about it every day.

Mothers Day on Sunday and we are having my mum for lunch. Darren's cooking. Hope it's a nice day.

Day 13 of Radiotherapy

2010-03-11T15:56:58Z

Getting close to the end of treatment now and that's what I'm focusing on. I'm tired and the skin is sore but I'm nearly done.

Today has been quite uneventful. Got the train, got there early. Got in for treatment, came home. fell asleep on the sofa. Went to pick the girls up from school. Then the madness began. How can they eat so much? Where do they put it all. My 5 year old can eat her weight in chocolate but try to get her to eat fruit and it's like pulling teeth!!!

I have to say at this stage how great my hubby is through all this. He's done cooking, ironing, housework etc and still worked and given me gentle hugs when I need them. He lets me sleep when I need it and does loads with the girls while I just sit and veg. I love him to bits but never tell him. I couldn't have gone through all this without him and I can't bear to think of him on his own. He's searched for second opinions that saved my life when it went to my lungs and the doctors said they couldn't operate. He found someone that would. He chase all my appointments and gets me in to see people. But more than that he takes the abuse from me when it all gets too much and I have to let it out at someone. He doesn't deserve it, but takes it all and still loves me. Why does he have to deal with this. He's a lovely man that doesn't deserve it. Just had to say I love you Darren even though I'm a grumpy old troll some of the time.xx

Day 12 of Radiotherapy

2010-03-10T16:35:11Z

I have noticed that my chest is beginning to look a bit red and is slightly sore to the touch. Not badly and not enough to mention to any nurses etc, but I can see and feel a difference. Also I can't breath in deeply. hurts to sneeze, so maybe something is burning my lungs. Nothing major. Nothing to complain about, just wanted to note it for future reference really. When The girls came with me last week, Charlotte wore her pedometer and worked out, between the 2 trains we walked 2 miles each way. So 4 miles a day!!! Getting slower at it, but getting good exercise at the same time!!

Treatment back in the normal room today, with the normal nurses. all done really quickly and went well. Tried to get home to get the girls from school but they come out at 3:20 and train didn't get in until 3:40 so inlaws picked them up today, but I wasn't far behind. Turned up at Grandmas to bring them home and I think I was a bit of a disappointment. Don't they realise how hard I tried to get there!

Well, only 3 more treatments left. Thursday, Friday and Monday. Nearly done it!

Day 11 of Radiotherapy

2010-03-10T16:24:35Z

Late appointment today (16:00) so had to arrange for the girls to go to Grandmas for tea. So what do I do with my day then?? Long hot bath, with a cuppa and my book. Not allowed bubble bath etc but it was nice to just veg instead of rushing around.

So got train at 2ish and got to the hospital in time. The room I normally get treated in is being serviced so I'm in a different room with different staff. We were all talking in the waiting room about side affects. We all said it's not as bad as we thought it was going to be. The worse thing was the fact that it makes you think about cancer every day, which can be quite hard. Normally I try to get on with normal everyday things and keep busy. Yes, you have to think about it, but dealing with it like this is a bit hard. Just have to put a postive spin on it and hope it's working.

So in for treatment. New room, Better music (if you're an '80s girl like me - Duran Duran!!). Machine was the same and just as uncomfortable. But it was ok. It's another day ticked of the list.

Day 10 of Radiotherapy

2010-03-09T12:29:54Z

Day 10 went without too much bother. Still feeling sick (mainly when I'm rushing around to sort the girls out before school with breakfast and lunchboxes). But really quite an uneventfull day. Very tired and once I sit down it really is a struggle to get up and moving again. Skin is ok, not sore. Not had any problems swallowing, so as far as side affects go I'm ok really. Just tired and a bit sick.

That's it really for today.

Weekend, day 5 to 9 of radiotherapy

2010-03-06T13:59:17Z

No updates for a week as laptop had a virus and was poorly. It recovered with a bit of help from my hubby. Pity it's not that easy with Melanoma!!

Anyway, had a nice relaxing weekend and did as little as possible. Still felt sick on and off but felt ok to have curry for tea on Saturday (so couldn't have been that bad!!). Went out to DIY shops to look at tiles etc for the bathroom. Still can't decide.

So back to the QE in Birmingham on Monday. On my own this week. It's only the treatment so should be ok. Taking painkillers and trying to move my arm to "warm it up" . All helps. Still feel sea sick, but getting better every day. Had a good appointment time so was home by 12:30 so had time to rest before picking the girls up and doing their swimming lessons. I hate Mondays!!

Tuesday, again an early appointment and feeling ok. Just treatment again so went well and wasn't too poorly.

Wednesday. Can honestly say today I feel ok. Not sick or tired. Think I have put my nerves to bed and just got on with it. It helps having these early appointments. I can drop the kids of at school, get a train, do what I have to do, get home and put my feet up before having to pick the girls up.

Thursday. Day 8 of treatment!! So I'm more than halfway through now. I have done more than I have left to do!! Yippee. Had treatment and scan today. Didn't know that until I got under the machine so I'm sure that was better for me as I would have only worried about holding my arm up. Ouch it hurt. Shut my eyes and just hoped it would be over. But the sickness has gone. Think I've sussed out when to take the painkillers to get the best from them.

Friday. Last day of the week and the kids are with me today!! They have a teacher training day at school. Thought about leaving them with grandparents but to be honest, Charlotte is 10 and I thought it would do her good to see what it's all about. Katie's 5 so she just thought it was great going on the train!!! There was a long queue today but I explained things to the girls and when it was my turn the nurses let them in to see the machine before my treatment. Think that helped too. They saw how long I wait around. How quickly I'm in and out for the treatment and what I lie on to have my treatment and the machine that's trying to make me better. We then went for lunch, round a bookshop and home again on the train. It was exhausting but fun. I fell asleep on the sofa when we got back and the girls were tired from the walking so vegged infront of the telly. Darren got us all a chinese for tea so no cooking tonight!!!

So my second week is over. Only one full week and a day left. Fingers crossed it's working.

Day 4 Of Radiotherapy

2010-02-26T21:00:48Z

My Mum came with me again today but think I will do next week on my own. Got to the hospital without too much trouble and waited my turn. Lots of people there that I'd seen all week. Lots of elderly men today. All arrived and changed into dressing gowns and slippers. Did look funny, all sitting there in dresing gowns, nattering like old women!!

Anyway, got to my turn and had my treatment and the last of my scans. Yippee I've done them all. The pain in my arm was really bad today and it really aches tonight. I just think the stretching of the scar tissue under my arm is just so painful. Next week, with just the treatment, should be a lot quicker and much less painful. Hopefully.

So that's it for a couple of days. Got the weekend off and have nothing planned. Got to look at bathroom tiles and suites as we are in the process of ripping our en suite out, but mainly going to rest and hug my family!! Darren's on cooking duty, and doing the ironing!!!

Feel tired and sore. Tired mainly I think from just travelling everyday. Don't think treatment tiredness has kicked in yet. Sickness is getting better and I'm starting to eat better again (nerves always makes me lose my appetite). Off tea though. Usually drink gallons of the stuff, now can't manage half a mug!!!

Looking forward to no alarm tomorrow morning. PJ's day I think!!!

Day 3 of Radiotherapy

2010-02-25T20:32:33Z

Had an early appointment today so got the girls to school and met my mum at the train station and off we went. Felt sick and nervous but nowhere near as bad as the previous day. Got there early, changed, popped my card in and sat down and waited.

There were a few people there that I had seen on previous days, we all said hello and chatted about things in general. There was one old lady who was paying £70 a day in taxi fares to get there for her treatment, so we all chipped in with ideas of how she could get some help (talk to Macmillan nurse about help with cost, hospital transport etc). It was nice that we could all communicate on the same level, you know? we were all going through the same thing, it was a bummer, but it was like being part of a club. Would I normal sit and talk to a group of people so much older than me, no not really, but it was all very ... social!

The scan and radiotherapy again went well. Told them about the sickness, they suggested ginger beer etc. But I did it. Only one more day with the scan added on the end, then it's just the radiotherapy.

All went so well I was home by 1:30. Which gave me an hour to sit, on my own, at home, quietly with a cup of tea. It was almost normal. Then went to get kids from school. Even felt less sick so helped my 10 year old make tea (well, she's been asking to help and we did it together, but if you ask her, SHE made tea!!).

Tomorrow's a late appointment again, so will get the kids to school and spend the morning in the bath!! until it's time to get the train. Last one tomorrow before the weekend!!

Day 2 of Radiotherapy

2010-02-24T17:35:08Z

I did it!! I had my radiotherapy and the scan afterwards!!

I felt sick with nerves all morning as my treatment wasn't until this afternoon. I went on my own on the train yesterday, but I gave in today and asked my mum to go with me. It did help to keep my mind off things and kept the sickness at bay.

We had to wait around for my timeslot as they were running late, which made my nerves worse. But it gave me time to take some more painkillers. Then I got called. It was the same nurses as yesterday and they asked how I was feeling. I said sick already, so one went to get a bowl, just in case.

They were great though. Lined me up really quickly, and did the radiotherapy. I shut my eyes and imagined I was on a warm beach. Helped loads (or the painkillers made me high as a kite!!). Then once that was over someone rushed in and changed machines. Kept talking and telling me it's nearly over, just a really quick scan. Then she ran out again and the scan started. They put some music on and I shut my eyes again. I couldn't tell you what the music was but it covered up the noise of the scanner a bit.

So I did it. Radiotherapy and scan. Got to do that again for another 2 days and then it's just the radiotherapy after that. Still have a sick feeling and can't face eating yet, but I'm better than yesterday. and tomorrow will be better than today. Got a morning appointment tomorrow and Mum's coming with me again so not so long to worry about it.

Thanks for all the comments everyone. The support really helps. Just knowing I'm not ranting on to myself but there are others out there that have been there and done that REALLY helps.

Day 1 of Radiotherapy

2010-02-23T20:02:00Z

So today it all started. Radiotherapy on my tumour behind my breastbone. I'm in so much pain now with it I can't wait to get on with it.

Got to the QE hospital in Birmigham early and changed into my breast gown that I will be wearing for my next 15 sessions. Got called to a little room to go through the paperwork, make sure I wasn't pregnant, go through the side affects. Told me I couldn't wear deodorant for the course of the treatment, and I couldn't shave my armpits!!!!! What!!! That was a bit of a shock!! Anyway, then got taken into the radiotherapy room.

Got on the machine and they lined me up. Now I have had surgery under my armpit on my lymph nodes and I have real problems lifting my arm above my head. But for this treatment It has to be up for quite a long period of time. It's agony. They told me they would be doing the radiotherapy first and then scanning with another machine to get some pictures of the tumour at the start of treatment. I was ok during the radiotherapy. Yes the machine moved round my, buzzed and whirred but it was ok. Except for the pain in my armpit and across my breast.

Then someone came in and changed machines. This is when it all started to go wrong for me. I have had loads of different types of scans so they shouldn't really bother me. But as they start scanning I start panicking. Whether it was the pain in my arm, or the nervous or the overwelling feeling of dread, but I have a panick attack. I'm shouting for them to get me out. I'm hot and sweaty. They come in and help me up. I sit up and almost faint then tell them I'm going to be sick. Luckily bucket arrives in time.

So scan ruined (they will have to try again tomorrow), I'm white as a sheet and feeling like a right prat. They get me a drink and I recover, get changed and leave.

Will talk to them tomorrow about the pain in my arm and what can be done to help (if anything) and what to do if I have another attack. Hope they are understanding tomorrow... Hope I get through it without another attack. Fingers crossed

Planning CT scan

2010-02-19T18:17:01Z

So I've had my planning CT scan. Went by train from Warwick to Birmingham as this is the trip I will have to do during the treatment. Not too bad. A bit of walking between stations. Hopefully will be able to have my treatment and still do the school run in the morning and afternoon, so hoping to get a lunchtime appointment slot.

Got changed into my gown, which will be mine for the next 3 weeks. and then taken in for my scan.

A radiographer sat down with me and went over how long my radiotherapy would last, how I would feel and any side affects I would expect. I'm having 15 sessions (3 weeks). Side affects could be tiredness, sore skin (E45 cream can help), and because of the tumour being quite central, I might have problems swallowing. If so they can get the dietician to come and talk to me.

I was then lined up in the machine and had to put my arms up. This was the most difficult part. As I've had surgery under my left arm it really hurts to raise it up for long. Radiographers (three of them) left the room and came in a few times to move me about to straighten me up etc before they scanned. You have to keep so still, they say to let them move you about as they know what they are looking at. So, then the scan started. I didn't have to hold my breath, like a normal scan (or drink the water before hand, or have an injection). Once they scanned me, they came back in and lined me up against some markers (looked like red lines of light) and marked some points on me with a marker. under each arm and twice along my breastbone. Then they went out and scanned me again.

Once the scan was finished they then gave me my tattoos. All four points that they marked with marker pen, were tattooed. Just a drop of ink and a pin prick. Basically I have four black pin prick marks tattooed on me.

Then I was done. Got changed and they showed me where to go for my treatment and where I would find my gown every day. And that was that.

So I'm ready, physically for the radiotherapy. Got to get the kids sorted (aged 10 and 5). They know what's going on, but may need help with their swimming lessons (hard work on a good day, let alone when I'm tired) and the rainbows and guides run and afterschool clubs. Got loads of familly around to help out. Then we just have to play the rest by ear. Depends how tired I get. I keep thinking it's only three weeks, how hard can it be. Maybe in three weeks time I'll look back at that comment and laugh!!! Housework, ironing and food shopping will have to take a back seat, or be done by Darren, my hubby.

Next entry will be after my first session next Tuesday...