March 2018 Radiotherapy

[twistie123]

Moomoo I have replied to your post on the December thread. Get your holiday booked you will be fine. It will do you the world of good.

Kaz xx

[moomoo123]

Hello ladies I'm from the January chemo thread as currently on chemo but looking ahead to my radiotherapy treatment in June as I'd like to book a holiday abroad asap after this. However i wondered how long to leave it ? Any advise ? I'd like to go within a couple of weeks of finishing radiotherapy before school holidays start but wondered how long after the radiotherapy you have had problems that could impact on the holiday. Obviously I'm expecting fatigue but have you had many skin issues.? Or swelling pain or a reasons not to go abroad.sorry the thread seems too long to route through .im convincing myself I'll be fine but am I blocking out reality of potential problems if I go within 2 weeks was thinking of Italy and may just be too hot. Desperate to get something booked but should I leave it longer? Any advise or experience post radiotherapy please let me know x thanks

[ladybowler]

Kaz

Pleasure any time my dear

H xxx

[twistie123]

Thanks Helena, wise words as always.

Kaz xx

[ladybowler]

Kaz

Oh that is fantastic news re work.  Isnt it funny like with everything on this journey, we imagine something is going to be a lot worse than it is, there you were really worried about going into work and everyone was so lovely, that will really help for when you do go back to work.  Very good idea about the phased return and the hours, but remember that they have said it can be changed if necessary so do not be a martyr my dear.

Perhaps OH will be in touch now so that they can ensure everything is in place ready for your return and will make recommendations as well.

Have a wonderful weekend which I am sure will be much more relaxing now you have today over with.

Helena xxx

[twistie123]

Hi Helena,

Thanks for your reply. I have been to see my GP and have got another sick note for two weeks. I feel much better and have actually been in to work this morning to hand in my sick note. I had been really dreading going in and seeing everybody but it was actually lovely to see all my friends and they were all very supportive.

I am going back to work Monday 14th May and my HR manager has sorted my shifts out so that I am only doing 4 days of 10am to 2pm for two weeks which I can change further if its too much and then they will see how I am after that. She was really good and said that they will support me in whatever is best for me. Apparently Occupational health have not been in touch as they didn't want to put any pressure on me so I do understand that.

Have a lovely weekend.

Kaz xx

[twistie123]

Hi Alibobs,

Thanks for your advice, I know that I need to look after myself and stop worrying about work. I am not even sure why I feel guilty for having so long off as I am on SSP at the moment so its not even as if they are paying me.

Have a lovely weekend.

Kaz xx

[twistie123]

Hi Liz,

Thanks for your reply. I am sorry to hear about your partner and I fully understand that you need to be well yourself.

I love this forum, it is nice to know that there is always somebody that can give you good advice.

Take care and have a lovely weekend.

Kaz xx

[ladybowler]

Kaz

Oh that is good news that they are being supportive of you.

You need to take as much time as you need because as you say you dont want to go back to find out you are not ready yet, a phased return to work is good.  Might be worth asking ithe question f there is any sort of OH support that the company buy into or can provide

As Alibobs says, this is about you and your recovery from your treatment, you need to put you first, work will just have to wait, but it does sound like they are going to everything they can to help you get back to work when you are ready.

Sending you hugs

Helena xxx

[Alibobs]

Hi kaz just wanted to reassure you about sick notes and work. I've been off since November too and my sick note this time is up to the end of June. I have just been signed off by the rads onco but have yet to see the surgeon for a review. I have no intention of returning to work until I get the green light from the surgeon and my gp. I may yet ask for another couple of months just to make sure I'm fully recovered as seem to get tired more quickly now. Please don't feel guilty for putting yourself first. No one is indespensible and thd most important thing is your health. Take as long as you need. Work should wait!!! Best wishes 💗💗

[Portraitist]

Kaz

these things are sent to try us! Perhaps they can bring the food with them.

I’ve had a good day. Made a decision about further treatment. 

This morning I had a helpful letter from the endocrinologist I saw a couple of weeks ago confirming our conversation. It seems that Letrosol is out because there is a history of osteoporosis in my family. So Tamoxifen is on the cards but taking either will only benefit me by 1-2%. So it seems to me that it’s probably better not to take anything. I got away with the rads very lightly, unlike you, and didn’t even feel tired. I need to look after my partner who has stage 4 bowel cancer and is on palliative treatment. I can’t do that if I’m struggling with side effects. 

Luckily my cancer was caught early thanks to the screening programme and I’m very grateful for all the speedy treatment, even though I can’t say I’ve enjoyed it and it was hard to believe it was happening to both of us. At least I knew the staff already!

Its been really helpful being being able to chat with people on here while going through rads.

all the best to you all and to Helena for holding things together.

Liz xx

[twistie123]

Hi Helena,

You're so right about the sun making us feel better.

I phoned my manager this morning and he was fine with me just contacting him again once I have seen my GP who has already said that a phased return to work will be needed. I had an op on my foot a few years ago and was off for nearly 4 months and the Occupational Health kept in touch to see how I was recovering and they looked after my phased return to work but this time it sounds like we don't have their input at all now for some strange reason. My manager knows that I will be having the phased return and has just said I will need to go into work to see him and HR manager once my GP has signed me off to sort out my hours etc.

I might actually ask my GP for another sick note for a week or two as I really don't think I am fully ready to return just yet and the last thing I want is to go back to work and then go off on the sick again. I just feel a bit guilty that I have been off so long as I have been off since end of November.

Thanks for your reply and glad to hear that your mammogram results were good.

Kaz xx

[ladybowler]

Kaz

Good to hear that you had a lovely holiday, the sun really does make us feel better.  Keep in mind mate that you have only recently finished rads and it is going to take a bit of time to get over that before you can start to build up your strength.

With regard to your sick note I am sure that you will be covered as it is not your fault that you can not be seen until Thursday at the earliest, at the end of the day the doctor will not renew a sick note until the expiry of the last one, I think they can back date it to cover the couple of days in between but not until they see you, and you are not allowed to go back to work until they have signed you off anyway, so just tell your manager that.

Are they putting a phased return to work for you and have they done an occupationa health referral so that they can ensure they are looking after your health and wellbeing for now and when you return

Helena xxx

[twistie123]

It certainly is a bit of a rollercoaster! I got myself all ready to go out to do some shopping as all the family are coming around for dinner tonight for a late birthday celebration and my car has died!!! Oh dear these things are sent to try us!

Hope your day has been a bit better than mine Liz.

Kaz xx

[Portraitist]

Kaz

pleased to hear you’re feeling better. It’s all a bit of a rollercoaster isn’t it. 

Liz xx

[twistie123]

Thanks Liz,

I am feeling much better today, I think I was just tired and had a bit of the post holiday blues.

Kaz xx

[Portraitist]

Kaz what you are describing sounds very normal. One of the key things is to try not to avoid too much stuff because despite how it feels it actually increases your anxiety. This can be a viscous circle. Be kind to yourself and tell your BCN and ask about counselling. There should be a psychological service you can access. Best to tackle it before you find yourself avoiding seeing people. Tell your manager. If you work in a big organisation there will be an occupational health service who can provide support. We all feel overwhelmed sometimes. I’m a psychotherapist and I’ve certainly felt overwhelmed myself. It’s normal and good that you are telling people how you feel. Warmest wishes and a hug. Liz

[twistie123]

Hubby and I had a wonderful time in Lanzarote, the weather was lovely and it was so peaceful at the villa but only 5 minutes drive to the resort centre, definitely what the doctor ordered but now back to earth with a bump.

Before we went away, apart from the problems with soreness and split skin after the rads, I was thinking that when we got back I would be ready to go back to work but I am now having doubts about that. It all feels a bit daunting and I am not so sure I am ready now. The problem is my sick note runs out tomorrow and I can't get an appointment with my GP. I have to ring up at 8am Thursday to see if there is an appointment available for that day so I guess I will have to ring my manager at work but even that is a big deal and I have to psyche myself up before I do it! I feel like an emotional wreck to be honest and everybody thinks I am ok which makes everything worse. I used to think I was quite a confident person but every ounce of confidence has been knocked out of me, how ridiculous am I having to pluck up courage to go out of the house to the corner shop? I need to give my head a wobble I think, sorry for moaning again but it does help a little.

Kaz xx

[ladybowler]

Kaz

remember even a little bit of sunshine this time of the year can be very strong and burn without us knowing.  I spent 15 minutes in the garden today and my face is glowing!!

We are forcast some good weather mid week here in Birmingham woo hoo 🙂 🙂 xx

[twistie123]

Thanks Ali and Helena, got my factor 50 at the read but I think it might be warmer here! 

Kaz xx

[ladybowler]

Kaz

ooohhh how exciting have a wonderful time and make sure you put loads of sunscreen on xxxx

[Alibobs]

Brilliant Kaz have a fantastic time. Just what a girl needs!!!! 💗💗

[twistie123]

All booked, going to Lanzarote in a nice villa for a week. Fly out tomorrow just after lunch so I better get some packing done!

Have a good weekend everyone.

Kaz xx

[ladybowler]

Kaz

that is great and hopefully you can get something sorted out you so deserve it.

Nothing like a cut and colour to make a girl feel goodxxxx

[twistie123]

Thanks for all the replies about going on holiday. I rang my manager today and he said he would authorise a holiday for me no problem. Missed out through dithering on a lovely place in Sicily which is now no longer available so back to the drawing board and running out of time as hubby is due back in work Monday 23rd. On a plus side I had my hair cut and coloured today so I am almost ready to holiday, just chuck a few things in suitcase lol

Thanks for all of your support, you are all wonderful and I will keep you posted.

Kaz xx

[ladybowler]

Kaz

Oh I am so glad they are working xx

Okay so if going away abroad is not allowed, then going away in the UK should be, surely that is classed as rest and recouperation, as it is all part of the recovery process.  Doctors do recommend people having convalesence afer a serious illness after all.

I remember asking my boss if it was all right for me to go out for the day with a friend who had booked a lovely lunch for us, she laughed and said it was absolutely no problem all part of the recovery process spending quality time with friends.

Helena xxx

[ann-m]

Probably best to check Twisitie, my treatment fell at the end of the financial year, so I did lose remaining annual leave entitlement. I did check on this.
I can’t see why going away for a few days would be a problem in the interests of recovery etc, but booked holiday for a period of time could be an issue if it had to be explained.
ann x

[Alibobs]

To say!

[Alibobs]

Just wanted today I've been abroad twice since being on sick leave. They will also owe you your annual leave days whilst you are sick. So go for it if you feel up to it!💗

[twistie123]

Thanks Kerry,

Still not decided if we are going away. We did think about going abroad for a week but apparently because I am off work on sick leave that is not allowed so unsure if its allowed to go away in this country either?!? 

Glad all went well Helena and fingers crossed for good results. Thanks for recommending the Polymem dressings, they are fabulous, work just like magic!

Kaz xx

[Portraitist]

Kerryjp

Cabbage leaves do seem to be naturally the perfect shape to cup a breast! as well as providing some amusement. Hope it all goes well. I'm 9 days post rads and all seems to be well, just a little pink and a bit tender.

Liz

[Kerryjp]

Kaz

I'm sorry to hear you're feeling so floored after your rads.  But try to get away for a few days - you deserve a break.

Let us know how you get on.  Xxx

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@twistie123 wrote:

Well done Otter on finishing your rads.

I am now 10 days post rads and my skin has split underneath my boob so will have to contact either my bc nurse or the rads team tomorrow. The fatigue has somehow just floored me too, I slept for 14 hours last night/this morning and I still feel so tired so I think I need to up my fluid intake. Hubby is off work for a week after next week, originally he had two weeks booked off because we were going to have a two week holiday but I really don't feel up to it. We are now thinking of just going away for a few days but not sure whether it is a good idea. I don't know what to do for the best, just not feeling good at the moment. Sorry for moaning.

Kaz xx

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[Kerryjp]

I'm off to buy me some smooth cabbages!

[Kerryjp]

I start my rads on the 16th. 

I love the cabbage leaf idea!  Even if it doesn't work, it should make my hubby laugh! 

We live 50 miles away from our rads hospital (Exeter), so have decided to take advantage of cheap accommodation at this time of year and have booked a caravan in the area to minimise travel time.  I've already got severe CFS so didn't want to travel every day.

Good luck everyone!  😉 

[ladybowler]

Kaz

Thank you it did, a little uncomfortable but she was very gentle and actually adjusted the pads manually.

It will be about 10 days before I get my results xx

I do remember reading on here a couple of ladies recommending cabbage leaves to cool the breast down as well

Helena xxx

[twistie123]

I have heard about cabbage leaves when you have sore boobs from breast feeding but not for anything else.

Helena, I hope your mammogram went well today.

Kaz xx

[Portraitist]

It sounds daft I know but I read on one of the forums about using cabbage leaves inside your bra to protect the nipple and enable it to heal. People said they’d tried it in desperation and it worked. I guess it would have to be one of those smooth cabbages rather than a savoy! Apparently it’s cooling too. My nipple is sore and I was googling for tips and this came up! My partner gets very sore where her stoma bag rubs and I use duoderm which is a very thin colloid sheet. It’s brilliant for broken and weeping skin. You can get it on prescription or buy it on amazon.

[ladybowler]

Kaz

Thats great, apparently it works really well.  I used it as a barrier as the area around my nipple was so sore and it stopped it rubbing against my bra and clothes.

Sounds a lovely idea to go away for a couple of days.

xxx

[twistie123]

Thanks Helena,

I rang and spoke to one of the skin nurses on the rads team and she has faxed through a letter to my GP so I can get a prescription for the Polymem dressings. She told me to stop using any creams until it heals as well. 

I keep forgetting about increasing my fluids so I will have to make a concerted effort to do that.

I need to sort out my annual travel insurance as I have not informed them yet about my surgery and treatment for bc  before we book any holiday but I am quite tempted to go away even if its only for 3 or 4 days.

Thanks again Helena, you are always so kind and helpful.

Kaz xxx

[ladybowler]

Kaz

You moan away mate, that is what we are here for to support you through the good and not so good times.

Sounds to me as if you need to up your fluid intake as you say.  I still get periods of fatigue and when I look back at the day I would definitely say it is because I have not taken in enough fluid.

I would speak to your rads team as there is something called polymem they can give you to cover the broken skin which helps to heal it and your GP can give you a prescription for it if the rads team recommend you use it.

I would go away for a few days as you say as it will probably do you good xxx

[twistie123]

Well done Otter on finishing your rads.

I am now 10 days post rads and my skin has split underneath my boob so will have to contact either my bc nurse or the rads team tomorrow. The fatigue has somehow just floored me too, I slept for 14 hours last night/this morning and I still feel so tired so I think I need to up my fluid intake. Hubby is off work for a week after next week, originally he had two weeks booked off because we were going to have a two week holiday but I really don't feel up to it. We are now thinking of just going away for a few days but not sure whether it is a good idea. I don't know what to do for the best, just not feeling good at the moment. Sorry for moaning.

Kaz xx

[ladybowler]

Otter

Just a thought, when I finished my rads the team advised me to keep up with the exercise for a good month afterwards, which I did.  In fact there are still times now when I will do them if my shoulder is a bit stiff or tight. Dont know how that would work with your condition but might be worth considering, it just keeps everything a bit looser xxx

[Otter65]

Hi I finished my 15 session on Wednesday and so far the worst problem I have is a stiff and painful neck and shoulder but as I had a prd exciting condition that was expected

I used mainly E45 cream and the Aloe Vera gel a few times as yes it does stick to your clothes😱😱

Hope the cream arrives in time but don't worry it's an easy step in comparison to surgery and chemo

Good luck

🤗🤗🤗🤗😘😘😘😘

[Portraitist]

I completed my 15 on Easter Monday. Each member of the team came out individually to congratulate me. Ive been using double base gel throughout. I bought a tube which I took with me to each treatment and put on after the treatment and before I got dressed! I bought a tub of aloe Vera gel but it just made me feel sticky and my clothes stuck to it so I only used it twice. When I had my review the nurse gave me some nu-gel for some spots of reaction. You squeeze it on and it is supposed to promote healing. I tend to find it flakes off and then irritates my breast - which is pinkish and a bit sore but not too bad. I’m now four days since the last treatment and wonder what the next ten days holds. However, it hasn’t been too bad and it does seem that creams differ according to your individual skin type. The oncologist recommended double base gel and it certainly worked for me. You can get it without a prescription from chemists although some assistants don’t always know you can just buy it. 

Good of luck to everyone in their onward journey. 

Liz x

[Alibobs]

I am so sorry you have had an upsetting experience. My gp didn't prescribe any creams at all and I just used diprabase and radiance gel which I bought online. How many sessions are you having? Must people cope well with the treatments and very few suffer adverse effects to.ghdir skin. I hope this us the way it goes for you. Try not to worry I'm sure you will feel much better about it all once they start. Sending you hugs 💗💗

[Jobey68]

Hiya, I completely understand how stressful this is for you and the last thing we need when facing treatment is any unnecessary upset but please don't worry about any adverse effects from radiotheraphy , most people get very few problems and nothing more than a warm boob, I only used a bit of Aqueous cream during treatment then a couple of days of Aloe Vera towards the end. 

I was lying in the sun on holiday 3 weeks later with no problems at all Xx 

[Fenouillard]

Hello everyone

I am about to start rads. I just need to share my frustration and unhappiness at the treatment I have received from Boots Chemists. My GP ordered R1 and R2 for my radiotherapy treatment over 10 days ago and despite two visits to my local Boots they still hasn’t arrived. After waiting almost an hour today I established with the help of one of the pharmacy assistants that the products are available but the Accounts department at Boots simply hasn’t paid for them and the supplier won’t release them until they get the payment. The pharmacy assistant was wonderful but it took her over an hour to establish what had happened back at the area office. I am just so upset that I could have been treated in this way when I need these products now urgently for radiotherapy that starts next week. I’ve decided to cancel the order from Boots and go to another chemist, whom I saw today and who assured me he could get these products within two days. This just shows you that large organisations just couldn’t care less about their customers. 

Sorry about this rant but this situation really stressed me out when I am concerned about my reaction to rads anyway. I’m allergic to Aloe vera and get horrible nettles and insect stings so I am concerned I may get burns. Not getting these creams on time really put the lid on it. 

F

[Otter65]

Thanks Helena

Spent the afternoon caughting up with a friend that I haven't seen for 2 months

It was great to focus on something else

Yes I will keep up with the Aloe Vera gel and E45 as still a bit sore and red

Looking forward to being able to go swimming again and start losing some of this chemo weight and get fit again

🤗🤗🤗🤗

[ladybowler]

Otter

Woo hoo, ringing the bells for you mate, congratulations, hope you are doing something nice to celebrate.  remember to keep up the regime for the next couple of weeks as the rads will still be taking effect.

Helena xxx

[Jencat]

Well done Otter! x