Hello, I start 6 weeks of radiotherap... - Acoustic Neuroma ...

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Hello, I start 6 weeks of radiotherapy at end of this month.

Snips1960 profile image
15 Replies

My journey to hospital is around 85 mins and I would like to know of anyone in similar situation found it was OK to drive myself to/from hospital daily. Also I work for myself from home (admin'y type from home). How did you find mental ability to work. Any other tips and advice gratefully received ☺️.

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Snips1960 profile image
Snips1960
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15 Replies
Bizzyhazel profile image
Bizzyhazel

hi there snips .

Sorry toread that your going to start. Radi o treatment .

I couldn’t drive for any of my treatments prior to my ol this aug and still don’t feel I’d be safe enough . I was involved in a rta in feb and sustained whiplash .

I’d see how your first visit of radio goes and take it from there .

Try and keep positive and keep moving around as much as possible outdoors .

I’ve two cockers that still need the exercise in a daily basis .

One of them had 6 pups a fortnight ago so believe it or not they are helping my recovery I don’t feel my head pain and tinnitus noise the same .

Good luck sorry I can’t be more helpful . X 🌸🐾

Snips1960 profile image
Snips1960 in reply to Bizzyhazel

Hi Bizzyhazel - thank you so much for your reply and advice. I am so grateful. I am taking everything on board.

Maybaby61 profile image
Maybaby61

I hope it goes well for you I am having my operation on 20th of this month x

Snips1960 profile image
Snips1960 in reply to Maybaby61

Wishing you every luck with your operation Maybaby.

Smiffy65 profile image
Smiffy65

Hi SnipsI had 6 weeks of daily radiotherapy starting in December and ending in January at Addenbrookes hospital which is a 60 minute journey from home and personally I couldn't have driven it, especially with the weather conditions which included snow. My consultant also checked that I had someone to support me with the traveling ahead of the treatment starting. On the journey there I was ok but on the journey home I felt very 'spacey' and always fell asleep on the journey home. I was offered meds for nausea as well which I didn't need as I wasn't affected too much but that but it's another consideration to be aware of.

I met someone during my treatment who was transported to their appointments by a charity engaged through the hospital so can you ask your consultant if there is a similar facility that you could use?

I hope that this is the case and that your treatment goes well x

Smiffy65 profile image
Smiffy65 in reply to Smiffy65

Also forgot to add that the hospital scheduled my daily radiotherapy appts for around 1pm each day so that I wasn't trying to travel in rush hour traffic so worth requesting specific times that would make treatment easier for you

Snips1960 profile image
Snips1960 in reply to Smiffy65

Thanks so much Smiffy65 - it is so wonderful really to get these replies. I do sometimes feel rather alone with this silly tumour, but hearing from everyone is incredibly helpful. I have absolutely taken on board your and everyone's advice, and have arranged for a lift there/back for #1 zap, and see how I go from there. Unfortunately I do not have anyone to do any of the other visit, so will endeavour to drive myself, until I feel too tired, and then I will ask for the hospital to arrange transport. How I fit in work around this is too much to think about right now, so I will just take it day by day ! Wishing you every luck with your treatment. Tx

Smiffy65 profile image
Smiffy65 in reply to Snips1960

Hiya. Could you ask your consultant to arrange your appointments for around 2pm each day? that way as you are self employed you could do your work in the morning where you feel fine before you set off. Then post treatment you can drive home pre rush hour (and when not too dark) and just rest? The hospital will give you your 6 week schedule in advance with all your times on it so ask the question before they set your schedule. You should get free parking too so ask about that as well. Good luck x

Alison_L profile image
Alison_L

Hi Snips. I'm starting 5 weeks of radiotherapy in January (I had my pre-start MRI yesterday), and my doc said that the main side effect will be tiredness, so although you may be perfectly capable of driving yourself for the first few days, you will have to see how it's affecting you. Only you will know whether you should continue driving or not. Do ask about patient or charity transport, and see if any of your friends & family can take you once a week. That way you only need 5 people, with a couple of spares. I've got to travel from South London to West London (Royal Marsden), so driving isn't really an option for me - it's a case of bus, train, tube. I've got some lovely friends, as well as my husband, who have offered to accompany me.

Good luck x

Snips1960 profile image
Snips1960 in reply to Alison_L

Thanks Alison so much - I will be driving myself for #1 zap, and then after that see how I go, and yes absolutely will take advantage of hospital transport if I have to. Good luck with your treatment and wishing you all the best - Tx

Sunsets90 profile image
Sunsets90

Hello, I had 6 weeks of daily radiotherapy starting Nov and finishing not long after Christmas. I had to travel just over an hour away to Cheltenham Oncology. They were fantastic and they also provided transport for those that needed it. I would definitely ask if it is something that would be of help. Personally, I was lucky in that I would go for radiotherapy treatment at 9:30am and then head to work (just a few roads away), for the first 4 weeks, so I didn't have to drive home straight after. Next two weeks I had family drive me - just took a Christmas special hot choc and they were happy to provide transport.I would recommend trying to keep active where possible and keep engaged with hobbies/take up a new one. I took up Photography as it helped me remember things I'd done/places I'd been.

Good luck with your treatment 🙂

Snips1960 profile image
Snips1960 in reply to Sunsets90

Thanks so much Sunsets90 ! Yes i will be having someone take me for 1at zap, and then see how i go after that and i will have to take advantage of the hospital transport i am sure as time goes on. January will be a long January !! Very best of luck for your treatment . Tx

Alison_L profile image
Alison_L

Hi Snips, how are you getting on? I’m just waiting to go into no 6 of 25 at Royal Marsden. No side effects so far, but it’s tiring getting bus+train+tube to get here!

Snips1960 profile image
Snips1960 in reply to Alison_L

Hi Alison, all going fine thank you ! Today will be zap 13 of 30, and so far so good, no fatigue. I have been able to drive each way so far on my own, although I have a standby friend ready to step in at short notice. It must be tiring to have a disjointed journey changing buses/trains etc. One day last week it took me 2 and half hours to get there as there was an accident on the motorway - sooo stressful - i was more worried about keeping the nurses waiting, but of course they were so nice. Normally it's around 4 hours each day, but of course it just needs to be done so I must not grumble. How large is your AN? Mine is around 2.5cm.

Alison_L profile image
Alison_L in reply to Snips1960

Glad you’re getting on ok. Mine is about 1.7cm, including a cyst. The lodger’s lodger!

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