Wife/Carer - cancer ?

Bluebell21 · May 10

Lets hope so. @Wibbles Fingers crossed it is good news and you hear very soon.

I hope your wife is recovering well from her op.

Take care.

Wibbles · May 16

She had a call yesterday - she's been given the All Clear - but for some reason, they still want her to have radio therapy - 4 days in a row with 5 minute radiation sessions at a hospital 50 miles away - she is currently deciding whether to go or not !

Yet again - its down to cost and hassle - I am trying to talk her in to going but have no idea what she's going to do !

In my opinion - yes a taxi will cost around £200 for each day = Total £800 - but that's a small price to pay

What are the likely side effects ?

ps Its NOT chemo therapy

Bluebell21 · May 16

Hi @Wibbles that is great news that your wife has been given the all clear. Her doctor must think the radiotherapy is necessary if they have asked for it.

I can understand your wife not wanting the hassle of the travelling and the cost to get to the hospital but if it was me I would have this treatment just to finish everything off.

Link for side effects of radiotherapy.

https://www.nhs.uk/tests-and-treatments/radiotherapy/side-effects/

Take care.

Rosie_Scope · May 16

That's great news @Wibbles! The costs must be difficult to think about, but as Bluebell says, if the doctors think it's necessary to keep things controlled it sounds like it would be worth it in the long term for peace of mind.

Hope you're both feeling a little more relaxed now after all that you've been through.

Wibbles · May 20

She really doesn't want to go for Radio Therapy !

The added problem is that whilst the radio therapy is 59 miles away - a taxi is feasible - but she keeps on going on about how I should be driving her - but I gave up driving, 2years ago - my shoulders keep freezing up !

The consultant wants her to get to the original hospital who did the op (35 miles away) for a pre-radio therapy meeting - to start at 9 am - HOW IS SHE EXPECTED TO DO THIS ?

This has changed her mind about the whole thing - she spent the day on Monday in tears - saying "I wish that I had never agreed to any of it" - it's heartbreaking for me too !!

She has given up on life.

Bluebell21 · May 20

I am so very sorry that the Radiotherapy your wife has been asked to have is causing so much upset for you both. @Wibbles

Would it help your wife to speak to Macmillan to see what advice they can offer. She has been through a big operation and is probably still healing and adjusting to that.

https://www.macmillan.org.uk

I really hope you can sort something out, but at the end of the day it is her decision.

Please take care.

Wibbles · June 6

She starts Radiotherapy on Friday (4 sessions - 4 days apart) but needs to spend over £150 on taxis per day to get to the hospital because the NHS won't provide transport for her ( apparently too much savings)

She will be on her own for the 60 mile journey and at the hospital itself so I really feel for her ….

Bluebell21 · June 6

I hope everything goes well for your wife @Wibbles It is disappointing that it will cost her so much money to have her treatment.

Take care.

Wibbles · June 6

https://forum.scope.org.uk/discussion/comment/1130231#Comment_1130231

I hope that I didn't give the impression that I am not happy with her treatment - it is just the "add ons" that need some tweaking !

Bluebell21 · June 6

No @Wibbles you did not give that impression. It has been a worrying time for you both and it is not yet finished. Hopefully after this latest treatment you will both be able to have some much needed rest and your wife will recover and live her life again, without all these visits to hospital.

Take care.

Wibbles · June 7

She's sent me to Coventry again - because I overstepped the mark and took the wrong decision to contact a taxi firm without first checking that she was happy….

She is now not talking to me - last time this happened - it lasted almost 2 weeks !

Mary_Scope · June 8

Sorry to hear this @Wibbles, it's very hard when somebody doesn't talk to you. Do you think it will last 2 weeks again?

Wibbles · June 19

To add to my wifes difficulties - she is due at the hospital (55 miles away) for radiation treatment again this afternoon - the taxi which cost £150 return journey has let her down - the taxi company phoned with an hours notice to let her know that the driver has phoned in sick… So I managed to find another company - at £415 to take her !

To say that she is angry is an understatement !

Kiki23 · June 19

https://forum.scope.org.uk/discussion/comment/1132976#Comment_1132976

Sorry to hear this Wibbles. Its a shame that hospital transport were not able to arrange this for her beforehand. I know in London, this type of service would have been offered on the NHS, or atleast reimbursement for travel costs due to the nature of treatment, and you not being able to help take her due to your own disabilities. Im sure she would have fit the criteria for this

Wibbles · June 19

https://forum.scope.org.uk/discussion/comment/1132977#Comment_1132977

No we tried and because she's not on any means tested benefits - she doesn't qualify

I wonder what would have happened if she didn't have the £415 for the taxi ? she would have missed the EXTREMELY IMPORTANT appointment.

https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/ Says the same thing

ie) if you have over £16k savings then you are not entitled - even if you are on low income and have cancer !

Its absolutely disgusting treatment of someone who has cared for me (on carers allowance (just £80 per week for a 60 hour + week) - for over 20 years without a single days break.

This is number 3 of 4 Brachytherapy sessions !

She had to fight just to get a Medical Exception Certificate based on diabetes - rather than cancer - that just gives her free prescriptions !