Reaching out on the forum for the first time to get your thoughts on massage and alternative therapies (how to access them). Mum was diagnosed with Acute Myeloid Leukaemia, just over a year ago and underwent 4 rounds of intensive chemotherapy ( I think she experienced most side effects associated with the treatment and was in intensive care for a short period too) Having been discharged as an inpatient after 7 long months, in April, she has started complaining of aches and pains, she didn’t have before. Before her diagnosis she was a very active, confident 71 year old but understandably this diagnosis and treatment has knocked her for six. She’s asked me to look into massage and acupuncture for her (I’ve cleared it with her Haematologist & would massage her gently when she was in hospital but this is now beyond my scope!) I’m now stuck as to how to find these services on the NHS, or indeed how to access them privately. Does anyone have any experience in this area? Any advice, kindly received 
Hi @Zizzi and welcome to the forum. Gosh, it sounds like your mum has had a long and hard journey - no wonder it has knocked her for six.
I know my hospital have their own service for complementary therapy which you had to apply for. I wonder if this is something her hospital offers? Have you got a contact at the hospital you could ask.
I hope you are ok. A tough journey for the patient but also for those supporting them x
Thanks so much for your reply @Nichola75. Her team have been amazing during her stay as an inpatient but sadly we haven’t really been offered much in the way of after care. I made enquiries into some counselling for mum, so she could get some things off her chest (perhaps things she wouldn’t feel comfortable talking to me about and at the time, they told us it was a four months wait, so I made other arrangements!) We are at the hospital every six weeks or so for bloods and then a follow up with her Haematologist but we’ve told them about mum’s concerns and much of what she expresses gets dismissed as ‘to be expected’. Mum hasn’t been assigned a specialist nurse and she’s often hesitant to contact the Day Unit because they are always so busy! It’s very hard to make peace with, she’s put up with so much, I really don’t want to see her have to put up with trivial aches and pains when they could be alleviated with some regular massage. Next time we are there, I will inquire again but I think because she is no longer an inpatient, she doesn’t qualify and waiting lists are very concerning. So grateful for your reply- thank you x
Hi @Zizzi . I know waiting lists are really longs for things like that as they are so popular, which is often a shame because when you need it you can’t afford to wait.
Did you find a counselling service. If not Bupa are working with Macmillan and offer up to six free sessions. Mine started within 4 weeks. I’ve put the link below.
https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support.
These sessions really helped me as like you said, it just gave me a space to offload as I worried about upsetting family and friends - not that they ever said that I did.
The Blood Cancer Uk helpline is great as well - for your mum, but also for you if you have any questions.
How to contact Blood Cancer UK | Blood Cancer UK
It’s frustrating that’s it’s just ‘what’s to be expected’. That doesn’t mean she shouldn’t be offered any support. I would definitely ask again when you next go.
Lastly, I accessed counselling when I wasn’t an impatient and it was a couple of years after treatment so it may be worth putting your mums name down. If she doesn’t need it when it comes up she can just decline.
Please keep us updated on how you get on at your next appointment. Take a note pad and pen and get them to tell you everything that’s available and if they don’t know they should be able to point you in the right direction.
Take care of yourselves x
Hi @Zizzi thanks so much for reaching out to our forum.
You say your mum was diagnosed just over a year ago. and she was discharged as an inpatient after 7 mths.
I expect this treatment and side effects has knocked her for six, I am not surprised, it sounds as if she and her body have been through so much it will take her a while to build back up and her aches and pains to subside.
Baby steps etc.
@Nichola75 has given you great thoughts.
Perhaps your mum might ask her GP for local services.
Has your mum’s local hospital got a Macmillan or Maggies Centre that might be able to help.
I had counselling privately that helped me. I could not get it on the NHS. There is the BACP (British Association of Counselling and Psychotherapy) register, it can be expensive, but you can search locally and check each counsellors’ specialisms i.e . cancer patients.
Again with massage and acupuncture perhaps look for practitioners with expertise in working with cancer patients.
Any relationship is between the 2 people honestly discussing their needs v provision.
She might be interested in Tai Chi or yoga classes
Blood Cancer UK have some meditation techniques and handy hints Blood cancer: mind and emotions | Blood Cancer UK
You might be interested in this thread Makeover magic - Living with and after blood cancer - Blood Cancer UK Forum
Walking gets me fresh air and helps me build up strength and with aches and pains.
Perhaps you both need to look after yourselves and be kind to yourselves, you have both been through a lot.
Thank you @Nicola75- I did the same, accessed a few counselling sessions for mum via Bupa but to be honest, I think she wasn’t really ready for counselling at the time and probably still isn’t as she’s very private and finds it difficult to share personal feelings with strangers but there’s no pressure and if mum decides she’s ready to try again, I will access them again for her. I think as English isn’t her first language, it’s hard for her to articulate herself in the English language- only last week we saw another Wellbeing workshop advertised in the Macmillan centre located in the hospital and I have signed her up to this (at her request, of course) and it encourages writing thoughts and feelings on paper and this might work better for mum. I was grateful we got a space because as you say, these workshops and services are so few and far between, with high demand, it can be hit and miss. I’m always in attendance at mum’s Haematology appointments, so will definitely ask again and see if there might be other avenues of support we can try. I’ve leaned heavily on Blood Cancer UK- they have been fantastic, reassuring and non-alarmist every time I have reached out to them and of course, the forum is now proving just as valuable. Thank you again, take care, Annie x
Thank you so much @Erica - yes indeed mum’s whole being has been through the mill at break neck speed and there was and still is a lot to digest and manage. She was a great walker before her diagnosis and I’ve found the weather has a huge effect on whether mum wants to go for a walk ( I offer but some days the motivation simply isn’t there and we leave it for another day) She is seeing a physiotherapist via the GP and she really tries to keep up the little exercise regimes they give her, even if we don’t go out I spot her doing them against the wall etc! I think counselling is a fantastic tool for some but I don’t think it was for mum when we booked them, maybe the timing wasn’t right, or perhaps, she wasn’t in the right headspace and I mentioned to @Nichola75, English isn’t mum’s first language, so articulating and expressing herself can be challenging ( We found this when mum was in hospital where the medics would often turn to me to fill in the gaps of what she had expressed!) There is a Macmillan centre in the hospital but staffing is a bit erratic and to be honest, I’ve never seen it manned, though I have spoken to them on the phone. I will continue searching for Oncology qualified massage- even though it’s gentle massage, I do want a therapist to be familiar with how someone who has undergone chemo might feel/want. ‘Baby steps’ is the name of the game- I just need mum to start playing it! Thank you for your sound advice/ links- I will be taking a look and studying our options further.
Hello @Zizzi
Thank you for posting and I can see that our brilliant forum members have given you some great suggestions. I would also find out if you have a Maggies Centre near to your Mum as they can give emotional and spiritual support.
I would aslo recommend Look Good Feel Better as this charity support those who have had cancer treatment with their body image and confidence.
I do hope this helps and wishing your Mum well in her recovery.
Kind regards
Gemma
Do you have a local hospice?
My local hospice provides Complimentary therapies to help live with cancer
I found reflexology beneficial along with their mindfulness classes
I also have physio there too.
Thank you @GemmaBloodCancerUK it’s been suggested Maggies Centre are a firm source of support, sadly there isn’t one that is very local but will reach out to them too- (I’ve been meaning to for a while and have been side tracked!) Warm wishes, Annie
Thank you @2DB - this is helpful! I’ll do some research and see if there is something similar near us- mum loves acupuncture and never refuses when I offer to massage her feet, so Reflexology sounds right up her street! I didn’t realise there were so many other therapies on offer- at least if one style doesn’t work, there are others to try and you aren’t limited. Best wishes, Annie