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Hi all,
I am hoping someone might be able to assist me in an ongoing concern I have. My wife (37) was diagnosed with MM in Aug ‘17. Following various treatment schedules she had a SCT in Jan 18 and a second in Nov 18. Following the second transplant she has caught every bug under the sun as well as developing lymphoma. She has spent approx 2/3 of 2019 in hospital with 4 admissions to itu over that period.
We have a 7 y/o daughter at home who is struggling with not having a mum home and visiting the hospital is not easy as it is approx 45 mins away and there are obvious restrictions on children going there.
Does anyone know of any support networks that exist that I can get my daughter into to help her? We are in Portsmouth. Have been to the GP but a further referral came to no fruition. Am currently self funding weekly counselling sessions for her. She is regularly upset about her mum and I’m concerned the counselling alone isn’t enough. School is supportive and aware of the situation also. Thanks.
Mike
Hi Mike,
I am sorry to hear that your wife is struggling with infections at present. I hope that they can get on top of things soon for her at the hospital. It must be very hard for you all as a family. You are trying to support your wife and daughter and look after yourself too.
Do you have a Maggies Centre at your hospital, or locally. If you do they offer support to children and young people whose parents have cancer. They can take part in Kids’Days which apparently run quarterly at some centres. You can find information on their website. http://Www.maggiescentres.org.
All the best and keep on doing the great job you are doing for your family. I hope you can find a way forward to help your daughter at this difficult time.
Best wishes
Judy
Thank you for your post on the forum, my name is Sarah and I am one of the Myeloma Information Specialists here at Myeloma UK. I am glad to see someone has responded to your post, however I thought I would make some further comments below, which I hope you find useful.
I am so sorry to hear about the difficulties your family has been experiencing since your wife’s tandem stem cell transplantation. I can only imagine how hard it must be for you to support your wife and your daughter through such a difficult time. It’s important to note that it is completely natural and not uncommon for your daughter to be responding in this way.
One of the most useful things you can do to support your daughter is providing a listening ear, encouraging her to talk about her feelings and being attentive to her needs, which you seem to be already doing. It is also important that you look after yourself as well – take support from family and friends and try to make time for yourself when you can in order to recharge.
It is completely understandable that your daughter would be upset and struggling with her mum’s ill health. As her father, it sounds as though you are doing everything you possibly to support your daughter and also trying to get some additional support that she might also benefit from at this time. I would encourage you and your wife to speak to her team at the hospital again about your daughter’s emotional needs. Sometimes a referral to a social worker can be helpful – they may be able to offer additional suggestions and/or arrange further support to help your daughter cope and manage her emotions whilst her mum is in hospital – so please do speak to them again and stress the challenges your family are experiencing at this time, and the concerns you have.
I wonder if it would be useful and/or possible for your daughter to use facetime or even share voice notes with your wife whilst she stays in hospital – it may be a way to help your daughter feel close and near to her mum even when it is not possible for her to visit her in person. Other things that might help with being away from her mum could include perhaps your wife recording your daughter’s favourite story or book and then your daughter could read along/listen to the recording before bed time.
It may also be an idea to speak with her current counsellor about ways you can continue to support your daughter at home. In the meantime, I have made some suggestions below of some organisations that may be able to help with information, support etc.
The Osborne trust offers free emotional and practical support for children of a parent with a cancer diagnosis and undergoing cancer treatment. Help if offered freely to children aged 16 years and younger with a parent with any type of cancer all over the UK.
Home start offers support to families going through a wide range of difficulties including illness. It might be another useful resource to tap into.
Shine Cancer support may be a great organisation for your wife. Shine Cancer Support exists exclusively to support adults in their 20s, 30s and 40s who have experienced a cancer diagnosis. They may have additional information and resources for you both.
Don’t forget the kids – they are based in London however, they have a mail out service for those of whom the peer support group is not accessible. Which consists of children’s books and information for anyone supporting a child whose parent is living with Cancer. It might be a useful resource, even if it just for some practical advice and shared experiences.
Anna Freud National Centre for children and families offers a range of specialist treatments and assessments for children, young people and families. They are closely link to Child and Adolescent Mental Health Service (CAMHS) and I have found contact details for the Portsmouth area – which you can find HERE
Sometimes a local hospice can provide additional support for a family affected by cancer, and/or may be able to signpost. It is important to note that the care and support services that hospices might offer is not only limited to end of life care. Patients and families at other stages of illness can also sometimes access and benefit from the support they can provide, such as complementary therapies, a range of activities and counselling. I have done some further research into hospice services in your area. Rowan Hospice offers (along with other services) a ‘drop in’ ‘Living Well Centre’ which supports people who live in Portsmouth and South East Hampshire who are living with a life-limiting and progressive illness. They support people aged 18 and above, regardless of diagnosis and extend their support to their friends and family members during any stage of the illness. It also offers a ‘meerkats service’ which provides special support to children and young people when they have a family member receiving care through their facility. This may or may not be something you wish to explore but if you would like some further information please click HERE. They also have a wide range of complementary therapy access that you or your wife may wish to explore – you can find out more about that HERE.
I hope this has been helpful but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk
Kind regards
Sarah
Thanks both of you for your response. Some useful things to think about.
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