My husband has been ill now for a year and was diagnosed with the above in May. In June he had an operation to remove as much of the tumour as possible, but we were told it could not be fully removed, and his life expectancy could be anything from 18th months to 2 years. 1 in 10 apparently can achieve 5 years. 6 weeks radiotherapy followed the operation and he has now had 2 months of chemo (1 week in each month). His chemo has now been suspended due to low platelets. After a conversation with his macmillan nurse this afternoon, which I was not aware of until this evening, he has been told his platelets are now at 16 from a reading of 24 last week. If I had been aware of this conversation I would have asked so many more questions than my husband and it is very frustrating that they will only talk to him. I understand the reason but he is not himself, he can't always remember the salient points and gets confused/ Sometimes it seems I'm getting secondhand and not totally accurate information from him. Is there anything my Macmillan nurse can do? Can she talk to me? Perhaps I should speak to her..........
Hi and a warm welcome to the Macmillan Online Community, a Community that no one really plans to see themselves joining, and so sorry to hear about your husbands diagnosis.
With regards to talking with his Macmillan Nurse you should arrange this as you do need to get all the information. Do talk with them and discuss the best way for all the information to made available.
During these challenging COVID times where only the patient is in an appointment I would be recording the discussions so they can be played back or set a phone on speaker phone during the appointment so you can listen in and ask questions.
I also know that some hospitals are allowing a family member in during appointments where the patient is not able to ‘get’ everything that is said.
A cancer diagnosis brings a lot of confusion, stress and many questions but talking with other people who are on the same type of journey helps a lot.
The Community is organised into support groups so you may want to have a look at our supportive Brain tumours group as this is the place where you will connect with others walking the treatment journey both as a patient or family.
Follow the above link then choose ‘click to join' or ‘join’ when the page opens.
You can then introduce yourself, post questions or just join in with existing discussions by clicking on 'reply'.
You may also find our Carers only, Family and friends and Supporting someone with incurable cancer groups a great benefit as you will connect with others supporting family through their cancer journey.
Its always good to talk and the Macmillan Support Services provides lots of information, support or just a listing ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available.
You can use other methods to contact our Support Services (LINK) and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Wishing your husband, you and your family all the very best xx
HI Fizzy1965, I hear you! I'm in a scarily similar situation with my husband. He was diagnosed in late August with a grade 4 Glioblastoma, had an awake craniotomy in early September and completed the 6 weeks of oral chemo/radiotherapy on 20 Nov. He is very secretive about information that has been discussed between him and his chemo nurse to the point it left me feeling the situation was unsafe. He was withholding information from me, refusing to allow me to accompany him to the appointments and forgetting to ask salient questions. The trigger for me to try to intervene to an extent came when I discovered he was binning his steroids instead of taking them as prescribed. I contacted the nurse direct and explained how I felt the situation was. That helped me to gain a clearer understanding of the situation. So, from experience, my advice would be to ask your questions and raise any concerns. I'm trying to encourage my husband to put a POA in place at least from a welfare perspective to make things easier for all concerned as this journey continues.
Hang in there. You're not alone in facing this challenge .
big hugs
Wee Me
x
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