Hi everyone, I am new here. Sorry and ramble and lots of questions. I hope this is ok and thank you for reading. Any thoughts, advice or anything would be greatly appreciated.
My dad has stage 4 head and neck cancer. I am his full time carer. My dad was diagnosed with cancer in June and in July he had an massive operation to remove the cancer followed by 6 weeks of daily radiotherapy. We thought it was positive and that the cancer had not spread, but unfortunately in January we found out it had metastasised. He is on immunotherapy but not sure this is working. Next dose tomorrow. I have asked the question about doing immunotherapy and chemo together but we have been told that this is not possible in England as the law does not allow it. Is this right? Surely this cannot be the case!!!! Need options. He is so scared and so am I!
My dad has deteriorated so much in last the couple of weeks, from being able to walk to the shops to now being in bed. He struggles with sitting up as his head feels too tights and heavy apart from being weak as he has not been able to hold is feed, liquid and meds (he is tube fed) but hoping we are turning a corner (still early days). Is there a chair anyone can recommend or anything I can do to make his life more bearable? I have asked for a OT referral but apparently my dad does not meet the criteria.
I am hoping this is just a phase and he will get stronger again. If he does am hoping to be able to take him to Italy (one of his wishes) can anyone advise on a good travel insurance that is not going to cost an arm and a leg.
Also, I have two children and they do know that their granddad has cancer but I also think I need to have a chat with them about how unwell he actually is and the possibilities. When is the right time, when is it too soon? Conscious that one of my children will be shortly doing his A levels and my 15 year old is very sensitive. How do I prepare them?
I am my dad's main carer (I have had to move in with them to do this) as he is tube fed I have been told that the district nurses are not able to come in support with feeds and meds and because of the strong meds he is taking that carers are not possible. It is fine. I can look after him, however what happens if I am unwell or any respite (I have been doing this since August - which I totally don't mind but would be nice to spend some more time with my two lovely boys - not that they would necessarily want that!!!! :-) ) What is out there, how can we get help? Work have been amazing but it is getting more and more difficult to work and look after my dad! What should I expect? How can I prepare? What do I need to do and know?
Finally, am I my last question (for now), power of attorney. We are currently doing this in England but also need to do it for Italy or is there a way to do one and make it applicable to both countries?
Thank you for reading. :-)
Hi TickyB and a very warm welcome to the Macmillan Community but sorry to hear about your dad’s diagnosis.
A cancer diagnosis like this can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot……. I have a completely different type of cancer and treatment journey.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you look to join and post in our…….
……. support group.
This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your dad and indeed yourself you may benefit from joining and posting in our……
Supporting someone with incurable cancer (If this is applicable)
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
Hi TickyB
I hang out in the Head and Neck Cancer group Latchbrook has already linked. Patients on immunotherapy/chemotherapy combos do better statistically so I don't know why you were told it's not possible in England.
Chemotherapy for metastatic head and neck cancer is particularly vicious so maybe his team have concluded that it might harm him irreversibly more than the IT. Why don't you have a word with his CNS.
You should know whether your father's cancer has responded after the next scan
I would explore your local hospice for respite care to give you a break and to cover any eventuality should you be unable. Hospice is not just for end of life. Many patients go in for a short time to get stabilised and to give their carers a break
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
