My 64yr old husband was diagnosed after incidental find in March with multifocal HCC & main tumour of 8cm. Other than a nagging pain & full feeling he was fit & well. We were told surgery not an option but TACE maybe. TACE then ruled out. Chemo & immunotherapy was next option & he was referred to oncology. Waited 5 weeks to be seen & another 3 weeks for 1st cycle. Oncologist told us he would no longer be seen by liver specialist & from here on only oncology. Told with treatment, if successful, prognosis could be 12 to 18mths up to 5yrs ! 2nd cycle was delayed due to raised LFTs (never told which), but levels settled & 2nd cycle given. A scan before 2nd one to get up to date picture showed tumours had all doubled in size ! Up until then, apart from weight loss & poor appetite my husband has been fit & well, still working & living normally. He takes regular exercise, i s supplementing meals & increased protein intake to between 120&150g a day. Last week (before 3rd cycle) in appt at oncology we were told "picture on outside does not match picture on inside"; because husband is otherwise fit deterioration will be sudden & quick & if there was anything we wanted/needed to do to do it now ! Chemo would continue for now as it was felt it still had value. We came away devastated. As I suspected (ex nurse) ascites in belly are now present & we were told they'd be drained beginning of this week which would make him more comfortable & able to eat better but because of this his cycle next day would be without immunotherapy due to infection risk. At chemo next day, someone hadn't noted this (we've experienced so many 'cock ups) so sadly immunotherapy was run through for 15mins before my husband realised & it was stopped. This has meant delay until end of the week for fluid drainage & now he can't be 'fitted in' to have fluid drained for another week! We still have no clinical nurse specialist- our hospital doesn't use Macmillan nurses, despite repeated requests, phonecalls & messages & the only support/contact we have with anyone is a 3 weekly appt with oncologists trainee assistant clinical nurse. We do have phone number for ward for if feeling ill or new symptoms. In the last week my husband has become more fatigued & lost more weight visually but he's still working & trying to live normally. Trying do anything we needed/wanted to is proving difficult due to appts, chemo & now the delay with fluid drainage. I'm worried this is all suddenly moving fast & it's very scary. We thought, from what we were told, we still had time. We feel so alone with all of this. Where is all the support you read about & see in the media ? We've certainly received none whatsoever, just 20 minute appts once a month.it feels like we're just on a production line, being moved through an inadequate system until an inevitable end. Nobody seems to care & you're just sent off to somehow blunder your way through to the end. Like many others, our life is totally devastated. Sorry for the long diatribe but at 4am full of fear your mind just spirals.
Hi Modge, I am so sorry the way you feel and understand your frustration, if it’s just someone to talk to then MacMillan have a service called Community Buddies, you have 12 weekly one hour calls or home visits if there is one local to your home, to talk to someone about anything and everything, they are not professionals but volunteers who have had or been effected by Cancer. They have had training for liaising but they are not medically trained.
They can also refer you for further support with say BUPA personal support or Benefit support, you can contact them online for a referral
or call the 0808 number below
I hope this may help and that you can get the support you seem to crave
Take care both of you
Tony
We will move mountains to help people with cancer live life as fully as they can.
We'll do whatever it takes. For information, support or just someone to talk to,
call 0808 808 00 00 or visit www.macmillan.org.uk
Onwards and Upwards Laryngectomy and OC survivor
Lead Volunteer for Hampshire MacMillan Buddy Service
Hi Modge
I'm sorry to read of all that you and your husband are going through. Can I suggest that you ring the Macmillan helpline, this is the link to contact
https://www.macmillan.org.uk/about-us/contact-us
They are excellent and will help you with money and benefit queries, will support you and will signpost you to further help. If the hospital does not have Macmillan specialist nurses this may be a factor in your feeling of being cut adrift.
I can see that you are a member of the carers forum and you will get a lot of advice and support there.
A x
Thank you for reply. I have spoken to macmillan helpline several times & they have been helpful; im also aware of the BUPA scheme. I am already seeing a therapist (from before this all started) but I think I'm just surprised that the hospital/health services have offered us nothing & youre left having to search. We were told at chemo pre assessment appt that there were things they provided but when we asked, we were directed to our GP which is less than useless. I fear our area is very short on support services. It's another drain on an already draining situation to have to be ringing around searching for support. Why do we have to do that ? Thank you again for reply
Hi
I was diagnosed with a cancerous tumour on my liver 18 months ago and must say that my experience has been very similar to yours, I felt completely abandoned by the hospital as they had decided not to treat the cancer at all, just letting it get bigger until it kills me.
Although macmillan have been fantastic if I was abs desperate to talk to someone there was no actual advice to act upon. My oncologist is just switched off completely, my gp would love to help but can't.
Those 4am worries are familiar too and then when 7am comes round and I need to go to work I am exhausted.
I decided at Xmas to stop engaging with the hospital and although they asked why still could not offer any kind of plan, tips, advice or hope. I just live every day in hope that one day my blood tests will point to treatment being available.
If you really are not being heard start a formal complaint with your hospital, they will be eager to see you then, you would be able to express everything you have said in your post and might even get some practical advice.
I am so sorry to hear your ordeal, my thoughts and hopes are with you
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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