Never knew the journey would be this hard.

  • 9 replies
  • 134 subscribers
  • 551 views

Hi  all I have been reading different group posts and have found them very useful in dealing with the problems that my wife's Head and Neck cancer as thrown at us she was first diagnoses with tongue cancer following a dentist check up in February 2023 and fairness to all hospitals involved it as been a roller coaster ride non stop.

My wife's biopsy showed cancer on the right under side of tongue so all tests, x rays, scans etc completed and on 19th July 23 was operated on which was a 12 hour operation which went well, and she returned home after 9 days eating was a problem and all food went in the blender, when we met the surgeon for follow up he confirmed the tongue cancer was completely removed and tongue rebuilt using a skin graft from the arm, thyroids removed clear, 3 glands from right side of throat through dissection of the neck 2 clear and 1 showing active cells. This resulted in my wife being passed on to Chemo / radiotherapy team who set up a plan of 6 chemo and 30 radiotherapy treatment plan over a 6 weeks period which resulted in us having to travel 3500 miles over the 6 weeks which took its toll on both of us as my wife started suffering constant sickness after 3 weeks treatment despite different anti sickness tablets, also my wife was referred to hospital by triage line twice and once remained at hospital where she received treatment due to low blood pressure. We were both aware that sickness could be a problem and tried small meals with little success but managed to complete treatment but my wife lost considerable body weight during this period. 

Finished treatment 29th September then on 1st October had to phone Triage line who advised me to take her to local hospital as she was struggling for breath after being sick again after having tea,

After spending 24 hours in A & E they decided she was suffering a chest infection, and was transferred to oncology ward where she remained stable after 6 days although still struggling with sickness after food and breathing was still troubling her. On the 7th October 23 I was that concerned for my wife's health I called our daughter who travelled 250 miles that day and arrived to see her mum just before end of visiting.. I was called to the hospital on the 8th October to be told they had to incubate my wife  and had put her on a ventilator in ITU ward where she as been for the last 12 days she is off the ventilator, but they had to preform a emergency trechropy on her on Wednesday last week. They also confirmed my wife had a flu infection which they are still treating but is now under control.

So here I am 3 months from the start which was a good start  and progressing well to constantly checking my phone for that call you do not want to receive, I am coming to the end of my 9th week of hospital trips every day, 6 weeks on her treatment and 3 weeks sitting by hospital bed and it is really begin to take its toll on my wife and myself we are both 68 and this is a struggle to visit and keep a smile and positive attitude while in ITU, it is also impacting on my work which as been on hold for 12 weeks and counting, also on our children's life's.

The hospital staff have been great and say my wife is improving but I struggle to see it as she sleeps a lot during my visit's and yes I know a lot of this is from the Chemo / Radiotherapy treatment, and yes I know rest is what my wife needs now, but neither of us really knew that this journey would be so very cruel.

I just need to see the light at the end of the tunnel which seems to have totally disappeared at the moment. I wonder if any other out there can relate to this which was so good going terribly wrong . Thanks all for being here to help.

  • Oh  

    I am so sorry to hear that you both have had such a rough journey. I myself was hospitalised for 4 days half way through my radiotherapy to have a nasogastric tube fitted as I couldn’t swallow.

    Your wife is hugely early in her recovery. Radiotherapy has a residual effect for two to three weeks after treatment end and coupled with her chest infection she is bound to feel really awful. 
    There is light at the end of the tunnel please believe that. Recovery is a marathon of good days and bad, of steps forward and steps back. Taken a day at a time we all get there and so will your wife. I was 68 when I finished treatment and I am a whisker away from the magic five years. 
    I too spent practically every day of radiotherapy in a nausea and morphine haze. My husband drove me 50 miles each way through Welsh country lanes to hospital for six weeks. He was my rock and he saved my life as much as my hospital team
    I can remember how poleaxed and exhausted I felt at the same stage as your wife. Slowly slowly things got better and by 12 weeks I had really turned a corner. 
    I really do know how you both feel 
    Stay with us. There is lots of help here. 
    There is an excellent essay written by psychologist Peter Harvey about recovery from cancer. It’s worth a read and resonates with a lot of us 

    www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Travis12

    Just wanted to say hello and that I am so sorry to hear about the challanging journey you and your wife are on I can only imagine how you feel .Im at the beginiibg of ny own Cancer story but having spent 10 days in hospital recently I know how difficult// worrying this is for everyone

    Stay on here ……..there are some amazing people whio support , share and help to lift your spirits at your lowest points.

    Sending you all a virtual hug and hoping she turns the corner on the road to recovery

    Debbie

  • Hi Travis12

    Im so sorry that you and your wife have been, and are still dealing with so much.

    You very very brave family.

    I can’t offer any advice as my husband is starting treatment next week, so we have a way to go yet, but we send you all our love & well wishes.  Stay strong. 

    HeartpulseHugging

    Dave & Ange x

  • Hi Travis. The others have given you a run down so won’t repeat myself. The weeks after chemo radiotherapy were the worst weeks for me it’s a build up if everything that’s been thrown at her combined with a flu infection. She’s poleaxed as you are , my hubby drove me every appointment snd 35 radiotherapy sessions a 70 mile journey dso we do know how tiring that is. There’s light at the end of the tunnel it’s a marathon not a sprint sometimes the tunnel has a few bends in if where you can’t quite see the light. But hopefully will soon straighten out. 
    hugs to your family. 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Travis

    I am so sorry to hear about the hard time you and your wife are currently going through. The treatment alone is hard enough but then adding on another layer of a virus and chest infection is really hard for you both. Recovery from treatment can take a while even when there are no complications. Keep the faith, things will get better take it a day at a time.  Your wife is in the best place possible at the moment getting the care she needs. It definitely is a marathon and not a sprint. I was hospitalised half way through my radiotherapy treatment with dehydration so It can be demoralising when you are feeling at your lowest ebb and it is just as hard for the carer.

    Sending you a virtual hug.

    Lyn

    Sophie66

  • Hi Travis12 sorry to hear your wife has had such a hard time with her treatment, it is a very hard journey, for both patient and carer. The chemo and radiotherapy is brutal and does effect people in different ways. Hopefully they will now have her condition under control, and she will start on the road to complete recovery. I wish you both all the very best.

    Regards Ray.

  • Hello Travis 12, I'm so sorry to hear what your wife and you and your children are going through. The 2-4 weeks after chemo-RT are the worst, I was hospitalised for 11 days and all I could do was sleep, and that was without any infection. Your wife is so lucky to have you and your steadfast support. Please look after yourself as well, and maybe think about having a lovely holiday together when all this is over? Sending love & luck

    Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story

  • Can I thank everyone who have added their personal experiences and how you each deal with your circumstances, this as been a great help to my own personal mind set which hopefully going forward will help me to provide the right care to my wife when she returns home. I will update on her progress later when I have more time but she is being more positive about the situation which was very uncertain 2  weeks ago. 

    Thanks once again for all your kind words and positive thoughts they have ben a great help and much appreciated.

    Steve Heart  

  • Thanks Steve. You take care of both of you. You need to be kind to yourself too

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge