Feeling sad and lonely

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  • Hi I'm not great at sharing things but I'm so overwhelmed right now.  My husband had his op 2 weeks ago which went really well. Unfortunately the wound started to leak after the stitches were taken out and he's been admitted to hospital (an hour away) they have done a lumbar procedure to drain it and let the wound heal but he has to stay in until at least Thursday on the drain.  If it doesn't work he will need another op.  

We saw the consultant today who told us that he had removed the whole tumour and next step would be chemo tablets and 6 weeks of radiotherapy every weekday. He confirmed its g4 glioblastoma and is aggressive. He wouldn't give any timings just gave us the average but explained it can be less time or more depending on the treatment. 

My husband and I are very positive people and know we have to face this but I'm now worried that this drain complication will delay treatment as it needs to be fully healed before they start.  

I'm juggling trying to see him in hospital along with looking after my 11yr old and a puppy and feel pulled in all directions.  My family don't live close by and my friends all work so I don't have a lot of practical support.  I just feel so lonely and sad, I need to stay strong for my husband and keep things normal for my son but it's really hard and I just lie in bed at night crying.  I do get up each morning with a positive oulook and get through the day but night time is hard.

I'm hoping once we get past this setback that we can get on with the treatment and have some nice times again as a family.  

Its helped writing this down, and I guess tomorrow is another day xx

  

  • FormerMember
    FormerMember

    Hi Jobo so sorry to hear you are feeling like this, its really hard i know. For now focus on the positives, Surgeons got tumour out, and will move to next treatment. My hubby had his out 6 weeks ago and has just done 1st week chemo and radio, so its normally a few weeks after surgery. I know you are concerned about the setback but he is in the best place to get this sorted before chemo and radio and the surgery is already done.

    We have not asked for any timings and will not, who knows what the future holds? That aside I understand you have to face it and you are doing that, every day. I think the sadness and lonliness starts from diagnosis, recognition that life will be different, i feel like that too. But for now focus on keeping your son in his routine, get through each day and dont look far ahead. Its hard being at the hospital and juggling home, work, other responsibilities, dont put too much pressure on yourself.

    Let your emotions out when you need to, its all part of the process and it sounds like you are doing great, trying to stay positive. Wishing you and your family the very best, stay strong you can get through this xx

  • HI Jobo

    Oh I just want to reach out and give you a huge hug right now. I remember feeling much the same in Sept/Oct 2020 when we were in a similar situation - with my husband it was multiple blood clots in both lungs that put him back in hospital a few weeks post-craniotomy and pre-6 weeks of treatment.

    Its perfectly natural to feel overwhelmed. Please don't underestimate the emotional toll a diagnosis of GBM4 takes on everyone involved. We've ridden this emotional roller coaster for 27 months so trust me, been there, seen that and bought the t-shirt. Feeling lonely and sad is allowed. Tears are most definitely allowed. The strongest most resilient people are those who show their emotions and don't bottle them all up.

    For what its worth, my husband coped really well with the 6 weeks of treatment after his setback. The blood clots didn't delay things. He had no real side-effects from the treatment until about week 4 when fatigue hit but he was still up and dressed and going about his day to day routine every single day. The fatigue lasted for about a month then he got back into his usual fitness routine. He's a marathon runner and fortunately the position of his tumour hasn't caused any physical symptoms. I wholly appreciate that everyone is unique here but he was able to get back to full physical fitness and ran a personal best of 3:15:28 in the Manchester marathon in April 2022 and ran the London marathon in Oct this year in 3:33:34. 

    We were given an initial timeframe and in hindsight that really is a double-edged sword. I won't say what it was here but it passed a very long time ago.

    I find writing things down is extremely helpful. I journal regularly. Seeing the words written down sometimes removes the fear and the power of them. it can be a great way to reason out something that's preying on your mind. I'm glad it helped you to reach out here. This is a really safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it. Friends and family are great but they don't always really understand. Around here there's always someone to hold your hand and offer that virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Promise me you'll take time for yourself to keep your wee batteries charged, even if its only 5 -10 minutes to sit quietly with a coffee and a book. You need to look after you too as I'll not lie, this is a tough gig. One step at a time, one day at a time and you'll get there.

    Sending love and light and hugs. Stay strong. Remember to breathe.

    Wee Me xx

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

  • Thank you so much, I am mostly ok during the day- getting on with things, I'm not very good at sitting still! Its at night when my mind goes into overdrive.  Sorry you are going through this too, it really is a rollercoaster.  Glad your hubby has started his treatment,  that's our next milestone. X

  • Thank you, that's made me cry but also lovely to hear about your husbands fitness, my husband loved running and I know his goal already is to get back running, I might even join him! You are amazing having dealt with everything over the last 2 years, I never sit still so find it very hard to relax but know I need to look after myself to stay strong.  Having to look after my son keeps me focused on eating properly, keeping routines etc. Thank you for the virtual hug and sharing your experiences.  Xx 

  • Hi Jobo

    I am so sorry to hear your news. It is such  a horrible shock. We don’t have much family and I am a single parent. It was horrible having to have a conversation with my son that I never wanted to have knowing that I might not survive the craniotomy.  Then when you get told it’s stage 4. I told my consultant that I didn’t want a time frame as I didn’t want that date in my head. I am trying to stay positive and just setting myself short term goals . I wouldn’t worry about the delay as I had quite a gap before starting the radiotherapy and chemo. 

    I made the decision to be open with friends and colleagues and have encouraged my son to tell his place of work so that he could get support. Use your friends, mine have been wonderful. Apply for any help you are entitled to, you will need all the help you can get.

    Take time for yourself. We all have our sad days and I just go with it now and accept it. I also go for counselling every couple of weeks which is really helpful.

    Good luck.