Hello - chat about what chemo cycles look like please?

Hi Pog

a warm welcome to the group. Sorry to hear about all that you and your husband are going through.

I can empathise with you here. My husband (then 50) was diagnosed GBM4 in Sept 2020. He too had his tumour debulked and went through the 6 weeks oral chemo/radiotherapy with minim al symptoms but he decided that he didn't want any further treatment after that. A decision I have had to respect. So I can't comment on how much the chemo on its own would have impacted. This is a safe supportive space so I'm sure one of the others will be along shortly with their experience of that treatment cycle.

As for the travel insurance, have you tried All Clear Travel Insurance? We managed to get cover for my husband through them. It wasn't cheap but they agreed to cover him as long as the doctor confirmed he was expected to still be with us 6 months after our return date. To give you a rough idea of cost, we were approx £400 for a week in Paris.

Please remember that the MacMillan helpdesk is here to support too and may be able to assist with both questions. The number is below. 

I hope this has been of help. It's all a bit of an emotional minefield to navigate through. Sending you a huge virtual hug.

love n hugs

Wee Me xx

Hi there 

Hi there, my husband was diagnosed June 21, had the op that apparently removed a decent amount of the tumour, then the 6 weeks of chemo and radiotherapy. The next round of chemo 5 days on 23 off for 6 cycles he found it really easy most of the time, lots of walking and strenuous gardening only feeling yucky on days 7/8 then great till next month. Unfortunately after showing improvements in early mri's after the 5th cycle the tumour was growing again and was offered a different chemo with 2 drugs, 1 type on 1st night then 10 days of another (believe its a combination therapy that involves an injection as well but the injection wasn't needed or appropriate) with around 5 weeks off, after 2 rounds of this treatment a much tougher treatment making him quite ill an mri showed the tumour to have grown considerably and no more treatment available. Currently waiting and wondering what happens next. Main thing is this next set of chemo for your husband should be easy any hopefully helpful for your husband. Its really good you are considering holidays my husband at 63 has retreated to the house with no interest in travel, hes just too fearful of covid, an unnatural fear i believe caused by the tumour 

Love and hugs 

Thanks Lornaann - that's really helpful.

I can see that my husband may retreat, and its me that keeps pushing forward. We visited a hospice as my husband wants to have all the ducks in a row - although he isn't near this time - but the take away message from the consultant was, 'you walked in here well, and you don't want to find in 6 months time that you look back and think of what you could have been doing'. This shook him into some activity. 

I asked the oncologist about covid risks too - as I have booked theatre trip. Whilst he discussed the risks of being in an enclosed space, he suggests taking all possible precautions but continue to do things for wellbeing. Also he said that none of his patients has become extremely unwell with covid. 

I empathise with the 'what happens next' as reactions are so different for everyone even though the treatment plan is the same. Its like being in no mans land all the time. 

All good wishes to you - and positive vibes.

Thanks Wee Me - I have seen your helpful and supportive posts. I will certainly try the insurance you suggest. I think its being on a chemo cycle that's the issue - but will try, as well as the others you suggest. 

Thanks 

Hi there Pog

With your husbands attitude there is no reason why you can't both travel, finding an in-between time a few days after the 5 days of chemo, my husband continued to work 20 hrs a day at home and that seemed really beneficial keeping contact with colleagues and very good friends. But could rarely encourage him out for meals, concerts opera etc were an absolute no no. The covid thing and imagining himself extremely vulnerable have only got worse despite now having had 5 vaccinations/boosters. When his elderly father visits he keeps him outside, the fear of covid although completely out of balance and reality. Ofcourse due to the tumour you cannot reason with or reassure him. At least our sons and family are allowed in as he trusts and relies on their company although toddlers and babies can get too much. Main thing is even if travel insurance is difficult there will be plenty of healthy strong days to travel in the UK. 

Good luck and enjoy 

Hi there. My Dad is 73 and was diagnosed last June. After the op, 3 weeks radio and chemo he now just finished his 10th chemo. His oncologist is saying to go to 12 cycles and maybe more. Dad has been incredibly fortunate in that he doesn’t get sick. However, he does have chronic constipation for a week and gets tired particularly in the morning. But we throw everything at it and he comes out fighting again. My Mum and Dad have just been travelling for two weeks around Ireland and Wales which was a complete tonic for them both. He has the results of his scan this coming Friday and hopefully the next chemo. He is my complete miracle at the moment after the initial diagnosis last year. I know everyone is different but I do hope you get to go on your travels. You certainly both deserve it. 

Hello Pog,

Sorry to hear of your husband's diagnosis.

My husband was diagnosed with GBM4 in January and has had debulking surgery, 6 weeks of radiotherapy & chemo, then a month off then 3 of 6 chemo weeks with the 23 days off in between. Fortunately he has been fine, just a little tired on the week after the chemo.

We've been on two recent holidays; one to the Lake District in June walking with friends ( not quite the 12 mile hikes we used to do but more gentle ones now!) and have yesterday returned from a week in Cornwall. It gives us something to look forward to and takes our minds off the reality of the tumour.

Although we're used to travelling all over the world, we are content to travel in the UK at present and have both benefitted from a wonderful change in scenery. Don't let me stop you if you do want to go abroad but with this good weather the UK can also be great!

Supportive hugs to you