Oesophageal Patients Association
3,673 members2,214 posts

Half way through 3rd cycle!

Well it's been a while since I last posted.

Husband is doing really well, we are now half way through his 3rd cycle of chemo. We are on the home straight. Again very little to report to be honest. Minimal side effects, apart from when he is on his steroids - he's a right grumpy git!. No sickness or upset tummy or anything. He seems to be a lot more fatigued this cycle, but I suppose that's just the cumulative effects of the chemo. Lots of snoozes during the day and that seems to sort him out. He's has achy sore hips since he was started on g-csf injections, but he only has those for 10 days and as soon as the injections stop the aches stop too.

He is eating well and he's maintaining if not putting on weight which is great. 14 stone was the magic number, and although he's been close he has never fallen below that. For me that still remains the magic number. Thankfully with it coming in to the festive season there are lots of high calorie, tasty goodies to tempt him taste buds so he can graze on those during the day when I'm at work.

In some ways I can't believe where the time has gone, probably because I feel like I'm wishing the time away. But chemo is almost done (finishes 18th December) then that gives us plenty time to get him fattened up and prepped for the operation which we are still expecting to be January sometime. We'll find out during cycle 4 when his rescan dates are and when he's be scheduled for the op. Hoping we can get away for a few nights in between, but my work are being nothing short of dicks (excuse the language) so it will depend if I can get time off or not.

And thanks to someone on here I looked further in to financial help available to us and he has been awarded PIP which is a great help and it got backdated for 6 weeks. It's not much, but we are very grateful as it has taken some of the money worries away for a wee bit.

Thanks for reading and thanks again to everyone who has taken the time to answer my questions, no doubt there will be more as IL day approaches.

L

9 Replies
oldestnewest

Hi Lucy,

I'm glad to hear that things are ok although it sounds as if you are fattening up your husband for the Christmas dinner! My husband did quite well on his chemo other than some hair thinning and fatigue - I have to say though that it didn't shrink his tumour that much, although I suppose it rounded up any stray cancer cells (well, we hope).

I'm glad you were awarded PIP - I work at a jobcentre and know how hard it can be to find any benefits that can be paid if one of a couple is working - I take it he has looked into Employment Support Allowance (ESA) ? He would probably only qualify for the ESA based on contributions - and only if he has paid in the relevant NI contributions. This is only paid for a limited time, so I expect you may already have looked into this.

Do get away if you can (meanies in work! - do they not understand how important some quality time is) - it might be a while after his operation before you can do this. I also hope that they give you some carer's leave when he comes home, as it can be quite a job to start with - if not, try and rope in as many friends and family as you can to baby sit, provide meals and company.

Best wishes to you both,

Elaine

3 likes
Reply

Hi Elaine

Thanks for your reply. You're right we are on "mission chubster" as his daughter has named it. I think she's looking forward to having a part to play in this whole business which is good as I think she's felt like there been nothing she could do. She's only 17 and lives with us.

I'm not entirely conviced that the chemo is shrinking the tumour as towards the end of the cycle he struggles with solids again, but as you say it will mop up any stray cells floating about. That's what the MDT plan was hen I asked them what they hoped to achieve with chemo. Mop up and possibly shrink.

Your also 100% correct about the benefits system. He's currently only on SSP so was a huge financial drop. We had no idea about PIP or anything, he wasn't even going to apply as we had already been refused tax credits because it was based on last year's earnings when we were both working fulltime. But PIP has been awarded so we are very grateful.

We worked it out his SSP will finish midway through his recuperation after his operation so I guess he will go on to ESA after that. We'll cross that bridge when we come to it. Unless you can tell me anything different to that. I have no clue of how the benefits system works!

Unfortunately I've had to use my carers leave to attend appointments with my husband so I won't be allowed to apply for that either come operation time, again I'll sort that out in time though.

Thanks again for taking time to reply. Really appreciate it. 😁😁

1 like
Reply

Hi Lucy - do you mind me asking how old your daughter is, and if she works? If you have a family member who can care for your husband (35 hrs a week, including any night duties), and who either doesn't work or earns less than about £110 pw, they might be able to claim carer's allowance - have a little look at GOV.com if you can, to see the full qualifying conditions . Carer's allowance is currently worth £62.70 a week. It can also depend on the rate and type of PIP awarded to your husband.

Best of luck to you all.

Elaine

2 likes
Reply

Hi Elaine.

She's 17 and still at school.

I wok full time for the NHS so although I do the majority of the caring I earn over the threshold for it.

Reply

Sorry - I should have read your first post properly. It's a pity there isn't anyone eligible to claim CA. I can't honestly think of any other relevant benefits but will keep you in mind in case I hear of anything.

I was very lucky with work as they were very supportive and didn't hound me when I had to go off with stress (which really was genuine, as the least thing set me off). Things have become somewhat harder over three years so I'm not so sure I would be so well treated now.

All being well, your husband won't have any complications, will be out of hospital in a reasonable time and have a good recovery which will make life much easier. (fingers and everything else crossed) x

Reply

Hi Lucy.

Glad to hear that you're husband is doing quite well on the eating front. "Operation Chubster" made me smile.

Shame on your employer being difficult about time off. My daughter's employer is the same so she has been unable to attend any appointments with me. She is an only child and we are very close. She has been struggling at times since my diagnosis but they have been very unsympathetic, even to the extent of harassing her about sick days. She has a certificate from the doctor for all her absences!

Good luck with the rest of the treatment.

Sending hugs to you both.

AM x

1 like
Reply

Hi Lucy

this is great to hear. People really worry about chemo so it is very good to have some positive (well; nearly positive) stuff about it. I was lucky. I had five chemo days before my op and I was OK. I slept most of the time during the chemo itself and had few side effects. I'm now four and a half years on and doing OK. It wasn't easy and it's not much fun on friends and family but I am still here. Keep in touch

Haward

2 likes
Reply

Glad to hear it’s going well. Another one ticked off the list. X

Reply

Great news :-) My Dad didn't struggle too much with pre-op chemo either until right at the end when he got sore hands and feet. It will be great if you get a break from treatment over christmas so you can relax and enjoy it (and get him fattened up ;-) ).

Hope things continue to go so well for you, keep us posted! My Dad has now finished all of his treatment (about 6/7 weeks ago) and is feeling so much better, his weight is going back up, eating my Mum out of house and home and beginning to exercise again so stay positive, there is most definitely light at the end of the tunnel!! xxx

2 likes
Reply

You may also like...