Week 32: Thursday 29 June - Wednesday 05 July 2017
This has definitely been the week of the paperwork...!
Between being on the phone to DWP for in excess of 3 hrs, and then on to the GP for 10 mins, the net results appear to be that I am eligible to apply for ESA payments in lieu of statutory sick pay, I 'may' qualify for PIP allowance since cancer has affected my daily living, Mum may qualify for carers' allowance in the future if I go downhill, and my GP has assessed all my impending surgeries and now signed me off for another 7 months.
To be honest, I found the whole thing quite overwhelming as I have never had to claim benefits before and despite DWP telling me what they think I should be applying for, I also then have to go through a disability assessment. The thing is, I don't actually feel disabled, so don't want to claim, but they insist that I go through the process.
As far as I understand it though, the ESA payment is in lieu of work paying me Statutory Sick Pay, so whatever I get awarded, I need to inform work and they deduct that value from the salary they pay me... quite rightly, I am not allowed to make a profit whilst off sick. (Although I do have to say the letter from work is somewhat clumsily worded!)
However, the PIP allowance is not means tested and replaces Disability Living Allowance... even though I don't feel disabled! But the issues of me being hospitalised, being so ill through chemo, fatigue when I can't get out of bed or walk more than 10 mins, and indeed, when I have limited movement post surgery supposedly all contribute to the assessment... 😢😢😢 I definitely have mixed feelings about all of this...
And then I got thrown a curve ball by the GP. I had a phone appointment to get a fit note. I only needed an extension from the current one which ended 30 June to cover chemo treatment, to the date of surgery on 24 July. However, upon checking my notes and going through the fact that I have this first major surgery, possibly 2 revisions, and then the oophorectomy, she then wrote me a fit note declaring me unfit for work for the next 7 months!
Don't get me wrong - for sending onto the DWP and making things nice and simple and hassle free - this is great. But to be told now that it will be another 7 months off work seems huge.
Now - it may very well be that I don't need 7 months, and in which case I will be signed back to work as soon as I am clear. But wow. What a thought. And brings home how many procedures I actually have to go through 😱.
(But thinking positively, I am concentrating on being cancer free, no risk and model-like body 😀😀😀.)
Managed to see a few more people this past week - another day at work, caught up with family and many more friends... also managed to get my car serviced as well as getting my tyre replaced that had a random screw in it (goodness knows - it was a bloody big screw as well!!!).
There was a small saga with the car service, but the funny bit was when I actually dropped the car off...
I was so tired, and it was 7am (having been awake since 4am), and basically a man in a big fluorescent jacket knocked on the window and asked if I was dropping off keys. I said yes, and he took my keys and my name, and then I left to go home. I was half way home before I kind of realised what I had done and had a minor panic about me giving my keys to a complete stranger. I had visions of the police turning up and looking at me whilst saying "so Mrs McNeill... you gave your keys away voluntarily to the person who stole your car...?" Thankfully the garage texted at 10am to say car was ready for collection - phew!!!! That's the real danger of chemo fatigue / chemo fog brain 😔!!!
Anyway, after a further wee snooze, managed to go great guns on all types of home admin - got my dogs to vets for their annual vaccinations, tidied out paperwork and packed for my holidays... as well as fitting in a few pampering sessions too 😜. (Much required lol!)
I know I am definitely now keeping uber busy deliberately - however have a friend's book to review and the planned mini breaks will hopefully allow me to relax and take my mind off stuff.
Finally this week - my oncologist was meant to discharge me.... however it seems I am not quite finished with the chemo unit... 🤔.
Instead I have to go back every 6 months for a bone strengthening infusion for the next 3 years. However on positive note it should only be 15 min infusion and only 6 treatments 😀.
(This is required due to my future oophorectomy operation putting me into surgical menopause, meaning lack of hormones to protect bones from things like osteoporosis - and will also protect my bones against bone cancer too.)
We did have another discussion about participation in clinical research trials, but given my impending surgery, this is really not a go-er just now... (I don't fancy introducing more risks to complicated surgery, and the possibility it may affect wound recovery!!!)
I did kind of feel like it was a bit of a hard sell to be honest - it went from them saying that they appreciated I had had a very intensive aggressive chemo regime, and I had been quite sick... through to them saying that although they hoped that they got all the rogue cancer cells out via the chemo, there may still be a chance of developing a secondary cancer... and participating in the research trials may be of great benefit to avoid this possibility.... so definitely a bit of an emotional battle there. But mum was there to make sure I didn't feel pressured into signing up for something I wasn't ready for... so I am having another meeting after surgery is complete to see if I will participate at that stage. Don't get me wrong - I do want to be able to help others - I just don't want to be sick again or jeopardise my surgical recovery... we will see after Xmas! 🤔🤔🤔
Another funny though... the breast care nurse also told me that in preparation for my stay in hospital I have to go buy proper Bridget Jones B-I-G pants and granny-style nighties... makes me laugh as I may technically have a supermodel body but will be covered up like the wolf in 'Little Red Riding Hood' 😀😀😀. (I DO have an overactive imagination lol!)
But a great positive - they fit, and give me a new bra whilst I am in hospital - that has to be the best type of personal shopping experience ever!!!
The other thing I got given yesterday was a really good article about what happens after cancer. I am adding the link in here in case it helps anyone else... even for those who have not had cancer themselves, it may help support those in your life who have had it... 😀
http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Anyway... the next (almost) week is all about rest and relaxation - am really looking forward to getting away with my parents... pretty sure there will be funny stories and observations along the way... those will be captured on the Mrs Mac blog 😀 - I love people watching, and I think under the cover of floppy hat and big sunglasses I will be able to capture a few holiday sagas hopefully!
So... till next time when I may have more updates on my bolshy cancer fight... ciao just now 😋 xx
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